I don't know why I keep writing. I'm so frustrated! Frustrated that we are still in this place. Frustrated that there is no cure. Frustrated that more people are being diagnosed. Frustrated that we don't seem to be getting anywhere. Frustrated that it's not over. Frustrated that I'm feeling this way. Frustrated that I can't stomp hard enough to make a difference! (I have a torn meniscus!)
I've met three women this week, who's husbands have been diagnosed with early onset Alzheimer's Disease. I am sick to my stomach with grief for them. I can hardly catch my breathe. I wish I could offer them something. All I can offer them is friendship...a comrade in arms who will fight with them...who will walk the road with them.
All of us have similar stories. None of us asked for this...but we've found ourselves in this situation in which we do not dare think ahead and cannot possibly go back. There's no escaping. We're in it for the long haul.
I've been reminiscing about when this all began. Years ago....I was in my 40's. Jerry was in his 50's. I am thankful our children were grown. One out of college and only two left to go. I'm thankful we had such a good life.
Here we are. Our last road trip, 6 years ago, about to go white water rafting in Yellowstone National Park, Montana. Jerry was in the middle stages of Alzheimer's disease.
Jerry was the kind of husband who was supportive in every way. He adored his children and was the type to cheer down the sidelines of every sporting event. Hold his girls. Hold his boy. No matter how old they were. While I was a little bit of an independent one, he never was the type to bark orders or have his demands. Any limits on me were self imposed. He would have encouraged any endeavor I set my mind on. In his noble way, he supported his family with no questions asked and no complaints on his work load. In fact, he thrived on his success and taking care of us. Yet, he was not the arrogant type. As long as he had his Alabama football, he was happy. Underneath his type A work ethic was this bleeding heart compassionate guy who was always for the underdog. He had a quiet reverence for God that was his bedrock foundation. Looking back, I see how good he was.
I try to tell him, now, how much he means to me. Whenever, I get the chance, I tell him. Yet, I don't know if he comprehends it. Probably not, yet I think he knows. I think that's why he comes running when I walk in the door to his unit. There is a connection that cannot be explained. Whatever it is, I know one thing.... that he knows he is loved and that I am consistently there. He is secure and happy.
So....what that said...Alzheimer's disease, SUCKS! Ok....I said it! I hate that word. But there is no other word that describes it better.
You're probably saying..."Wow! That's a switch. She's saying all those saavy words...then, blasts, "Alzheimer's sucks!" Well.....that's right. Because Alzheimer's does suck.....but, we MUST go on and focus on what we can do and hope that someday, somehow, there will be a cure, or a prevention, or at least HELP for those of us on this road. HELP for future generations! So, we focus on the positive thoughts and forge ahead. That's what keeps we caregivers from going under. We accept the world we are in...and we stick together. We laugh. We cry. We fight to keep on going in HOPES that someone will listen. We're comrades.