Dementia |

Image by Sailing “Footprints: Real to Reel” (Ronn ashore) via FlickrI stood at the door of the men’s washroom in the specialists office yesterday, waiting for my Dad to come out. We were there for his quarterly checkup, and Dad had to go to the washroom. It’s not that he can’t go to the washroom by himself. Actually, it IS that he can’t go to the washroom by himself. Not at the doctor’s office. Because every time he comes out the door, he gets lost. The first time it happened, another man found him wandering down the stairs. It scared the heck out of me. So now, every time he has to go, I wait by the door so I can walk back to the waiting area with him.

Yesterday was like any other visit, except for the fact that I suddenly realized how I’ve become somewhat of a caregiver to my parents whenever I am there. My father is in a care facility because he has Alzheimer’s and my stepmother lives in a townhouse, blind as a bat with a bum heart, a pacemaker, recovering from two broken hips. I travel over at least once a month to spend two or three days, to help out wherever it is needed. My sister interacts with them more regularly and deals with more than I do because she lives closer. And between the two of us, we have become their support system. They have friends who help out as well, but the main part of it is up to the two of us.

It speaks to that reversal of roles that happens once parents become elderly, and I guess the whole transition happened gradually. But it started to change about six or seven years ago when my stepmother had to have open heart surgery and my father thought she was going to die. I traveled to the mainland to provide support for my Dad during my stepmother’s surgery and recovery. He was confused about her condition, and that confusion eventually lead to the diagnosis of dementia, “probably” Alzheimer’s. My stepmother recovered from her heart surgery, but one thing after another kept happening; first one broken hip, then the other, then a diagnosis of macular degeneration which slowly blinded her, then a pacemaker, then a hernia operation. And my father’s dementia was eventually accompanied by kidney disease and prostate cancer.

I found myself going over quite often at first, every two or three weeks as my stepmother recovered. I kept thinking it was only temporary, but as they both began to struggle through their various physical ailments, I eventually came to realize that traveling there was just going to become part of my routine. And so it has.

When my father came out of the washroom at the doctor’s office and we sat down in the waiting area, I watched an elderly woman come out of the office and prepare herself to leave the building. She sat down carefully, placing her cane beside her, and gingerly fingered her purse, looking for the zipper. It took her awhile to find it, her fingers shaking slightly at the exertion, but when she did, it took her another while to feel and see what she was looking for. It was a change purse, and she was likely trying to set aside change for the bus. She had to count through the change several times to make sure she had it right. Then she began the process of putting her change purse back where she could find it, and slowly zipped up her purse. When that was finally done, she fumbled for her cane, and eventually was able to lift herself up out of the chair. Then it was the slow, careful walk to the elevator.

I looked at her and marveled at how much this old woman was doing for herself, how even though it took her so much time and patience, she managed to get herself to and from an appointment in downtown Vancouver. Who knows how far she had to come and how early in the morning she had to get herself going JUST to GET there. In the last few years, watching my parents grow older and more dependent on us, I’ve found an appreciation for just how much work it takes to be old. I looked at the elderly lady again and saw myself some day. I hope.

Image via Wikipedia

This morning I decided to weigh myself. It was a bad decision, but also a good one in a totally unexpected way.

We have a scale in our carpeted bedroom, one of those digital scales…you press your foot on it to turn it on, and then once the 00 shows, you step on it. I have had trouble getting it to work lately, and I think it’s near broken. It keeps showing an error when I step on it (maybe it means I’m just too light to be weighed? Nah…), so I have to put a book under it so that the surface it sits on is hard enough to register.

I grabbed a book that was large enough for it to sit on, a black binder. It worked, so I got on it and up popped the numbers.

Ugh.

But my weight, thankfully, isn’t the subject of this story. The black binder is.

Inside are the pages of my father’s autobiography written a number of years before the onset of his dementia. I have three copies of it now. They used to be at his place, but he’s in a care facility now so I have inherited all but one copy that he keeps there. He was not the first to write one; his father, my grandfather wrote his story a number of years before that, and that’s where the whole thing started.

My Auntie Edie, my father’s sister, loved to write poetry and, inspired by my grandfather, she also decided to write her autobiography.

I found out a few years back that my grandmother used to make up songs. Although I never met my grandmother (she passed away a few years before I was born), it gave me a bit of a connection to her since I eventually became a songwriter myself. My father’s brother, who is a professor of political science at Boston University, is also a writer. He has co-written a number of books on various political subjects over many years. So for me, the urge to write seems to be in the genes.

As I put the scale and the binder away, I thought again about my Dad and how it was a wonderful thing that he had written his life story down. My girls will read that thing one day, and my grandfather’s story too, I thought, and I’m going to write one when I’m a little older, so they’ll have an awful lot of reading to do.

My mind wandered into the future, past a few generations or so. Wouldn’t it be wonderful if one of our future ancestors (is there another name for future ancestors?) had a whole library full of autobiographies to go through? That would be a precious thing to some. I know it would be to me.

I shook off my depressing weigh scale incident and got on with my morning, ran a few errands and then I sat down at my computer to find an email from my cousin Karen through Facebook. I got a little tingle up my spine as I read it. I never realized that she was a budding writer too; she was sending me a link to her first blog entry which she completed just today. Is that what you would call serendipitous?

As it turns out, over the years she has been encouraged by others to write, just as I have.

And now, here I am, writing about writing. I don’t consider myself a great writer by any means, but I have always felt this urge to communicate something and it seems my life has become pretty much about that.

First I wrote songs, then I kept a journal, and teaching guitar, which is what I presently do, is a way of communicating too. I am fascinated with how people learn, and I’m always looking for a better way to explain something. I drive my kids nuts with my habit of saying the same thing about ten different ways, until I feel like I’ve found the “right” expression.

I write three blogs…this one, a music news-related one, and a songwriting one. So I definitely have a writing bug. I love a good story, and a good storyteller. There is an art to it, one which I feel like I’m only just beginning to understand.

So I’m happy to see that I’m not the only one of this generation of my family who writes. My cousin’s daughter and one of my daughters also appear to have a writing streak which means it may very well carry on down the line, just as I was imagining this morning.

That is, AFTER the depressing weigh scale incident…

Irene Jackson

From The Inside Out

Category Archives: Dementia

Becoming A Caregiver

The Writing Bug