Follow You, Follow Me: Our Journey

To My Valentine

2012-02-14T12:35:00.003-05:00

It is 1984 and I am working two part time jobs as I try to find a full time job after graduating college. I was working at both Friendly's Ice Cream and Channel Home Center. While at Channel, I became close with a group of people and we became like family. We would work hard and go our frequently on the weekends. It was the 80's so it was night clubs, dancing and drinking. It was an amazing time to be in my 20's. In this group of people was one in particular that stuck out to me. He seemed very mature for his age and he was cute. There was a core group of four - 2 guys and 2 girls that would spend the most time together. We were two of that group. In the larger group of friends, we had no idea that some thought we were a couple long before we were. Our connection was obvious to others, but it took some time for us to realize that we had something special. We were hearing rumors that we were dating even though we weren't and we kind of laughed it off...until one night when we were out and heard Bonnie Rait's song "Let's Give Them Something To Talk About". We looked at each other and laughed, as that song just fit our situation so perfectly. He looked at me and said, "so, do you want to make those rumors true?".
And so began Mike's and my relationship. We've been together 27 years, married for almost 24. Never in my wildest dreams did I ever think our future would wind up like this.
Back on that night, which I can remember perfectly, I was just interested to see where the relationship would go. I had no idea that Mike was four years younger than me - and I took ALOT of grief for that. Of course, Mike's friends all thought it was great - dating an older woman. Of course I got the "cradle robber" comments. There was even a brief moment when I thought, maybe this isn't such a good idea. Of course, I decided to stay with Mike.
And stay I did and I wouldn't change a minute.
I know the name of the monster that will eventually take Mike away from me, but I know in my heart of hearts I will have done everything I could for him. That's all one can ask from the love of their life and there's no doubt in my mind that Mike would have done the same for me.
Happy Valentine's Day Mike - I love you. TOGETHER FOREVER.

Simple Truth

2012-02-10T14:30:00.002-05:00

I posted this on Facebook, but I felt the need to post this simple truth here also:

In my entire life, I don't think I have shed as many tears as those that have been caused by Alzhiemer's Disease.

24 Hours

2012-02-09T16:17:00.002-05:00

In 24 hours: got a notice of Deposition for Brandon's car accident last year, Mike's aide called in sick, Mike's breathing heavy, he's got the beginning of two more sores (on his back by ribs) and found out the aide that had worked the last 2 Saturday's cannot work with us anymore.
How much can one person take before they give up?
I know things can get worse, but can't I get SOME kind of break?!

Medicaid Mess

2012-02-03T15:09:00.003-05:00

I hadn't written about this previously because it upsets me SO MUCH.
Mike has been on hospice for about 3 years. We originally started with another hospice, but they decided to "dis enroll" Mike on a weekend when we needed them the most (Mike had been sick with fever for 2 days, one of their nurses had come to our house over the weekend and by that Monday Mike was very ill and on his way to the hospital. Still they felt that his condition was "stable" and felt he didn't qualify for hospice any longer. After that hospitalization, on his return home, we changed hospice agencies).
Way back when Mike was admitted to hospice (through both the first and current agencies), I remember they seemed to be confused because Mike would now not only be a Medicaid patient, but also a Medicare patient (hospice is covered by Medicare). Through the years and as Mike's condition deteriorated, his hours approved by Medicaid had increased. By the time he went on to hospice, he was approved for 10 hrs/day 7 days a week. He was actually approved for a live-in, but we have no place for them in our home. Hospice (Medicare) provides up to 4 hours a day of aide services. Hospice provides 4 hours a day 5 days a week. So, it was decided that Mon-Fri, Medicaid would pay 6 hours and Medicare would cover 4 hours. Medicaid would cover the weekends.
All was going well (or as well as can be expected when you deal with aides and home health agencies) until about 3 weeks ago when the nurse from hell entered out home.
Mike was due for his re-certification for Medicaid, as is done once a year. In the past we never had any issues. The nurse from social services would come to our house, confirm that Mike needed the care, had me sign a few papers and was gone within 10 minutes. The issue of payment for services and how it was handled was never an issue until...........
Nurse Ratchet came for certification and raised holy hell. She came into our home looking for trouble and quite honestly, I felt as though she was accusing us of stealing services. She questioned EVERYTHING!!! She kept asking over and over again how the payments were made. By the third time I was quite annoyed. I simply looked at her and said, "My job is to not figure out how payments are made. That should be an internal job between agencies. My job is to take care of my husband, raise my children and keep my house running". Still she never relented. At one point she even went in to observe Mike and asked that I lift up the blanket (to keep him warm) so she could "see his arms". She followed me around and at one point, when I was soothing Mike after he coughed, she yelled at me to come back into the dining room to continue to go over paperwork with her. I knew when she left that things were going to get screwed up and I was right.
The next day I started getting calls from everyone - home health agency, social services and hospice -all asking ME about the billing issue. Really? Did you see my husband? Do you think I care about how they split up the payments? Is medical billing now MY job?
Another week went by, and still I hadn't seen any visible problems. Then last Friday at 4pm I get a call stating that our home health agency who had been servicing us with aides on the weekend for 5 years, could no longer provide coverage for Saturdays and now hospice would be providing coverage. We had JUST gotten used to the aide working with us on Saturdays and now they were pulling her for someone completely new to Mike and our family.
Now, you can say we are lucky that at least we still have services and you would be correct. The issue I have is that Saturdays were my catch-up day. Time to do work around he house, run errands etc and now they are up in the air as I to be concerned each week as to whether I would have coverage. They found someone for us last week, but as I sit here now at 3:33 p.m. on Friday afternoon, I STILL have not gotten confirmation that we will have an aide for tomorrow. I'm note sure if the aide that came last Saturday didn't want to come back, maybe they didn't ask her back. Maybe she wasn't available, but whatever the reason is, things are still uncertain.
Mike will be the one who loses out here. The aides always seem to get him to eat and drink better than I can and if we have no one, I know he will not do well. At this point in his illness, he cannot afford to go even one day without eating/drinking well.
I hope Nurse Ratchet feels proud of herself. She upset a system that had been working well for so long. I firmly believe that Medicaid a/k/a our government has no use for its citizens if they are "broken". I feel they do all they can to put people in nursing homes, rather than do all they can to help to keep patients at home. This journey has been long and difficult and just when I think I've seen it all, something else happens that amazes me.
I feel let down and forgotten despite the fact that I have saved our system SO MUCH money throughout the years in keeping Mike at home.

Acceptance

2012-01-30T20:34:00.003-05:00

For the last few weeks, Mike's legs and ankles have been swollen...edema. It's a sign that his kidney's aren't functioning well. This past Friday, I came home to find Mike breathing really heavy. He was burping all night long and his acid reflux was in full force. As he burped, stuff would come up, then he would swallow, then cough as he choked down what just came up. On Saturday we had a new aide (an entirely different story and one in which I will share in a different post...it has to do with Medicaid) and I was very careful to show her how to feed Mike. Both Saturday and Sunday Mike had not urinated during the day, only overnight. Today he woke up dry, but DID go during the day. I cut back his food even more, but tonight he still had the acid reflux problem. I've been up with him pretty much three nights in a row. He has a sore on his toe as well as an opening on his lip on the side of his mouth where he takes in food/liquid. He still has his 5 other bed sores.
When I write all this out, I realize it doesn't sound too good. I told someone just today that our BIGGEST problem is going to be accepting "it" when it's about to happen. For 5-6 years now, every time Mike would get sick, we were told that "it was the beginning of the end". I can't even tell you how many times professionals told us this. Thinking back, it was a complete disservice to us, because when the time does come, I'm not sure we will believe them.
As is usual for my family, I get my children's hand me downs as far as technology goes. I recently acquired my son's old iPod. Since I have been in - and up - with Mike these last few nights, I've decided to play him "our" songs. We lay together and listen as our history plays before us. As each song is played, I can remember exactly where we were and what we were doing. I lie there and cry that all we had hoped for our future will never come true. I talk to Mike and let him know how happy he's made me and how proud I am of him. I tell him what a good father he is. I hope (and I truly believe) that he can hear me and know what I'm saying. I tell him all this quite frequently, because I honestly do not know when his time will come. It never hurts to say I LOVE YOU too often.

Peace of Mind

2012-01-23T12:37:00.003-05:00

We all know that money does NOT buy happiness, but it DOES give you PEACE OF MIND so that you can:
- Have health insurance
- pay for car repairs
- go to the dentist
- provide heat, electrical and water to your home (and hope for no major problems)
- keep the refrigerator stocked
- buy medicine
- make sure your children have winter jackets

Alzheimer's Disease stripped my family of a second income. I am not a single mom by choice, I don't get alimony or death benefits. I struggle each and every day just to take care of the basics. Unless you are independantly wealthy, caring for a loved one with Alzheimer's can bring you near Bankruptcy. I've never had so little in the 11 years since Mike was diagnosed and I am scared. I've instilled in my children to always "do the right thing", yet it can become a heavy load to bear when you see so many people not doing what's right, getting praise. I'm not talking friends and acquaintences.
Cast of Jersey Shore - all they do is get drunk, have sex with whomever they want, and complain about work, yet they make thousands and thousands of dollars in the process.
The Kardashians - one of them was on LIVE today complaining (seriously complaining)about being disappointed that she missed out on her fairy tale life. Serisouly, what exactly do those Kardashian's do that they deserve all the money they make??
I don't want to be bitter, really I don't and I've gotten this far without jumping on that soapbox, but when I see my kids miss out on the basics and they have sacrificed SO MUCH and do SO MUCH more than those people ever will, I can't help but feel bitter.
I feel defeated, I feel let down my our system (we had a bad experience with Social Services and Medicaid last week. We're still waiting for problems from that) and I am exhausted.
I know I have some great readers and all I ask is that you say some prayers for us. I can't remember ever being this bad off and I DO BELIEVE in the pwoer of prayer.
God bless you all for your love and support.

Interviews and Studies

2012-01-17T16:23:00.002-05:00

The last few weeks the kids and I have participated in a few projects. For one we each spoke to a social worker from Hunter College who was doing research on the affects Young Onset Alzheimer's Disease has on children of a patient. We try to do what we can whether it be advocate, research, interviews etc., whatever it takes to get this disease noticed more. It is not just an old person's disease and it affects much more than just memory. It's frightening to me how many people still think Alzheimer's is "just a memory problem". So much awareness needs to be made and I do what I can.
The next project we were involved in was with a Graduate student at Columbia University journalism school. She wanted to do her "final" project on Young Onset Alzheimer's Disease. She did some research, googled it and found both our name and that of the head of the Alzheimer's Association here on Long Island. She then contacted the Association who gave us her information to see if we would be interested in talking with her. She interviewed as many people as possible, patients as well as family members, to make her story more believable and compelling. It was a pleasure to meet this French student studying in New York and we feel she will definitely do this topic justice.
I'm going to try to get to Washington DC again this year for the Advocacy Forum sponsored by the Alzheimer's Association. I felt so empowered when I went two years ago. The concerns I have in making this happen is making sure Mike will be well taken care of and of course, the cost of this two 1/2 day event. Advocating in DC is not cheap (between hotel, travel expenses and program fees) but I am going to do my best to make it happen.
Let's face it, NOTHING about this disease is easy, hence the reason I want my representatives to hear me!

Happy Birthday Mike!

2012-01-06T15:20:00.009-05:00

Mike's birthday was January 5th...he turned 47.

One of his gifts was a Pittsburgh Steeler T-Shirt (his all time favorite team. He fell in love with their uniforms when he was a little kid!)

He got a Carvel cake and we have him a little before he went to bed. Yummy!

Becomming quite a bit emotional after looking through new found pictures, I decided to post a photo taken back in 1997. Courtney had just gotten an Easy Bake Oven for Christmas so she and Brandon (with a little help from me) decided they wanted to make Mike a cake for his birthday. They were SO proud it their work. I LOVE this picture!

HAPPY BIRTHDAY MIKE a.k.a "The Energizer Bunny"!

Holiday Update Part II

2012-01-02T12:31:00.007-05:00

Although we enjoy our Christmas together, we always look forward to my sister and her family coming in for New Year's. She likes spending Christmas in her own home with just her family, as it should be, instead of travelling. So for years, they have come to us sometime during the week between Christmas and New Year's, and this year was no different. We DID miss Steven (my nephew) though. After he graduated from Penn State, he got a job as a meteorologist working at Accuweather. He doesn't get much time off, so he was not able to make it down here this year. We Skyped, which was nice and we are hoping he will be able to make it down next year!

My sister actually surprised me on my birthday by telling me that she got an extra day off and they were able to spend 3 nights with us instead of two (and I was able to give her something toward their hotel bill thanks to the kindness of our friends at Zucker Hillside). It was such a great surprise!

As usual, we always have a great time when they come down. We have Christmas Part II as we all exchange our presents. This year they gave our family a Keurig coffee machine. While the kids and I don't drink coffee, we have been enjoying the hot chocolate and hot apple cider, while my mom and brother take advantage of the coffee. It was the BEST present.

As for my sister family, they all got the token Quinnipiac apparel, a tradition that began when my nephew first started Penn State. Freshman year each respective family would take trips to the school book store to buy Christmas presents for the whole family. Next year, all the colleges will be covered, so we'll have to come up with a new idea!

I have included a picture of Mike in his New Year's hat. Another one of our "traditions" is taking a family picture (via self timer) with whatever New Year's accessories we have that year. We all took our positions and Courtney set her timer. Unknown to us, it didn't just take one picture, it shot out 10 rapid fire pictures. I posted one serious picture and the other a crazy shot that was captured as we had fun with the paparazzi type photography.

I pray for a New Year filled with good health, love and strength. Come this April, Mike will have Alzheimer's for 12 years. I never know when the last Christmas/New Year's will be, so we celebrate each one as if it will be our last.

This year was special and quite emotional for me. When the clock struck midnight, as we all raised our glasses and toasted with the sparkling cider, I snuck into Mike's room and kissed him and wished him a New Year filled with no pain or struggles. I then came back out to the living room and enjoyed the craziness that only my family can create.

HAPPY NEW YEAR!

Holiday Updates Part I

2012-01-02T12:26:00.006-05:00

I apologize for not writing sooner.

Our Christmas celebrating began a little early
this year, on my birthday (12/21) to be exact. Back in 2004 Mike spent about 2 months in a psychiatric hospital for his anger/agitation. It was a very difficult time for us as a family, but the staff there was so understanding and caring. One of the nurses accompanied Mike and I to the ER so he could be sedated for them to do a CtScan. Unfortunately, Mike had a bad reaction to Haldol and I was distraught. This angel stayed with us, even though her shift was over. I will never forget her kindness.

After our local newspaper ran a story on our family two years ago, the staff at Zucker Hillside have made it their mission to make our holidays a little brighter, and this year they went ABOVE & BEYOND. These angels delivered SO MUCH yummy food, gifts and money. I cannot say enough about these nurses (pictured above) and the entire staff who continue to remember us year after year, despite their own lives and busy schedules. We are truly blessed. (I also know they read this blog so I want to let them know that one of them left a pair of gloves at our house which I will send back with the Thank You card that will be going out tomorrow).

Christmas Day we were blessed to have our wonderful aide Blanca work with us. This was the first year we can remember that we had an aide on Christmas day, so Courtney and I were able to go to Midnight Mass knowing that I would not have the full responsibility of caring for Mike on Christmas Day (Brandon agreed to stay home with Mike). It was a quiet Christmas, but special nonetheless. We waited to open our presents until Mike was cleaned and dressed (about 10 a.m.) and then we moved him into the dining room area so he could be a part of the festivities. The entire time we were opening presents, Mike's eyes were wide open, then we took liberty and all posed for individual pictures with Mike. We ended with a family photo which we posted above, along with a picture of Mike and Blanca.

Every year Christmas and New Years is a difficult time, and I am thankful that I have enough to keep me occupied so that I don't have much time to think. As soon as I stop, even for a moment, my mind goes to thoughts about what our life would have been like without Alzheimer's Disease. I look at Mike and cry: for all that he has missed and for all of Mike's love, attention and encouragement that our children will never know.

Christmas Woes

2011-12-14T12:49:00.004-05:00

It's been a while since I last wrote I know, but it's typical for this time of year.
I've been finding it hard to keep up the "holiday cheer", this year more than most. I know it seems like every Christmas I worry about Mike and wonder if this will be our last together, but this year, it seems more likely than ever. I think back to last January when he first started developing the bed sores. Not only does he still have them (one year later), but they have gotten bigger and deeper, sometimes getting worse, sometimes looking as though they will clear up, but never going away. I cannot even imagine what it feels like for him and my heart just breaks at the thought. He's lost so much weight you can visibly see his ribs and his spine and his eyes look sunken in. I can wrap my fingers around his ankles, his arms are like sticks. I try to be strong for the family, but nighttime is torture. I lie next to him and usually cry myself to sleep.
We've all lost so much. There's NOTHING that I do, where I don't think about what it would be like if Mike was healthy.
I'm going to pick Brandon up at school on Friday for his Christmas break and we have to rush back home so we're there in time to get Mike into bed. If Mike was well, we'd take a leisurely ride up to CT, get Brandon and maybe stop for dinner somewhere. Mike and Brandon would have been the best of friends. I just know it. They are so similar. But Mike missed out on having that relationship with Brandon and Brandon missed out on having his dad.
Courtney would have Mike wrapped around her finger, without even trying. He loved his little girl so much and I wonder just how protective he would have been with her.
Courtney talked about London again last night. I said, I would LOVE to go to London. Then I thought - would we have ever gone as a family if Mike was well? What vacations would we have taken? Instead, it's been 7 years since we took a REAL vacation (not a trip to see family, or advocate in Washington) but someplace to really get away and enjoy ourselves.
Courtney and I were discussing about when the last time it was that we went to mass for Christmas. I can't remember. Our aides (understandably so) don't come in on the major holidays so they can spend the day with their family. I miss going to Christmas Mass and I KNOW Mike does also. This was always his favorite holiday and I'm sure that is why I always have such a difficult time coping.
I move around like a robot as I try to make Christmas special for Mike and the kids. I have moments of enjoyment no doubt, but deep down the pain is always there.
I've been writing a blog piece for mariashriver.com every month now since June, but I'm having a difficult time coming up with something uplifting and inspiring right now. I banged one out for Thanksgiving, but that holiday doesn't hold as special a meaning for me as Christmas. I wrote a draft the other day and read it to Courtney. It sounded more depressing than uplifting, so now she's going to help me "revamp it" so it's fitting enough for marishriver.com. I don't want to sound really pathetic, even though the truth of the matter is that this is what Alzheimer's Disease does to families. On the flip side, when I get like this I revisit my own advise....things can always be worse.
I truly do appreciate all that I have been blessed with and will do the best I can to make this Christmas special.

Alzheimer's Gray

2011-12-01T15:48:00.001-05:00

To lose someone you love to Alzheimer's feels worse than death to many families. Death is a decisive break, and afterwards the grieving process occupies its own domain. The territory is painful, to the point that many grieving survivors would rather follow their loved ones into the unknown after death. But Alzheimer's is a gray, ambiguous land where your loved one gradually fades away, with many false returns and defeated hopes. Death is considered a mercy compared to the tormented stranger who torments those who suffer through the disease with them.

By Deepak Chopra, M.D., F.A.C.P. and Rudolph Tanzi, Ph.D

Help Get Courtney on Ellen!!!!!

2011-11-30T12:00:00.002-05:00

For anyone of my readers who does not know, we (The Henley's) are HUGE Ellen fans. Courtney started this "campaign" on Facebook two years ago, but it never fully got off the ground.
She is DESPERATE to meet Ellen and hopes she can help her fulfill a bunch of her "Bucket List" wishes... getting slimed, hosting Ellen's red carpet Oscar Special, zorbing to name a few. She noticed that many of Ellen's "non-celebrity" guests are people who made a unique attempt at campaigning to meet her, mostly through Facebook.
I am here today to see whether you can help me help her (she's going to kill me for doing this). As anyone knows, my kids have gone through hell and back as they have grown up caring for Mike. They have lost SO MUCH of their childhood, but they wouldn't change it for a second. They advocate with me, they help educate others and Courtney's life goal of becoming a film major was all inspired by her dad - with the end result being her making a movie about Mike's life and the true reality that is YOAD. She loves film/movies anyway and hopes to study in California one day.
I want to ask all my blog friends if they can take a moment and reach out to Ellen via her website
(ellen.warnerbros.com) - heck you can even ask some of YOUR friends and family to help the cause :)! I'm hoping if they get a few e-mails from across the USA and maybe even overseas (I know there are a few readers from the UK) , it may get the attention of a kind producer who can help Courtney fulfill her wish.
I know everyone has busy lives, especially now around the holidays. I TRULY appreciate your help and I hope one day Courtney will FINALLY get to meet Ellen!!!

