by Josselyn B. Winslow
Note: Each issue of Dimensions features a contribution from one of the Alzheimer's groups in Washington. This article is reprinted with permission from the Alzheimer Society Of Washington, and was modified from one published in their July 1999 newsletter. To receive a free copy of the newsletter, call 1-800-493-3959.
Sue and John* were married eleven years ago. After John retired Sue continued to work. About two years ago Sue noticed a change in John. She said, "I was repeating things (for him). I wondered if he couldn't hear me. I noticed that he would be more hesitant. When he went to the store he got confused and frustrated. My daughter came for a visit, and said she thought there was 'something more here.' We visited our family doctor who sent us to a neurologist. The doctor did a number of tests and then said John had Alzheimer's disease. I could have fallen off my chair. That was exactly a year ago. Sometimes I want so much to make things better (but) I know I can't. So I decided to enjoy each day-miracles do happen. For the first time in my life I decided to slow down and enjoy quiet time with him. I left my full time job and cut back to three days (of work) a week."
Sue came to the Alzheimer Society support group early in the year. She told us, "I have a background of understanding disabilities. I raised a son who is autistic. He has abilities and he lacks abilities. Now he is thirty-five and in an intensive support program that I helped found. Like Alzheimer's, there is no pain or suffering with autism. I am not as overwhelmed with Alzheimer's disease (as I would be) if I did not have a son with autism. I learned to be tuned in to special needs-to non verbal communication. I'm good at that."
"John is physically fit-in great health; he doesn't have any pain or suffering. Nevertheless, I have started preparing for the future. I have always lived in the country but I decided we should move. With health issues it was evident that we should move into the city. Also, I've done things such as put up handrails. I want to make things simple and safe. Now I have to think about many things. I have to get the gas. I have to pay the bills. But we are having a wonderful time. John has a sense of humor. We have a very supportive family and our church is helpful."
Last spring, Sue's granddaughter invited her to Grandparents Day at her pre-school in Idaho. Sue told us that John had said that he was not going to Idaho. We recommended that she try to make the trip. She later reported that she had decided that they were going to make the trip, but stopped talking about it to John. Meanwhile Sue had talked about getting a cellular phone. A few days later John unexpectedly said "Yes" to the trip to Idaho but asked her to "promise never to get a cell phone." Sue didn't understand the connection, but it was easy to agree to give up the idea of getting a cell phone- especially since John had agreed to go on the trip.
At another support group meeting Sue talked about the fact that John had forgotten her birthday. When they talked about it John was angry because he had forgotten it. Sue was angry with herself because they had been in the grocery and she had not said to John, "Do you want to buy me a birthday card?" As they talked about the forgotten birthday Sue told John, "You have given me so much-given me so many things." John answered, 'Oh, darn, if I had done this a few years ago think of all the gifts I would have saved."
Sue added, "I thought I'd always be an advocate for schools -for kids" but she realized that the priorities in her life have changed. She continued, "Now I focus on taking care of myself. During the winter I joined a women's fitness club. I look forward to the support group. I go to garage sales, too. People laugh but that's my 'up.' I hope to maintain John at this level as long as possible (but) I won't be able to take care of anybody if I don't take care of myself."*Names changed.
Top of Page | Previous Story | Next Story | Autumn 1999 Index