Sleeping Almost all the time

Belldream · August 2022

DH has been sleeping I'd say 95% of his days away. He's only 63 but also has Parkinsons. He does get up many times at night and shuffles around the house, and I know his essential tremor takes a lot of energy out of him. So i know he needs to rest. But the amount of sleeping seems excessive. I work full time from our home, and he doesn't require much intensive time consuming care so I am able to continue. But I've also noticed he's been more "out of it" than say 6 months ago. Is this somewhat common in your experiences? We did recently see his neurologist and reviewed all his meds, etc.

Belldream · August 2022

To give you all a chuckle, since if you can't laugh you'll cry! He's been sleeping almost this entire day, waking briefly to mumble something and then going right back out. He woke up and made a snide comment at me for asking him if he was sure he didn't want any dinner. Then went back to sleep. Now he's up, and says "Oh is this for me?" and then devours his dinner. Honestly

toolbeltexpert · August 2022

Thanks for sharing. I did chuckle, thanks for reminding me to look at things and sometimes just laugh.

JanDap · August 2022

My DH is 76 and is in stage 5 of Alz. We just saw the neurologist 2 days ago and I tol him Dh is sleeping alot--sometimes only up for meals. He gets up to go to the bathroom at night at least 2 times. Neuro told me this was 'common' and 'normal' and he might get even more sleepy. But I also have experienced mother in law and step mom who had Alz years ago, and they weren't near as sleepy at this stage. I suppose I should be glad...Just hate watching it.

Rescue mom · August 2022

My DH sleeps 18 hours a day, sometimes more. His docs checked for other reasons, found none, and said it’s what dementia does to many people. They said let him sleep. At least he’s not unhappy and not causing problems.

jmlarue · August 2022

I've had only a passing acquaintance with Parkinson's, but what I've seen regarding the extreme sleepiness is attributed to both the progression of the disease and the medications used to treat it. Out of curiosity, I did a quick Google on the subject and learned that the medication can also cause the sleep fragmentation or the normal sleep/awake cycle to be flipped on it's head (like you describe) where your DH sleeps throughout the day and becomes more active at night. It can be this way for some PWD, too, and for the same reasons. It's worth mentioning your concern to his doctor, especially if he begins spending more time awake at night than in the daytime.

Battlebuddie · August 2022

My husband gradually slept more and more. He would sleep all night. I never had problems with him awake at night, although from time I hear him talking in his sleep.

Now he is in Stage 7. At first he was up an hour at breakfast, and an hour at lunch, and 30 minutes at dinner. But he is sleeping through lunch about half the time now. I can change him and bathe him and he doesn’t wake up . We have tried getting rid of meds but it hasn’t perked him up.

It’s very common in the disease progression. It’s a big reason he is still home with me.Seven thousand for MC to have him sleep all day and night is just too much. His care is easy in many ways and I have plenty of time for ME time. It’s in many ways a blessing , but also sad and lonely for me. His quality of life is very low, but if he “ sleeps his way to Jesus” I will consider myself lucky.

Dio · August 2022

Consider yourself lucky at this juncture, really. I would love for DH to sleep during the day. Then I'd get some free time to myself, pay bills (without being asked the same questions over and over) or take care of official business, and simply enjoy a much needed breather. I'd beg for it if that worked. My DH is attached to me like a lost child. He'll follow me around the house and ask what I'm doing, especially if I go upstairs or into another room. He gets so agitated when I'm out of earshot. Lately, he'll hover over my shoulders while I cook or wash dishes or do laundry. It's suffocating. He has no hobbies and has no interest in doing anything. For a brief period he enjoyed paint-by-numbers, but he's declining quickly and cannot remember which section he's painting after looking down to dip the brush in paint. So he's not enjoying it anymore. He used to enjoy surfing the web and tinkering on his computer or iPad. He cannot figure out how to work these anymore. He used to love audible books, but now finds everything confusing or that what he's listening to is "causing him the confusion"... sigh. Even watching TV is confusing to him, so it's not an option. I love jigsaw puzzles, but he hates it. He used to scuba dive and swim. Now he's annoyed with having to share the pool with other homeowners, citing that "they don't belong here." Prior to his collapse, he was the poster child for health--eating healthy and staying fit, 6-pack abs and all--now he can't figure out how to operate the machines in the gym. He still takes walks around the neighborhood, so I do get an hour or two. I dread the day he finds that, too, is unacceptable for one reason or another.

slippednfell · August 2022

My DH also was sleeping all the time. He would also go into what I term "stupors", sometimes lasting 48 hours. After 48 hours of not taking meds, I just stopped giving him the Zoloft, Wellbutrin and the two Alzheimer's meds (Aricept and some med with an "M")... He was suddenly not so sleepy and his tremors stopped, his balance was back and everyone noted how much of a difference they saw in him after stopping meds.

He is also now following me around like a puppy dog and I really have "personal space" issues so it is really uncomfortable to me even though he's my husband. I almost feel claustrophobic when he is RIGHT THERE.

As he is viciously nasty at night to me and sometimes physically, I wish he was sleeping all the time... I am working with a psychiatrist to see if there is another med that will stabilize his mood, even it out, that he can be put on.

I can relate and I wish you well.

Just Bill · August 2022

I agree sleep is a great thing for both of us. I get up before she wakes up and stay up after she sleeps and get a lot of Bill time when she naps. My wife also really can't do anything on her own without help. Her idea of something to do is follow me around and get involved in what I'm doing. She has to see what I am doing literally every 5 minutes. Asking the same questions over and over. Sometimes I can give her a task like sort junk mail, luckily I receive a metric ton of it. She will also take a paper and pencil and write or draw. Both tasks require constant non stop validation and praise for doing excellent work.

pennyloafer2 · August 2022

HI Belldream,

My husband has Parkinson's/ Lewy Body and

for a while all he did was sleep as well. They put him on Amatadine. It was originally used for an antiviral but found it was keeping patients awake. You may want to check it out. It made a huge difference.

tktyboo · November 2023

Today I learnt that my wife is at the seventh stage by watching Tam Cummings' YouTube video. Rather saddening to understand what comes next. She has been bedridden since 2021 after a fall that caused no injuries but appeared to knock her get up go spirit out of her. In the last five days she has just started sleeping for extended periods, 24, 36 hours and more. In fact today I couldn't wake her up properly not even while changing her. As for food and drink, I only managed to get a tiny amount of ensure into her. Two days ago she ate solid food and was clearly awake to do so but since then the change has become significant.

Has anyone any tips on how to wake her up fully? While I am concerned about getting nutrition into her I also don't want to cause her to choke as she is a somnambulant state.

Thanks