Quick Update

2011-11-30T11:54:00.003-05:00

When Mike's regular aide came back on Monday, he seemed to have turned a corner and is not gurgling/coughing as much. His breathing has slowed down and he seems a heck of alot better. This thoroughly explains why I always feel like I'm in a Catch 22 situation with her. She takes advantage of us, she's unprofessional and selfish, yet she seems to be the only one Mike feels comfortable with. I know she knows that, hence the reaosn why she acts the way she does with us. She's constantly quoting the bible and preaching passages, I would just wish she would "walk the walk".
Mike's sores are still not well, but at least his cough is getting better.

Thanksgiving Stress

2011-11-28T11:07:00.004-05:00

For the last four days I've had a knot in my stomach, I haven't slept well and I've been an emotional wreck. I am trying to decide if Mike is in a downward spiral - OR- maybe I have been spending too much time at home with him. Surprisingly enough, I truly do not know which one of these scenarios is true.
I was happy when my boss decided to give me off on the Wed before Thanksgiving. This was an unexpected surprise and one in which I thought I would be thankful for. By the time Sunday night rolled around, I realized that the extra day was not so much of a blessing.
On Thanksgiving day, Mike awoke totally out of sorts. He was congested and he was moaning and VERY gurgly. His aide pounded his back as we always do, but this seemed to only make matters worse. He would cough, but he wouldn't open his mouth, therefore, nothing was being released. We decided to only give him fluids, as the hospice nurse always tells us this is the best thing to do to help loosen the mucus. Our aide left a little earlier than usual that day, and I attempted to give Mike something for dinner. That didn't go over well and he went to bed as uncomfortable as he woke up.
On Friday, our aide didn't show up AGAIN, and this time the agency claims they had no idea she wasn't coming in. Soooooo, no aide again. All that I had planned for Friday was now impossible as I needed to stay home to care for Mike. He hasn't done well for me for quite some time and coming off a bad day like Thanksgiving, this was not a good thing. He hardly drank or ate and by the end of the day he was pretty limp. Still gurgly, but no moaning, we ended the day.
On Saturday, we had out new Saturday aide and Mike ate and drank pretty well. He coughed alot throughout the day and seemed congested. His sores didn't look well either and I assumed it was because he basically went 2 days without much nutrition. He was gurgly again at bedtime and by this time my stomach was a mess. I was trying to figure out if this is what each day is like for Mike. I'm usually at work and I only get home after he's finished eating everything. Does he struggle like this each day? Was this something new? It seemed like I spent the entire day congratulating him for coughing and then at nighttime begging him to cough.
By the time yesterday rolled around I had 5 full days with Mike and I was emotionally and physically exhausted. I'm still not sure if this is the "norm" for him, or if he's got some sort of cold or congestion in his chest. His regular aide came in today, and she hadn't seen him since Thursday afternoon, so I will be curious to see what she says when I get home today.
Yesterday Courtney said to me, "mom, I think you just need a break" and I agreed 100%. I love Mike and care about him deeply, but after spending five full days with him, with no break, I am spent. This morning Elaine said she could tell he "wasn't himself" and seemed a little limp. Normally his arms are so contracted that you can barely move them, but today he was loose.
My mind races when I am alone with him and I see how he spends his days. I begin to question his "quality of life" and then of course, Courtney gets frustrated with me. She tells me I am reading too much into everything. What else is there to do?
I went to mass last night - it's been a while I'm sad to say. As I sat a looked up at the crucifix, my mind disappeared. Jesus was emaciated and suffering on the cross, much like Mike is at home. He's skin and bones right now and each and every day he suffers just to get through the day. I am NOT comparing Mike to Jesus, and honestly I'm not even sure why I brought that up, I guess only to say it was an emotional moment for me as we enter the Advent season.....At Thanksgiving we usually say what we're thankful for and this year my mom said "I'm glad we have Mike with us for another Thanksgiving and I hope we have him with us for another Christmas". I was taken back with that, as were the kids, but after the past five days, I begin to wonder...and worry.
LET GO, LET GOD.

Pre-Senilin 1

2011-11-18T15:23:00.003-05:00

Mike and his family suffer from Familial Alzheimer's Disease and have been tested and proven to have the PS1 gene mutation. Scientifically, this has been written about this particular mutation:

The available clinical information suggests features broadly typical of Alzheimer's disease. Myoclonus was a particularly marked feature in the individuals on whom we have more detailed medical information. As with other chromosome 14-linked or PSEN1 mutation familial Alzheimer's disease pedigrees (Frommelt et al., 1991; Haltia et al., 1994; Lampe et al., 1994; Kennedy et al., 1995), the majority of the cases experienced seizures. As in two families with PSEN1 M139V mutations, myoclonus and seizures were a feature common to all affected individuals, with the myoclonus starting, on average, 3 years before the seizures (Fox et al., 1997). This appears to be a feature of younger onset familial Alzheimer's disease (Mayeux et al., 1985). - Professor M. N. Rossor, Dementia Research Group, Institute of Neurology, Queen Square, London WC1N 3BG, UK
In layman's terms I will write....it's HORRIFIC!
I attended our local candle lighting ceremony last night to commemorate those who are currently suffering from the disease, those who have already passed and those who are caring for them. I sat next to a lovely woman who described how she is just beginning this journey with
her mom. It's funny how I forget about all the things Mike used to do in the beginning of this disease. I guess as a defense mechanism, my mind only has room to deal with the here and now, and not hold on to all that has happened over the course of the last 10 years. We proceeded to discuss the issue of awareness and research - a hot topic for me. I have always felt and WILL always feel that the money is not allocated for research because people consider this an "old person's disease". Why waste time and money when their life expectancy is so short anyway.
The PS1 mutation proves something completely different. This is the mutation apparent in many Young Onset Alzheimer's patients. The mean age of onset is in the 30's, studies have proven it and Mike is living it. So where did this mutation begin?
Mike's mom was the first person in her family to develop Young Onset Alzheimer's Disease (YOAD). Her parents passed away from other illnesses, her mom died after her. Her great grandparents did not have any indication of this disease. So how did she develop it?
Through my networking, I began talking with a spouse who's wife was diagnosed at age 39, also with the PS1 mutation. HER parents are currently helping in her care. How did she develop this mutation?
I'm sure there are numerous cases like these out there, and I present the question about how and when they developed YOAD for one reason.... If you don't think this disease can't happen to you because your not old, or you don't have it in your family, think again! Neither one of those scenarios applied to them, yet here we are.
Are you scared, you should be. NO ONE IS SAFE. This disease does not discriminate and we need to make sure our loved ones do not suffer in vain. The mutations came out of no where in two otherwise healthy woman. Between the two families, there are 5 children who now have a 50/50 chance of inheriting the gene that causes the disease. This pattern will continue until money is made available so that research can be done and a cure can be found.
Not long ago I read The Thousand Mile Stare written by Gary Reiswig. His family has been torn apart by the number of members who have developed YOAD over the years and eventually passed away from the disease. Their courage and strength is amazing as they participate in research, even those currently not diagnosed, in the hope of ending this unpredictable ride that is Alzheimer's Disease.
I've said it many times and I will repeat it again, THERE BUT FOR THE GRACE OF GOD GO I.
All I ask is that you use this forum and my words to help make your friends, neighbors, co-workers and family members aware of YOAD. The more people who are aware, the more chance we have of raising our voices and making a difference. Yes, there are many horrible diseases out there, but this one is at the top of the list. I am saying this with complete confidence, even after I sat with my FIL as he suffered and eventually passed from stomach/esophagus/pancreatic/liver cancer and a dear friend who recently passed from ALS.
Memories are the essence of our being and our ability to communicate is one of our basic needs. Alzheimer's rips both of these away from our loved ones leaving only a shell.

Broken Record

2011-11-15T16:16:00.002-05:00

That's what I feel like sometimes...a broken record.
Our regular aide was out for a week last week and about 2/3 of the time I had to run home twice during the day. I would get to work, leave to help get mike in bed, change his dressings, go back to work, and then an hour later head back home to help the substitute get Mike out of bed and once again change his dressings. The aide was out for 7 days and for four of those days, this was my routine. I was exhausted.
This past Saturday, Courtney was going into NYC. I drove her to the train station and I got home at 10 a.m. only to find out that the aide had not shown up yet. I called her number and only got voice mail (which was full) so I called the agency directly. As soon as the girl heard my name she said "OH MY GOD, MRS. HENLEY I AM SO SORRY, I FORGOT ELAINE CALLED OUT SICK YESTERDAY FOR TODAY AND I FORGOT TO CALL SOMEONE TO COVER". Needless to say I was not happy, for a variety of reasons. I proceeded to rush to get Mike washed, his sores cleaned and dressed and get him up in the chair. Thankfully my brother was available to help me transfer him. Had I known the aide wasn't going to come in, I would have planned differently.
In order to take the blame off themselves, the agency decided that they were going to pull our regular aide from Saturdays since she was very inconsistent on when she would be in. They explained that it's difficult to find someone on such short notice and since she was frequently taking off on Saturdays, they would pull her completely.
Now I will be dealing with the wrath once she finds out she off Saturdays. Even though she takes off when she wants, she's ALWAYS complaining about not having money. Today Courtney heard her yelling on the phone to someone (as she was changing Mike) that she hates her job and needs to find someplace else to work. Now if Mike knows what's going on, like she tells us all the time, what did he feel like as she screamed that in his face?
I am in a Catch-22 situation. On one hand I have an aide who can handle Mike on her own and use a hoyer by herself, but on the other hand, she is rude, stubborn and unreliable.
Since I had been transferring Mike so much lately, my shoulder, elbow and wrist are just killing me. Today I put a wrist brace on for support, but I'm still in pain. Home health aides need to be trained better because right now I'm not so sure how much help I am getting from them.

Josh Groban

2011-11-05T19:13:00.008-05:00

Way back in March, for Mother's Day, Courtney and Brandon bought me two tickets to see Josh Groban. The concert was FINALLY last night. In a perfect world, I would have gone out for the night with Mike. A nice romantic evening - dinner and listening to the melodious voice of one VERY talented young man. As we know, the world is not perfect, but I had a great time with my very dear friend. This is one of those friends that you just now you're supposed to be friends with.

I met Connie way back when in 1983 when we worked in the same law firm. I wasn't too friendly with her while at that firm because shortly after I started, she left. Four years later a friend of mine was leaving her job to go on maternity leave and she asked if I was interested in taking over. It would mean that I would go from a very big law firm to an office with only the attorney and myself (while sharing space with two other attorneys). I went for an interview and to my surprise Connie had been working for the other attorney in that office. Weird huh, that she left the same law firm 4 years earlier and here we were, working in the same office again. We began to get friendlier here, but we still never had the "have to talk every day" kind of friendship. Connie got pregnant, then I got pregnant. She had her daughter in March, I had Courtney in September. She eventually left that job, but we kept in touch when she would take over for me when I went on vacation (she had been a stay at home mom at the time). She has had numerous jobs over the years, while I remained with the same attorney I had originally went to after I left that large firm. Twenty eight years later, we still remain friends.

I have found throughout my life that a true friend is not someone you need to have around 24/7, that's a High School thing. I've had friends over the years who I thought would remain with me through thick and thin, then after Mike was diagnosed, they disappeared. Connie did not. She was also one never to keep promises she couldn't keep. Whereas some "friends" would promise to come by for a visit, go take me for etc., Connie never made those promises, but she was always there for me whether it be just to listen or to cry with me when I needed that. We would go see our favorite psychic, John Edward hoping to hear messages from our family members who passed. We both believe that things happen for a reason and that there is definitely a higher power at work. The simple fact that Connie and I have remained true friends for all these years solidifies our belief that our friendship was just meant to be.

When Your Home is Not Your Own

2011-11-02T19:03:00.004-05:00

Lately, Courtney and I have been struggling with the issues of other family members and their ability/inability to help us (Brandon is away at school and hasn't been affected by the recent craziness)
Way back when, after Mike and I gave birth to Courtney, my mom offered to take care of her when I went back to work. This worked out very well. Soon Courtney reached her one year birthday, and Mike and I began trying for a second child. We wanted to have our children close in age so the chances of them getting along better and becoming good friends would increase. The style of music, clothes, books, movies etc would all be the same. I gave birth to Brandon 20 months after Courtney was born, and my mom realized that it would be very difficult for her to take care of both children by herself. She asked if I could hire a mother's helper a few hours a day. I gladly agreed. Searching for a mother's helper who would work well with my mom was impossible. My mom felt they didn't work hard enough, didn't listen to her (she was, after all, the boss when I wasn't here), or they just plainly didn't care enough for Courtney and Brandon. After a few hires and fires, my mom decided that no one could help the way she wanted so she wound up caring for Courtney and Brandon by herself. When they started school full time, she still came by our house every day [our grandmother had ived with us as we were growing up. We knew her well, she wasn't someone we saw only on holidays. Grandma living with us was normal, so when my mom came to our home every day to be with the kids, I felt that it was a GOOD thing].
Then Mike was diagnosed with Alzheimer's. The kids were only 7 & 9 and I still had to work full time, especially since Mike was no longer able to work. My mom continued to come by every day. She did the wash for us, she made the kids lunches, picked them up from school when they were sick, kept track of their Dr.'s appts etc. She was a BIG help for me while I was trying to take care of Mike, the kids and run a house. Then Mike got bad enough and we needed to get an aide for him.
My mom had issues with every aide we had. They weren't doing their job, they didn't take care of Mike, they were always late, the food they brought for lunch smelled...and so on and so on (In fact my brother JUST complained tonight that the substitute aide that came today parked his car in my brother's spot on the street and told me that I had to tell him NOT to park there in the future!).
Courtney, Brandon and I have had to deal with family members and strangers in our home for the entire 10 years we have been caring for Mike.
Our home has never really been OUR HOME.
After 10 years, it's REALLY beginning to get to us. My mother has a difficult time getting around. She still comes to our house every day (yes, with BOTH kids in college now) to "help" but what she doesn't realize is that now I find that I'm taking care of her also. She has a difficult time getting into our house, so we have to get up early to help her into our house EVERYDAY. She brings her own laundry, which she can't carry anymore, so we have to run to her car to carry it in. She walks so slow, it's difficult just getting around her in the kitchen each morning so I can prepare Mike's meals and medicine. When we suggest that maybe they should not come over as frequently, she gets insulted. Her husband can barely walk due to spinal stenosis, yet she still makes him drive here everyday.
I try not to get too aggravated, because I KNOW there will be a day when she won't be around and I will miss her terribly. I love my mom dearly and I appreciate all she has done for Mike and I and the kids through the years, but she never seems to understand our frustration when she acts like our house is hers.
Let's not forget that my brother still lives with us and he has some major health issues. He recently found out he will probably need double knee replacement surgery, so any help we got from him in the past will be gone. He will be yet another family member sharing our home.
I'm sure there are some of you out there saying, "what is she crazy, I WISH I had family around to help". Like I said, don't get me wrong, I love them and appreciate all they have done, but some times it would be nice to be "just us".
Living with a loved one with Alzheimer's Disease is horrific, living with a loved one with Alzheimer's Disease in a home where there is no privacy makes it even worse.

We took our vows 23 years ago today....

2011-10-28T14:17:00.027-05:00

Today Mike and I are married 23 years. I am having a tough day. Taking the past few weeks into consideration, I am having a terribly emotional day.

It's no doubt that I think back to exactly what we were doing 23 years ago today. Ironically, I remember being concerned that Mike wouldn't make it to the church on time because he was ALWAYS late. I had to count on his brothers and best man to get him there on time. On 10/28/88, it was about 65 degrees with a little bit of rain. I was upset that I couldn't take pictures of me and my bridesmaids outside in front of my favorite dogwood tree (the color at the time was amazing!). The photographer saw me staring out my front door and asked what was wrong, so I told him. I had forgotten all about that conversation for the bulk of the day until it came time for us to leave for church. As we were walking down our front walkway, the photographer stopped me so he could get a picture of me in front of the dogwood. I remember that when my brother-in-law did his reading at church, he would sniffle and his mustache would go up at an angle. When Mike and I lit our unity candle, he whispered "don't drip, don't drip" to me, but when it came out on our video, Mike sounded possessed. I remember crying so hard walking down the aisle with my dad I thought everyone would notice my quivering lip as I tried to hold in my tears. After giving me away, my dad stepped on my gown as he walked to the pew and as I turned toward Mike, my head wouldn't move.

Once at the venue I remember taking all those pictures. I even made our groomsmen take their shirts off for a funny picture (I know Mike's two brother were NOT happy, but Mike's friends were OK with it). We didn't have anything to eat for the cocktail hour, so we were starving when the reception came. Our first dace to "Follow You Follow Me" was very special and even now, when friends hear that song on the radio, they comment to me about it. It wasn't a "traditional" 1st dance song at the time. My niece got hit in the head with the microphone that they passed around the table for the video. My Aunt and Uncle (brother and sister) fought for the bouquet and garter (you heard me?!) We cut the cake and Mike was NOT nice. He gave a piece the size of the plate and I KNOW I was still chewing on it when they called me to do the dance with my dad. I didn't think I would ever make it through the dance - "Tangled Up Puppet" by Harry Chapin. At the end of the song, I don't know who was crying more, me or my dad. I wasn't even sure if my dad and I would do a special dance, since Mike didn't have his own mom to dance with (she had already been in a nursing home for 3 years by then). I didn't want Mike to feel bad, but true to his nature, he wouldn't NOT have me dance with my dad.

There are SO MANY more memories of that day, and the truth of the matter remains that Mike doesn't remember any of them. I woke up at 5:30 this morning and looked into Mike's vacant eyes and wished him a Happy Anniversary. It's our special day, but he will never remember.

Sores

2011-10-27T11:54:00.002-05:00

Mike's sores seem to be getting worse. Having researched on line (which I know is a bad thing to do) I found out that sores are never really considered healed nor is their status downgraded. Basically if Mike had a Stage 3 bedsore and it seemed to look better, it would never be upgraded to a Stage 1 or 2. They can very easily turn back and that's exactly what they are doing. His shoulder which had been healed, is now so bad it's infected, as well as one on his thigh. The one on his bottom is so bad I can't even look at it anymore. As they were being cleaned yesterday, I had to give him morphine. I hate giving him morphine because to me personally, morphine = the end. I could not in good conscience, NOT give it to him, he was moaning terribly. Tylenol just wasn't going to cut it, so I gave him 1/2 of the dissolvable pill hospice had prescribed for him. This did not sit well with Courtney, but I just could not have Mike suffer.
I worry that this will be the first of many doses and that scares me.
I had to set my alarm again last night for every 2 hours so that I would make sure I was up to turn him so he would not spend any part of the night on his butt, yet you could never tell by the way his bottom looked today. I gave him another 1/2 of pill again today....at least there was no moaning.
These sores scare me. This is what Christopher Reeve passed away from and I'm sure he had excellent care 24/7.
I keep telling myself that I have done and will continue doing the best I can. I love Mike and I will make sure he does not suffer.

A Walk to Remember

2011-10-23T13:35:00.004-05:00

Yesterday was such a beautiful day, we decided to take Mike for a walk. He LOVED the fall, as do I. Our 23rd wedding anniversary is Oct. 28th. The weather in the fall is beautiful: crisp, cool mornings, sunny, cool, windy days and cool nights. Not freezing, just enough to make you feel good.

Before yesterday, Mike had not been outside in 3 years!! Except for those occasional trips to the ER via ambulance, which don't even count. Since yesterday was sunny and warm, we decided to finally get him outside. Here are some pictures we took.

Pictured: Gail (my sister), Frank (my brother), Mike and I

Courtney, Gizmo and Mike

Mike and I

Family Weekend

2011-10-17T15:17:00.007-05:00

This past weekend was "Family Weekend" at Quinnipiac. I arranged for our weekly aide to spend Saturday night with Mike so Courtney and I could attend. This weekend made me realize that this will be the last time I will be able to be away from home without one of the kids staying behind to help with Mike.

To begin with, instead of our aide arriving to work at 9am on Saturday, she got there at 9:50 - never apologizing.

