Reading About Alzheimer's Disease

As may have been apparent, my previous post was cut and pasted from my other blog, Quilting Bibliophagist. Just to get things back on topic, I thought I'd briefly write about the books I've been reading on the topic of Alzheimer's disease and memory loss.

The first one is The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy L. Mace and Peter V. Rabins. As might be gathered from its lengthy title, this is the comprehensive book that covers everything you might possibly need to know about caring for a person with dementia. Whether you need general information about getting medical help or specific information about particular problems relating to the daily care of the patient or the the varied behavior problems he may present, this is the book to go to. It's clearly and competently written and I strongly recommend it.

The second is Alzheimer's Early Stages by Daniel Kuhn. The first part of the book focuses on the possible causes of Alzheimer's, its early symptoms, and the most recent progress in its treatment. Parts 2 and 3, which deal with caring for the patient and caring for yourself, have a less clinical and more human tone than The 36-Hour Day. For instance, one chapter deals with the different ways that patients with Alzheimer's experience the disease. (Would you believe that there are actually five books written by people who had Alzheimer's?) This chapter has helped me to both sympathize and empathize with my aunt.

Despite being a voracious reader, I found it difficult to read either of these books for very long at a stretch. It wasn't the writing; it was the subject matter. However, I devoured Carved In Sand: When Attention Fails and Memory Fades in Midlife by Cathryn Jakobson Ramin.

The author is a journalist who began to wonder what was happening to her mind. She felt vague and foggy. She'd barely crossed thethreshold into middle age, but she was losing her edge. She could no longer mentally keep track of her busy calendar. And as a journalist, she was more than a little disconcerted when the precise words she needed for a story began to elude her, and her thoughts became so evanescent that they evaporated even as she picked up a pencil to record them. Then she became aware that many of her friends andcolleagues were suffering from the same problem . Some of them were scared. (One woman, a person whom the author had always considered one of the sharpest people she knew, even quit her job because she could no longer bear the strain of trying to appear as mentally alert as hertwenty-something colleagues.)

The author decided to focus her journalistic skills on the problem. Was middle-aged memory loss normal? Could it be reversed?

(I myself am 56, and I've seriously considered having a T-shirt made with, "Brain Like A Sieve" lettered on the front of it. So I have a personal interest in the author's quest.)

What she discovered is that what we experience in middle age is not simply loss of memory. There is also a change in the speed and manner with which we process information. Yes, menopause really does make you stupider. And (in her case) blows to the head earlier in life will affect your memory years many later. Poor diet can starve your brain; an improved diet and sophisticated supplements may improve your mental abilities but will require an awful lot of prep time. She also tested the effect of both physical and mental exercises. She even tried out a number of drugs reputed to enhance memory, but with varied levels of success. (That part was kind of scary.) Her conclusions are more personal than scientific, but I found her book to be a fascinating read. (I just hope I can remember where I put the book before it's due back at the library!)

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.