Hi everyone. It is so helpful to read your stories. I don't feel so alone. I am the mother of a HD patient (51 year old female) taking care of her at home. She lived here with me for about 10 years before she was diagnosed in 1212. After spending a year in a nursing home based on doctors' recommendation I brought her home about 2 months ago. She can't walk, she sits in a wheelchair. She refuses to sleep in her bed
at night but sits in the wheelchair trying to sleep slumped over. When I try to get her to lie down, she goes on a rampage. The next day she seems real tired. Any solutions? Thanks in advance for any advice.

How is her ability to communicate? There is very likely some reason behind her desire to sleep in the wheelchair and not lie down. I am wondering about sleep apnea. I have sleep apnea (confirmed by a sleep study) and when I sleep on my back, my oxygen levels go dangerously low. All I knew was that I was waking up in a panic every night gasping for breath. My doctor suspected sleep apnea and sure enough that was what it was. When I sleep on my side , I don't have the problem. So it could be something like this that she is having trouble articulating. Another possibility is that getting from the wheelchair into the bed is scary. People with HD have impaired proprioceptive feedback which means that they don't know where their body is in space. In the last stages of the disease, moving from bed to wheelchair and back can make people with HD feel like they are falling.

Feeling tired may be normal. I am tired/fatigued all the time but I also don't have the severity.

Sleep Apnea is pretty common these days and treatment does make a difference. Not long ago during a retest it was determined even on a cpap I only got light sleep and my oxygen levels got really low somewhat like Marsha said. Supplemental oxygen at night did help a little.

Marsha is much more knowledgeable than I on these subjects.

Good Luck,

Mike

MARSHA AND MIKEE! Thanks so much for your responses. These are ideas worth following up. I know she must be scared of something.
Communication is not that good. Let me know if you come across other ideas. Again. thanks!

Is it possible she's afraid of falling out of bed? Or could movements causing her to hurt herself by banging on rails, walls or headboards? If so maybe she needs padding so that those areas are soft. I've also read that some patients prefer sleeping on a mattress directly on the floor due to movements and fears of falling. My husband needs a side rail to prevent falling out of bed. Another person I know needs every surface surrounding the bed (wall, headboard, foot board etc) to be padded because his movements would cause him to bang into things and he would constantly be hurt.

Maybe they are needing something like a recliner chair to sleep in, maybe lying flat isn't comfortable any more ?

My wife has not slept in a bed in 3 years. She can still communicate very well and says that her back is uncomfortable in a fully reclined position. She sleeps comfortably in a recliner. When we travel we take the recliner with us (no more flying). She says she feels a bit like Granny off of the Beverly Hill Billy's when we check in to hotels, but we just laugh and drag the thing in with us.