For Sunday, I told my mom that she can come over about 8-8:30 in the morning (later than she normally does) because Elaine (our regular aide) would be there until our Sunday aide (Blanca) arrived. Well unbeknownst to me, Elaine told my mom she wanted her to be at the house by 7:30 and once my mom got there Elaine left. When Blanca arrived, Mike was saturated in urine and practically hanging off the bed. Blanca is so sweet, never says a bad word about anyone. She also has a difficult time speaking English. When I got home and my brother told me that Elaine washed Mike's clothes but left them for Blanca to fold, we explained to Blanca how Elaine told us she was "allergic" to folding wash. Elaine claims her doctor told her that the particles that fly through the air as you shake the wash before you fold make her sneeze - therefore she's allergic to folding wash. Blanca yelled out "That's bullsheet" (accent). When Elaine called up later to tell us she would have to take off today to take care of a matter with a deadline of today, Blanca yelled out "liar, liar" in the background.

Yes, I think Elaine is playing us for a fool, and I think she thinks she gets away with it, but she doesn't. I put up with all her "bullsheet" because the agencies cannot find an aide who is comfortable transferring Mike via hoyer. I call her out on quite a lot, but I have to pick my battles. Mike's well being is always priority!

Needless to say, after the way she took care of Mike this last time, I will not feel comfortable leaving him with her again.

On the plus side, we all had a good time visiting Brandon. Of course, Courtney was a little annoyed with me because once again I got emotional when all I saw was moms and dads. I couldn't help it. It's times like those that I'm shaken out of my "robotic routine" and see all we are missing as a family. There was just no way around it. I'm sure there were single parents there somewhere, I just didn't see them.

Not Sure How He Does It

2011-10-13T11:01:00.003-05:00

I had to change the dressing on Mike's sores last night and today. I actually had to say a little prayer before I did to give myself strength. They look horrible. I cried the entire time and tried calming him by telling him I was trying to help him. They look worse than ever and I just don't know how he does it??!! How does he deal with that pain each and every single day? I give him Tylenol as needed, but every time they are cleaned out, packed and dressed, he winces, shakes and makes a sound that sounds like he's crying. I HATE IT!! I just can't imagine what he is feeling and there's no way for me to stop it. Hospice gave me Morphine to give him, but I know once he starts getting that, there's no turning back.
I have been in a funk the last few weeks. I have been feeling like I felt when Mike was first diagnosed. My heart aches for him and I wonder what he's thinking and feeling. I understand there needs to be suffering in the world so that people can truly appreciate it when things go well and they feel good. But how much suffering can one disease bring and how much suffering can one person take??? There but for the Grace of God.....

"S", Sores and Book

2011-10-06T13:52:00.003-05:00

Mike had another "S" yesterday and it was pretty big (it lasted a long time). Courtney was with me, and I believe it was the first time she actually witnessed one. Once this happens, I need to give him medication so he doesn't get another, but the side affects of the medication is drowsiness. The "S" itself causes the person to be totally exhausted afterward, and then add medication to that, and Mike was out of it. Unfortunately, it was time for him to eat dinner. I tried giving him drink and food, but he just kept coughing. I decided to stop giving him anything, because I surely did not want him to aspirate. He went to bed last night without his usual dinner and drink. He's down to eating so little to begin with, it saddened me that he missed out on what he usually gets.
This morning, his sores didn't look well....still. The one on his thigh looked a little better, but the one on his shoulder that had pretty much healed is now open again and the one on his bottom looks bigger (although both Courtney and Elaine feel otherwise). Mike has had some congestion again and for the past 3 days, he hasn't been coughing it up. It's no wonder I don't sleep well when I have Mike gurgling next to me. The chest P/T we give him hasn't been helping and I'm not sure what's going on.
Last night, Courtney and I met had our first meeting about our book. We met with the person who will be writing it and we're so glad she's willing to work with us on something so important. For YEARS I have been hearing "you should write a book about this", well now it looks like we're on our way. It will not happen overnight since we both have full time jobs and other commitments, but the fact that we spoke about the direction it will go and what we need to do to propose the idea etc., is a HUGE step in the right direction. I am SO READY for the world to know about Mike and his struggles, his strength and his bravery and the way in which our children have overcome this heartache. This could be my ultimate advocacy project yet!!!

When All Else Fails...Laugh

2011-10-05T10:38:00.004-05:00

I just have to laugh.
Since our friends held the fundraiser for us this is what has happened:
- I had to repay the bulk of what I owed to Mike's Home Health Agency
- The pipe under our kitchen sink broke and had to be replaced
- The kid's car needed a muffler system/etc
- Our dishwasher broke
- My car had a flat tire and required 2 new tires
- Brandon was injured and has needed continous dental work
- Our refrigerator broke (on Monday)
- A pipe burst in our basement (last night causing the basement to flood and will require us
to completely empty out all it's contents and drain water)
God always makes sure we have JUST ENOUGH to take care of what we need, but he doesn't want me to be comfortable enough to have a cushion.
I don't want to say things can't get worse because I KNOW they can, but seriosuly can I get a small break???

Missing Time Away

2011-10-03T14:02:00.003-05:00

I find myself growing very tired more often. Years ago, I remember reading the blog of a woman who's both husband and daughter were diagnosed with Young Onset Alzheimer's. She cared for her husband at home for 12 years and I remember thinking, "that poor woman she must be so tired". Well next April, Mike will be sick for 11 years and I already know what she must have felt like.
It doesn't take much to upset our routine. Brandon's injury to his tooth at school has already been difficult to deal with. Financially - we're already up to $900.00 for the dentist and that does NOT include the travel expenses of Brandon going back and forth to Connecticut. Then there's the time involved - whether he takes the train home (which could take him 6 hours depending on the schedules and whether he catches the right train) or I take him back and forth (a round trip takes about 5 hours), we are EXHAUSTED. It takes so much time out of my already depleted schedule and it takes time away from his coursework and/or classes. Finally, for Brandon there is also the physical pain of dealing with a tooth broken in half under his gum line - trying to eat without using his front teeth, trying to clean his teeth in order to prevent infection and the daily annoyance of it all. This has been difficult to deal with, but it MUST be done in order to try to save Brandon's tooth.
The there's the fact that caring for Mike has become even more tedious. I don't want that to sound bad, but the truth is the truth. It now takes about an hour (on a good morning) to clean him and dress his wounds. There are the dreaded mornings when after he's been cleaned and the wounds all dressed, that he goes to the bathroom and we have to start all over again. We all do it because we love Mike and want him to be at home, but the fact of the matter remains is that is more and more time consuming.
Then I have the constant struggle within me as to whether we are doing this for ourselves and if in fact Mike is also getting tired. Does he struggle each day for US? Is he dealing with the pain of 4 bedsores because he doesn't want to disappoint us?
The fact that neither myself and my children have had a REAL vacation together in 5 years may add to the tension and struggle. Courtney and Brandon have both been lucky enough to have taken short trips with their school and of course Courtney went to London (for school) for 5 weeks. They need that break to get away from it all. For me, I haven't been so lucky. I've taken extended weekends for graduations, move-ins etc., but not REAL VACATIONS!!! A normal healthy family needs some respite time away, to clear the mind and rejuvenate themselves. A family dealing with a health crisis definitely deserves a vacation even more, but quite often, it's just not possible. I dream about the day when I can lay on the beach, swing in a hammock, read a book, have a drink and DO NOTHING. The guilt that those dreams bring is immeasurable because I know the only time I will be able to experience a true vacation will be when Mike has left us. I think there should be some sort of respite project in place for 24/7 caregivers (of any ill adult or child) so they can get away to recharge their batteries. We did that a few times before Mike's illness progressed and I had my salary cut. I can tell you first hand how much a vacation helps the body, mind and soul. Even though we had missed Mike terribly, when we came back we were all better caregivers. I came home to the normal routine, but I had a much needed break and that made such a difference. Then I sit and wonder - even if I could afford a real vacation, would I have peace of mind while I was away? Probably not, I would just be worrying about Mike. Ideally it would be great to go away and be able to leave your loved one in the hands of capable, professional nurses and aides 24/7 so that peace of mind can be attained. Unfortunately, there is no program around that would provide this sort of respite and that's sad. Keeping Mike at home is my choice and I wouldn't change it for the world, but it would be so nice to escape every now and then.

Drowning

2011-09-20T12:31:00.002-05:00

Too much going on at once.
Brandon's tooth is worse than they originally thought. It's cracked in half under his gum line, so now begins the careful routine of keeping the area clean. If anything gets lodged in between the crack, infection can set in..root canal needed...then despite of it all, he may lose the tooth. Add that to Brandon's already burdened shoulders and he's beginning to break down. Mike, heavy school load, trying to find his way around college (not literally) and now an injury, and he's understandably so, overwhelmed. He's questioning his ability to continue with his major.
Mike's sores on his sides seem like they're improving, but the one on his bottom looks like it's getting worse..fast. It breaks my heart to hear him moan sometimes as we clean it.
Brandon was in a minor car accident in January and we were recently served with court papers indicating that we are being sued by the occupant in the other car (the one that sped up so he couldn't merge therefor resulting in the accident). The night of the accident there was no ambulance and there was no indication in the police report of any injuries so this came as a HUGE shock. This is also on Brandon's mind, since he was the one driving at the time.
Mike's regular aide is out yesterday, today and tomorrow, so it's more running back and forth for me during the day to help the substitute get Mike in and out of bed, all the while worrying how Mike is responding to a different person at home with him.
In the last 4 days, I have had an average of 3-4 hours a sleep each night. It's all beginning to wear on me and I'm having a difficult time seeing the light at the end of the tunnel.

Late Night Call

2011-09-18T22:44:00.003-05:00

Mike is still holding his own. One of his sores on his shoulder FINALLY seems to have healed, although the one on his bottom looks like it got worse. There are even moments when it sounds as though Mike is moaning. I hate that. He's been OK with Tylenol for now.
We had a surprise visit from Tom and Noelle. Tom comes by all the time, but it was such a treat to see Noelle also. They were out enjoying a day just the two of them and they stopped by on their travels just to say "HI". That's exactly what friendship is about.
Brandon called about an hour ago to tell me he was heading to the Health Center at school. Seems as though his friend was quite animated in telling a story and Brandon's face happened to be in the way. Brandon was at first concerned about his nose, then realized that his front left tooth was pushed back at a 45 degree angle. YIKES!!! The nurse at the school couldn't do anything, so they sent him to the ER where they have emergency dental staff on call. Hopefully they will just put it back in place and it will heal.
Never a dull moment, but thankful it wasn't worse!

Sorry...

2011-09-14T06:54:00.002-05:00

Thank you Kathy for asking, it's been so tiring I forgot to write on the blog (I posted on FaceBook).
Mike came home last Friday. The entire weekend was crazy with doctors, nurses, social workers and priests coming over - all routine for admitting a patient to Hospice. I forgot they had to treat this as a new admit and we had to do everything all over again. Then the Walk was Saturday, which made it even more crazy.
Since Mike has been home he's been up quite a few nights with a cough. It's a productive cough, and he tries so hard to get stuff out, but he can never quite get it up. I mentioned it to his nurse and she told me to just continue using the nebulizer and oxygen. She did confirm a slight congestion in his upper airways, but didn't prescribe anything right now. The two of us have had quite a few nights with little sleep, which lead Mike to have an "S" yesterday morning. He's been getting those a little more frequently than in the past - which I HATE!!! I would say it's been happening at least twice a month for about 6 months now. They aren't big, but "S's" nonetheless. Infection and lack of sleep can usually bring those on, we'll wait and see. If nothing changes, the doctor may have to increase the dose of the medicine Mike takes for them.
Brandon is back at school, and from what I hear from him, he's loving it! Courtney started classes also and is thrilled she will begin working with the cameras and filming actual short movies this year. Finally....she gets to do the hands on filming she's wanted for years. She also started her screenwriting class, so if anyone has any good ideas, send them our way :)!
Thank you again to everyone for your prayers. They keep us strong.

Walk to End Alzheimer's

2011-09-10T19:23:00.002-05:00

Today was our Long Island Chapter's Walk to End Alzheimer's.
Courtney walked with her friends.
Brandon walked with his friends.
I walked alone.
My friends who have walked in the past could not make it today, and for the first time in MANY years, I walked by myself. I wasn't really sad, because I knew I had many people with me in spirit. I may not have had a friend physically walking next to me, but I had their love and support with me. I also realized that this walk symbolized my future, the kids going their own way, me on my own.
This year the Alzheimer's Association had a new feature for the Walk. Upon entering the walk site, each walker was given a flower pinwheel. Purple symbolized those who LOST someone to the disease, yellow, for those CARING for someone with the disease and blue for those SUFFERING from Alzheimer's Disease. We could write our thoughts, memories or prayers on them and as we began our walk, we handed them to volunteers who in turn "planted" them so when the walkers came back, the garden would be in full bloom
The picture is of the Promise Garden at our walk. It was beautiful!

Red Tape

2011-09-08T13:15:00.003-05:00

Ideally, I would like Mike to stay in the hospital for 24 hours after he eats to make sure there is no more throwing up or bloody stools. He started eating his meals today, which would mean I would want to bring him home tomorrow......BUT Hospice just informed me that they have a new policy. The hospice doctor has to examine Mike within 48 hours for him to be placed back on hospice, and if Mike doesn't come home tomorrow MORNING, the doctor will not be available again until Monday. If the doctor doesn't examine him and approve the admission back onto hospice, Mike will NOT have his aide on Sunday!
So I have two choices: have Mike discharged tomorrow sometime (morning cannot be guaranteed). If he doesn't come home before 1:00, then we won't have help on Sunday....OR, have him stay in the hospital over the weekend and have him discharged on Monday.
Why can't ANYTHING be easy??? I want him home, and could have him home tomorrow, but the discharge process at the hospital is usually a nightmare. In the past, have gone up there at 9 a.m. and only gotten home with Mike at 4-5:00.
This disease CONSTANTLY leaves me at the mercy of others. I have no control and I HATE IT!!!

Update

2011-09-07T21:11:00.003-05:00

Mike remains in the hospital and unfortunately I believe he will be discharged without us ever knowing what caused him to throw up blood.
The GI doctors don't want to scope him because of his weakened state. While I understand their concern, it doesn't help me fine out the cause of the bleeding. His doctor told me today that he may come home tomorrow, but he JUST started eating tonight. I want to make sure he can tolerate the food he takes in before he comes home. I don't want to bring him home thinking that all is OK, only to have him throwing up again. I also noticed today that Mike's stool is thick and black. While I know this is not the normal thing to share on my blog, I apologize, but I share everything in the name of awareness. In looking up reasons why this may happen, GI bleeding was mentioned again. I noticed it yesterday also but thought it was a fluke. He passed the same stool today, so I will definitely be questioning that tomorrow.
On the positive side, he looks well and seems MUCH MORE relaxed than he did when he went in on Sunday. My goal has ALWAYS been to keep Mike comfortable and I believe that we succeeded with this hospitalization. I look forward to having Mike back at home again where he belongs. Thank you again for all your good wishes and prayers.

Mike in Hospital

2011-09-05T08:40:00.002-05:00

You ALL know that I HATED taking Mike to the hospital. I HATED that he usually left with different problems than he went in for. Unfortunately, last night I had to take him to the ER and he has since been admitted.
He had a fever on Saturday, but otherwise seemed OK. Yesterday he ate and drank fine, but around 7:30 he started throwing up every 15 minutes and it was a dark liquid, almost black in color. My first and immediate concern was that he was bleeding internally. The last time he had thrown up like that, with that color was when he had to have emergency surgery to remove an infected, bleeding gall bladder filled with stones. I called Hospice and they suggested a suppository to help alleviate the nauseousness. It didn't work, and he kept throwing up. I knew something was wrong, so I called an ambulance.
He was admitted with a POSSIBLE bleeding ulcer. They will be scoping him to see what's going on and they've put him on an IV with something to coat his stomach. Courtney and I left the hospital at 4:30 a.m. and will heading back there shortly. Three hours sleep...not so bad.
A couple of things make this even more unfortunate. First, this weekend Brandon came back (on his own) to surprise us. He will now have to take the train back to college with this on his mind. Second, as we sat in the emergency room watching Sunday turn to Monday, Courtney "celebrated" her birthday. She spent the first few hours of her 20th birthday in the hospital with Mike.
I thought we were past all this. I could NOT consciously NOT treat Mike if he has something that can be treated. He had been written off many years ago by so many professionals and had we listened to them, Mike wouldn't be here. If this was a decline due to Alzheimer's and a result from it, it would be a different story...but throwing up blood wasn't something I could ignore and not treat. Please pray for our strength.

Brandon at College

2011-08-27T20:16:00.003-05:00

This past week we took Brandon up to Connecticut to Quinnipiac University as he begins his
long road ahead to becomming a physical therapist.
The school managed the move-in with perfection and I was thrilled when I didn't need to do anything. We were welcomed to Brandon's dorm building by about 20-25 upperclassman who completely unloaded our van and carried all our boxes and supplies into Brandon's room. I savored every moment because I know this ritual is only for Freshman.
The weather was beautiful. Brandon's friend from high school has a room in the building right next to his. We all had lunch together and then Courtney and I left for our trip home. We decided to take the ferry from Bridgeport to Port Jefferson and it was absolutely beautiful.
I pray Brandon will be OK and not homesick...I'm sure he will be just fine.

The picture is of Brandon in front of the University's mascot... the Bobcat.

Fundraiser with Love

2011-08-22T11:39:00.003-05:00

This past Saturday night, some of Mike's friends from High School and Grade School arranged for a fundraiser for us to help with our overdue medical bills and health insurance. Unbeknownst to me, our dear friend - our angel Tom - had been in touch with Courtney and Brandon to arrange the date and get people's names to invite. I was only told about it last month and I was extremely shocked. Of course I was emotional and quite humbled. The fact that these men, with jobs, houses, children and commitments, took the time and effort to make this happen was almost unbelieveable to me. I also didn't find out until that night that there was a "silent" partner in this who paid for all the supplies, food and beverages so that our family would get 100% of the proceeds. To me, this is the ultimate gift. The entire time he did not want to be known, he donated so much without the desire to be in the spotlight. It was only AFTER I took to the microphone and thanked all our friends that I was introduced to this kind, kind man.

The fundraiser came at a perfect time. Tom's original goal was to raise enough money for Courtney and I to have health insurance for a year. Then the week before the fundraiser, I got notification from the home health agency that if I didn't pay all or a portion of the $15,000.00 I owed them, they would have to stop sending Mike's aide. While I completely understood their point of view, I found myself unable to pay the $1,200/month Medicaid felt I could afford (when calculating our "overage", they take net salary, not gross and they do not take other expenses into account).
The best part of the night was seeing friends I haven't seen in years. My best friend from High School, our Best Man, Brandon's Godfather, a girl I used to work with at Friendly's while I was in high school and Mike's friends from GRADE SCHOOL. It also amazed me that people we never even met met were coming together to help us.
Mike's friend Steve, one of the men who arranged this night, told me a story that made me understand Mike just a little bit more. Steve and Mike were friends in grade school. Steve's mom was blind and he told me that Mike's mom would come over frequently to visit with her. Mostly, to just sit and talk, keep her company or help her in any way she could. The apple doesn't fall far from the tree. This is exactly what Mike was like when he was well. How sad that two people who gave so much of themselves developed such a hideous disease that made them both alienated by their own friends "who just couldn't handle seeing them this way".
The evening was an amazing, emotional and fun time for everyone. I was touched by all that was done for us, and everyone else felt good for being able to DO for us.
I will never be able to properly thank Tom, Steve, Ed and Rob for all their months of work. I pray one day I will be given the opportunity and means to help someone else.

5th Annual Lemonade Stand

2011-08-14T15:41:00.003-05:00

Well, it was that time of year again...time for our annual Lemonade and "Yummy" sale with
all proceeds going to the Alzheimer's Association.
Unfortunately, this year we did NOT pass our goal. Each year we try to surpoass the amount we did the year before, and quite honestly, I'm assuming the recession hit us as much as anyone else. Courtney was disappointed, but as we told all our customers yesterday, every little bit helps!

With Courtney not returning to NY until the day before the sale, it was up to me to do the baking. On Thursday, I baked 8 dozen cupcakes
and 3 boxes of brownies. Courtney made the monkey bread when she got home on Friday.

