Acceptance

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

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.