Saturday, September 18, 2010

Rambling thoughts on Alzheimer's

I’ve had some time to think these past couple of weeks. When someone you love has Alzheimer’s you find out that the disease itself is not what you thought it would be.

It’s not just about forgetfulness. It’s not just about senility, it’s about loss.

At first I thought it was going to be about Mom forgetting to do the laundry. Or putting her keys in the freezer and her ice cream in the oven. I thought it was going to be a very gradual, but reasonable decline. A predictable decline. That once something was forgotten, it would always be forgotten. That once a skill was lost, it wouldn’t even be remembered.

In my mind, she would forget words, then how to do something. I pictured myself as being patient and loving throughout this. I mean, how bad could it be to be with someone who forgets what day it is?

But it isn’t an orderly, gradual decline. And there is NOTHING reasonable about it.

Some call it the “unlearning.” I guess that might be one way to describe it- but that isn’t entirely accurate either, for something known on Monday may not be known on Tuesday or Wednesday, but then be back again on Thursday.

There is no sense to this disease. There is a person you love sitting next to you. They look like your loved one. They sound like your loved one and they may even know some of the things your loved one knows…but they aren’t the same person any more.

And when does this happen? You think back and you see signs that were there- 3, 4, 5, or more years ago. But at the time they seemed insignificant. They were all explained away. And probably still could be except for the total of the changes in the person sitting next to you.

I pictured in my mind my Mom loving me the same way she did when I was a child. But she doesn’t. She still loves me, I know that. But there is no longer any nurturing towards me. Strangers, people she barely knows get that part of her now when it shows up. I’m the bad guy. I’m the person who taught her how to do Sudoku (which she sometimes blames for her memory loss) I’m the one who took her to the doctor, I’m the one who said she needed to move in with us. I’m the one who took over paying her bills. I’m the one who took away the car keys. I’m the one who stops her from self-medicating. I’m the one who told her she can’t give Dad his medication. I’m the one who locked up her medications.

I’m the one who tells her no. “No- You can’t go out and buy new shoes every month. You can’t go out to eat every day. You can’t go to the mall and walk every day. I can’t take you where you want to go when you want to go there.”

I’m the she argues with. I’m the one who feels the brunt of her frustration, her anger, her loss.

Others do to of course-Dad, my daughter, my husband, my son. Depending on the situation, they will feel her anger, they will feel her frustration. She can be downright mean to my daughter- sometimes I think she mixes up my daughter and myself. When the two of us are with my mom, it seems worse. She seems very defensive.

I’ve been accused by my mother’s hairdresser -of all people -of taking away all of the things she enjoys for no reason. According to this woman there is nothing wrong with my mother, she just has a hearing loss. Of course she should know- she sees her all of one hour a week, and most of that time my mother has her hearing aids out. So the one place Mom could go and get emotional support, a friendly familiar face and caring, instead has turned into a place she goes where someone is giving her unrealistic expectations, telling her seditious things in order to make her more upset. Instead of working with us to make Mom’s life easier, she works against us and Mom comes home feeling as if we are the enemy. I’ve hesitated changing hairdressers for her because she likes this woman and it is something familiar. But now it has turned into a battle and I don’t have the time, patience or stomach for it.

Alzheimer’s is not for sissies. It is not what I expected. It is not anything that can be planned for. You can’t protect against it. You can’t pretend it doesn’t exist. You can’t control it. There are moments of light. Moments of remembrance. But it is a terrible, terrible roller coaster ride with no seat belts and no way to get off. It takes prisoner of not just the victim, but the victim’s family and friends.

It is about loss. Every day it is about loss. There is not a day that goes by when you can pretend it isn’t happening. Everything in your life revolves around it. It is about loss, sacrifice and it is about love. Only people with great love in their hearts can deal with this on a daily basis without going insane. Love, support, and friendship are all important.

And for me- if I didn’t have my faith- if I didn’t have that Rock to cling to, those strong arms of others to lift me up- if I didn’t have the Body of Christ behind me, filling in the gaps when I can’t do it all, lifting me up in prayer, reminding me over and over and over again how much God loves us- I would have fallen out of the roller coaster a long time ago.

Rambling thoughts I needed to put on paper…


Di said...

for real, i could have written this except put in my dad instead of mom...and of course, the activities are different, but otherwise...sounds the same...thanks so much for "rambling" it helps to know it's not my imagination....thanks again and God bless you real good!!!!!

Mary Beth said...

You remain in my prayers.

Anonymous said...

I too, could have written this on many, many days.

Most of them, actually.

(((hugs))) Thim

Mary Beth said...

This is a piece of particularly powerful writing. I've come back to it several times.