Speaking of Courtney getting home, it couldn't have come too soon for me. She was lucky to have 5 great weeks in London, but wouldn't you know it, the last week there, riots broke out. I was quite concerned, even though she constantly reassured me they weren't near her. When people go crazy like that for no reason, you never know what can happen. I'm just SO GLAD that she's home safe and sound!

As one comes, it will soon be time for the other to go. Brandon will be leaving for college on August 24th....not too far away. In true male form, he has not done anything to get ready. He has not packed anything, nor looked through any of Courtney's stuff to see what he can use. Ah yes, Courtney will be transferring BACK to Hofstra. Yes. I feel so bad for her that the school she dreamed of going to (Fordham) disappointed her and she hated it there. She made a very smart choice and decided to head back to Hofstra, where she has more friends and can work hands on in her major. She will be living at home with us, not dorming as she had done the first 2 years of college. I know she was VERY concerned about leaving me once Brandon went away to school, and I tried my best to make sure that she was not staying close for that reason. She seems happy and content with her decision and for that I am happy for her. It doesn't take away my disappointment that Fordham did not live up to her expectations in any way.

Mike is STILL battling the same sores. He has good days and bad days. I won't say anything more because I truly believe I jinx things sometimes.

Me, I'm stretched to my limites. My fingers and wrists have been hurting me ALOT lately, and I know it's from transferring Mike onto the bed at night. I'm sure I will eventually suffer from arthritis somewhere down the line.

I am talking to the journalist who wrote the story about us in Newsady on collaborating on a book. She seems excited about the idea, so we'll see where it goes.

I hope to keep everyone updated, but I know the next few weeks will be C-R-A-Z-Y!!

Bed Sores....I HATE them!

2011-08-08T15:35:00.002-05:00

This weekend, Mike had a sore on his buttocks that did not look good to me. So all weekend, I was trying to keep him off of it, to relieve the pressure. I was very careful (or so I thought) to shift him frequently so as not to compromise the sores on his thighs. Well, when he woke up today the sores on each side, as well as the one that was almost all healed on his shoulder were bleeding and looked worse. His aide, who had been out the weekend, started yelling at ME for not caring about Mike. How could I do this to him....Is this what happens when she's not there? Why does he even bother?! So, in addition to feeling bad enough on my own, I have someone making me feel even worse.
Common sense tells me that no matter what ANYONE does, Mike's health is very fragile. We give him THE best care humanly possible, yet the sores can still get worse. I know all this, but I can't help but feel guilty that because I tried to keep him off his bottom, the other sores got worse as a result.

It's Been a While

2011-08-06T19:12:00.003-05:00

I just realized how long it's been since I posted. WOW.
Let's see, Courtney will be coming home from England next Friday. I can't believe how fast it went. She had classes three days a week, and the other time was for her to do with what she wanted. She did so much, but still didn't get to do all that she wanted to. I was living vicariously through her and had a great time!
Brandon will be going away to school in two weeks. He will be attending Quinnipiac University in Connecticut studying physical therapy. He's been very quiet lately and when I ask if he's nervous, he says "Of course". I think he's more concerned about being away from Mike.
Our Sunday aide was away for 5 weeks and that was hard. She will be back tomorrow and we're all thrilled.
Mike's friends from grade school and high school are throwing us a benefit on 8/20. They were apparenly planning this for months, but I just found out about it - they needed friends/co-workers info to send invitations. It is a humbling experience and it says ALOT about who Mike was as a person. I don't mean to speak about him in the past tense, it's just that Alzheimer's has destroyed the person he once was. These friends, some of which we haven't seen in like 20-30 years, think enough of Mike and care enough about our situation, to dedicate their time and energy to making the event a success. It couldn't come at a better time, since social services called me last week and told me they may have to discontinue services because I owe them too much money. No services - no aide. No aide - no work for me. No work for me - no income. No income - no house. After I got that call, I made sure they all knew how especially thankful I am that they are doing this.
My niece came in from PA for a few days. Courtney and she were supposed to go to the NKOTBSB (New Kids on The Block/Backstreet Boys) concert in June, but they moved the date to last weekend and Courtney was still in England. I went with my niece and we had a great time. My ears were ringing for days afterward.
Maria Shriver sent me a shout out on Twitter and Ellen DeGeneres sent her love (in response to my blog post on marishriver.com wherein I explained how laughter has helped us get through the toughest days). It was surreal - I actually took a picture of the screen.
Mike's sores are still there and the one on his bottom is beginning to look bad to me. I have been concerned about it for a week or so, but his aide kept telling me I was crazy. It's been bleeding a bit more and it's just SO CLOSE to his tail bone. He still has the other two on each of his sides, so no matter where we turn him, he's still resting on a sore. He's had them for SO long!
I had just told our aide to request more chucks (cloth pads we put under Mike) from hospice because the ones we have are shredding. Today the doorbell rang and it was Betsy's husband. He was dropping off chucks that he had from when Betsy was sick. Coincidence...I think not. Thank you Betsy!
That's my catch-up. Hope everyone is doing well.

So Thin

2011-07-14T18:48:00.002-05:00

Every once in a while, I will see Mike like I haven't seen him before. Yes, I am with him every day and I'm not blinded as to his decline. Tonight though, he just looked and felt really thin. My thumb and middle finger can wrap around his ankle. When I rub his back, I feel his spine. His shoulders are all bones. His arms are like match sticks. I see him every day, but only sometimes do I really pay attention. I'm usually so busy turning him, rolling him, lifting him, positioning him, that I just go through the motions without noticing. But tonight I noticed and it's heartbreaking. When he used to hold my hand, his was so much larger than mine - I felt safe and connected. Now, his hands are so tiny, his fingers so small. His body is slowly disappearing, fading away from us just like his mind.

Happy Traveller

2011-07-11T11:59:00.002-05:00

Courtney has been in London for 5 days now and she's having a blast. She's gotten to see: Big Ben, Trifalgor Square, Picadilly Circus, Buckingham Palace, Kings Cross (and Platform 9 3/4 - yay Harry Potter fans!), and the London Eye. She hasn't gone on it yet, as each time she went it was sold out. She plans on going on Thursday before she attends the midnight premier of the very last Harry Potter movie ever - and she is THRILLED beyond belief that she will be seeing it in London!

Her actual classes start today, so now the actual fun (not) begins. I'm sure she'll do fine and still have time off to explore.

Betsy's wake was Friday and it was quite emotional. There as a line out the door and standing room only. The Deacon who said the prayer was a personal friend and he did an amazing job. He asked people to yell out words or stories that best reflected Betsy and they were all perfect. I couldn't come up with anything different, until I was driving home. I didn't get to share it there, but I thought I would share it here.

When Mike got sick, Betsy took charge. She arranged so much for us: having our living room painted, having dinners delivered and prayers said. She would mail cards every now and then just to let me know that she was thinking of me and cared how I was. Then she got sick, yet she STILL would bring me dinners. One night, Tom (her husband) rang our doorbell. She was not able to walk and she made him bring us dinner. When I asked him quite shockingly, what he was doing, he said, "You know Betsy. She's not happy unless she's helping someone".

That's the type of person she was and that's what I didn't get to share that night. We should all have a friend like Betsy.

Courtney In London

2011-07-07T11:09:00.002-05:00

Courtney landed safely today in London for a 5 week study abroad program studying the films of Alfred Hithcock. We have been extremely blessed to have been able to borrow this money in order to make this happen. It's a one in a lifetime chance, that I would have hated for her to miss.
She was extremely nervous about flying on her own AND being away from Mike for 5 weeks. That fear of being away became even more intense after our friend Betsy passed away. Her son was away at Boy Scout camp when she passed and Courtney's mind went into overdrive. Once again I explained to her that Mike would have NEVER wanted her to pass up an opportunity like this, and that we need to go on living our lives. Mike has been sick for ten years. Imagine if we didn't do anything during that time because we "were afraid" something would happen. We have no control, we just have to have faith.
She got in today when her other three roomates got in last night (they are randomly picked to room together by the school). Apparently, the roomates partied so hard and were so loud, the apartment management locked the terrace so they cannot use it anymore. Courtney said it's gorgeous, but she will never get to go out on it because her three roomates took advantage on their first night in London. She's also in a room with girls who brag about doing ecstacy and acid. I suggested that Courtney see if she can switch rooms. I do NOT want her to be around that stuff and I want her to have a good time. While she's watching every penny (or should I say pound) she spends, her trouble maker roomate is bragging about maxing out her dad's credit card. Talk about being at opposite ends of the spectrum!

Thank You Linda

2011-07-04T22:01:00.002-05:00

Two weeks ago I went to visit my friend Betsy. She was a guiding force behind a lot of the help were received over the years. I was contemplating going to see her again this weekend, but I thought about all I had already done (and how tired I was from it) and all I still had left to do. I thought that maybe I could just rest today.
Then last night I caught up on my friend Linda's blog. She had an entry about a friend of hers and how she came across his phone message from a year ago. Life happens and she got busy and realized she never called him back. Shortly thereafter, she found out he passed away. She never got to return that call.
After readng that I decided I was going to see Betsy today no matter what. I saw it as a "sign". Another friend had also visited her on Saturday and she said Betsy was not doing well. I made the 45 minutes drive this morning with Courtney. When I got to her room, her husband was there, with his stuff all around from being camped out overnight. When I hugged Betsy and gave her a kiss, I realized her hands were freezing. Courtney and I rubbed them with lotion but no matter what we did, her hands were just so cold. I asked her husband to check her feet, and when he realized they were also so cold, he put socks on them and extra blankets. We sat with her for about an hour, I held her hand the entire time, letting her know I was there. She made a few sounds when she saw us and when we left, her other friend said it was her way of letting us know that she knew we were there. Her husband walked us out and we went home and went about our day.
I got a call from Betsy's husband a few hours ago, telling me that she had passed away shortly after we left her.
Please DO NOT always count on tomorrow - it may never come, and an opportunity you thought you would have, may never come to be. Thank you Linda for sharing your story and helping me make my decision to go out and see my friend.
Rest in Peace Betsy. Your spirit, friendship and generosity will always be remembered.

We Love Ellen!!!

2011-07-02T21:01:00.002-05:00

Last night Brandon was at his friend's graduation party, so Courtney and I had free reign of the TV. Believe it or not, with hundreds of channels on cable, there was NOTHING on. So... we had an "Ellen" marathon. We try to watch her show every day to get our daily dose of laughter, but there are MANY days we don't get to it, so we record it. Well...our days are often busy and unpredictable, so we have A LOT to catch up on.
This is a picture of just some of the Ellen's we had to catch up on. Needless to say, we went to bed happy. We LOVE Ellen!!!

What's New With Us

2011-06-29T14:49:00.002-05:00

So, since the last post....
Courtney went to the dentist the next day and was told she had a wicked cavity - something unknown to both my kids. The dentist assured her it was because it was her last tooth in the back and she couldn't brush it well.. He cleaned out the decay and put medication in it with a temporary filling on top. He explained that this should last her the 5 weeks she will be away in England. When she returns, he will fill it. (I'm not sure if I had mentioned that Courtney will be studying abroad in the U.K for 5 weeks, courtesy of a loan from Mike's Uncle. He offered years ago in case she ever had the opportunity, so when it came up, we took him up on the offer. She will be studying the films of Alfred Hitchcock. She is a nervous flyer and is anxious about being away from all of us, especially Mike for such a long period of time. I truly hope she takes advantage of this wonderful experience and doesn't worry too much). Courtney leaves next Wed. 7/6 and there's so much to still get done.
Two of Mike's sores seem to be healing and Courtney and Elaine are very proud - as they should be. They have been so diligent in caring for them. They can't wait to show Mike's hospice nurse, but she seems to have disappeared. She went on vacation for one week, then we were told (in secret) that she was hospitalized, but it's now been 4 weeks and still no word. We have a substitute nurse coming who Courtney seems to really like.
I was able to get Courtney and Brandon a used car (1991 Ford Probe) from a woman I met through Facebook after our story appeared in Newsday. My heart breaks for her because she just lost her 23 year old son to Pulmonary Hypertension and her mom passed shortly before him. Her surviving son inherited his grandmother's car, so we purchased his car for a VERY reasonable amount. I'm glad the kids have their own transportation, although I am nervous about the fact that this car doesn't have air bags. It's weird getting used to them going here and there "just like that" because they can, although I am, admittedly so, still nervous about them driving on the parkway. Almost every day there's another story about another fatality.
Mike's aide, Elaine is still with us. I'm not sure what her rumbling that day was about, and it makes me nervous about what could happen in the future.
Mike's Sunday aide, a lovely woman named Blanca, will be going away for a month to visit her family in El Salvador. We will miss her terribly! I am happy for her because he hasn't been "home" in two years, but she helps us so much and her absence will be missed. It doesn't help that she will be away for almost the same time as Courtney. You'd better believe that we'll be celebrating when they both get back!!

Father's Day 2011

2011-06-19T17:58:00.008-05:00

Father's Day is always bittersweet. Mike is physically here with us, but that's it. How do you
"celebrate" the day? What do you buy someone who is practically bed bound? We can't take Mike out to dinner, or BBQ for him. Our day was very subdued. Courtney and I ran to the supermarket, but the rest of the day we just stayed home. We made Mike a T-shirt with the most recent picture of all of us and wrote on it "Happy Father's Day". We read him our cards and basically stayed close to him for the day.
Staying home was somewhat productive. Courtney and I had a heart to heart about college. She may be making some changes, and I helped her sort out the process and weigh the pro's and con's. I made MY DAD'S famous homemade potato salad in his memory - and it was enjoyed by all.

Right after the kids went up to bed, Brandon came back down and asked if he could talk to me - by now it's about 11:30 p.m. We proceeded to talk (or should I say cry) for the next hour. He broke my heart as he expressed to me his sadness at feeling like he never got to know his dad. I have a picture of him and Mike on the fridge at a Yankee game (before Mike got sick), and Brandon tells me when he looks at it, he's comforted by the fact that it's clear he enjoyed his time with Mike. Remember, my children were only 7 & 9 when Mike was diagnosed. Think about how much you can remember before that time in your life. Not much, so beside not having his dad around during his teen years, he doesn't even remember him when he was younger. As a parent, it broke my heart that I couldn't fix the situation. He's also very concerned that something will happen to Mike when he goes away to school. No child should ever have to worry about these things!

I lost alot of sleep last night as the last 10 years replayed in my mind. We all lost out on SO MUCH. When I woke up, I was tired and emotional. Then, after she ate breakfast, Courtney felt her one tooth chip. It's a molar or wisdom tooth, not sure which, but she panicked (this after we spent one night discussing the common denominator in Young Onset Alzheimer's patients being bad teeth). I tried to calm her fears, but she is beside herself. The fear of the unknown is only part of it, she doesn't want to deal with the pain if they have to pull it. Then right after this happened and I was ready to walk out the door, Mike's aide proceeds to tell me that she's not sure what's she doing, because the home health agency she works for does not give her sick time. Everytime she goes to the doctor (which has been many recently) she loses time from work - which she can't afford. SO, does this mean she may leave us?

As I walk out my door to work, I think HAPPY MONDAY! How many other woman deal with these three potentially HUGE issues before they leave for the day? How am I supposed to concentrate once I get to work?

Deep breath.....one day at a time......no, one hour at a time.

The picture was taken of Mike this morning. Each day I wake up, this is what I see - Mike's face, a palm cross and the "footprints" poem.

Perfect Analogy

2011-06-16T20:06:00.005-05:00

This week has been a particularly difficult week for me. It's been emotional and challenging. I felt like I was a fish swimming against the tide. I struggled to go forward, but with each attempt, I kept getting pulled under.

I was speaking to our social worker today and broke down as she was trying to help me through a problem. She asked me if I watched cartoons. I was never a cartoon person, but Mike was and I've seen the classics over the years. She asked if I ever saw the Bugs Bunny episode where he is sleep walking in the construction zone. He would walk a little bit and just as it seemed as if he was about to fall, a plank of wood would appear and then another and another. He walked until he got to the end of one, and then another appeared. He never fell, he remained standing while being saved by the planks of wood.

She told me that I was Bugs Bunny. I have a guardian angel who always seems to be there for me with a plank of wood just as I needed it.

Simple, yet surprisingly appropriate.....

What's Up Doc!

My Dear Friend Betsy

2011-06-15T17:35:00.005-05:00

Today I went to visit my friend Betsy. To say it was an emotional visit would be an understatement. I did all I could to stay strong and not cry, but three times I couldn't help it. Once when I saw her (the nurse had wheeled her away so thankfully she didn't see me cry), the second when she read the card I gave her and SHE started crying, and lastly, when she played inspirational music on her iPod.
I met Betsy years ago, when our children went to the same school. She was the mom who headed up all the fundraisers, she was a den mother and extremely involved in both the Boy Scouts and our church. In fact for the longest time, whenever I mentioned Betsy's name to my mom, she would say, "oh yeah, she's the tall lady in the Dr. Seuss hat" (her ploy in grabbing family's attention during fund raising events).

When Mike was diagnosed, she stepped into high gear. She got all the moms together from the school and made sure we had dinner delivered once a week (our Angel Dinners), and as her boys got older, they went to a different Catholic school which had a service club that helped families with extenuating circumstances. She made arrangements for our living room to be painted. Throughout the years, I would get "Thinking of You" cards from her giving me hope and inspiration. One night her and her boys showed up at my home with what looked like a huge scarf. She hand crocheted us a "prayer shawl" to wrap around all of us so we could pray together. Even after she became ill, her husband delivered food to us and when I asked why, he said, "You know Betsy, she's happy when she's helping others".

Yes, that's Betsy.

A few years ago, she was diagnosed with PLS - a slow progressing "cousin" of ALS. Each time I saw her, I noticed her decline. First, her trouble walking, then talking. Last summer she fell and broker her leg and that was it. Since then her decline has been even more rapid and on Memorial Day Weekend she sent an e-mail to all her friends informing us that her PLS had become full blown ALS and her time was limited. In the e-mail she said she was going to use her good china every day and not waste a moment. Even in relating such heartbreaking news, she remained true to her faith.

Two weeks ago I asked if Courtney and I could go and visit her today, because I had a 1/2 day at work. We'd bring dinner (which she needed pureed, but that was OK because I am all too familiar with that), a funny movie to watch and something sweet for dessert. On Monday, she e-mailed me and told me she was in an in-patient hospice facility because her husband was called away on business and she had to cancel today. I asked where she was, and although the hospice was 45 min-1 hour away, I decided I was still going, to visit her.

And here I am, drained from an emotional day. As I was leaving I began questioning everything. Mike was a person who would give the shirt off his back for anyone. Betsy was the same type person, yet here they both are prisoners in their own bodies. I work with an attorney who wishes that all his annoying clients get stomach cancer, and despite his "kind words", he has a boat, house in Vermont and vacations in Tahiti. How do I wrap my mind around this - how is this justified?

I have no answers now, but I know that one day we'll find them.

Bed Sores...

2011-06-14T14:00:00.002-05:00

Mike is still fighting those bedsores. The one on his bottom isn't so bad, but the one on his shoulder along with one on his hip seem to have gotten worse. The hospice nurse visited yesterday (actually it was a substitute nurse because our regular nurse is out sick), but I had to call her back today because the sores looked like they got deeper overnight. As much as I HATE looking at them, I felt like I needed to see what Mike's aide was concerned about. The shoulder has a hole in it that looks like it goes deep - the same with the one on his hip.
The nurse came today and called the hospice doctor because she felt they warranted a visit from wound care. Our hospice doctor said it wasn't necessary and at this point in time, there's nothing more they can do. What does this mean? Does this mean they've given up on Mike?
I know that Mike's nutrition has slowed down dramatically and he has lost alot of weight, but the fact that they don't feel they should even TRY to have the sores cleaned out better than we can do, is unsettling. What's the harm in trying? Maybe if they were cleaned out, Mike may even feel more comfortable - and isn't that the goal of hospice? Even if they cannot cure someone, aren't they supposed to make them comfortable? This is the second hospice agency we've hired and we just cannot seem to find one that supports our needs.
Meanwhile, Courtney gets upset because she throws around "I told you so". She has feared hospice from day one because of this very reason.
A friend of ours was recently placed on hospice, and I will be visiting her tomorrow. She had been an angel to us on MANY occasions and she was diagnosed a few years ago with PLS (A "cousin" to ALS that was supposed to progress slower). Well, she now has full blown ALS and her time is limited. I hope and pray that the hospice her family has hired is caring for her for way they should.
So much sadness lately.

