Monday, January 30, 2012
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.
Monday, January 23, 2012
- 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.
Tuesday, January 17, 2012
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!
Friday, January 6, 2012
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"!
Monday, January 2, 2012
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!
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.
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.