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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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8. Living Arrangements and Daycare

When Mother had started doing less around the house (even before a neurologist had noted any problems), Dad took up the slack. He said he was up to the task, although it was not easy for him. He was then in his early eighties and he had health issues of his own. Nevertheless, it worked out all right for a while. To ease the cooking issue, they regularly drove to the senior center for lunch. Soon, however, it became clear that assistance would be helpful.

"Muscle stiffness affected the flexibility of her arms and legs"
In addition to doing the many household chores, someone had to help Mother with her personal needs. Mother's walking had become impaired. Soon, muscle stiffness affected the flexibility of her arms too. Although she knew how to dress and undress herself, it became hard for her to do it herself simply because the range of movement of her arms and legs became restricted. For the same reason, bathing became difficult. Our parents already had a shower bench, but now our sister came over to help Mother bathe. Another problem was that Mother had started using the bathroom very frequently. She felt the urge to urinate from one to three times an hour. She was taking Detrol to try to control this, but it didn't help. We suspected that she might have been afraid she would wet herself and was visiting the bathroom frequently as a precaution. In any case, she could go to the bathroom by herself, but it meant going up and down a half flight of stairs and her stair walking was shaky.

At first, we got an aide who came over three times a week, for a few hours each time. She assisted Mother, did housework, and prepared a meal. We had found her through an agency used by an acquaintance whose mother had had Alzheimer's disease. It quickly became clear that this wasn't enough assistance.

In looking for more assistance, Dad called a friend of Mother's who worked in social services. She recommended that Mother might benefit from going to senior daycare. This seemed reasonable. By this time, Mother had lost interest in many of her usual activities, so it would keep her occupied and it would give Dad a break from Mother, since the two of them were now together constantly. We visited a daycare center, and Mother agreed to give it a try. A week later, Mother went for her first day in daycare, she was introduced into the group, and we went to another room to give her a chance to become acclimated. After a few minutes, she wanted to go home. They tried to distract her, but to no avail. She insisted that she didn't fit in because, she said, all the other people there were so old. The director of the center thought that Mother was still thinking of herself as she was before she became ill. Altogether, Mother spent no more than half an hour in daycare.

"If they moved into assisted living, when Mother's condition deteriorated, they'd have no choice but a nursing home"
Another issue raised by Dad was that it might become too difficult for Mother to live in their house. It was a split-level, which meant that the bedroom and bathroom were on one floor, the kitchen and living room on another level, and the outside was on still another level, and Mother was having trouble with stairs. One idea we investigated was assisted living. We visited three assisted living complexes. All seemed very nice, had a good range of activities and facilities, and the food looked good. All were quite costly, however, and not all were set up to provide sufficient assistance. One assisted living complex told us right away that it wasn't an appropriate place for Mother, and this was when her condition wasn't too bad. Another had different levels of assistance, each with its own cost structure, plus you could hire your own aide for more help. While the cost was discouraging, one other factor worked strongly against these places: Mother's condition was progressive, and there would come a point when no assisted living residence could provide adequate care for her. One facility had an adjoining nursing home if things came to that, while a second had an Alzheimer's ward. (An Alzheimer's ward would not necessarily be appropriate for people with Lewy body disease, who lack the mobility that people with Alzheimer's generally retain.) Dad strongly felt that Mother should not go into a nursing home, because he didn't think she would receive the proper care and attention there, but if they sold their house to move into assisted living, when Mother's condition deteriorated, what choice would they have?

Apart from assisted living, another idea Dad entertained was moving into an apartment. Again, cost was a factor because they could live at less expense if they remained in their own home, which was fully paid for. An additional consideration was the limited space that would be available in an apartment. Still another concern we had was that Mother's confusion might worsen if she changed environment.

As it turned out, staying in the house had its benefits because it provided space for a live-in aide and for everyone to be able to have some breathing room.

7. Dr. Jekyll and Mrs. Hyde
9. We Need Aides
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