Maria Shriver Blog Post

2011-06-06T13:40:00.005-05:00

Recently, I was asked to write a blog piece for MariaShriver.com and it got a VERY very good response. They've asked me to write again. I don't know how frequently it will be, but feel free to check the website. You can view the post here, and there is also a link in the "Links" section on the side of the blog.

I was both excited and humbled to be asked to do this, and it's just another way to raise more awareness.

Glasses and St. Anthony

2011-05-31T15:44:00.008-05:00

This past Saturday as I was getting Mike ready for bed, I placed his eye glasses on a shelf in the bedroom. As I was placing them, they fell. I heard a clunk, clunk, clunk, then nothing. I bent down thinking I would find them under the chair. I searched for about 10 minutes and couldn't find them - they seemed to have disappeared. Since it was late I figured I would search in the morning during daylight.

Sunday morning came and I tore the area of the room apart...nothing. Brandon went in with the flashlight...nothing. Courtney looked...nothing. We had Mike's Sunday aide in there, she took even more apart then I did, still we found nothing.

Mike absolutely cannot see without his glasses. He was almost legally blind when he was well. We have taken such special care in making sure nothing happens to his glasses (the one time his frame broke, we had to actually send them to a special repair place in Washington DC, where they soldered the nose piece). Since we couldn't find them, Courtney decided to offer him her glasses. Her eyesight isn't as bad as Mike's, but her prescription is still stronger than mine and Brandon's. Well, Mike looked amazing. His aide called him "sexy" and Courtney said it looked like he just came off a train in NYC.

Monday came and went and we searched and search and still nothing. By last night, I asked EVERYONE to pray to St. Anthony (patron saint of lost items) that Mike's glasses would turn up. We looked again this morning. Then, as Mike's aide was getting Mike washed, she took the wedge pillow we have to keep him propped up and out of the pillowcase dropped Mike's eyeglasses!!!

I keep that pillow propped up in front of our light before I go into bed, so a light is on, but it's not too bright for Mike (the light goes off once I'm in bed with him). The lamp is right against the shelf that I had placed the eyeglasses on. They must have fallen off the shelf and right into the pocket of the pillowcase.

Mike now has his own glasses, and while they may not be as stylish, I trust he can see much better!

Thank you St. Anthony!

The "Married Widow" Dreams

2011-05-25T21:54:00.003-05:00

This will be a post diffferent from the rest, as I will be baring some of my more private thoughts and emotions.
I can't remember when or where I first heard the term "married widow" in referring to the wife of an Alzheimer's patient, but it hit me like a ton of bricks and has never been far from my mind. The term is perfect. While I am still very much married to Mike, he is not really "here".
I had a dream the other night which made me realize just how much I miss Mike's company and how much I crave the love that only a partner can give. We can all get hugs, love and support from friends and family, but we also know that there is simply NOTHING like the familiarity and intimacy of being with the one person who knows everything about you and still loves you. My dream was a bit choppy and freakish, so I will try to tell only the parts that make sense with regard to what I am trying to convey....... In this dream, I was with another man (it was obviously after Mike had passed) and we had been dating for some time. One night, I said "I love you" to him, but was embarrassed because I wasn't sure that my love would be reciprocated, so I ran away. (Besides Mike, there was only one other person I was ever in love with, so saying that to someone is a big issue for me) Anyway, after I ran away, I found myself in a mall-type setting just walking around by myself, trying to make sense of things. I noticed that some employees were paying extra attention to me. I sat down and had something to drink, when these singers came in and started singing a love song to someone. Lo and behold, the song was for me, and this mystery man whom I professed my love to, came in from behind the singers to surprise me. He gave me a big hug and said "I love you too". He was some kind of big shot in this place and he had his workers watching out for me to make sure that I was OK. In that moment, in my dream, I felt safe, protected and loved once again - and it felt good.
It's been ten years, and for ten years I have been the protector, guardian and head of the house. I never realized before this dream, just how much I missed having a healthy spouse. I would love to have a husband to share the responsibilities with, to count on when I feel like I can no longer do it all myself and especially to have a man to protect me, love me and make me feel safe. That dream the other night stirred up feelings that have been buried for many years. I get up each and every day and proceed with my day like a robot. I move from chore to chore without even thinking. I am constantly in the "on" mode. I work, raise my children and care for Mike. I am the "go to" person for EVERYONE, but I miss having my "go to" person.
Married widow.. that's what I am. I've been losing Mike every day, little by little for ten years. It's lonely and I wonder if I will ever have the opportunity to feel loved again. I wish I had someone to lay next to me at night - to hold me - and tell me everything will be all right.
Goodnight, sweet dreams.......

Happy Birthday Brandon!

2011-05-14T19:42:00.002-05:00

Today is Brandon's 18th Birthday! I just can't believe how fast time has flown by. I had gotten complimentray tickets to the Yankee/Red Sox game tonight so Brandon and his three friends went. Little does he realize, but I requested that they "announce" his birthday on the scoreboard. I can't wait to hear what he sayd (Courtney reached out to his one friend to make sure Brandon is in his seat and paying attention to the scoreboard at the appropriate inning). I wish I could see his face.
Unfortunately, Mike's one sore looks terrible...it's gotten bigger and deeper. It was so bad today, I couldn't even clean and dress it...Courtney offered to do it and I let her (if I absolutely HAD to do it I would, but I was gagging just looking at it). Bed sores were my biggest fear because I knew I was going to have issues with them. I have done so much for Mike and have seen so many gross things over the years, but this is way beyond that. For some reason, neither Courtney nor Brandon have any problems with it. I guess they inherited Mike's stomach for all things gross. I am SO thanful for their help.

Hope, Faith and Bed Sores

2011-05-11T21:48:00.000-05:00

One of the most difficult realities of this disease is that there is no hope. A diagnosis means death. No chance of remission or cure. Without hope, seriously, what is there? We can hope for something as mundane as good weather, or we can hope that tomorrow will be a better day. People count on hope to get them through some of the toughest of times. Hope is essential. No one ever wants to say it because it sounds so drastic, so dark...but Alzheimer's strips all hope away.
I called the hospice nurse on Monday and asked that she come to visit when Mike is in bed and she can actually see his bed sores. She agreed and came yesterday to confirm one of my fears. Three out of 4 of Mike's bed sores are now infected. This scares me because I can't help but think of Christopher Reeve. He was wealthy and had access to the best care and resources, yet he passed away from a bed sore that became infected. It doesn't make a difference who you are or what kind of care you get. No matter how much we took care of those sores, they still got infected.
My heart hurts for Mike. I can't imagine the discomfort he feels. The sore on his shoulder is the worst and there are some moments when he does moan and appears to be uncomfortable. He doesn't deserve this, no one does.
Once again, and always, I turn to my faith. I pray that the sores heal and that Mike experiences only the slightest of pain, which we hopefully can control.
This weekend, the Alzheimer's Association is once again heading to Washington DC to try to make a change. We can't go this year due to finals and birthdays, but I gave permission for them to tell our story as much as possible to anyone who NEEDED to hear it. The one thing we can HOPE for is support for research.....and eventually a cure.

Today

2011-05-06T11:31:00.001-05:00

I took this picture on my phone today before work. Mike looked good so I thought I would share it with everyone.

Update

2011-05-05T15:18:00.002-05:00

It's been a few days and thankfully no fevers (although I hate to jinx anything). Mike's sores have good days and bad and today, the one on his bottom is not good. I assume at this point they will never go away, it will just be a question of trying to keep them "at bay". What makes it so difficult is there is not one side of his body that doesn not have one, so no matter how we position him, he will be resting on a sore. I just don't know how he deals with this every day.
Brandon left this morning for his senior trip to Disney. I had to wake up at 3 a.m. to get him to his school. This meant that my brother had to get up early also, so he could stay downstairs and listen for Mike while I was gone. This is an example of the little plans that most people take for granted. I just hope Brandon is smart with his sunscreen - his pale Irish skin and the strong Florida sun have never gotten along. The ankle he did NOT have surgery on has been rolling on him, so he took his brace and we all hope he makes it through without any mishaps.
Brandon also chose his college for September..... Quinnipiac University in Connecticut. It's about 2 hours away, but it offered him the best scholarship. Not only will he get the scholarship for 4 years, but as long as he maintains a 3.0 average, that scholarship will carry over into the graduate program which he will need for physical therapy. I know I will have issues when he goes away. He's the baby and I won't have anymore at home with me....at least for now.
Courtney will be finishing up her second year of college (her first at Fordham) and she has done very well. I am EXTREMELY proud of both of them.

Uphill battle

2011-05-02T13:58:00.003-05:00

Lo and behold, Mike must have had some kind of infection, because over the past few days he has FINALLY begun getting stuff up and out of his chest. From what I have seen, it's no wonder he had been so miserable. I'm not saying that Mike will be "fine and dandy", but if I hadn' t pressured the hospice nurse into giving him medication, he would STILL be struggling. I pray he will get through this infection. He has not had a fever for 3 days - which is a good thing. He's still coughing and I'm still worried about him getting dehydrated. His shoulder is still dislocated and he still has 4 pressure sores. God Bless our Energizer Bunny!

Last Night

2011-04-27T15:16:00.002-05:00

Moaning, coughing, congestion. Nebulizer, cold cloth for forehead, tylenol. Change Mike, re-position him. More tylenol...then he had a "S".
I decided not to take Mike to the ER today to have his shoulder re-set. I was concerned about taking him with the fever and the fact that they would never let him go. He's been coughing on and off all day, yet still sounds congested. His aide thought Mike had another "S" when he woke up from his nap, he's out of it right now.
Hopefully tonight will be quiet and uneventful.

What else....

2011-04-26T15:13:00.003-05:00

I called Hospice last Monday and they agreed to put Mike on Cipro. I told the nurse that I needed them to do this. I know they believed that the fevers were not from an infection but just "part of the process", but I needed to know that I did everything I could for Mike. If the antibiotic didn't work, then so be it....I would have known that I did all I could.
By last Wednesday, Mike was completely different. No coughing, no fever. He actually even gave us a smile twice within the last week. Now I'm not completely oblivious to the reality of this disease and the course it will take, but for now, the Cipro helped Mike and I'm glad that I insisted on it. He's MUCH MORE comfortable and not struggling at all.
Mike still has the 4 pressure sores AND just yesterday we realized that his shoulder was dislocated again. It happened once, years ago while he was in the hospital and they re-set it there. I called Hospice and his nurse came to check it out. Yes, it was dislocated, but they couldn't do anything to fix it. I will have to take Mike to the ER to have it put back in place. Right now, he has it in a sling, and surprisingly, he doesn't seem to be uncomfortable. I DREAD taking him to the ER - with his compromised immune system, who knows what he will pick up in the hours it will take for them to see and treat him??? I tried finding an orthopedist who knew one of his doctors, who maybe could take him quickly in their office, but that didn't work. So tomorrow morning, after he has his breakfast, I will call an ambulette to pick him up and take him to the ER. Ughhhhhhhhhhh.

Tough Weekend

2011-04-18T11:32:00.003-05:00

This past weekend was tough. Mike ran a fever of approx. 103 degrees on Fri, Sat., and Sun., nights. It's only been at night though, which is odd. Saturday we had a substitute aide and he did NOT do well at all. He only had a few bites to eat in the morning and evening and just about 4 cups of Gatorade instead of the normal 5-6. It's no wonder when the agency's nurse came for a visit Mike's blood pressure was 70/60. Normally, it would have freaked me out, BUT this particular nurse always gets low readings AND Mike was not very hydrated. I'll see what happens tomorrow when his regular hospice nurse comes. The doctor who had treated Mike for years after he was diagnosed, came over to visit on her own time, on Friday afternoon. Overall, she was pleased with what she saw, bearing in mind that she had not seen Mike in 6 years! She looked at his 4 pressure sores and surprisingly, she was not nervous about them. I HATE THEM and I think they're getting worse. I guess because she has seen so much worse over the years, she told me that they were "nothing". She also said that they look bad to me because for 10 years, Mike had never had a sore from his care at home. His skin has always been so well taken care of, now that it seems to be covered in pressure sores, I am beside myself. Each of the last four nights, we would get Mike into bed around 7-7:30 and he would start out OK. Then shortly thereafter he would start coughing - sometimes lasting for about an hour. Then because he was coughing so much, he would be breathing more rapidly. This is frightening and Brandon had a difficult time with it on Saturday night. Mike eventually calmed down, but the reality of what the kids are going through really hit home for me that night. I lost my dad when I was 44 - they have been losing their dad each and ever day since they were 7 & 9. They suffer losses each and very time something different happens with Mike and my heart breaks for them.

A True Test of Faith

2011-04-07T13:27:00.008-05:00

My faith has been tested MANY times over the last 10 years, and I am honored to say that Mike was the one who has taught me the true meaning of FAITH. The life he has lived has been terribly unfair, yet he ALWAYS kept his positive thoughts and faith that God would always guide him. Mike and I met in July of 1985 when we worked together. I had met his mom only once, but immediately I realized there was a problem. He told me that they were taking her to be tested because she was having alot of problems with her memory. They originally thought it was menopause. One day, Mike got a call from her saying she was at the supermarket and "couldn't get the car to start". When he got there, she was sitting in the driver's seat with the keys in the ignition. Mike started the car with no problem. She forgot what to do with the keys. His dad hired an aide to stay with her during the day and that worked well until his mom fell and the aide couldn't pick her up. I forget the actual reason for it, but one fateful day in December of 1985, they decided to take her to the hospital. Once there, it took 4 orderlies to hold this 5 foot nothing, 95 pound woman down. Mike was only 20 when he witnessed this life changing event. His mother remained hospitalized until they performed a brain biopsy, where they determined she had Alzheimer's Disease. We knew nothing about this disease or what it was capable of. Since Mike's dad worked full time in NYC and he and his brothers were in school, they decided to have her placed in a nursing home (NH). The NH happened to be a few blocks from St. John's University where Mike attended college. He would visit his mom almost every day after school and we went together every weekend. It was extremely difficult for me to see her this way and Mike was very sad that I never knew his mom when she was "well". He had an extremely close realtionship with his mom and her illness affected him terribly. At that time they were very lucky to even get her into a NH and it was only because of his Uncle's connections and the fact that his mom was a nurse. No one wanted to take a 45 year old woman with Alzheimer's Disease. The bond between nurses was very strong and she was always well taken care of. Mike and I were engaged in 1987. We would visit his mom, show her the ring and talk about our wedding plans. Mike was heartbroken that his mom was alive, but not really able to fully enjoy the happiest day of his life. Mike and I were married in October, 1988. In February of 1989, his dad got sick. We all thought he had a rough case of the flu. Nothing was staying down and he was losing weight. His doctor ordered an endoscopy which showed a mass on his esophogus. He ordered surgery to remove and biopsy the mass. Mike never got over the guilt he felt when he and his brothers went to visit his dad in the recovery room and they all gave him the thumbs up. They did this to keep him strong, when in fact it WAS cancer and it spread to his stomach, liver and pancreas. Mike now had his mom in a NH with Alzheimer's Disease and his father at home dying of cancer, and he was only 24 years old. I could not believe how strong he was. His faith was undeniable and I was in awe of his positive attitude. His dad lasted 10 months. Both Mike and his oldest brother had been married and were out of the house. Only his middle brother still lived at home. Very early on the brothers decided it wasn't fair for Bob (the middle brother) to have to care for his father all by himself every weekend, so they set up a calendar to share responsibilities. I remember quite vividly the one weekend Mike was supposed to care for his dad, but he had to be away for work. We were married less than 6 months, but I offered to stay with his dad for him. It was a night that I will never forget as I sat with my father-in-law as he threw up constantly into a basin. Nothing stayed in and the pain I saw him go through was unbearable. I was relieved when Mike's Aunt came early to relieve me. I quickly realized that in the short time I knew Mike, I never really got to know either one of his parents when they were well. Over the next three years or so, Mike lost three grandparents and a favorite Aunt. It seemed like we lived at the funeral home and to this day the smell of fresh flowers only reminds me of funerals. Despite all this, Mike soldiered on, his faith carrying him forward. In 1991 Courtney was born and it was probably the ONLY TIME I saw Mike really heartbroken. As he saw my entire family there celebrating with us, there was no one there from his side of the family. His dad had passed away and his mother was in the later stages of Alzheimer's. The fact that neither parent got to meet his children was Mike's deepest sadness. (Mike's mom passed away in August, 1992. By that time she had Alzheimer's for 7 years...she was 52) Still, Mike moved forward, deep in the belief that everything happens for a reason and we will all be OK. In 2001, Mike was diagnosed with Young Onset Alzheimer's Disease and the rest is history. I never had the heart to actually tell him that since he was diagnosed, both his oldest brother and his grandmother, along with my dad, had also passed away. I'm sure he was aware of the additional losses, but I could never bring myself to actually tell him. He has suffered so much already. And he's still suffering to this day. The bed sores and fever and some water retention have been coming and going for weeks now. I cannot help but ask myself, "WHY"? Why should this happen to someone as good as Mike, someone who has been through so much already? It just doesn't seem fair. I imagine Mike telling me "not to worry, everything will be OK". When I would ask him how he knew, he would say to me, "I have connections". I often lay next to him at night and ask if he still has those "connections". Then I realize that if Mike was able to get up each and every day with renewed strength and faith, despite all his loss and suffering, then so can I. I do this for Mike and hope he is proud of me. He taught me well.

10 Years of Alzheimer's

2011-04-04T10:05:00.002-05:00

It's been a while, but nothing much has changed. Mike still had 4 pressure sores (one on each side, one on his shoulder and one on his bottom). They get better, then worse, depending on the day. It's difficult to keep him off of them because no matter how we position him, he's lying on one of them. He's still getting fever now and then - yesterday he had a 103.5. He had been coughing again before it shot up, yet the hospice nurse doesn't think the fever is from an infection. I'm concerned about the sore on his shoulder because it looks like it's scabbed over, but it's all red and inflamed around it. When I researched bed sores on line, they said that dead skin (which often looks like a scab) should be removed, otherwise an infection could form underneath (the pus will have no place to go). I will have his nurse check it out tomorrow. Brandon is still contemplating where he will be going to college in September and Courtney is still steadfast in her thought that she will be commuting in September so she can stay home and help me with Mike. I don't believe this will be a good choice for her because her commute takes two hours each way AND next year she will begin her "hands on" film classes which will require alot of time shooting and editing. What she doesn' realize is that if she has to stay late to work on projects, she won't be home to help me anyway! I'm hoping she will come to her senses before September! The Alzheimer's Association arranged for a wonderful attorney to help us with the issue regarding social services and Mike's overage. Of course, it wouldn't be easy. I now have to file for "limited guardianship" so I can form the Trust for Mike. The hearing is set for Surpreme Court on April 14th. This week will mark the 10th YEAR of Mike's diagnosis. It's been a long and difficult road.

Turn Every Two

2011-03-21T14:03:00.002-05:00

On Saturday, Mike started coughing when we put him into bed. It was a productive cough and I didn't think anything of it. Then a few hours later, the fever came. It was so high, I was afraid to use the thermometer for fear of the number it would read. Mike's face was beat red, his breathing was fast and he was moaning. I gave him alcohol rub downs all night while I was turning him. I set my cell phone for every 2-3 hours so in case I fell asleep, I would get up. Moving him from side to side was difficult because I knew no matter where I put him, he was resting on a pressure sore.
As I was cleaning him Saturday night, the sore on his bottom got worse and it opened up. It looked terrible. Now, there was no SAFE PLACE. Both sides AND his bottom had pressure sores and there was nothing I could do for him.
Last night I also turned him every 3 hours and gave him Tylenol for the pain.
Today, the sore on his bottom opened even more and I called Hospice to send a wound care nurse - this hospice doesn't have wound care. Huh. His nurse said she would come and give me a call when she got there...no call yet. I'm sure she's been there and gone already, it's just the way it is.
I'm tired.

