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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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9. We Need Aides

Living at home brought the issue back to finding an aide who could work more hours than the one we then had. The daycare center had given us a list of aides and agencies they were familiar with. One aide, who was highly recommended, already cared for a man with Alzheimer's disease, but only in the afternoon. She could work mornings for us, and she had a friend who could take the afternoon shift. They were very nice and did a great job of cleaning the house. They did a little cooking too and helped Mother go to the bathroom. This was important because she was shaky on the stairs and she started to become confused in the bathroom. First, she sometimes forgot exactly how to use the toilet paper and where to dispose of it. Then, she sometimes wasn't sure where to sit in the bathroom. It soon became clear that Mother needed help getting ready for bed, which was after the aides stopped working, and then there were the hard-to-deal-with delusions, frequent in the evenings and not stopping for the weekends when the aides didn't work.

Starting with the daycare's list, as well as other agencies we knew of, our sister made many calls to find full-time aides. Some people on the list were just individuals without any special training, while others had experience working in nursing homes. One, who was expensive, was a nurse who moonlighted as an aide. There were also several agencies. Some seemed to specialize in getting aides from certain countries, like the "Polish girls" and the "Slovakian girls." Some agencies required families to pay for special visits from supervisors. We also found that there are companies specializing in eldercare case management. While pricey, some of these may take care of most aspects of finding and managing aides.

"The job soon took its toll on our first aide, and she suddenly had a family crisis"
The first full-time aide we hired was a Jamaican woman. Initially, we thought that if we had a full-time aide during the week, our sister and Dad could care for Mother on the weekends. But as Mother required more assistance, we hired another aide to work on the weekends. Our sister was in charge of finding, interviewing, and hiring the aides. The first full-time aide was shy and not as experienced as the aides we would later hire as Mother's condition worsened. When we hired this aide, none of us fully realized how much work her job would entail. Soon the job took its toll on her. Mother was waking up constantly at night to use the bathroom, and the aide wasn't getting any sleep. Mother's ability to walk up and down stairs was increasingly difficult, and because of the arrangement of the house, she had to navigate the stairs many times throughout the day. Then, of course, there were the delusions. After several months, the aide unexpectedly announced that she had a family crisis and had to go to Jamaica immediately.

Mother's circumstance being what it was, we had to replace the aide as soon as possible. Thus began a procession of aides: weekday aides, weekend aides, and vacation fill-in aides. Some aides stayed for several months, while others lasted for only a few weeks. Typically, they left due to a situation in their own family or to take another job. Our sister began to keep a list of standby aides we could call if an aide announced an unexpected vacation or quit. Instead of using an agency, we had the most luck finding aides by word of mouth. Many friends or acquaintances have had an elderly relative who was cared for by an aide, and either that aide was now available or knew of another aide who was. Still, we always have to scramble when we need to find a new aide.

We are fortunate that our current primary aide has been with us for over two years. She has had a lot of experience caring for elderly patients. Our weekend aide is not as experienced, although she cared for an elderly woman before coming to us.

"Live-in aides provide excellent care but are a mixed blessing"
Live-in aides are a mixed blessing. They generally provide excellent care for Mother; without them, it would be impossible for her to live at home. The tradeoff is that there is a loss of privacy for Dad and they have their own way of doing certain things. For example, they insist on washing the dishes by hand, rather than using the dishwasher. Furthermore, there have been personality differences that we've had to overcome. Although most of the aides have been agreeable, one of our best aides has a strong personality and doesn't like to be told how to do things. On the one hand, this leads to her managing Mother's care and the household quite well (she's industrious and doesn't have to be told to do things). On the other hand, if Dad or another family member doesn't like something, well, voices can be raised on both sides. Of course, we are reluctant to offend an aide for fear that she might quit and leave us stranded at the last minute. When an aide bumps Mother's wheelchair into a table, it's often best to bite your tongue.
8. Living Arrangements and Daycare
10. Things Get a Bit Worse
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