Dementia and the Telephone.

My mother turned 73 in the same month she forgot how to use the telephone. We'd talked, my mother and I, about how I might help. Could I find her a phone that was less complicated than the cordless, Caller ID, answering machine number currently installed?

I did research at The Alzheimer's Store - fine, as long as you didn't click off into the products designed for more advanced stages and get emotional - and then my sister and I discussed the picture/memory phones. Though we didn't say anything out loud, both of us we're probably thinking that it would only re-open the door to another problem - my Mom's constant, tearful calls to my busy doctor sister while she was at work. Mom didn't seem quite ready for the dial-less Alzheimer's patient "hotline" designed to prevent those continuous, unnecessary calls.

And then, just like that, the calls stopped altogether. It had larger implications for me, the one that lives far away. I'd get around it by calling early in the morning or late at night and I'd let it ring and ring and ring - sometimes for as much as three minutes straight - to allow her the time to press the right button.

Sometimes my sister would dial me during her visits to the nursing home and help hold the phone to my Mom's ear. Once, the nurse called saying my mother was extremely upset and could I call? By the time I got her on the phone, my Mom had completely forgotten what the problem was. There were times she would struggle to keep up a conversation for more than a minute or two. Other days we'd have a relatively lucid conversation and she'd express her dismay that she hadn't yet met John, but that she "liked what I was doing."

It's hard to know what she meant by that - that she "liked what I was doing." You see, she's *never* liked what I was doing. For decades. I was her black sheep, her scapegoat, perhaps the one who reminded her (I think) of her own hidden mistakes. I yearned for a parent to give me some loving direction, but I did not have that parent. I fled as soon as I was strong enough to go it alone. And maybe a little before then.

After I left home, I had to force myself to call. I flailed my way through my twenties to the background noise of disapproval. I dreaded our phone calls and dragged out the space between them as long as I possibly could. I was amazed by friends who talked to their mothers every day. I talked to mine for one hour a week. I limited my time and could tell by the way she sucked her breath in over the telephone that she didn't like me; didn't like what I was doing. She did not try to help.

It's hard to know if she got what she wanted out of life. Looking at the way it is ending, I can't imagine that she did. It's cruel to say it but it's true. But maybe I can say it - because the scapegoat is the most emotionally honest person in the family. And as long as I'm being honest, there have been many moments during this process that I have felt she didn't deserve the time and love that I've given her over  the last few years. There have also been many moments when I've been relieved that she allowed me to be the kind of daughter I always wanted to be.

And though that only came in brief flashes, relative to the years of our relationship, I find that I really miss being able to talk to her. I feel incredibly guilty about not being able to see her for six months while I was working in Florida. And I'm also in the Christmas spirit, because it's the first Christmas in four years that she's been sick, but [relatively] stable and in a protected environment.

I think alot, lately, about how my life will end and if anyone will be there to take care of me. I want to think it will be John but it's difficult to imagine it. Not because I don't love him or trust him but because I cannot imagine the surrender after so many years of taking care of myself. Even when I wanted some help.

There is a kind of real surrender required before real care can begin. You have to hand someone all your money, your car keys, even the decision about what kind of clothing you'd like to wear to bed. And it's difficult to wrap your brain around the idea that, one day, your biggest task will be to re-learn a kind of childhood. Someone holding the phone to your ear, cradling your independence in the other hand.

 

Comments

[Kristen]

This is an excellent bit. I felt every line of it. It was on the phone that I first truly understood that my mother had entered a new, very warped reality. But she never called me. The black sheep thing is complicated for me. I always knew she loved me. I didn't know then, but do now, that she and I were very different people - me, like my dad, a creature of imagination - while she was very grounded and practical and without a whole lot of my sentiment. Still, I felt safe and loved with her, if not completely understood. And I wasn't a black sheep, though I felt like that in the family group - because I was passionate and opinionated and didn't comply without a fight. But I had some great examples in my life, and I guess I decided to follow them. It probably didn't hurt that I lived in a time when kids' lit glorified character and family and virtue instead of quirk and passion and defiance. So I made pretty fair choices and ended up in okay places. When I needed to take care of myself, I did it - screwed up a lot. But being on my own was really not a relief in my world.

Funny, huh, how we all can end up in pretty much the same place having stumbled down different paths. I have my own problems with my mom - as I think back. I almost forget everything she did for me, the things she did understand and supported. I almost completely disregard the dinner on the table and the clean, safe house, and the way she used to go to bat for me (if she saw the sense in it). She bought me a good used flute once - seems like a little thing, but it wasn't.

She deserves my care, and yet, I am too cowardly to think about having to be the care-taker. I am almost unable to spend time at that beautiful place Dad put her in. I can't stand it that my only living memories of her are getting to be the skeletal lady who's lost her teeth and won't open her eyes and mumbles all the time to people we can't see. I've lost her. I've lost her entirely. And for all that I've just written, there were times when I thought, if we'd been the same age, we'd have made pretty good friends.

This whole thing is so desperately sad and strange - this inevitable winding down of strength and ability to function intellectually and emotionally. I see it right in front of me, but I still just don't get it. I think I don't even get time - I'm not sure I believe in what went before. Being a kid. Having kids that were little. It's so gone. Only the photographs are proof that any of it actually happened.

You can get very metaphysical, starting down that road. So I've gone to - what is it the hymn says - one step, enough for me - doing the next thing to be done, loving the moment at hand (at which I have little success).

I don't believe in the future either, I guess. Which patently isn't true, because I'm still saving money so I can eat in it. None of us know what's going to happen. I have a friend who was washing the dishes one day and said, " I don't know why I keep doing this. I could be dead by Thursday." But her brother smiled and said, "Yeah - but you can't count on it."

[teent]

I like every bit of this, but the last line especially.