My Life

2011-03-18T10:12:00.002-05:00

Mike is still fighting off the pressure sores. He has one on his left shoulder, one on his left thigh and one on his right thigh - which makes it all the more difficult in positoning him at night. No matter which side he is on, he will be putting pressure on an already open sore. Lying him on his back would be an option right now, but we were JUST able to finally heal that sore. Everyday we do the best we can to make him comfortable and in as little pain as possible. I look at these sores and imagine what he's feeling. You know how you feel when you get a paper cut. We have been asking hospice for another piece of "egg crate" foam as additional cushioning, but after one month, we still have't received it. We had one, but it lost it's height and was really doing no good. Tomorrow I guess I will head to the fabric store to see what kind of foam they have there that I can use.
I have a little mystery in my life - after our story appeared in Newsday, we received some donations. Among them was a money order sent by "FC" - no return address, no name. They stopped for a while, but they started coming again. I am writing here with the hope that maybe it's someone who reads my blog. If so, THANK YOU!! This person doesn't send checks (they would have a name on it), they don't include a return address or even a signature...just FC. This person is a true angel, giving without fanfare and wanting no thanks.
We recently had another one of our Young Onset Support Dinners - which we haven't had in months. The gentlemen who pays for these dinners lost his wife to the disease and then the holidays came. It's sad meeting up with these spouses after a big space of time - most told stories of decline. And even though these are all "Young Onset" spouses, I am BY FAR still the youngest person at these dinners. I can connect with them on some level, but I still feel out of place at other levels.
I was contacted by another reporter for Newsday yesterday and we spoke for a quite some time last night. Last night I realized that each and every day, I get up and do what I have to do without even thinking about it half the time, but when I speak with others about my schedule and what my day entails, and where my life is now, it's depressing. I get through most days without REALLY thinking about what I do, but when I am confronted with the reality of it, I realize how other people can be shocked by it.

New Lay-Out

2011-03-13T19:13:00.004-05:00

Yes, you're at the right blog. I had asked Courtney to help me change the heading of the blog with old and new family photos. I wanted those unfamiliar with our story to realize how this disease can change an otherwise young and unsuspecting family. Simple request, right? Well two hours later we came up with this new design. We went through numerous choices for lay-outs, fonts, title and color. It's nothing fantastic or state of the art and I will continue to represent Alzheimer's by using the color purple . Courtney suggested that I update my very old and "boring" blog format....so........I hope you all like it. I do.

Divorce

2011-03-12T15:17:00.002-05:00

I received some emotional messages on my last post. A simple comment about having to divorce a spouse in order to keep your assets opened a can of worms.
Bottom line, none of us would CHOOSE to divorce our spouse unless we were left with no other options. Had I known back in 2001 what I would be going through today, I would have seriously considered divorcing Mike, BUT ONLY ON PAPER, in order to save me from the heartache I'm going through now. People divorce for many reasons, but divorcing to protect my husband to make sure he gets the services he deserves, and ensure that my children and I wouldn't be left destitute, may not have been a bad option. When our Elder Law attorney mentioned it, I cringed, I couldn't even think about it. What a sad state of affairs it is that we have to proclaim to the government that we no longer choose to be married to our ill spouses, in order to make sure we are all taken care of.
I DID choose to file a "spousal refusal" at the time and that even weighed heavy on my mind.
Today I have the Alzheimer's Association working diligently with an attorney (who's handling our case pro bono) in trying to fix our problem. This is a very prominent Elder Law attorney who we worked with when we appeared on his local television show. He was so angry that the government is basically punishing us for taking care of Mike at home. We will also be having a meeting with the Senator we met in Albany for the purpose of making him aware of what's happening and what families like ours have to endure when there is a catastrophic illness in a family.
I sincerely pray that this situation will bring about some positive changes.

Hopeless

2011-03-09T12:21:00.003-05:00

Once again, I find myself having a VERY difficult time while I fight every step of the way EACH AND EVERY DAY for services and assistance for Mike. As empowered as I was last Wednesday when I was up in Albany with Courtney and Brandon, I became even more dishearted the next day when I went to the Fair Hearing at Social Services for Mike.
Bottom line is this: unless you are a millionaire when you or a spouse are diagnosed with a catastrophic disease, there is no one, not even our government that can help. You either have to have everything or nothing - there is no in between. The judge told me that while he may not agree with the rules, he still must follow them.
So here I am, thousands of dollars in debt to our home health agency, no health insurance for Courtney or myself and no where to turn. Apparently my government doesn't care if I lose my job because I decided to keep Mike at home. If I cannot afford the $1,200.00/month they feel I can pay for Mike's aide, then I will need to stay at home and care for Mike myself...which means I will lose my job...which means I will lose my home...which means my entire family will be homeless and on the street. That's EXACTLY what they are telling me.
Something is VERY wrong and it needs to be fixed. I am telling the world my problems, not for sympathy, but for the sole reason to raise awareness. We need to think more carefully when we vote for elected officials. We cannot assume that our government (no matter what state you reside) will be there for us when we need help. What hurts me the most is that I am saving New York State thousands and thousands of dollars a year by keeping Mike at home and out of a nursing home, yet they DO NOT CARE. Times my thousands and thousands by all the other families caring for sick loved ones at home and that's a s*%t load of money. Now times that by families in other states....shouldn't we be elligible for some kind of assistance, if by the off chance we are not millionaires????
I'm not even getting into the fact that my children have worked their butts off in high school and college to keep up their grades, despite all their hardships, sacrifices and losses...yet they are only eligible for minimal government grants. What kind of message does this send to them? To any child out there who is struggling despite difficult situations at home, who doesn't happen to be a minority.
I am bitter, I am angry and I am scared. I do have some people who are trying to change decisions, but I am not hopeful. And even if those people DO move mountains, what happens to the others out there who don't have connections??? My heart is breaking..for so many reasons.

Visit to State Capital

2011-03-02T21:56:00.004-05:00

Today the kids and I went to Albany to meet with our Legislators and Senators for the purpose of asking for their support in limiting cuts to programs beneficial to Alzheimer's patients and their families. As we did in Washington last year, we told our story - over and over again - in all day meetings. This is what needs to be done in order to show the people who make these decisions, that Alzheimer's is a REAL problem and unless something is done soon, each individual state as well as the US Government will become bankrupt in trying to care for Alzheimer's patients.

Some facts:

In NY, the state pays approx. $1,100.00 a year to care for AIDS patients - but only $.70 for Alzheimer's patients.... and if our state continues to cut the programs offered by organizations like the Alzheimer's Association, instead of investing $850,000 a year, it will cost them approx. $14,000,000 a year. Out of the top 10 deadly diseases, Alzheimer's is the only one where the death rate keeps rising (lack of funding for research) and every 70 seconds, someone is diagnosed with Alzheimer's Disease. Alzheimer's Disease is the only disease that has no cure or medicine to slow the progression.

While in Albany, I was awarded the Frank Carlino Advocate of the Year Award. I was truly humbled and honored to receive an award named after a fellow New Yorker who, like Mike, had been diagnosed with Young Onset Alzheimer's and worked tirelessly as an advocate.

The above pictures show me with the award as well as me and Courtney and Brandon with NY State Senator Jack Martins.

Young Onset

2011-02-22T20:08:00.004-05:00

Way back when, when Mike was first diagnosed (10 years ago), statistics showed that approx. 2.5 million Americans suffered from Alzheimer's Disease. Of those 2.5 million, 1% were Young Onset individuals (250,000)- those diagnosed under the age of 65. Today, statistics show that approx 5-6 million Americans have Alzheimer's Disease, yet the number for Young Onset remains the same at 250,000. I find that extremely hard to believe, because in my small world of people, the numbers have skyrocketed.
In 2004 a young mother in Florida saw me on CNN and searched me out because she found herself struggling in very much the same way I was. We connected and became friends , sharing a heartwrenching experience of a spouse we no longer knew.
Today, my network of friends and connections of those losing a spouse to Young Onset has grown tremendously - and if the numbers have increased in my little world, how could they not be increasing elsewhere? As much as Young Onset is continuing to remain a fast growing concern, I still feel it's not getting the attention it needs and more importantly, deserves.
Taking that into consideration next Wednesday, the kids and I will be heading to our State capital in Albany to meet with our Representatives to bring to light the continued issues affecting those with Alzheimer's Disease, specifically for us, Young Onset Alzheimer's. We cannot make it to Washington this year due to the timing - it's Brandon's birthday weekend and Courtney has finals, so we decided to join other advocates from the Long Island Chapter of the Alzheimer's Association and visit Albany.
I am not only doing this for Mike and our family, but for my other friends: Rhonda's ex-husband, Tracey, Michelle's husband, Carla's mom, Pat's wife, Ira's wife, Rich's wife, Frank's wife, Elena's husband, Lynn's husband, Kathy's husband, Dorata's husband, Trish's husband, Kathy's husband, Carl's wife, Linda's husband, Nikki's husband - and the countless other families who are suffering each and every day.

A Sudden Loss

2011-02-16T15:41:00.004-05:00

Yesterday morning, a beloved teacher at Brandon's High School (and Courtney's former teacher) was killed in a car accident on his way home from my his Aunt's funeral. He leaves behind a wife and two young chldren. His death has been on my mind since it happened and I can't seem to shake it.
What's worse----- watching your loved one die a slow death every day or suddenly wake up to find they have been taken suddenly? Is it better to spend years preparing - or - is it better to have to deal with the sudden shock and then move forward?
There is no better or worse in this scenerio. As much as I am fully aware that death is a part of life, it's accidents like this that make me take a step back and continue to thank God for all the blessing I have. Death, no matter how or when it comes, is a finality that most of us will always be unprepared for.

The teacher I am referring to is Mr. Edward Solosky and one of his students started a "memorial page" on Facebook in his honor.
I believe one of the biggest fears about dying is the fear of being forgotten...to not have left a mark. After reading Mr. Solosky's FB page, it is abundantly clear that he touched the lives of many people he met. The memories shared by students, colleagues and family members gave examples of the lessons he taught which went well beyond the classroom. He left behind a bit of his wisdom and sense of humor. By reading these shared memories, it will be comforting for his wife and two young children to see how deeply he touched the lives of these students (both present and past). No doubt he will not be forgotten. May he RIP.

Happy Valentine's Day

2011-02-14T17:33:00.007-05:00

Another difficult year with AND without Mike.

HAPPY VALENTINE'S DAY MIKE - I LOVE YOU!

(Picture taken in 1989)

Mike's Diagnostic Journey *

2011-02-10T15:04:00.005-05:00

I recently met a new friend through my blog and she brought to my attention that since I began writing, I never explained what led to Mike's diagnosis. I didn't leave this out intentioanlly, I guess I never gave details because this blog began as a way for me to keep family and friends updated on Mike's forever changing condition. As time went by and I began to use this blog as my voice for awareness, I guess I never thought of sharing Mike's diagnosis saga, so here goes.
Mike's mom was diagnosed with Early Onset Alzheimer's (now called Young Onset Alzheimer's) back in 1985 - the year Mike and I began dating. She was only 45 but began showing signs of confusion and forgetfulness. At first they believed it was the beginning of menopause, and at one point specialists were brought in from Albany. They questioned whether she may have had Creutzfeld-Jacob Disease (mad cow). Her decline was rapid. When I met Mike in July 1985, his mom was still living at home, but by December of 1985, she had to be admitted to the hospital where she soon lost her ability to speak clearly, walk or feed herself. She was then admitted to a nursing home where Mike's dad visited her every day after work. Mike's college was near the nursing home so Mike went quite frequently during the week and we both went every weekend. Our visits were usually short. Mike was exceptionally close to his mom and seeing her in this condition broke his heart. The nurses and aides took very good care of her because she was their "sister" (Mike's mom had been a nurse) and they saw themselves in her. Mike was 20 years old at the time and this was more than he could bear. Mike's dad never sought grief counseling and between the stress of his job, his wife's illness and raising three boys, he developed cancer in Jan, 1989 (2 months after we were married) and passed away in Nov., 1989. By this time Mike was only 23 and his dad had just passed away and his mom was in a nursing home. We had a tough first year of marriage.
During his mom's illness, we had researched the disease and even went to a few symposiums here on Long Island. Nothing in our research ever suggested the genetics of Early Onset and what the percentages were for future children.(the children of patients with Early Onset have a 50/50 chance of inheriting the gene that causes the disease). Because of Mike's illness I always grew concerned whenever Mike became forgetful. In the fall of 2000, Mike and I had taken Courtney and Brandon to our friend's house in Pennsylvania. After one long day of trying to figure out who was going where and with whom, Mike, Brandon and I set out to a minor league baseball game (our friend had luxury boxes) while Courtney, her friend and her mom went to a carnival. Halfway through the ballgame, Mike looked at me and said..."so where is Courtney anyway?" I will never forget those words as they were the spoken words that changed my life forever.
We got back home from that long weekend and I immediately scheduled a visit for Mike to see our physician. Instead of blowing me off because of Mike's age, he took us seriously and ordered further testing with a neurologist as well as recommending Mike see a psychiatrist (because of Mike's past and losing his parents they thought he may be suffering from depression). Since Mike was still functioing well (no problems at work or driving), they decided to just "keep an eye out". By December 200, after 13 years at his job, he was fired two weeks before Christmas. Mike was devastated and felt like a failure. He couldn't even tell me in person, he wrote me a note. My heart broke because I saw how scared he was and how it was eating him apart. He had great contacts at his job, so he was able to find employment with a competitor in Jan. of 2001. By Feb, 2001 he was let go from THAT job and I knew we had real problems. The psychiatrist told me that he felt Mike was NOT depressed and he believed he had something called "familial dementia". He had recently diagnosed another man on Long Island who got lost on his way to his child's school - that man was 32. By this time Mike was 36.
After a few days of neuro-psych testing, he was officially diagnosed with Early Onset Alzheimer's in April 2001. We withheld the diagnosis from our children until Memorial Day weekend of that year. After consulting with a child psychologist, we thought the long weekend would give them the extra time they needed to digest what was happening...they were 7 & 9 years old and the day we told them was the ABSOLUTE worst day of our lives.
We had a few "good" years with Mike before he entered the anger/agitation stage. I honestly thought he would not go throught this stage because Mike had never raised his voice at all, not once in the 16 years I had known him. Then in the spring of 2004 Mike put his fist through our kitchen wall (he was trying to leave the house and my mom locked the door at my request for fear of him wondering away). He had horrible days of screaming, crying, kicking the dog and throwing things until I was concerned about the effects it was having on the kids. I called Mike's doctor and she suggested that I bring him to the psychiatric hospital so they could regulate his medication. We decided from day one that we would keep Mike at home with us for as long as we could and if medicating him would allow that, we were OK with it. He came home a few months later, but then was rushed back again where he remained for about two months. He came home in Sept. 2001 and by this time we needed an aide to assist in his care. Since I worked full time, he could not stay at home by himself and we needed someone who was trained.
Over the next few years Mike suffered from numerous health issues: dehydration, blood clots, pulmonary embolisms, infected/bleeding gall bladder (requiring surgery), collapsed lung, seizures, UTI's and pneumonia and with each illness he was hospitalized. We spent so much time in the hospital and after each visit, Mike seemed to regress. While there he would develop bed sores, C-Diff, staff infections and MSRA. We developed wonderful relationships with several hospital staff who made these visits tolerable, but we dreaded each hospitalization because we knew how it would affect Mike. Finally we made the decision to place Mike on hospice. While our children were hesitant at first (simply because what hospice implies) they agreed after I explained to them it was my way of keeping Mike out of the hospital. Mike has not spoken in about 6 years, nor walked in about 6.
Mike has been at home with us on hospice for the past two years. His condition has been declining - he eats less and less, he aspirates occasionally, he develops pressure sores more frequently and he gets fevers. We remain true to our word in keeping him at home with us, but I will not lie and say it has been easy. We sacrifice quite a bit, but our faith has kept us strong. I know without a doubt that Mike would be doing the same thing for me - or anyone else for that matter because that is the person Mike is. I have good days and bad days and I would say the most difficult thing is not having the respite I need. It's been YEARS since I have had a real vacation and the 24/7 care takes it's toll on all of us (I am happy to say though that our children do get to go away, they go out often and enjoy their time with their friends - as they should). As Mike's condition has deteriorated, it makes it more and more difficult for me to get time away. I advocate as much as I can and I truly believe that the #1 issue with caregivers should be respite time.
When Mike was first diagnosed that day in April, 2001 - he said three things to me: 1) He was concerned about what this would do to our children since HE had a difficult time and he was 20 when his mom was diagnosed; 2) it was "OK" to place him in a nursing home, he gave me his permission; and 3) he wanted me to re-marry. I believe our children, despite some recent concerns, have faired pretty well and I am honored to say that I didn't have to place him in a nursing home. I have been blessed with very special people in my life who have guided me and helped me on this journey...
Now if only I can get that vacation :)!!!!! (Yes, keeping a sense of humor is an absolute necessity)

Older and Wiser

2011-02-08T12:35:00.007-05:00

Senior year at Courtney and Brandon's High School, as part of their religion class, they take a course entitled "On Death and Dying". When Courtney took this trimester of class, I knew little of it. She felt comfortable with the subject matter as we had been dealing with Mike's illness for years, in essence preparing for Mike's death. This year is Brandon's turn and he is having issues with the course. I thought of contacting the school, but he explained to me that there were students in the class who had recently lost a parent or close friend, yet they were not excused.

Since this course began, he has been struggling. He began getting migraine headaches and we've had NUMEROUS dicussions on Mike's current condition. Brandon and Courtney were only 7 & 9 (respectively) when Mike was diagnosed...far from having their own opinions and thoughts about the ravages of the disease. Now, after 10 years of watching him lose his dad to Alzheimer's, Brandon is having a diffcult time accepting the condition and "quality of life" that Mike has. I'm struggling because I find that our opinions differ.

Brandon is at a point wherein he believes that Mike would not like to be "living" like this. He feels he is being tortured by living in his "shell". I absolutely cannot disagree with his feelings, just because they are HIS feelings. What upsets me to a degree is that when he sees his dad, he sees a man suffering.

For years I have tried to explain to our children that we need to keep our faith. We need to care for Mike, love him and honor his request for no feeding tube until the time comes for him to be with his mom and dad again. When Mike is sick with fever or in pain, my heart breaks because I HATE to see him struggle. I hate to see him in pain and I always pray that he will never have to suffer. On any given day, unless he is sick, I don't see Mike as "suffering". I would never prolong Mike's pain - yet this is how Brandon feels and it hurts me to now know this.

People have always said, Little children, little problems...big kids, big problems. This is not so much of a problem but proof positive that now that Brandon is older, he is developing his own thoughts and ideas. I am faced with the fact that as our children have grown into their own individuals, they have developed their own thoughts and rationales. Despite going to Catholic schools his entire life, Brandon just cannot accept that fact that this is God's will, that Mike's life is worth living until God calls him home.

I don't want Brandon to believe that his father is suffering., but truth be told, there's no definite way for any of us to know exactly how Mike really feels. I guess this is what has always bothered me most and now that my son is voicing his concern, there is no way for me to avoid the issue.

Wedding Picture

2011-02-04T16:59:00.002-05:00

We were finally able to get a new printer/scanner and Courtney has been teaching me how to use it. I decided to scan one of our wedding pictures. I have been very sad lately because I have been missing the Mike I fell in love with. I forget how he sounds, how he acts... so I thought I would share to all my blogger friends a picture of us on our wedding day when we had our entire lives ahead of us.

Karen and Mike: October 28, 1988

Snowstorm

2011-01-27T18:32:00.003-05:00

Today we got 19.4 inches of snow. Mike's aide couldn't make it in because the buses were not running. Brandon didn't have school so it was just us with Mike.

This leads me to wonder what it will be like next year when Brandon goes away to college. What will I do when we get snow like this? I won't be able to go out and shovel because there will be no one in with Mike.

Simple things like this become very complicated when you are a caregiver.

(Picture was taken this morning at approx. 8 a.m. just after the snow ended)

Rough Days

2011-01-22T23:55:00.003-05:00

We've had some rough days the past week.
It's been two years since his last one, but on Wednesday of last week, Mike had a "S". His current home health aide had never experienced one before, and wasn't sure what was happening. Brandon happened to have been home sick that day so he knew what it was when she frantically called him down from his room. Brandon had been upstairs in his room with his door shut and the TV on when he heard Mike. He gave him some Ativan and Mike seeed to be OK for the rest of the night. This morning he showed some "warning signs", but nothing happened. As anyone who reads this blog knows, that it THE ONE THING I hate the most and it scares me to death. I'm hoping it was caused by the cough medicine the doctor prescribed for Mike that had codeine in it. I'm thinking the codeine had a counter affect on Mike's anti-"S" medicine. I don't even want to think about this. I thought we were all done with that phase.

