Prolonged sleep

Crkddy

Hi, my DW is late stage (I think early stage 7) at age 61. Over the last few months her sleep pattern has changed such that she now routinely sleeps 20 hours a day. She would sleep longer if I didn't "help" her wake up to get some food in her and change her underpants. Her meds have been changed somewhat in effort to mitigate. Seems to help for a short while, but then the pattern continues. I have been told this is just part of the disease progression.

Does anyone else have this experience? What does this mean for her prognosis?

jsps139_

When my Mom (with Alzheimer’s) started sleeping all the time, hospice told us that when they lose their appetite and start sleeping all day long, they are nearing the end. She lived for 3 more weeks, but she was only drinking a small amount of protein drink each day - nothing else. If your DW is still eating solid food, that probably is not the same as my Mom who had no appetite at all.
I’m sorry you both are going through this ordeal at such a young age. It is so hard!

Vitruvius

My DW is 72, now on hospice and late stage 7. She began sleeping 20 hours or more for about a year now. Now it is hard to tell how much she sleeps as she almost never opens her eyes. The MCF places her in her Broda chair (a big heavy reclining wheelchair), a mealtimes in order to better hand feed her. When I visit I take her out for a stroll around the gardens before feeding her. As I do this she seems to be either sleeping or very near so. In this state she will occasionally respond to what are clearly question with a closed mouth and very soft “mmm-mmm”. So she still has some very limited awareness of what going on around her. It seems it’s a semiconscious state of sorts.

When it becomes time to feed her, she eats with her eyes closed. One takes a spoon and taps her lip, if she is hungry she will open her mouth like an infant.  The medtechs call this the feeding reflex. Remarkably she still eats reasonably well, but sadly she is still losing several pounds a month. But she is still with us.

Most PWD are older, 80s90s, and those who have passed in DW’s MCF, often seem to die of the usual old age issues before they reach a later Stage 7.  I believe what I am seeing is someone actually dying of dementia itself. A few people on this forum have documented this. 

Jeanne C.

Have you had a hospice evaluation? They can provide great support, including a nurse visit at least once weekly and a CNA to help with bathing. My husband has been on hospice for a couple of months after a drastic weight drop. I'm sorry you are both dealing with this.

Crkddy

Thanks for your replies. She was under hospice care for 9 months last year but was discharged due to perceived lack of progression. I think they kept us on only because I was going through cancer treatment at the time. I'm sure her doctor would make a referral, but I hesitate because (when awake) she is still eating fairly well, can still walk with assistance, and still responds to some basic questions and requests. I don't want to go through another discharge again.

These past 6+ years have been a series of ups and downs - many different stages for her and an emotional rollercoaster for me. In her current condition, she is so sweet and child-like, and I'm grateful to still be able to care for her at home.