Don't wanna be a tattle tale

I've found it difficult to write this blog. It feels like a violation of privacy. Alzheimer's is such a private disease, even as it exists in the public domain. Things have changed, there has been progression. I must vent somewhere, not just to reach others who struggle with the disease, either as the one who has the condition or as a caregiver, but for myself.

How did we arrive at this moment in time?

Many times, when I walked through the door, Mom sat at her end of the sofa with her crochet hook in hand and Dad sat in his recliner grumbling because all she did was sit there and crochet. He would look up, see me coming into the house, and an expression of relief crossed his face as if he were thinking, "The cavalry has arrived!" (Is that what my brothers see on my face when they walk through the door?) Dad and I always ended up at the kitchen table, talking over tea. He always made sure there were teabags for me because I'm not a coffee-drinker. At some point he began to drink tea, too.

I think he tried to manipulate me some. So I determined early on to be an encourager to him, but honest with him. The crocheting complaint: "Do you want her brain to die? The crocheting and the Game Boy and the newspaper puzzles are what keep her brain alive. Do you WANT her brain to die? Then leave her alone. Let her crochet! Let her play her games!" I have noted the progression of the AD by the level of difficulty of the patterns she uses. At least she can still hold a crochet hook and make those blocks for a bedcover even if she can't figure out how to join them together. I will do that. We will call it one of our partnership projects. We've had a lot of those over the years before she needed any help from anyone.

"I don't think I can do this," he often said, though the rest of the family believed it was his penance (he was Catholic, the rest of us are not)for all of the times that he let her down.

"She stood beside you through a lot, Dad. When it would have been in her best interests to go, she stayed. You owe it to her to stand by her now. It's not like she chose to have Alzheimer's."

He would grumble. I would listen. And I would ask questions to get him started talking about local history, his family, funny things from his childhood. I didn't ask nearly enough questions or learn nearly enough about his family. We didn't get to spend that much time with those discussions. But for a brief time the stress was lifted and he relaxed, and was perhaps re-energized to go at it all again. At least he was at home.

We spoke often about what would happen to Mom when he wasn't here to take care of her any more. There was no way she could live alone. I kept telling him he had to stay, he had to keep living because I wasn't ready to let go. And there were moments when I told myself to make the most of my freedom because it was just a matter of time when it would be gone.

That sounds like a terrible thing to say. Dad didn't think I understood what it was like, what he was living. He didn't realize that he was getting a taste of what Mom and legions of women through the ages had lived. I know what it's like to be limited where you can go and what you can do when you have children, a family to take care of. I knew I would be passed the caregiver torch, so I didn't fight it. I embraced it, even as I was thinking, "I'm not getting any younger. In 15 or 20 years, will I be my mother?" There isn't much consolation in the 50s being the new 40s. I am terrified of being the next generation Alzheimer's patient.

Dad passed away in mid-March. It is nearly June. I have stayed here most of the time since Dad's last hospital admission, sleeping on the sofa. I sleep on the sofa at Mom's house for a couple of reasons: 1.) To sleep in the little bedroom would mean I have moved into my mother's house. I have my own home, a husband, a yellow lab, a tabby cat, flowers to plant, walls to paper, woodwork to paint. I must remember all the reasons I have for being there. That's where my permanent life is. I sleep on the sofa at Mom's house because 2.) If Mom begins to wander--which she did a little when Dad died--I will hear her before she can wander far. This is my temporary life.

My daughters have said to me that their dad could/should treat me better, that he doesn't appreciate what he has, what he could lose if he doesn't take care of me. So this time of temporary life in my mother's house is also a time of reflection about the things that are most important in a life, to a life.

(c)2009 Cathy Thomas Brownfield

Progress

Progress can be good or it can be bad. Maybe it can even be good AND bad.

For some time I told my parents that when something happened to Dad, Mom would not be able to stay alone. She insisted she wanted to stay in the house where she raised her children...We moved here when I was 4 years old. I am the eldest.

Dad passed away on March 18. We found that with repetition, Mom came to the point where she could remember that Dad is gone. She may say, "Where's Bill?" But almost immediately she will say, "Oh, that's right. He's gone, isn't he?" Not bad for someone in late stage Alzheimer's.

Mom has created a new task for me. She is still crocheting, at work on a tablecloth. But she can't get the individual pieces (blocks) to fit together right. So after I graduate from college in two weeks she is going to crochet the blocks and I'm going to piece them together. I guess they aren't really blocks. They are circles, so when they are pieced together, smaller blocks/circles will fill in the empty spaces between the circles. We will do this together, just as we've gone through the AD together.

There are difficult days, as anyone who has dealt with AD or is dealing with it now can tell you. One moment my mother can be delightfully happy. She walks into another room and less than five minutes later can return over-the-top angry and combative. I remember that Dad told me when they were in the car and he was driving, if he made her angry she didn't just hit him, she pummeled him. He stopped taking her in the car unless he absolutely had to. She hasn't threatened me in any way, but she has been angry with me.

Fortunately, I have two fantastic brothers. When I text them and say, "Need you now," they are here as quickly as they can get here. (Fast.) My sister-in-law and my daughters are here to back me up when I need to go to class. Neighbors are available to sit with Mom if I need them. There is a wonderful support system here.

But how long will our arrangement work? Well, we take things just one day at a time. Sometimes we take things one hour at a time, or one minute at a time. So far this is working.

Bless you, wherever you are, as you deal with your Alzheimer's situation.