Posted 10 March 2003

Installment 5: This is the fifth 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

Every caregiver will hear the admonition, "Take care of yourself." If they are like me, they will say to themselves, "Sure, but how?" One doesn't like to ask someone to sit with his or her spouse—or parent—so he or she can have some time off. In my case, I did not refuse a specific offer to take Fred out or stay with him for a while. These were not frequent, but very welcome.

One such event was Fred's son Doug's offer to stay with him for a week in order that I could fly to Austin, Texas, and visit my brother Ben and his wife Darcy. As Ben and I have always been close, we had several good talks. The three of us had great meals and card games together. In short, it was wonderful! Rested and happy, I arrived home ready for another six months of The Routine. The next "getaway" would be in June with my bridge club.

I made a decision not to dwell on the idea of AD and consider it just dementia, which is the same thing but doesn't sound quite as ominous. It was hardest when Fred was grumpy, but fortunately our arguments were forgotten before long.

We went to Mass on our eleventh wedding anniversary, as it was also the Feast of the Immaculate Conception. Then my son Dan and his wife Annette came over with a fabulous tray of bars from Bireley's! Later, Fred and I celebrated with champagne.

My counselor had lent me a book, Through the Wilderness of Alzheimer's by Anne and Robert Simpson. He was a retired minister who actually kept a journal of his own struggles with the disease. Anne viewed the role of caregiver as her "job"—given to her by God. I decided to view it that way, which helped it become less a burden than a commission. Funny, but I wouldn't have had it any other way. I actually needed—even wanted—to stick it out. I had a job and must do it well.

Christmas Eve preparations were a bit stressful, with 18 people coming for dinner, and it was hard on Fred. He complained about every preparation I made without helping, but being in my way. In spite of that, by the time we were assembled in the Party Room for my son Tom's "Pick-a-Present," in which we all participated, I felt it had been worth it!

Christmas Day was spent at Ginny and John's. Fred dressed himself in a plaid shirt and red suspenders and looked very dapper! However, the next day Fred told me he was glad the commotion of a lot of people was over. Large gatherings took a toll on him.

On the Saturday after Christmas, I noticed Fred slowly shuffling along with a stooped posture and vacant expression, looking very much like a person with Alzheimer's. He was becoming more confused and forgetful, but there were episodes of lucidity, which seemed incongruous. My journal entry read, "It is really strange to observe."

We bought a small, artificial Christmas tree with lights already on it and put all the large ornaments in a brown grocery bag for our charitable organization. It sat by door where I usually put a plastic bag of trash for the compactor, but Fred threw the bag of ornaments down, thinking it was trash. Once again, I knew enough to let it go without a comment. That evening I asked for my favorite rum drink for Happy Hour, and he served me wine, saying it was what I asked for. It's lucky I handled that, because the next time he used two kinds of liquor!

On New Year's Eve, we were dressed up for dinner at a country club with the Harrises. About five minutes before we were to be picked up, Fred complained about the "pleurisy" that he had been suffering from for days, but that was the first I had heard of it. Fortunately, we were able to cancel the date without inconveniencing our friends, and it didn't really bother me. I had learned by then never to have my heart set on anything. I began to say to myself, "So what?"

I began to turn down gatherings, such as Ginny's invitation to join her family for football and hot dogs on New Year's Day. Even though Fred felt better, he did not want to go, and I couldn't enjoy myself if he didn't. This was, of course, a self-serving motive, but it must also be emphasized that I still did love the man and was trying to keep him happy.

Unfortunately, Fred did not seem capable of expressing love verbally, which made it more difficult to deal with his constant need for attention that robbed me of it. I wrote one evening, "This is the end of romance," and recalled how Fred had said to me during our courtship, "You're a queen and should be treated like one." So much for that.

Consequently, while some of the irritating incidents I have described may seem trivial, when one's wits are frazzled from a continuous barrage of them, it is extremely difficult to keep one's composure. I compared it to a paddle ball that when hit will come back and "hit you in the face—and heart."

At that point, we were trying to decide whether to take a Panama Canal cruise that we had talked about for years. Knowing that I would have to take care of every detail like handling the money and leading Fred around the airports and ship, I also realized that it was our last chance for a special vacation.

We made our reservations and went to Fred's favorite men's clothing store for some new slacks and a bow tie. He also had a clip-on tie and a bolo for the semi-formal evenings. I was pleasantly amazed when he said he had to pack his dancing shoes. I had thought that was an activity of the past!

We were to depart on February 25, so in order to concentrate on packing, I tried to cope with everyday annoyances by saying to myself, "It doesn't matter if things are spilled on the counter, floor, his clothing; we're late for church; I have to monitor the humidifier and thermostat.

One mild January day, we took a walk around Harriet Island, and it surprised me that Fred hurried ahead and led the way. It was the route that he and Doug had taken last fall, and he wanted to be in charge. That was a very important event for him.

On Sunday, January 20, 2002 I saw four new examples of his slipping. He

1) could not figure out how to place razor in holder to recharge it;

2) could not understand how to reverse his new belt;

3) put his sock on with the heel sideways;

4) fell asleep in the den in the evening and woke up insisting it was the next morning.

One day I would think he was doing well. Another, I wondered how he would fare on the cruise.

One Saturday Fred decided that we should get rid of our three Corning Ware casseroles because he found them too hard to wash, so we immediately went to the store and bought a new set and gave the old ones to charity. No problem. C'est la vie.

More strange and stressful incidents drove me back to reading The 36-Hour Day. It pointed out that these people respond to reminiscing—naturally—rather than recent events; they can't handle bustling—which I did!—and need a calm environment—slow-moving and one thing at a time.

I was always trying to "get things done," because I had a lot to do.

Next installment to be posted soon. -ARF