|Joe and I in Las Vegas 2015|
Monday, December 28, 2015
ALZHEIMER'S: A YEAR IN THE LIFE
January 13, 2016 will mark the first anniversary of this blog. Yes, it’s been one year since I decided to “go public” or “come-out-of-the-closet”, so to speak, with our journey into the world of Alzheimer’s.
I wasn’t sure it was the right thing to do, if writing a public blog would somehow become an embarrassment or humiliation for Joe and for our family. I didn’t know how people would react to so much openness about our struggles; would they think I was trying to garner sympathy or just indulging in our troubles? Would writing about my life provide psychological relief, or would it make things worse?
I have always been able to see the humor in life’s experiences (good or bad) and laugh about them. But Alzheimer’s is serious business. Would I offend readers by making light of all the craziness that comes with it?
There were no clear answers to any of these questions.
I decided I would have to focus on my own experiences with this disease, to speak solely from the point of view of a caregiver. I would never be able to feel what Joe was feeling, hear what he was hearing, or see what he was seeing, much less capture it in print.
I also knew that there would be things that I just couldn’t share and, there have been many.
Every day has brought contradictions to what I thought I knew and inconsistencies that create a paradox in my thinking. I’ve often questioned what I write, fearing I might be in denial or becoming paranoid. Are things really the way I think they are? (This disease can often play tricks on the caregiver.)
With that said, here we are, with 31 posts hanging out there in the vastness of cyberspace. So I asked myself, “Would I do it again?”
The answer is simply, “Yes.”
There have been many positives that have come from writing these posts. But one of the most surprising has been Joe’s reaction to them. They have become “his” posts as much as they are mine. He’s read every one (although I now read them to him), and seems to gather satisfaction in the fact that people better understand his struggles with Alzheimer’s. By personifying the disease as “Al” it’s helped Joe see his disease as something he can fight while trying to hang on to himself. It isn’t just a clinical description, it’s Al, and even Joe knows Al sometimes needs a kick in the butt.
The posts have kept us connected with a world of friends and a community that stretches around the globe to over twenty countries. The feedback from that community has been a bright light into what can sometimes be a dark and hopeless pit.
And, finally, I’ve enjoyed writing the posts. It truly is cathartic. I feel stronger by openly sharing and expressing what it’s like to be a caregiver for a spouse living with this disease. That strength helps me swim against the current in the Ocean of Alzheimer’s. I feel you are all here with us, ready with the life boat and a hug.
So, Happy New Year to our family, friends, readers and fellow caregivers around the world. May you find hope and the strength to bear your own struggles, whatever they may be. I’ll keep posting and have little doubt that there will be plenty to write about and, maybe even a few chuckles.
“Challenge yourself with something you know you could never do, and what you’ll find is that you can overcome almost anything.”
Okay, here is one of my favorite Alzheimer’s jokes…
There was an elderly gentleman who was suffering from Alzheimer’s. His wife of 40 years loved him very much, but couldn’t handle him any longer. She took him to a memory care facility. At the facility while she was filling out paperwork, a nurse had the gentlemen sit in a chair.
Suddenly the man starting slowly leaning to his left. The nurse ran over and put a pillow on his left side to prop him up. A few minutes later, he started leaning to his right. Again, the nurse ran over and put a pillow on his right. Then he starting leaning forward. This time, the nurse strapped him into the chair. About this time his wife, having completed the paperwork, walked up to him and asked, “How do you like the place?”
“It’s okay,” he said. “But, they won’t let me fart!”
(Joe really laughed at this one.)
P.S. A special thanks to my editor Kathleen, who’s helped build my confidence to write.