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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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20. Stasis (May 2004)

From week to week, it's hard to notice changes in Mother's condition, and that's made it difficult for us to write a journal update. But now when we look back, the operative word is stasis. In the April 2003 and August 2003 updates, things weren't looking good, mainly because Mother had eating problems and bedsores. Now, Mother is eating fairly well and her bedsores have healed.

"The operative word is stasis ... Mother is eating fairly well and her bedsores have healed"
As Mother's eating problem worsened, the aides cut her food into smaller and smaller pieces. Now, they use a food processor to chop solid food up. When they put food into Mother's mouth, she chews and swallows. Occasionally, she'll swallow wrong, but her eating doesn't seem like the serious problem it did before.

Careful attention to Mother's bedsores fixed that problem. Mother sleeps on an air mattress, and the aides shift her position periodically. One aide also gives her a gentle massage once in a while to get the blood flowing. It seems like the only wound Mother gets is one on her ear from lying on her side, but even that is infrequent.

Mother had had a constipation problem, but that was resolved as well. One of the aides has a friend who works in a nursing home. The friend gives her portions of a prune concentrate to feed to Mother. A regular dose of that really does the job. Mother used to need a couple of enemas a week. No longer. We believe the product is Fruit-Eze. When it isn't available, the aide has stewed prunes in prune juice. This is practically the same thing and seems to work as well.

Phlegm has become an occasional problem. It collects in Mother's throat and she seems to be too weak to cough it up. Mother regularly takes cough medicine to help break it up. In addition, two or three times a week the aide uses a strange toothbrush to reach in and pull out gobs of phlegm. The toothbrush is a piece of foam on a thin plastic dowel. A neighbor who is a nurse gave us a few. Apparently, this kind of toothbrush is used in hospitals and nursing homes.

"Mother's extreme rigidity continues"
Mother's extreme rigidity continues. Her hands are always balled into fists and her arms are crossed in front of her. Touching her arm reveals how tense her muscles are. When touched, she usually flexes her arm even more. This winter, Dad had a doctor come over to give Mother a flu shot. He wanted to take her blood pressure, but he was afraid he'd break her arm if he tried to straighten it. Her legs don't seem as tense, but they can't be straightened fully either. Now that the weather is warmer, the aides are trying to get Mother outside for some fresh air. The problem is that she can no longer bend enough to sit properly in the wheelchair. The aides have to be very careful to make sure she doesn't slide off the chair.

We had written before about the splints that were constructed to keep Mother's hands open to prevent her fingernails from digging into her palms. The splints were used until Mother's palms healed. Now, because of the extreme muscle tension, it's not possible for the aides to put the splints on Mother. Instead, they put rolls of gauze in her hands and that has sufficed. Mother's fists are so tightly closed that fresh air can't reach her palms, and her hands can get smelly. The aides solved this problem by cleaning her palms with vinegar, which we're told is an old folk remedy.

A strange thing has happened for a year or two that we haven't written about. Mother sometimes perspires profusely for no apparent reason. A few years ago, we had noticed that her face would sometimes become flushed and she would breathe heavily for a few minutes, then she would be back to normal. About a year or two ago, she started to perspire heavily every afternoon for an hour or two, regardless of the season or indoor temperature. This continues today. To try to keep Mother comfortable, we have a small fan aimed in her direction, which the aides turn on when the perspiring begins.

Mother's mental condition remains poor. She spends all day in bed and is very inattentive. She still sleeps most of the day and usually has her eyes closed. We've found that having her eyes open or closed is not necessarily a good indication of whether she's asleep. When her eyes are open, you might touch her or speak to her and she'll be startled, possibly because she'd really been asleep. When her eyes are closed and you say something, she might nod her head slightly.

"There's little evidence that Mother can understand what we say"
There's little evidence that Mother can understand what we say. She seldom responds. Once in a while, when asked a question, she'll nod her head; more rarely, she'll say, "Yes." We don't think that means she understands us. Rather, she might be responding to our voice intonation. When people are talking nearby, Mother sometimes makes a word-like utterance or two. Her reaction to touch varies a lot, from no response to startle. At times, she winces, especially when touched around the head or face. When touched on the arm, as noted, the arm usually flexes, but there's usually no response from touching her leg. Otherwise, she seems largely unaware of what's going on around her.

We continue to rent all of our medical equipment, despite the fact that we have rented long enough to take possession of all the items. This way, when anything needs to be repaired, the equipment company is responsible. Medicare may be changing its reimbursement policy for the wheelchair, since we've had it so long, so we might take ownership of that. Mother rarely uses it, so repairs won't be a big factor. A couple of items that did need repairs lately were the hospital bed and the air mattress. With the air mattress, the problem was that a section of it wasn't retaining the air. The equipment company sent someone over to examine it, and he determined that it should be replaced. Someone else then came over with a new mattress, installed it, and left. The training for these guys couldn't be very good, since the new mattress didn't hold the air. Calls to the company simply provided the obvious advice to make sure the valve was closed. Finally, by unzipping the mattress cover, deep inside we found a second valve that had never been closed. What a mess that was for a couple of hours.

It's clear that the aides who care for Mother are very good. Both our regular aide and the weekend substitute have now been with us for more than three years. If not for them, it's doubtful that Mother would have survived until now. Would Mother have wanted this? We don't know.

19. Various Problems (August 2003)
21. Little Change (May 2005)
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