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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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19. Various Problems (August 2003)

The effect of the Requip was short-lived. In our April 2003 update, we reported that a medication called Requip made Mother more alert and vocal. Unfortunately, the effect was only temporary. After a few weeks, Mother became largely silent and unresponsive again.

The reversal of the Requip wasn't our only setback.

"The reversal of the Requip wasn't our only setback"
Dad has been taking Mother to a dentist every three months for a professional cleaning. With the aide using an electric toothbrush, she hadn't had a major dental problem in about a year. In her last visit, however, the dentist found problems with three of her teeth. He said that two teeth had such big cavities that they should have root canal procedures and a third tooth had sheared off completely. We decided that we didn't want to subject Mother to invasive, prolonged procedures to fix these problems. She doesn't seem to have any discomfort, although it can be hard to tell.

Bedsores have continued to be a problem. Because of the bedsores, Mother is mainly confined to bed, with the aide shifting her position throughout the day. The beginning of summer was particularly cool and rainy this year, but even when the weather has been decent, Mother hasn't been outside for long because sitting in the wheelchair inflames the sores. One thing that has perhaps improved the situation has been the air mattress. Paid for by Medicare, we now have an air mattress that replaced Mother's traditional bed mattress. The air mattress has an electric pump, which keeps it inflated to the right pressure.

In addition to the bedsores, Mother continues to have a problem with constipation, and for a while her general appearance was not good. (Also, she seems to chew her lower lip sometimes.) Dad decided that it would be good to have a doctor make an occasional house call. Until this time, he had periodically taken Mother via wheelchair van to their regular doctor. Their regular doctor didn't make house calls, but by calling a referral service at a local hospital, he found one that did. The new doctor came over and, although she hadn't heard of Lewy body disease, Dad was pleased with the exam she gave. A week later, she called Dad with a new recommendation she had. She told him that Mother might benefit from a feeding tube, since that could help hydrate her body.

"The doctor understood that the goal wasn't life extension"
Dad called us about the doctor's advice. We had previously dealt with the issue of the feeding tube (15. Living Will) when it had been raised by Mother's regular doctor. Now, this second doctor brought the issue back to the fore. After much discussion, Son called the doctor and advised her of Mother's living will, which explicitly cites the feeding tube as a procedure she doesn't want. Mother had signed the living will many years before, when she was in good health and showed no signs of dementia. Son also told the doctor that Mother had expressed a desire to die some two years earlier (12. "I Want to Die"), so her sentiments hadn't changed after she became ill. The doctor accepted all of this amicably. She said that she now understood that the goal wasn't life extension. Son said that we wanted Mother to be comfortable. (See the Information section for more about feeding tubes.)

Mother now lies in bed almost all the time. She is still able to eat as long as her food is chopped into small pieces. When we talk to her, she seldom responds. Sometimes, she'll nod her head slightly, often with her eyes closed. Once in a while, usually in the evening, she'll vocalize a little. When we gently stroke her arm, sometimes it seems to disturb her, as her breathing speeds up and becomes more forceful. Because of her unresponsiveness, it's sad to say that she has become more marginalized. We think that everyone spends less time trying to interact with her. Dad has begun to think about where he might want to live after Mother is gone. A couple of Mother and Dad's friends have called, and Dad has described Mother as like "the living dead." That may sound harsh, but we can't say that it's not reality.

18. The Wound Doctor (April 2003)
20. Stasis (May 2004)
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