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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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21. Little Change (May 2005)

Mother's condition remains poor. Her body is tense and inflexible, with her hands in fists and her elbows and knees always bent. She has her eyes closed much of the time, and when they are open, she stares blankly. When touched on the upper body, Mother often flinches. (Our sister thinks this may be a reaction to being "handled" — washed, rolled over — by the aides. Or maybe it's just a surprise response.) Touching her legs doesn't seem to elicit a response. She is largely silent, but on occasion she utters some syllables and, rarely, a recognizable word. Our sister thinks she shows some response to the sound of familiar voices, but we're not so sure. In any case, when the aides put food in her mouth, she chews and swallows.

"Mother's condition remains poor ... but when food is put in her mouth, she chews and swallows"
Mother eats food that doesn't require a lot of chewing, such as crushed pineapple, lentil soup, and tuna. The aides sometimes use a food processor to make the food into a consistency she can handle. Mother didn't have a problem with liquids until this year, when she would sometimes gag while drinking. To help with that problem, the aides thicken her liquids with Thick-It or Thicken-Up. These products mainly consist of cornstarch, with another ingredient or two to prevent lumps. We've read that plain cornstarch might work as well if you use a small wire whisk to combine the cornstarch and the liquid.

To prevent bedsores, Mother's bed has an air mattress, and the aides shift her position regularly. Since she is always in bed, she does get sores and the aides tend to them regularly. So far, they have been successful in preventing them from becoming a problem. The latest device they've been using is an inflatable rubber doughnut. While being fed, Mother has to spend a certain amount of time on her back, and her back would get red. The doughnut is placed under her and keeps pressure off the affected body parts.

Constipation continues to be a problem, but the aides haven't had to resort to enemas. The combination of senna, prunes, and prune juice seems to be working.

"Mother would choke on the phlegm, so the doctor wrote an order for a suction machine"
We wrote before (May 2004) that phlegm had become a problem. At that time, the aides dealt with it by giving Mother cough medicine to break the phlegm up. They also pulled phlegm out using a special toothbrush (a piece of foam on the end of a thin plastic dowel). After a while, this wasn't sufficient, as Mother would choke on the phlegm. It was really horrible to hear. To take care of the problem, the doctor wrote an order for a suction machine, which we rent from a medical supply company. Now, the aides suction Mother's mouth and throat as needed, which has become a few times a day. Hearing Mother choke on the phlegm was unbearable, but hearing her being suctioned isn't pleasant either.

Part of Mother's phlegm problem may have been due to a cold. Her gagging became so frequent that an aide called a doctor who makes house calls. According to the aide, the doctor wanted Mother to go to a hospital and be hooked up to some kind of machine for the delivery of medicine. This was the doctor's opinion without first examining Mother. When we heard about the plan, we thought it sounded like it would violate Mother's living will. When the doctor came over to examine Mother, our sister was sure to be present. She made it clear to the doctor that the treatment should be for comfort, not for life extension. The doctor thought part of Mother's phlegm problem could have been due to a cold. She prescribed a decongestant that came in a liquid form. She also prescribed albuterol, a medicine that is often used to treat the wheezing and breathing problems in diseases such as asthma and bronchitis. In Mother's case, the albuterol is given through a nebulizer. This is a small machine that vaporizes the drug and delivers it through a facemask. Mother just breathes it in. The treatment has helped. Mother's coughing and gagging have diminished, but she still has problems, which is why the suction machine is used.

"All of this sounds bleak and it is, but being in our parents' house isn't as depressing as you might think"
We know that all of this sounds bleak and it is, but being in our parents' house isn't as depressing as you might think. That's partly because this has been going on for so long that everyone has become accustomed to things — to the extent that we can. The amount of time visitors spend with Mother varies a lot. Some people take only a quick look. When we visit, we talk to Mother for a while, but it can be hard to spend a lot of time with her. No one wants to be present when an aide is caring for her (feeding, cleaning, or changing her). Every morning, Dad says hello and touches Mother's face, and he looks so sad. Other than that, he keeps his distance.

We are now renting a lot of medical equipment, and we have had problems with the suppliers. The hospital bed and air mattress seem to break down fairly regularly. The medical supply company often sends over someone who can't fix the problem, so nothing gets done until the second or third visit. The bed we have is electrically powered, but the company says that it made a mistake in giving us this bed. They say that Medicare is only supposed to cover manually adjustable beds. Whenever our sister calls about getting the bed repaired, the company always offers to take it away and replace it with a mechanical bed, which we don't want. Dad also became quite annoyed about Mother's wheelchair. He had wanted to stop renting it and take possession of it, but he couldn't. The wheelchair provided by the supply company was old and worn. Over the years, though, we had the company replace practically every part of it. Renting still made sense, since the company would be responsible for repairs. Now that Mother is rarely in the chair and most of the parts haven been replaced, Dad thought we could save Medicare money by taking possession of it. The medical supply company informed us that it was too late for that. We could have taken possession a couple of years ago, but we didn't, so now the wheelchair can only be rented. Dad was quite annoyed, since the government has probably paid for that old wheelchair several times over.

Dad has cut out ads from the newspaper about hospices, and he's had us call the insurance company to find out about hospice coverage. We don't know when we'll need it, but it can't hurt to be ready.

Over the past few months, the case of Terri Schiavo was a major news story. Doctors said she was in a persistent vegetative state, so her husband wanted to remove her feeding tube and let her die, while her parents opposed that action. This story resonated with our situation with Mother. She was diagnosed with Lewy body disease about six years ago, and her situation has been bad for the past few years. From the news coverage, we learned a few new things about persistent vegetative states and living wills. We're glad that Mother had the foresight to make out a living will to guide us in making decisions on her behalf.

20. Stasis (May 2004)
22. The New Doctor (March 2006)
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