Courtney had work tonight and Brandon was going to the movies with his friends (he was driving). I recently joined a book club on Facebook and thought I may have a quiet night to read my book. As I was finishing getting Mike into bed, Brandon called and I knew it was trouble when he sounded panicked. He was hit from behind by someone. Thank God Brandon and his friends were OK, but the back bumper of the car was ripped off, along with our left tail light. It seems that Brandon was changing lanes (from right to left) and as he was going over, the car in the left lane sped up to not let him in and he hit Brandon. Ironically, I had thought once you hit someone, you were at fault, but the PO told Brandon HE was at fault because he was switching lanes. I will have to check that out with our insurance company. Brandon was shaken up, but otherwise OK. Our 2001 Chevy Venture has really taken a beating. It's still driveable, allbeit, without a back bumper and side panel.
In that quick second, I realized just how quickly things can change. The kids driving and getting hurt is ONE of my biggest fears.

A Special Gift

2011-01-18T13:29:00.004-05:00

I recently received a beautiful gift in the mail. Sent to my home address was an Amex gift card along with a bracelet with a little purple stone and a charm that reads: "be the change you wish to see in the world - Gandhi".
There was a handwritten note attached, with just a few words and it was signed by a smiley face. Thankfully it had a return address so I was able to send a Thank you, but no name, just someone in Pennsylvania. I have no idea who sent it to me, but I put the bracelet on that day and have not taken it off. It symbolizes so much to me. I am honored and blessed that someone I don't know thought about me in such a kind way. This is what I always hoped to do by sharing our story on both this blog and other news media...to share our experiences and struggles with Alzheimer's Disease with the hope that we just might be able to help someone else going through this. I can personally say that it helps to know that you are not alone, and I hope that by sharing our story, I am able to help someone else realize that they are not alone. My other goal remains to raise awareness, which I use every opportunity to do. I hope that by giving other people the strength, they too will speak out so that we CAN change the course of this disease. This is one of only a few diseases, that when diagnosed, the patient knows there is NO HOPE...no chance of a cure. That was the way it was years ago with AIDS and some forms of cancer. Now through research brought about by awareness, those diseases do not always mean a death sentence. Unfortunately, our loved ones never had HOPE.
I am truly humbled by the kindness and interest in our story and I pray that one day we WILL live in a world without Alzheimer's Disease.

Memories

2011-01-14T15:50:00.002-05:00

I came across this picture not too long ago and it IMMEDIATELY brought me back to that magical time. The kids used to fight about who would play with "daddy" first. We had a storage crate that they loved sitting in and Mike would "fly" them around the living room. Brandon was still a baby, so flying him around was easy. Courtney was a older and taller so she had to squish herself into that crate, but Mike still mustered up the muscles to fly her around. He could never say no to her.

The saddest thing for me is to realize that Mike never had the chance to watch them grow up and become the young adults they are.

Without a doubt almost everytime I see a young dad with his children, my stomach turns to knots and I tear up.

(Brandon was 10 months in this picture and Courtney was 2 1/2 years - March, 1994)

What does he See?

2011-01-10T13:28:00.003-05:00

It seems to be increasingly difficult to keep Mike "sore-free" these days. His skin is SO sensitive and his system is not very strong. Because of the sore on his bottom, we've had to keep him on his sides more often. Well it was only a matter of time, but he developed a sore on his right thigh. Thankfully the one on his bottom seems to be just about cleared up, but now we have this one. His shoulders also have the beginning of redness and he has been battling diarrhea the last few days. I think it may be C-Diff so I called hospice and they prescribed Flagyl which Mike started yesterday. So far it hasn't helped, but the nurse assured us that it takes time. Because of this, I get concerned about dehydration...it is CONSTANT juggling.
I've find myself more and more staring into Mike's eyes. I wonder what he sees, what he thinks? Sometimes at night I lay next to him and just stare.....What is it like for him? I believe he knows what's going on and who were are, but how could we know for sure. Does he ever feel lonely, scared...God I hope not. I pray each and every day that he feels safe and loved and that we can make him as comfortable as possible. What does he see?
There is so much suffering and illnesses in the world, but Alzheimer's is by far one of the most cruel. Mike can't reach out to us and tell us what's wrong; if he's scared, he can't reach out to us for comfort. Mike hasn't spoken in about 5 years. Imagine not hearing your loved one's voice in 5 years? I miss him SO MUCH and I can only pray that he knows that, because this disease took that basic emotion away from us also.

Happy New Year!

2011-01-04T12:00:00.004-05:00

Some time around my last post, I became sick----just WHAT I need WHEN I needed it. I was sick for the entire week before Christmas, including my actual birthday. During this time, I slept on the couch so that I wouldn't infect Mike since I was not sure what I had was the same as what he had. One night in particular I was EXHAUSTED. I couldn't even get up during the night to turn him like I normally do...and wouldn't you know it, in that one night, he developed a bed sore, worse than any I have ever seen. Of course all I heard from everyone was "Don't blame yourself", "you were sick yourself", "you do the best you can", but all I know is that THE ONE NIGHT I didn't turn Mike, he developed a bad sore.
We have been battling that sore still. It's the worst I have ever seen, but his hospice nurse didn't seem phased by it. She also told me that it will look worse before it gets better, which I'm glad she told me because it is. Mike has still been coughing and sneezing out mucus and it amazes me how much can come out. I am thankful he still has the strength and knowledge to do that.
Mike seems so much thinner to me and that bothers me alot. I'm sure it didn't happen over-night, but I have only recently been aware of the bones in his shoulders, back, ribs etc.
On a happy note, my sister and her family came in for New Years to celebrate Christmas with us. As usual, their visit distracted me from my everyday struggles and I laughed so hard my head hurt. We even got my entire family to go to the movies on New Years' Day (Little Fockers) within 10 minutes - even my mom, Walter and brother went with us. We had a unique and interesting experience, but laughed all the same.
Brandon received two more acceptance letters: UCONN and Seton Hall and not just to the universities, but into their physical therapy programs. I am SO PROUD of him and excited that he will have choices to make. I wanted him to get into a few of his favorite schools so he had choices to make and wasn't "stuck" going somewhere he didn't want to be. The next few months will be even more hectic.
I wish you all a peaceful and healthy New Year.

In the photo, my niece Kristin and Mike on New Year's Day.

Year's End

2010-12-19T20:15:00.005-05:00

It's been a while, but things have been crazy...actually they are always crazy, who am I kidding.

Mike's aide had been out a few days and having subs always creates it's own issues. Thankfully we survived.

Getting ready for Christmas this year was more difficult than last. Brandon seemed busier than usual and Courtney's classes extended into this week -added to that fact is that she is still working at Disney, so when she's not at school, she's working. Therefore, there was little or no time for them to help me lug decorations down from the attic. I was able to decorate but not as much as I have in years past. I believe this was a foreshadowing of my future. With Courtney and Brandon both in college in Sept., for all practical purposes, I will be on my own.

Last week I got one of the biggest surprises of my life. While at my desk on Fri afternoon, I looked up to see my sister (she lives in Pennsylvania), Courtney and Brandon walking in with a bunch of balloons, yelling Happy Birthday. My first thought, which I said out loud was, "it's not my birthday". Unbeknownst to me, my sister had been conspiring with Courtney and Brandon for her surprise visit to NY since September for my 50th Birthday! Once I got over the shock of seeing my sister in my office, I was informed that the next day we would be going into NYC to see Rock of Ages, see the Rockefeller Center Christmas tree and go to dinner. Courtney had to request off the entire weekend for this to work and she and Brandon were "in charge" of Mike Saturday night so I didn't have to rush home. It was the best birthday gift ever. The show was excellent - brought me back to the carefree time of my life. I sat there thinking about how Mike would have loved the show. We had a full day and we both slept very well that night. The next day my sister left early because the weather was terrible (torrential rain). I was terribly humbled by all the time, effort and money that it took to make it all happen. Once again I was given proof of how blessed I am.

Last week though, was a different story. Mike woke p on Wednesday with a 102.5 temperature. He was very congested. Thursday Mike's aide was out, so I stayed home with the sub. I was supposed to go to my office Christmas dinner that night, so Courtney was home to help with Mike. Unfortnately, I never made it to the dinner - Mike was terrible. He continued with the fever all day Thursday and his congestion was so bad he seemed to have problems breathing. Courtney was nervous and asked that I call hospice. I chose not to because I KNEW what they would have said - what I've heard before...."this is it" I did not want to hear it. On Friday morning I DID call hospice, and they prescribed an antibiotic. I was exhausted from not sleeping for 3 nights, but I only had to go into work for 1/2 day. I prayed for numerous reasons, the first and most important was that the medicine worked and help Mike get the mucus ot. It tore my heart out to see him struggle to breath. He wanted so much to cough, buut was fighting it.

Today is day 3 on medicine and it seems to have helped. He has been fever free since Friday and he'e been coughing and sneezing alot of "stuff" out. Once again the reality of Alzheimer's Disease reared it's ugly head, and the roller coaster ride took off once again. When Mike is that bad, there's no way for me not to think, "maybe this IS it". Then I think about and prepare for "IT" - wondering exactly what it will be like. Just as I prepare myself for what could happen, Mike turns a corner and starts recovering. It's a cruel disease, on all levels. When I think about all the illnesses Mike has overcome, all the health scares he has beaten, it's no wonder we call him the "Energizer Bunny"

On a more positive note, it was confirmed last week that for next semester Courtney will be living on camps (for her first semester at Fordham, she was living off camps in graduate housing). We hope this will help her experience Fordham at it's fullest and make it easier for her to connect with other students with the same interests. Living off camps as a transfer student in graduate housing isolated her and she was having a difficult time. Moving on campus is a plus, having to move her out of her current dorm by this Wednesday - not so mch. It could not have come at a worse time, but I will make it happen. Anything to get her on campus.

Brandon got his first acceptance letter from Quinnipiac Unversity (Ct) for the physical therapy-athletic training program. He was estatic, but I am not quite sure why he's been so nervous. Like Courtney, he has an A average with his best subjects being math and science. He applied to Quinnipiac under rolling admission. We expect to hear from his other choices within the next 3-4 weeks.

In case I do not back before Christmas, I wish you all a peaceful and relaxing Christmas. I pray for good health, to be shared with good friends and family. Thank you all for yor friendship and support.

Memory Lane

2010-11-30T15:35:00.003-05:00

Brandon will be graduating next June and with that comes all the same activities and planning as I did just two years ago with Courtney. When Mike and I were planning our family, we desperately wanted to have our children close together. Our thought process was that by being so close in age, they would be on the same playing field, hopefully sharing the same interests and that they would grow up to be the best of friends. We prayed that no matter what, they would always be there for each other.
At this age, it sure doesn't seem to be the case. There will be occasional and very rare moments when the two of them will be talking, maybe even laughing together, and I wish Mike was aware so he could see that our wish may indeed have come true. When they argue and fight, a part of me hopes that Mike doesn't realize what is happening.
When Mike and I were planning our life, we didn't realize just how hectic things would be as our children, so close in age, got older. This year, Courtney is helping me with Brandon's yearbook dedication page. We spent one evening looking through boxes and boxes of pictures, looking for the photos we thought would epitomize Brandon. In searching through these memories, I was once again confronted with the past, and all that we have lost. Not just me and the kids, but Mike - and all that he has never fully experienced. I am so caught up in trying to stay afloat in the present, dealing with our daily struggles, that quite often I forget the life we used to have: the way Mike used to be, the relationship we had before we got married, his relationship with Courtney and Brandon, our dreams and hopes for the future.
I can be somewhat thankful that I am so busy each and every minute of the day, that I don't have the time to re-visit those memories. At any given moment, when I see a dad with his chidren, I tear up. I remember those days as though they were yesterday, and mourn for the life Mike never had to share with his children. Alzheimer's robs it's victims of those memories, those cherished snapshots of time and events that make up our past and create the person we are.

Thanksgiving....

2010-11-23T11:24:00.005-05:00

A time of year to give thanks for all that you have.

I feel like it's Thanksgiving everyday. A few months back, I was struggling with so much and became angry, resentful and jealous. Strangely enough, it was a kidney stone that made me realize how much can be taken away in the blink of an eye. I was in such severe pain and I was so scared because I did not know what was happening. I immediately thought of the worst and I'm sure that fear made my experience even more difficult. After I was told it was "only a kidney stone", I was so relieved. When I think about what could have been......
Yes, Mike has been suffering with Alzheimer's Disease for 9 1/2 years now. When he was diagnosed, I never expected him to be with us for so long. I look back and think of all we have been through with him, all that he has suffered, and I am extremely THANKFUL that we still have Mike with us at home where he belongs, happy and healthy.
I am THANKFUL that me, my children and family are all basically healthy. Without our health, where would we be?
Two and a half years ago, my salary was cut drastically. This sent me into a downward spiral I have not been able to dig myself out of. I lost my health insurance because I could no longer afford the monthly premiums and along the way I have lost my car insurance, had my phone and TV shut off (they have all been re-connected...until next time). Yet in this economy, I am THANKFUL that I at least have a job. Each day I can wake up and go to work and know I will be getting a paycheck at the end of the week (no matter how small it may be :). There are many people out there not as fortunate as I am.
My car in almost 10 years old and we only have one (even though now there are 3 of us driving). I am EXTREMELY THANKFUL that I have a car and that it has been reliable and good to us. Each day it rains, snows or it's cold/windy, I look at the people in the neighborhood waiting for buses and I thank God I have my own transportation.
I am so THANKFUL that we have so many good friends, neighbors and organizations in our life that have been there for us these 9 1/2 years. We would have never survived this long without all their help and support. We also would have: no heat, no ramp or no bedroom for Mike and I - without the continued love and support from Mike's old co-workers. Each and every year they have never failed to deliver a turkey to us for Thanksgiving - that's 9 years! The fact that they have not forgotten us, for that we are THANKFUL.
I can go on and on, but I think I made my point. Even though we all have struggles and difficulties in life, we should still remain THANKFUL. Things can always be worse, for no matter how bad we have it, there will ALWAYS be someone out there suffering more than we are. I lost that mindset for a while, and I was miserable. Now each and every day I thank God for all that we have and all that he has given us.
HAPPY THANKSGIVING TO ALL THOSE WONDERFUL PEOPLE IN MY LIFE!

AFA Telethon taping

2010-11-12T12:08:00.009-05:00

Last week we were invited to the taping of The Alzheimer's Foundation of America telethon which will be aired DECEMBER 4, 2010 on NBC.

The kids and I were thrilled at the opportunity to be witness to such a ground breaking event which took place Wed. Nov. 10th. This is the FIRST TIME in the 25 years that I have been dealing with the disease that such an event has taken place on National Television. We were honored to be asked - and as an added bonus, star struck with the celebrities that were present. Beside those at the actual event, there were very famous and powerful people who pre-taped messages to be played during the show about how and where to donate. Needless to say Courtney and I almost fell off the floor when our idol ELLEN DEGENERES, did her part. She has so many followers and she has the ability to reach so many people. I was beyond happy that she had agreed to take part in the telethon for this very important cause.

As you will see WHEN you watch the telethon, the Foundation focuses on the CARE for individuals and their caregivers. While research is imperative, organizations such as the Alzheimer's Association raises money for that. As Hector Elizondo so eloquently said, "while there's currently no CURE for this disease, we have to do all we can to help CARE for those with the disease". That was the main objective for this event. They touch on: young onset, day programs, the explanation of the disease, their "Quilt to Remember", and even how to get young children to understand the disease.

I was so honored that they chose Mike's mom's picture and Mike's picture as part of a tribute to those affected by the disease.

The taping was a great experience and as much as I would love for this to be an annual event, I pray that it will not be necessary.

Anniversary/Respite

2010-10-29T14:02:00.005-05:00

Yesterday Mike and I were married for 22 years. This year, more than past, I had a difficult time dealing with the day. The night before I was dreading the day and I walked around pretty much all of yesterday in a funk. Maybe it's because of how difficult things have been lately, but for whatever reason, this anniversary made me much sadder than previous years.
We still have no washing machine so I spent my anniversary in the laundromat (the repairman came last week, but needed to order a part. He will be coming back on Tuesday). This is not at all where I pictured we would be back on that beautiful day 22 years ago. The future I had hoped for is no longer possible.
Brandon has also been having a difficult time with everything lately and I worry about him. I believe the reality of being a senior in high school and that he will be going off to college next September has really hit him. I also believe it's been hurting him even more when he realizes just how much of his life his dad has missed. The other day he said to me, "mom it's been almost 10 years. I was 7 when dad got sick!" That single statement put so much in prospective for me. I remembered when I was 17 and my parents divorced - I felt like my world had collapsed around me. I shared that thought with Brandon and he said to me, "at least you had both your parents until you were 17".. wow.. I began to second guess myself and the decision to keep Mike at home. Both Courtney and Brandon CONSTANTLY tell me that they wouldn't have it any other way, but did they realize at 7 & 9 years of age what they would have to sacrifice? Should I have made an executive decision to override their wishes? Once again I think about the two other woman who were in the same situation as I was. They took a different route - they divorced their husbands, placed them in assisted living facilities and remarried. Their children have countless opportunities that mine will never have. Just the other day Courtney went to the "study abroad" fair at school. She would love to study film in England. Her one friend from high school will be studying abroad in Italy for the second time next semester. Courtney just wants to go once, yet when she heard the fee was $17,000.00 PLUS, she knew it was impossible. I asked her to check and see if her financial aide and student loans could be applied but she doesn't believe so, but will be check it out anyway. Meanwhile one of the children in the other family has been to Europe twice. Once as part of a Student Ambassador program, the other with her family.
Brandon said to me, "mom something good HAS to happen soon". My heart broke for him. They see our family doing all the "right" things, but sinking deeper and deeper every day while those who took a different route (whether right or wrong) and chose not to devote their life to caring for their spouse, being rewarded.
"Faith" - I tell Brandon, and I explain to him how much I have been struggling lately.

Then it hits me, it's been 5 years since the kids and I have been on a vacation - I mean a REAL vacation. We have taken "trips" to DC and Pennsylvania, but with all the running around we did, I would hardly call them a "vacation". RESPITE - something imperative that we do not get. Five years of 24/7 caregiving with no rest and I believe we have finally reached our breaking point. Sad part is, there's no way for us to change that situation. I feel better knowing that we haven't "given up" and it's the simple fact that we are all tired, spent, worn out from giving so much yet not being able to rejuvinate ourselves. It could also be a contributing factor in why we have been arguing alot more lately.
Courtney is 19 and Brandon is 17 - they are teenagers. Teenagers who never had their dad the way most children do. Children who have devoted their lives to caring for their dad, when it should have been their dad caring for them.

Caregiver Conference

2010-10-27T09:38:00.002-05:00

Yesterday I was asked to be a part of a Caregiver Conference held at a local nursing home. It continues to amaze me how many caregivers are out there desperate to find guidance as they navigate their way through the Alzhiemer's Disease maze. As with the others I have participated in, this one had speakers and workshops - all designed to help those caring for a loved one with some kind of dementia. I don't think they ever had any when Mike was first diagnosed, at least I was not aware of any. It's a wonderful "gift" for these professionals to give back to people who have entered into a very scary, unpredictable world.
I was part of a panel that included 6 caregivers - 3 of whom who care for an older parent, 3 caring for a spouse with "young onset". All the stories were unique to the family, yet similar for the disease. I am always proud to sit among people who have gone above and beyond in caring for a loved one, whether it be at home or in a nursing home. Unless someone has walked in our shoes, they cannot possibly understand, so to sit with others who have gone through OR who are going through the same tragedy, makes me feel "safe" and comfortable. When I take part in these events, I feel like I am with extended family.
As I was walking to my car afterward, a woman drove by and stopped me. She was also a part of the panel, but we did not get to speak very much before or after the presentation. She slowed down and rolled down her window, put her hand on her heart and started to cry. She expressed her shock at Mike's age at diagnosis and wished me well. We spoke for a bit and she went on her way. Fellow caregivers can communicate with very few words - often none are needed. We know in our hearts.

Back on Track

2010-10-21T10:02:00.002-05:00

After last week's scare with the kidney stone, I was able to get myself "back on track".
It seems as though the negativity and depressive tone of my mom and brother had been bringing me down. For years I was always the one that had the positive outlook, but lately (and as you all can attest to), I have been in a "bad place". Last week, I turned the corner back to where I am supposed to be. I prayed alot and just made my decision that no matter how bad things are, they can ALWAYS get worse. This is the mantra I would repeat to all who know me, but I lost sight of that. Obviously, it's easier to just feel beaten than it is to fight, but now that I am feeling better and for that brief glimpse saw what could have been, it gave me renewed energy to continue on my positive track.
In fact just this morning, I was already tested. My mom was doing her daily laundry at my house when all of a sudden we heard a "crack". I thought the washer door had broken. When I inspected the machine I saw that the rubber around the entire drum was basically "mutiliated". I could have gotten really upset and said, "here we go again", but instead I said, "Thank you God that I have an extended warranty". Even though the repair person can only get to us on Tuesday, I feel blessed to have the extnded warranty to pay for the repair.
I'm back to the place where I want to be - no health insurance and all......

