There is always the question about how much information should be made public. I’ve gone back and forth on this. I have concluded, though, that the more information people have, the more understanding there will be, and I believe that the more we focus on the disease, the sooner there will be a cure – or at least an effective treatment. Thanks to President Ronald Reagan, Peace Corps Founder Sargent Shriver, singer Glen Campbell and Tennessee Women’s Basketball Coach Pat Summit, and their families, Alzheimer’s is no longer a secret. So how can I justify being silent?
Dad, who passed away in 2012, was diabetic and developed Alzheimer’s (studies show a connection). Mom’s three sisters all developed Alzheimer’s before she did, proving that her side had the “family curse” as she always called it. Sooooo, I’m diabetic and have two parents affected by Alzheimer’s. Care to take a stab at predicting my future?
Here’s my plan for that. With current medical treatments (and yes, I’m counting on a major breakthrough), I figure I have 20-30 good years max, so I’m not waiting to live my life. Trip to Florida? I’ll take it. Chance to retire early? I did it. Bucket list? Game on.
It’s easy to be in denial, and we all were for some time. We knew it was lurking, but it was easier to ignore it……..until we couldn’t. There’s always that thing, that action, that moment, when families have to step in, whether they’re ready or not. With Dad, it was a serious driving error, which he never would have made if he were his normal self. Thank God no one was hurt, but we knew that had to be the end of his driving. So we were forced to enter the world of Alzheimer’s that day, and as we were adjusting to that new normal, we gradually learned there was more in store for us.
I had given Mom a framed picture of the girls and me. She loved it, oohed and aahed about it for some time, and took it home with her. Then a week later, when we were on the phone, she chewed me out because she had found the picture at her house and I hadn’t even told her about it. Yep, there it was. I was so not prepared. SO not prepared. I even told my sister about it and said, “I know it happened, but I’m choosing to be in denial right now, because I can’t deal with the thought of losing Mom.” She understood, and agreed, and life went on.
And that’s what you do. You let life go on until it can’t anymore. And then you deal. You plan for short amounts of time. You plan for every possible outcome for every possible situation, and you plan to have your plans change when you least expect it. That is the life we live now.
I have to say, though, even with Alzheimer’s, there is humor. When we knew we had to stop Dad from driving, I was trying to explain it to him. Nothing was working. I finally played the child card, knowing how much he adored his own two granddaughters. I said, “Dad, what if you had killed a child?” His response, as he looked directly at me, was “I’d like to kill a child right now.”
I hope you’re laughing at that because that’s funny stuff! And yes, I will say, a warped sense of humor becomes quite an asset. Fortunately, I lucked out in that area.
There’s a thing you learn to say. I got this advice on the alz.org message boards, and I’ve used it a lot. “It’s not the person. It’s the disease.” You have to remember they are not consciously making bad choices or doing things to drive you crazy. Their “reasoner” is broken (another thing I got from the boards). As I say all this, sounding like I might actually know things and I’m so “aware,” let me say, there are many times I have to repeat these things to myself. I mean repeat them over and over and over to myself. “She’s not doing this to make you crazy, Andee. It’s the disease.”
I do have to say walking with Mom on the journey is not even close to the challenge of being on the journey with Dad. He had always called the shots, made the rules and decided the plan. Most of what he accomplished in life, and there was a lot, was because people told him he couldn’t do something, and he proved them wrong. So imagine his frustration when we told him he couldn’t drive, and if he tried, we’d remove his car. (It was one of the rare times that all three of his children were in agreement, and we had a plan to do so if necessary.)
Yes, one could easily sink into a depression about this, but that helps no one, so treatment for that is essential.
I could also be angry about it, but if I wanted to waste energy and emotion being pissed off, I would start with leukemia taking my friend, Mindy, from her beloved children when they were just 10 and 12 years old. Then I would add in Ashley, an amazing young mother who’s fighting a battle with stage 4 breast cancer. And don’t even get me started on 20 first graders and six heroic adults at Sandy Hook Elementary School. If I chose to be pissed off, I guarantee you those would be my top three.
But (taking a breath), I won’t let myself go there. Alzheimer’s sucks. It totally sucks. But it is what it is.
And even with Alzheimer’s, there are silver linings.
These are mine:
- My mama is not in pain.
- My parents lived frugally and planned for their later years very responsibly, so for now, we have the luxury of help from paid caregivers (who are such gifts to us I cannot do them justice in just a few words here).
- Both of my parents were blessed with long, happy lives, and they were/are grateful for them. And Alzheimer’s didn’t hit them until they were in their 80s. Others are much less fortunate.
- Many people with Alzheimer’s have personality changes, usually in a negative way. Mom is still the sweet, funny, caring and compassionate woman she always was. Our geriatric specialist tells us that if her personality hasn’t changed by now, it probably won’t. That is huge on the list of silver linings.
- And there’s this. I have the opportunity to spend two days a week with her. Would I do that if she didn’t need me? No, I’d be busy with my own life. Yes, there are some days I spend a lot of time taking deep breaths. But we have good times together. We watch TV, we chat, we laugh, we go to her weekly hair appointment (because life revolves around that), we go to her favorite Five Guys (I’m sooo tired of Five Guys!), we do her grocery shopping, we go for drives along the river or to look at changing leaves, we laugh some more, we look at pictures, we enjoy her kitty (formerly mine, fell in love with her, ditched me for her, traitor), we talk about the kids and especially the great grandson she adores (understatement). She appreciates the simple things in life. She always has, and spending time with her has always been and still is a blessing.
I know it won’t get better. We will have to address things as they come. Our plan is to keep her in her home with the help of caregivers (our angels). We think we can do that, but again, we have to plan for every possible outcome.
I also have had to prepare myself for that possible dreaded moment that she might not know who I am. This is my plan for that if it happens. I will remind myself that I still know who she is, and I’ll love her all the more. At least there’s something I can still control.