Posted 3 March 2003

Installment 4: This is the fourth 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

By that time, I had to make some resolutions as to how to handle similar situations and make decisions. The latter had to be in consistency with our status quo. I had reached the point where I was becoming used to, but not comfortable with it. However, one really has no choice.

Getting both Fred and myself ready for an outing was a very slow process that really tried my patience. There was no way to hurry him, to church or anywhere else. Once, we just barely made it to Signal Hills where the bus waited to take us to Plainfield for lunch and a play. As there were only single seats left, Fred had to sit next to a man who chattered all the way, and as my husband's conversational skills had deteriorated greatly, he bore the brunt of a one-way discourse. I was privileged to sit next to a lady with whom I could converse. The next time we had a trip coming up, Fred informed me that we had better get there early!

One September day, I decided that our mattress-turning was long overdue, but Fred said that we needed a new mattress—one that didn't need turning. It's a job that he obviously did not care for, of which there were quite a few. I wrote, "... If I could only be more sympathetic to the fact that tasks I take for granted are not only difficult for him to perform physically, but to comprehend how to do them."

Although coping with these incidents began to take on a routine modus operandi it still took a toll on my outlook and energy. As my sister was also caring for a husband with dementia, we compared notes (by phone) and vowed that "we would not be defeated." It was October of 2001, and I accepted a date for a daytime bridge foursome, which was no easy accomplishment. It was fun, but when I got home, Fred said, "I thought you were going to stay all night." I knew enough not to comment and quickly changed the subject. A few days later I went shopping with Ginny, and Fred didn't seem to mind. He was actually nice when I returned, and as he liked Ginny a lot, it may have depended upon whom I was with. He had been watching a sentimental movie that I finished with him, and we both cried afterward. It was a rare sweet moment that I treasured.

The next Sunday, while out to breakfast with our friends, who repeatedly heard him complain about his eggs, Fred declared that they were perfect! He said, "Take a picture." He always had a good sense of humor, and it occasionally showed up. Later that day, as I spoke to him, he turned his head in the wrong direction to listen to me. That was an example of something new and different that occurred, and it would always take me by surprise. A friend whose husband had been similarly afflicted said that I should not let Fred see my reaction, but try to "get inside his head" and think about what was happening. I needed to do that more often. In order to do so, I made the following new resolutions:

Apologize
Explain
Announce
Ask permission

While I had to be tuned in to my husband's feelings and needs, he was not required or even able to understand mine. He would ask me to do something for him—which I did not consider urgent—just when I would sit down to relax or begin a project of my own. He did not mean to be demanding, but I would have a hard time stifling a sigh before I reluctantly put down my work and tended to him. On some Sundays I would go to our condo's Hobby Room and paint while Fred watched football. That would be okay, as he was occupied. However, when he finished, he would come down to get me, and I just put everything away and went with him for a walk or a drive.

Also on Sundays, Fred called his sons and sister on the phone, as they all live in other states. On one occasion, I answered Penny's call and chatted with her for a while. When she asked me about her brother's condition, I left the room to talk. Once when I did that, he gave me a growling look that ticked me off, and I "lost it" and jammed the phone into his hand. As our place is small, I had to walk the hall in order to vent my anger. Of course, I couldn't scream, as Lillian does in her garage, which was frustrating. Fred felt that I had more phone calls than he did—which was true—and Penny was one of his callers that I had no right to talk to. That evening I could not stand to be near him in the den and went to the bedroom and watched a movie by myself. This was a real show of anger and a source of irritation to Fred, as he wanted me by his side at all times. After he went to bed, I e-mailed Penny and used that method of correspondence with her afterward, The outcome of it all was that Fred, on another such occasion, told me that when I took the phone out of the room to talk to my son, he felt like he was "not a member of the household." Poor guy!

On a routine checkup that fall, Dr. Kennedy noticed that Fred had a hand tremor, and after some drawing tests, said he suspected that my husband may not have AD but Parkinson's. We didn't know how to feel about that—whether or not it was good news. When we saw Dr. Ackerman a while later, he insisted that Fred did not have Parkinson's and, yes, it was Alzheimer's. As a source of information, I attended a seminar on caregiving sponsored by our local senior federation and learned that a person could suffer from both the diseases simultaneously. Fred, however, did not admit to having Alzheimer's disease, and he seemed a bit relieved to know that he did not have Parkinson's but only a "memory problem," and I could see no reason to explain it any differently to him.

In order for me to get out, my best friend Laura's husband, Lee, would take Fred to lunch occasionally. This type of thing was a greater work of mercy than he could realize. Also, Fred still managed to sing in our church's funeral choir. He had quit the regular choir because he couldn't read the words and music of a new hymn at the same time. The funeral hymns were usually old standard favorites that Fred knew by heart. He had a beautiful bass voice which was his pride and joy. That and his thick, white hair were sources of many compliments, which friends were kind enough to extend often. Unfortunately, Fred's voice became weaker, and he would ask me why that was happening. That was one of the heartbreaking changes that he couldn't understand, and I could not explain.

His sense of humor, however, would spring up when I least expected it. We enjoyed one drink for Happy Hour, which would not begin before 5:00. One evening I suggested that Fred start mixing the drinks at 10 to five because by the time he had them ready it would be Happy Hour. He said, as he struggled to get up, "By the time I get out of the CHAIR, it will be Happy Hour!" We had a great laugh over that, and it surprised me that he could laugh about himself.

Fred also had a repertoire of jokes that he would slip into conversations with the preface, "That reminds me of a story." People would hush as he held the floor, and that was a source of pleasure for Fred. As his disease progressed, however, he would begin a story and forget how to proceed. I sometimes prompted, but it became too embarrassing for him as time went on.

He began to lose his bearings while we were out in the car. One morning we agreed to get our flu shots at the clinic, and as I parked the car, Fred reached for his bag lunch. That was for his stay at the Red Cross afterward...

Next installment to be posted soon. -ARF