Posted 24 February 2003

Installment 3: This is the third 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

Speaking of "goodbyes," it was June 18, 2001, and the time for my bridge club's annual getaway to Lake Sylvia, near Annandale. That year, it meant more to me than ever, although I was not sure how well Fred would get along alone. I prepared meals for the three days I would be gone and showed them to him in the freezer. They were labeled with a black marker and placed in the fronts of the shelves. All Fred had to do was to put them into the microwave. I called him every day, and he seemed okay.

After a restful but fun-filled vacation, I was driven home by my friend Edith. I hadn't told Fred when we would arrive, because I knew he would be waiting fretfully and looking at the clock if I had. Therefore, I couldn't believe it when he was standing in the hallway of our building, watching out the window for me. I don't know how long he had been there, but he had made a haircut appointment for 12:15 and expected me to know that and be home on time to take him. By some stroke of luck we made it on time. He also told me that he could not find all the meals, but opened a can of soup one day and walked to the corner Holiday station for a cheeseburger another time. He let me know that he didn't gain any weight while I was away. Okay, end of my euphoria.

I learned not to expect praise or thanks for favors, but to appreciate their infrequent occasions. No sooner had I returned from the lake than the old situation resumed. There was a kind of bipolar symptom during which Fred switched from nice to nasty and back. He followed me around the house, which I have been told is called "shadowing," and announced every function or task he intended to perform. In an awakening of sympathy, I wondered how he must have felt while I was away—not being able to consult me about such things.

Back from the lake, as a special treat, I cooked his favorite hamburger hot dish. However, he said the egg noodles were too difficult for him to manage and that spaghetti would have been better. I thought it over and realized that his poor eyesight was partly to blame, and I should not take it personally but realize his problem and frustration. I had to say to myself "RID," which was my acronym for Remember, It's the Disease).

The next day he said there was sediment in our tap water and didn't I notice it? No, I did not. I just ignored that. I will not give in to installing a water system. When I asked our handyman to install a bar by the bathtub, Fred said that he didn't need it. I said to both of them, "But I need it." Anyway, we agreed upon an awning for the patio and, for a change, we were both happy with it.

Another example of Fred's kindness was toward my developmentally challenged son Ted, who is Tom's twin. Ted had managed to save $130 toward a $250 window air conditioner for his apartment, and Fred insisted upon paying the difference. That was his kind, generous, REAL personality, which showed through at times. It was very heartwarming to see that happen, and helped me to deal with the realization that Alzheimer's disease robs a person of his true spirit, and I must not forget it.

At that point, I noted that besides the egg noodle problem, Fred was having considerably more trouble eating, as I had to cut food items larger in order that he could spear them. He also spilled drinks while pouring, and this was not only caused by his eyesight, but his hand was beginning to shake. I was happy to accommodate these difficulties, and feeling more and more sympathetic.

In July of 2001, we went to California with Fred's sister Penny and two of her daughters to visit his other sister Harriet who was in a nursing home with Alzheimer's disease. It was a gut-wrenching experience for several reasons. One was seeing her that way.

Another was wondering whether her brother would get to that point. The third was seeing all those pathetic patients living out their lives in misery—and for how long? As it turned out, Harriet died three months later.

Back at home, I tried to be more understanding, knowing that it could be a lot worse. The dishwasher was loaded sloppily and the air conditioner turned on when not needed, but I made progress in not mentioning these things. I just changed them and hoped he didn't realize it.

One day I made a nice sandwich for lunch from a fresh-cooked turkey breast. He said, "Is this Spam?" I never bought that, as we had discussed our dislike for it. Another strange example of a food problem. I felt that I should change my way of cooking, It did not do much good to fuss, so one night I just gave him a Weight Watchers frozen dinner, which he liked very much!

Other occurrences were more bizarre—some hard to explain and others too embarrassing to mention. On one occasion, in California, Fred forgot to say goodbye to some long-time friends who had stopped at the nursing home. He just walked down the hall, and when I told him the Stewarts were driving away, he became very angry with me and started running along the driveway, shouting after them. Fortunately, they had forgotten something and turned back, just in time to stop and bid their farewells. I had previously told them about his condition, so they did not act surprised at the incident.

By August, Fred was going to bed about 10:00. I stayed up later, which he didn't like but had to get used to. He understood TV programs less and less, and chided me even more about my driving. I "accelerated too much" and "burned up the grass" taking sharp corners. That actually struck me funny, as I am the type who always drives the speed limit. He told me to cut it out when I was picking up around the house for company, as he couldn't stand to see me do it. I said, "I can do anything I want!" and wondered whether I should have. However, I was trying to do what he wanted because he had so few suggestions, but was not sure sometimes what the priority was.

For instance, on a holy day, he didn't feel like going to Mass at 5:00 p.m. but wanted the Harrises down for a drink, so that's what we did, and I really felt good about giving Fred his way. I managed to have lunch with my friends Lucy or Laura, my daughter Ginny or sister Lillian, on Tuesdays when Fred was at the Red Cross. So far, I was getting along with that, tennis, and the bridge club as my "getaways." They were precious and few.

Fred's confusion was now becoming noticeable to other family members and friends who formerly would say to me, "He seems just fine!" A person who saw him for a short time and discussed past events or very small talk could not detect his memory problem. That is why my daughter was very surprised about an occurrence during a family volleyball game. The other players were barefoot, and as Fred wore tennis shoes, they asked him to get the ball when it went over a mound of dirt. He went over, reached past the mound, picked up a big stick and threw it over his shoulder, then went back to the court without the ball. The others all saw it, but I'm glad they did, because I wanted them to see what type of thing was going on, and maybe they could be more understanding and kind to him. When Fred did not converse, he was left out of discussions and then complained that people ignored him.

One Sunday in church, I had the feeling that I was getting almost comfortable with our situation. Looking around at other parishioners who seemed to have the world on a string, I didn't see one of them with whom I would want to trade places. I thought about the dream experienced by my maternal grandmother, who had a lot of hardship and sadness. She saw another woman bearing a tiny cross and was able to exchange her huge one for it. In doing so, Grandma's tiny cross was much heavier than the other had been. I fervently hoped that feeling could go on a long time, but a week later I had a bout of depression that worried me for a while. I could not afford that, but also hoped to avoid taking medication. Something like a picnic at Ginny's helped a lot, because watching her little grandson's antics was an antidote for the blues. On Labor Day, Fred and I strolled around Harriet Island, which tired him out, but was good for him. He was in a pleasant mood later.

The next morning he said that I didn't turn on the night light, which made it hard for him to see when he got up to go to the bathroom. Also, I had failed to turn off the kitchen light. Those remarks in themselves are seemingly trivial, but the importance lay in how I reacted to them. Less than a month previously, I might have said," Do you have any idea how many times I turn off lights after you?" (...not to mention closing cupboard and closet doors, etc.) I was proud of myself when I said, "Yes, I forgot." There was nothing he could say then. There is no use at all in arguing about such things, because the AD mind does not operate on logic, and the patient cannot be reasoned with. I constantly had to tell myself that he could not help himself and was not by nature a negative or vindictive person.

Fred began to insist that I said something the way he heard it. For example, when I referred to a man as a comedian, Fred said, "He's not a Canadian." Rather than argue, I thought a minute and then agreed with him. It really didn't matter! Sometimes I was not so understanding and had become became irritated at his criticism. At other times, like the foregoing, I privately had a laugh over it. Guess I had mood swings, also!

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