Peace of Mind

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

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!

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

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

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

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

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