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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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14. Slow Decline Continues

Gradually over the past couple of years (from 2001 to 2003), Mother's condition has declined both mentally and physically. Soon after she began taking all the new medications, she would get sleepy early in the evening. Now, she goes to bed at about 7 p.m. and wakes up at about 9 a.m. The aide puts her to bed in the afternoon for about an hour too, but that's partly to take some of the weight off her rear so she doesn't get a bedsore. During the day, she is often inalert and sleeping, sometimes with her eyes partly open.

"Mother's ability to interact with people has declined"
Mother's ability to interact with people has declined as well. She was always friendly, but at first some inappropriateness would slip into her speech, as when she referred to Dad as her father. Things always got worse in the late afternoon and evening. For a while, at that time of day, she would recite a bunch of numbers; possibly she was counting something she alone saw. Even after going to bed, she would wake up and recite numbers. Later on, she tended to stop talking spontaneously. If you asked her a question, she'd usually answer, though, and sometimes she'd add a remark to a conversation going on around her. Her answers and remarks became less and less meaningful over time. Now, she'll answer a question from time to time, but she's largely silent.

As Mother's condition declined, the delusions subsided, with only an occasional reappearance. Once in a while, when we were saying goodbye, she'd ask where we were going. When we said, "Home," she'd say, "Take me home too." When we told her she was home, she would immediately acquiesce. After a while, no signs of the delusions remained.

Physically, Mother became unable to walk even with assistance, but she was still able to support her weight on her legs for a while. The aide could pull her up and, while Mother stood with the aide's support, help her dress. After a while, Mother's legs would just crumple under her. To get Mother from bed to wheelchair, we ended up getting a lift, paid for by Medicare.

A problem with sitting all day is that Mother has become susceptible to bedsores and blood clots. One day, her leg swelled up and she was diagnosed with deep vein thrombosis, a blood clot in the leg. (This also can happen to airline passengers and has been called "economy class syndrome" in the press.) Mother had to spend almost a week in the hospital while getting Heparin, a blood thinner, intravenously. When she got home, she had to take the Coumadin blood thinner orally for a while. Keeping her legs elevated seems to help.

"Mother now has so much muscle tension that her arms are always crossed in front of her"
Mother now has so much muscle tension in her arms that they are always crossed in front of her and very restricted in their range of movement. Her hands are always balled tightly into fists. Sometimes, she would get a rash on her palm or her fingers would bruise her palm. Putting a sock or washcloth in each hand helped with that. Still, Mother continued to damage herself. Recently, a wound doctor took a look and found that the tendon going to her thumb was exposed because Mother's fingers were digging into that area. The doctor had Mother visit the rehab department of a local hospital, where they built special hand splints for her. The splints keep her hands open a bit and should prevent that kind of damage in the future.

Mother has lost control of her bladder, which means a lot of adult diapers, bed pads, and laundry washing. Possibly due to her sedentary life, constipation is a problem. At first, prune juice, Metamucil, and senna helped. Now, periodic enemas are a necessity.

Because of her physical problems, Mother lost her ability to use silverware or pick up a glass, so she has to be fed. For a while, she could pick up some kinds of food with her hand, but now even lifting her hand to her mouth would be difficult. A more recent problem is that Mother is having some trouble eating. The aide gives her soft food or uses a food processor to break her food into small pieces. The aide sometimes has to tell her to open her mouth, chew, and swallow. Her swallowing isn't good.

13. Hygiene and Dental Care
15. Living Will
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