Saturday, September 20, 2008

World Alzheimer's Day, September 21

The phone rang while I was cooking dinner tonight.

"How do I get Helen's phone number?" The abrupt inquiry was not prefaced by any greeting or introduction, but I recognized my aunt's voice.

"You want to call your sister?" I asked, stalling for time.

"How do I get her number?" Her voice is insistent, but not yet angry.

Well, I don't have it, Aunty. But my Mom does. I can get it for you." Then I casually add, "Why do you want to call her?" Meanwhile my mind is racing. Aunt Helen is a long distance call. Can we afford the expense? Would talking with her sister cheer my aunt, or is Aunt Dora likely to spout angry abuse today, leaving poor Aunt Helen in tears?

"I want her to bring back my car! I'm leaving tomorrow and I need my car."

My aunt has Alzheimer's Disease. The hours between 1:00 and 5:00 p.m. are her personal witching hour. She's been living in a guest home for the past four years, and has been unable to drive for even longer. But every afternoon she gets restless and decides to go home. Sometimes she packs her belongings and strips the linen from her bed. She demands her car -- which she no longer owns. When it isn't forthcoming, she assumes that the attendants at the guest home have stolen it.

"Oh, Aunt Helen doesn't have your car, Aunty."

"Then who does?"

"You asked your cousin Peter to take care of it because you can't drive right now."

"Well, I hope he's being careful with it!"

"Oh, I'm sure he is."

Actually, Peter owns the car. He took over the payments for us when my Aunt had to enter the home. But my aunt has forgotten about that, and it comforts her to think that her beloved car is being carefully maintained for her until she's well enough to drive again.

Because she really doesn't know where she is or why she's there. Sometimes she thinks she's in a hotel. Other times she believes she's in a hospital recovering from an illness, and that soon she'll be able to do without the walker or wheel chair.

"I'm going to be leaving tomorrow," she reminds me.

"Oh, really?" I say respectfully. "I was planning to visit you tomorrow. I hope you'll still be there when I come." (Actually, I visit her most days, usually during her restless period. It calms her and distracts her from her plans to escape. But I wasn't able to make it today.)

"Well, that's nice."

"I'll see you tomorrow then."

"All right," she says graciously. She hangs up, and I wonder how long she'll remain mollified. I hope that she hasn't given the caregivers too hard a time today. I regret not having squeezed in a visit.

In a recent blog post, Ami Simms wrote,
This Sunday, September 21, 2008, is World Alzheimer’s Day. It is a day to remember the 26.6 million people worldwide who have this vile disease that will eventually rob them of the ability to remember and to reason. It will take from them every skill they ever learned and every relationship they ever held dear.
Having a relative with Alzheimer's is like watching a beloved quilt deteriorate. It's as if the connecting threads which hold the quilt together have begun to unravel. The seams begin to come apart. A lifetime's worth of elaborate quilting begins to disappear as the threads snap and small bits begin to work loose from the body of the quilt.

We've all seen antique quilts where certain bits of fabric have simply rotted away, usually as a result of corrosive dyes. For an Alzheimer's patient, patches of one's mental landscape are also disintegrating as a result of this corrosive disease.

Ami Simms, who also founded the Alzheimer's Art Quilt Initiative, designed a Virtual Quilt Patch in honor of her mother who has been battling Alzheimer's for seven years. She's invited all of us quilting bloggers to make a similar patch in honor of our afflicted friends and relatives, and has asked us to share how this disease has touched our lives. She's also asked that we link to her Alzheimer's Art Quilt Initiative which raises money for Alzheimer's research. (Since January 2006 they have raised more than $157,000, one quilt at a time.)

I never know what to expect when I go to visit my Aunt Dora. Most of the time she knows who I am, though sometimes she thinks I'm one of her sisters. During one unsettling visit to the hospital, she lost all sense of time and place. She thought I was one of the nurses, that her father was still alive, and that the hospital was located in her old childhood neighborhood.

We chat together during our afternoon visits. I try to calm her anger or sooth her paranoia, depending on what mood is uppermost that day. I bring her little treats or take her out for coffee in an effort to cheer or distract her. As the threads of her mind continue to unravel, I know that someday even these efforts will be unavailing. I try not to look too far into the future because if Altzheimer's has taught me anything, it's to live in the present -- just one day at a time.