Posted 6 February 2003

Installment 1: This is the first of several installments in Sarah Goodwin's "Chronicle of Caregiver." Names have been fictionalized to protect confidentiality. We welcome your comments.

See additional installments: |1|2|3|4|5|6

This story is a compilation of journal entries that I began when my husband Fred was well into the middle stage of Alzheimer's disease. It began as an outlet for the frustrations I felt as a caregiver, and it contained many complaints, but also recorded the ways I found of coping with my role and trying to understand how he felt in his. If my experience can be of any help to others in the same situation, it will serve a purpose beyond that for which it was intended.

On May 18, 2001, I wrote: "As I begin to describe this journey, I have absolutely no idea how it will end." This is how it began:

In October of 1998, Fred had been experiencing what we learned were TIA's, two incidents of his leg going numb. He also told his internist, Dr. Richard Kennedy, that his memory was not very good. Kennedy then referred him to Dr. Andrew Ackerman, a neurologist, who administered a few simple tests which I believe are standard. One is to draw a clock face showing 12:00. Fred drew a circle and the numbers one through three, and could go no further. He was given three words that he was to repeat later, and he remembered two. He was to spell a word backwards. He did so after much deliberation. Then Dr. Ackerman left the room for a few minutes and returned with a video cassette that he dropped in my lap. It was entitled, "TRIAD," meaning an alliance among clinicians, patients, and caregivers of Alzheimer's disease. Absolutely stunned, I said, "Do you mean this is what he has?" and the doctor simply replied, "Yes."

On our drive home, not one word was said. I was in a state of shock, and I can only imagine what was going on in Fred's mind. Later, he called to tell his son Greg the news, saying that the doctor was crazy. Three days later, we watched the tape, but since then Fred never referred to the diagnosis, and was either in denial, just wouldn't discuss it, or actually had forgotten! The last theory is just as plausible as the others.

In the beginning, I would argue with Fred when he said that he had never seen a movie we were watching: "Yes, you did." "No, I didn't. You must have seen it when I was out." This began to occur frequently with TV shows, and later with incidents such as meeting someone or eating at a certain restaurant. When he was clumsy with trying to help me cut up vegetables for a salad, I would privately click my tongue in disgust and decide to keep him away from food preparation. This was my period of superciliousness, and I prayed every Sunday at Mass that I would try to get over it.

Some of the things which were difficult for him could be explained by his poor eyesight. However, the ophthalmologist who diagnosed macular degeneration in the left eye kept saying he was "legal to drive." I finally wrote to him, explaining the situation, because I had experienced some scary near-accidents while Fred was driving. He consulted with Ackerman, and then advised Fred not to drive. This was, of course, very traumatic for my husband, who could not understand why other people with one good eye were still allowed to drive.

At that time I wrote, "Now I am the driver, and we go everywhere together. Correction: he goes everywhere with me, even when it is unnecessary. He hates to be left home alone for very long, which I can understand, but it limits my freedom. I take him to the Red Cross on Tuesdays where he volunteers for a few hours. I go to my bridge club every other Wednesday. Those are my times to myself. Not too many! Furthermore, he criticizes my driving, tells me where to park, but also tries to help by saying, "Okay on the right" when it is not okay on the left!

I began to feel the need for counseling, and decided to attend a DARTS meeting for caregivers. However, Fred insisted on coming along, because I had fibbed about it, saying it was just a general informational session about the DARTS services. Well, about 10 other women were there, all with husbands in nursing homes. We got through the first half of the session without Fred's becoming too suspicious or embarrassed, and I told him we'd leave at the coffee break, saying it was not what I had expected. However, I took Laurie Caminski's card and called her later, making an appointment to see her privately. After that, we began to correspond by e-mail or in person, whenever I felt the need. It was very nice to know that she was there for me.

It was necessary to get advice on how to handle situations that one has never dealt with before. As Fred was by nature a pleasant, agreeable person, it seemed completely out of character when he always saw the negative side of things. This involved decisions about travel, purchases, social events, and many things that I wanted to do. In my mind, he was "The Debunker" or the Devil's Advocate. The latter quality is really not all bad, though, because I tend to be too impulsive and a "cockeyed optimist." In his work as a purchasing agent, Fred had to be very cautious and analytic before making a decision, so I learned to appreciate this and have more patience.

Patience is a virtue that a caregiver must acquire, and practice constantly. The patient has trouble processing information and, therefore, takes a long while in answering a question or trying to formulate a thought into words. Making a decision is a very difficult and slow process, so when I wished to plan a trip, I never knew whether just to go ahead and use my own judgment. On the other hand, I really wanted him to approve. Nevertheless, we cancelled trips at the last minute because I thought he actually did not want to go in the first place. Sometimes this cost money, as with airline tickets which could be used later but with a $100 penalty. One becomes used to thinking, "Well, it's only money. How important is that in the scheme of things?"

Life just slowed down. We would sit and watch old movies on cable TV, because Fred couldn't read for very long. I read a lot, painted some, and began writing, if only for something to do.

One day a terrible thought came into my mind: "This is like the Chinese water torture. Drip, drip, drip..." You want to put it on fast forward—get it over with—not just for your own sake but for that of the AD sufferer, also. But Alzheimer's disease does not work that way. We had to take one day—even one minute—at a time. It is a long, slow process. Looking ahead is futile and harmful to one's psyche. The caregiver must not become ill or go mad, but just plug along. The past is history. The future is a mystery. Today is a gift. That's why they call it the present.

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