2010-10-18T15:39:00.003-05:00

I am feeling better than last week, although not 100%. I still feel discomfort, which concerns me. A VERY DEAR FRIEND of mine is having one of the Urologists she knows review my CT Scan to make sure everything seems to be OK. My problem is that I read my report thoroughly and it mentioned a number of other issues that I now have on my mind. While it's in the report in black and white, I am hoping that the issues are not as serious as I think they are, and they may be issues than many people have. I am trying to remain calm.
Mike's hospice social worker came by this morning. My mom had just mentioned to her about my visit to the ER last week and I apologized that I couldn't stay and talk because I was running late for work. Despite this, she says to me as I'm walking out, "Have you thought about funeral arrangements? I was not assigned this case in the beginning and it doesn't look as though anyone has ever spoken to you about this". Yep, this is what I was asked as I was walking out the door to work. Her question isn't what bothered me, so much as it was the timing or her lack of consideration. I just looked at her and said, "I've thought about alot, but I have too much on my mind right now and I'm getting too upset before work". I drove to work in disbelief, not sure where to even begin.
Murphy's Law has been in full force the past few weeks. I need to constantly remind myself to dwell on the positives and blessings, rather than the negatives. Thank you all for your prayers.

Crazy Week

2010-10-15T19:28:00.002-05:00

At the start of this week I had planned on reaching out to my blog readers and asking for your prayers. The power of prayer is an amazing thing and my faith is what keeps me going. I wanted to ask that you each take a minute or two and say a prayer for me and my family. During the last nine years of Mike's illness, I have never before been so overwhelmed: physically, emotionally or financially. I did not feel things could get worse and I was looki0ng for your help. It doesn't matter what religion you are, who you pray to or what you believe, I just needed to know that strong and powerful prayers were going out for me. As this week comes to an end, you will find out just how much I need them now.

On Tuesday, right after dinner, a pain, the likes of which I have NEVER experienced before, started in my back. I thought it was gas, so I took Tums. My brother was upstairs resting (he's had his own health issues) and Brandon was with me in the living room, but I had to leave to get Courtney from work (She commutes from Fordham in the Bronx out to Garden City 4x a week for her job at The Disney Store). Driving to get her was a complete blur - the pain was unbearable. I didn't know whether to cry or throw up. When I got to the mall I got out of the car and started pacing (which must have looked suspicious to Security), but I just couldn't sit for another minute. I was going to explain to Courtney that I couldn't wait with her at the train station, that I had to drop her off and run, but with one look at me she said, "mom I'm taking you to the hospital". Two things entered my mind, 1) what about Mike? The ER can take hours and if I'm stuck there for the night, who will prepare his food and meds in the am?; and 2) I have no Insurance. Yes, for the first time in my life, I have no health insurance. I was going to wait it out, but both Courtney and Brandon were convinced that I has appendicitis and was concerned it would rupture. The look on their faces made me cry even more. With all they had been through with Mike, to see their stronghold collapsing in front of them, crying out in pain, they were petrified. I went to the hospital for them. The two hours in the waiting room was the longest ever - I was pale, rocking back and forth and running into the bahroom to throw up. I wasn't saying a word and I felt bad for Courtney each time I went into the bathroom. I could see the look of relief on her face each time I came out - I could read her mind, "what will I do if she takes too long? Did something happen? What would I do?" I wished I could ease her mind, but at the time I couldn't even think straight. 2 1/2 hours later after a CT Scan and some of the worst pain I have EVER felt, it was confirmed that I had a kidney stone. I have a very high tolerance of pain - in fact I had Branfdon COMPLETELY natural, no drugs at all, but this pain was so bad, the morphine they gave me, only took the edge off.

We left the hospital at 1:30 in the morning. Courtney missed her one class on Wednesday. Brandon left school early. Brandon did an AMAZING job getting Mike into bed with my brother and I couldn't have been more thankful or proud of each of them. They really stepped up to the plate when I needed them the most.

On Wednesday the pain was still with me and I tried to figure out how I would know if it passed. I spent the next 2 days drinking 2-3 QUARTS of water and FINALLY last night I believe it passed. Then about 3 hours later the pain started again, and it felt like something else had passed. So far, no more pain. Of course, Mother Nature and/or God has a sense of humor because on Thursday I got my period. Seriously????

THANKFULLY Mike remained status quo throughout, I guess God thought, "enough is enough". Now that my pain is gone, I am left to worry about how I will be paying for the ER visit. The hospital gave me paperwork to fill out for "Charity Care", which I will no doubt send out when I get back to work.

Courtney and I still don't have health insurance and it weighs on my mind every minute. As I said, I have never not had insurance, my whole life. Social Security feels that I make too much money for coverage under Family Health Plus - and they actually sent me paperwork saying I can get coverage if I pay the $3,300/month premium. That would be added to the $1,200/month I'm supposed to pay for Mike's aide (which I haven't done in months). I wait every day for a call from the Agency telling me they have to pull Mike's aide because on non-payment. There's not much I can do because I just don't have the money.

And this is where I get frustrated and angry. I've worked since I was 16 and paid into social security. Now that I need assistance, hopefully only temporarily - I do not qualify for it.......Yet, there are other people out there that JUST came into the country and they qualify for everything. I hate feeling this way, but our government gives me no choice. I need their help, but they don't care.

THAT is why I asked for your prayers. Ironically, I planned my request even before my visit to the ER. The visit only made my request more urgent.

Please, if you read this blog, take a moment and say a quick prayer for me and my family. Pray for our strength and guidance as we travel this difficult road. The power of prayer is amazing!

Thank you and God Bless

Pictures - As Promised

2010-10-11T14:57:00.011-05:00

Courtney and Brandon driving the ATV's at the event out in Quogue where Courtney was presented with a check for books for school.

Courtney, Brandon and I at this year's Memory Walk where "henley's heroes' raised $3,800.00.

Courtney, Brandon and I along with Denise and her husband Tom who ran the ATV event . They are good friends of one of my dear friends and during the summer they hold monthly events to give back to different people. They blessed us with a check for Courtney's books.

A picture of Courtney at Fordham University...her dream come true.

Poor Mikey

2010-10-04T12:17:00.003-05:00

For the past week or so, we have been dealing with a pressure sore on Mike's right thigh. We were very vigilant as soon as we saw it, and at one point it got worse, before it got better. Of course, while trying to keep him off his right side, we had to rely more on his left side and back. It was only a matter of time before either one of those areas broke down. It is his back. He developed a sore at the very bottom of his back and we have aggressively started to "attack" it. It's a more difficult area simply by it's location, as it is prone to infection just from being soiled throughout the day. We are doing our best and pray our efforts are successful.
In the mean time, it appears that Mike developed the infection on his toe again, most likely the same infection that took us a good 6 months to completely get rid of the last time. The left big toe is red, swollen and open. The podiatrist will be coming by tomorrow to check it out and hopefully prescribe the same antibiotic ointment and possible antibiotic he took last time. Whenever an antibiotic is thrown into the picture I have to carefully weigh the pros and cons. Most antibiotics are very strong and hard on the system, so if Mike can become uncomfortable from stomach irritation or diarrhea, then it may not be worth administering it. I don't want a possible infection to spread - but if he can dehydrate by treating it, then what do I do?
We had a busy weekend. Courtney came home as usual, to work, but I barely saw her. On Saturday morning we met with the head of the Long Island Chapter of the Alzheimer's Association. She would very much like to start a "support group" of sorts for the children of people with Young Onset Alzheimer's and she asked Courtney and Brandon to be co-facilitators. (Brandon was supposed to go to this meeting also, but he had to put in service hours for the National Honor Society by helping out at his High School's Open House). Courtney is a bit concerned that teenagers won't want to attend, so we'll have to see where that goes. After we left that meeting we did our Taregt shopping and then Courtney went to work (Brandon came home then went to his friend's house). On Sunday my brother treated us all to breakfast, which was a treat for me since I didn't have to make our usual Sunday breakfast. Afterwards I went food shopping, while Courtney went to work. I came home and took advantage of the windy day and did Mike's and my sheets. There's nothing better than getting into bed at night with sheets fresh from the clothesline!! Courtney came home from work and I drove her back to school. I got in at 8, got Mike into bed and then finally......relaxed. Oh, I almost forgot, Brandon injured his arm and cannot straighten it. It seems like a pulled muscle, but we all know what great patients men make :)!

Pictures

2010-09-29T14:05:00.002-05:00

I know I said I would have pictures up and I haven't forgotten, but I just haven't been able to do it. It's been a little over a year without a home computer, so the only way I can download and post pix is when Courtney comes home from school. This is on the weekends (when she works)and I'm normally running around crazy, so it never seems to get done. I want to share these pictures with you and I promise I will as soon as I can.
Mike is "status quo". It's one day at a time....some better than others.

Fever - No Fever

2010-09-24T10:55:00.004-05:00

Last Saturday as I was getting Mike into bed and he felt a "little" warm, but nothing to be crazed about. Much to my surprise, he had a 103.3 fever. I also noticed that he had a pressure sore on his thigh, which was open a little - I did not like the way it looked. The hospice social worker came on Monday and my mom mentioned what happened on Saturday. She in turn called Mike's nurse and so she came Monday instead of Tuesday. When I questioned why he keeps getting these fevers, she just said, "sometimes it's just a part of the process and is not caused by an infection". WOW I wasn't expecting to hear that, but at the same time, reality kicked in. I've been logging Mike's bouts with fever and at first he would get them maybe once every few months, then it was once a month, now it seems like once a week.
Last night, he developed a fever again - 103.5. I had to give him two rounds of Tylenol before the fever broke and he got comfortable. The only difference between last night and Saturday was that last night, he appeared to have some chest congestion. He coughed up some "glop" and he fell back to sleep. Today he woke up with some "gurgle", he didn't have a fever and he was able to cough up some stuff. I just called home and his aide said he seems to be doing OK.
One day at a time.....

Little Kids, Little Problems...

2010-09-21T21:27:00.003-05:00

...big kids, big problems. I've heard this phrase many times over the years, but never have I understood it more than I do now.

I guess it's not so much "problems", as it is dilemmas and hurdles. Courtney got into the school she has always wanted to go to, and while she is enjoying the classes and the challenges they bring, she's having a difficult time connecting with anyone. She has a few forces working against her: she's a transfer student and lives off campus, she's not at school 4 days a week (she commutes home to her job) and the biggest of all - she doesn't drink or go out partying. Understandably, college kids test their new found freedoms, and usually go wild. Courtney is not that type and she can't understand how most kids stay out all night and sleep in all day, sometimes cutting classes. While she didn't seem surprised at this situation at Hofstra, where anyone is admitted, she didn't expect the same from the more difficult Fordham. It's not for the lack of trying either, because she has already joined numerous clubs. What better way to meet people who are interested in the same things as you than by joining film and communication clubs. Despite all her efforts, she's finding that she's definitely the odd man out.

This is also the time of year I will begin looking at colleges with Brandon. The realization that he will not be home next September is beginning to sink in. Courtney tells me constantly that if Brandon goes away to school, she will commute because she knows I cannot get Mike into bed on my own. I tell her that it's not an option, but she refuses to listen. I don't say anything anymore, because who knows what tomorrow will bring, let alone next year. I have taken a few days off to take Brandon to visit some schools he's interested in: Seton Hall, Rutgers and Stonybrook. He likes Syracuse, but that's too far for me to go, so we did the virtual tour. He may also check out Scranton. All this needs to be done ASAP, since his college apps. are due into his college advisor by mid-October.

Courtney has been driving for 2 years and Brandon has finished his driving classes and can take his road test any day now. I can't begin to list all the times it would have saved me SO MUCH had we had another car. Over the summer there were so many times Courtney could have done things for me while I was working. She also got a job, is GREAT, but I had to run her back and forth. Now Brandon is looking for a job and he will need to get around. If we could somehow afford a car, then there's the insurance and gas. Kids have survived without cars for time and again, now mine will have to survive the same.

Where does time go? I remember being up with them at night when they were teething, now I find myself waiting up for them to get home. Little kids, little problems..... Life's little dilemmas...dealing with them by myself, sad of what Mike has missed.

TODAY IS WORLD ALZHEIMER'S DAY. LET'S NOT FORGET THOSE WHO CAN'T REMEMBER.

Feeling Down

2010-09-16T15:00:00.002-05:00

I hope to have some pictures up this weekend from the Memory Walk and the kids ATV excursion. I haven't been feeling well lately, both physically and mentally. Too much is hitting at once, and again, I am in the overwhelmed stage. Each and every time I hit a valley like this, it takes every bit of strength I have to fight my way out. I am blessed that Mike has been in a "holding pattern" and that the kids are doing better. They each had sinus infections, which I think I may have - or it could be my allergies - I'm not sure. Just feel like s*&t. I honestly don't know how much one person can handle. I have never said "it can't get worse" because I know very well that things definitely can. Every morning I wake up and pray that the day will be better and bring some GOOD news. I'm still holding onto Courtney/Fordham to help me get through this - it's been the one good thing that's happened in a while. I will NEVER GIVE UP and will continue to HOPE.

Our Miracle

2010-08-30T12:07:00.003-05:00

For all our blog followers who helped us through last
year's fiasco with Courtney and college, I am
THRILLED to share the news that Courtney
will be attending Fordham this year.
By some miracle, all the cards fell into place and
we moved her in yesterday. It has been a bumpy road since May, that came to an end last Friday when she made her final decision. I give Courtney ALOT of credit for investigating the transfer. Even though it was her DREAM school, she did not want to transfer if it meant: that her credits would not be transferable, that she would have to give up her newly obtained job at The Disney Store, and that she got housing. It took alot of work on her part, but as I've explained, "anything worth having is worth the hard work".
She was placed in an apartment off campus which she was not entirely thrilled about, but as she spends time there, I think she will like it. It has central air, full kitchen, LR & Dr and shares it with 4 other girls. It's located on Arthur Avenue in Little Italy, so I have a feeling she will be dealing with the "Sophomore 15". Fordham had a beautiful candlelight ceremony last night welcoming new students - she's "home" and I coulnd't be more happy for her.
I wear my FORDHAM MOM shirt proudly!

Success

2010-08-20T20:43:00.004-05:00

I am VERY HAPPY to report that this years Lemonade Stand was a HUGE SUCCESS. We raised a little over $1,000.00. The day was beautiful and once again, our friends and neighbors stepped up to the plate to help support a worthy cause. Mike's brother and his 3 boys stopped by to help us and I believe they enjoyed themselves also. A friend of mine from High School (and a bridesmaid in our wedding) stopped by after hearing about our sale on FaceBook. That was a great surprise - and we both realized that, yes, we are getting old!

In this picture are (from left to right): Courtney, Me, MaryAnn Ragona (Head of Alzheimer's Association- Long Island Chapter), Brandon and MaryAnn's mom. They had some our of delicious Lemonade and monkey bread.

FAITH - GUILT

2010-08-13T18:50:00.003-05:00

firm belief in something for which there is no proof......complete trust....something that is believed especially with strong conviction....without question.....

My faith is being tested more and more every day and once again I feel as though I am drowning with no life preserver in sight. With all the interviews on TV, newspapers and radio I have done, I have never really opened myself up completely. I often wonder what people would think if they REALLY knew how much I struggled - on so many levels -each day. Alzheimer's Disease is turning me into someone I do not want to be. I don't like being jealous, envious or angry, yet I find myself fighting those feelings every day. It's difficult to teach my children to be good people when with every corner we turn, there is yet another obstacle. It's a hard pill to swallow when you see others not always doing the right thing - getting rewarded. Sure, we can never know exactly what goes in other's lives, but by God, it's getting really difficult to see the forest for the trees. I sincerely thank God every day for all that I have and I KNOW things CAN be worse, but does that mean I can never feel like I'm fighting a losing battle?

..... feelings of culpability especially for imagined offenses or from a sense of inadequacy....remorseful awareness of having done something wrong...

This is what I feel after I question my faith. All I need to do is look around and I would be able to see many others who have more problems than my own. I struggle with this fact - because there are days (like today) when I don't feel things can get worse. I'm sensible enough to know that this is not true. Things can get plenty worse and I know it.....therefore I question my faith. I find myself in a vicious cycle.

FAITH is what keeps me going. I have to believe that what we do has a greater purpose. I have to believe that one day, things will get better, our struggles with subside and I will experience more good than bad.

When we were going through rough times in the past, Mike would always tell me that "things will be OK". When I asked him how he knew he would say - "I have connections". Each night I go to bed I ask Mike is he could call on those "connections". I miss his reassurances, his calming nature, his protection. Things always did turn out OK - I just have to keep my FAITH.

I Miss Sleep

2010-08-11T07:10:00.004-05:00

For the last few weeks, I have been losing even more sleep than ever. Courtney's new job will sometimes keep her out until 12:30-1:00 and I either wait up for her or have to go pick her up. On nights when she's not working, it's not uncommon for Brandon to go out, so then again I am awake waiting for him. For them it's a non-issue since they are are summer vacation, but for me, there is no summer vacation. Last night I was so excited-----Courtney was home at 6 and Brandon would not be going out. Finally, we can enjoy the night together and I could get to bed early. I did, BUT.....Mike had other plans. At 2:30 he woke up with a fever of 102. Needless to say, I got no sleep AGAIN last night. I'm concerned about Mike and will be calling hospice again this morning. His regular nurse is on vacation for 2 weeks, so we'll see what happens.
I guess I'm just not meant to sleep.....

Lemonade Stand

2010-08-06T10:41:00.002-05:00

Tomorrow Courtney, Brandon and their friends will hold their 4th Annual Lemonade Stand to benefit the Alzheimer's Association. They've been busy baking the fresh baked goods that will also be sold and making the appropriate signs to advertise. We are so happy that the weather looks like it will be PERFECT for the sale and our goal is to surpass the total from last year. As always, I will thank "the crew" by BBQ-ing for them afterwards. It should be a fun - and EXHAUSTING - day.

Mike is status quo, and that's a good thing!

Courtney got a job at The Disney Store in our local mall and they have been working her hard. It's great because she's getting to save much needed money for school, but she's not used to not having a social life. She went out with her friends last night for the first time in about a month and a half. She has been working the closing shift and not getting home until 12:30 a.m. - which means I'm not getting enough sleep because I wait up for her. I'm just SO HAPPY that she got this job, so I don't want to complain. We're blessed. Now if Brandon could only find something.....

Follow You, Follow Me: Our Journey

To My Valentine

Simple Truth

24 Hours

Medicaid Mess

Acceptance

Peace of Mind

Interviews and Studies

Happy Birthday Mike!

Holiday Update Part II

Holiday Updates Part I

Christmas Woes

Alzheimer's Gray

Help Get Courtney on Ellen!!!!!

Quick Update

Thanksgiving Stress

Pre-Senilin 1

Broken Record

Josh Groban

When Your Home is Not Your Own

We took our vows 23 years ago today....

Sores

A Walk to Remember

Family Weekend

Not Sure How He Does It

"S", Sores and Book

When All Else Fails...Laugh

Missing Time Away

Drowning

Late Night Call

Sorry...

Walk to End Alzheimer's

Red Tape

Update

Mike in Hospital

Brandon at College

Fundraiser with Love

5th Annual Lemonade Stand

Bed Sores....I HATE them!

It's Been a While

So Thin

Happy Traveller

Courtney In London

Thank You Linda

We Love Ellen!!!

What's New With Us

Father's Day 2011

Perfect Analogy

My Dear Friend Betsy

Bed Sores...

Maria Shriver Blog Post

Glasses and St. Anthony

The "Married Widow" Dreams

Happy Birthday Brandon!

Hope, Faith and Bed Sores

Today

Update

Uphill battle

Last Night

What else....

Tough Weekend

A True Test of Faith

10 Years of Alzheimer's

Turn Every Two

My Life

New Lay-Out

Divorce

Hopeless

Visit to State Capital

Young Onset

A Sudden Loss

Happy Valentine's Day

****** Mike's Diagnostic Journey *******

Older and Wiser

Wedding Picture

Snowstorm

Rough Days

A Special Gift

Memories

What does he See?

Mike's Diagnostic Journey *