Wednesday, December 14, 2011

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 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 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.

Thursday, December 1, 2011

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