Coping with Increasing Sleepiness?

ARIL

My father is at stage 6 according to the DBAT charts and has been in MC more than a year. He started napping in the afternoons several months ago, and he has been sleeping more and more. He is often resistant to getting up. When he is up he reports being “exhausted.” I know this is a common part of disease progression.

I visit many afternoons after work and before he goes to dinner. Thus far I have been successful in getting him up and dressed and off to dinner. Today when I arrived early (about 4:00), staff told me he had refused to get up for breakfast or lunch. They seemed worried. I was able to persuade him to get up and go to dinner. He still knows me and wants to cooperate with me. (Yes, I know to be grateful for that.)

How do you know when to stop pressing a PWD to get up? MC staff try to get him up for meals and keep him up for activities, and they are good at making sure he is clean. He still manages some of that himself. But I assume there will come a time when permitting him to sleep all the time if he wants to will be the more compassionate way forward. I don’t know how close we are to that day. He tells me he thinks he is “wearing out.” I believe that is so.

And then there’s the sense of guilt: if he will get up most easily for me (or get up at all only for me), I still can’t be there every single day and certainly not three times a day. A full-time job and home responsibilities are part of my life too. This week I am off work and can go to see him every day, but next week will start a very busy time at my workplace.

So I guess I have philosophical questions about dying and practical questions about caregiving… But mostly I wanted to share my thoughts with people who will understand and who will sit with me in knowing that there are not easy answers. Thank you for listening.

JulietteBee

I hear you & I walk with you.🙏🏽

I believe my mom just entered early stage 6. She too has been seen dozing off easily & frequently throughout the day. Sh has always.had a bad case of insomnia, which is what she blames for her daytime drowsiness. Personally, I believe it is caused by the dementia.

She lives in an IL facility and I still encourage her to go down daily to socialize and participate in activities. There is no right or wrong choice, but I choose to continue doing so for as long as she lives.

I find that her drowsiness feeds her depression and her loss of the will to live. She is often heard telling me, "It won't be much longer."

Guilt serves no purpose. Ditch it real fast! You are doing all you can do.🩷

Is there an alarm you could set, like Alexa, reminding him when to go down for meals? I set up Alexa for my mom. So far, she responds favorably to its promptings, along with my daily txt messages wherein Inoutline the day and my expectations of her.

SDianeL

Can they bring his meals to him? Maybe it’s the dining room that bothers him. I would continue to visit when you can and encourage him but don’t feel guilty about not being there for all meals. People with dementia sleep a lot because their brains are tired. You might consider a hospice evaluation. An extra set of eyes and more caregivers couldn’t hurt.

H1235

Some medication can cause drowsiness. Has he started something new? Would it help is certain medication was given at a different time? It probably is the dementia, but it still might be worth talking with his doctor about. Could it be that he is farther along than you think? Is it time for a hospice evaluation? Sorry you and your dad are going through this.

Cobalt

my son is now 6 years after diagnosis. The increased sleeping is becoming more of a problem to manage. He fights getting up and really gets quite angry when we won’t him go to bed early. His doctors told us it’s important he has enough awake time to exercise his brain. And he benefits from a regular and predictable daily pattern. Yet now after many years of a solid routine he is fighting most days.

We have to get him up for doctor appointments and his therapy appointments which are once weekly. He has PT and OT. He goes to a clinic where the therapists are trained in Neuro-PT and Neuro-OT. He recently qualified again on evaluations after 2 years out of therapy. He got stronger, has more motivation to work out, and is better able to focus than he was able to do 2 years ago! We are accepting that one big outing in a day is all he can do. On these days we don’t mind if he “has a nap” after lunch.

My son is now in bed average 15 hours daily and that’s doing good to get him out of bed for 9. He still fights over this, worst in the morning but once he’s eating breakfast he forgets he was fighting. We caregivers get exhausted with the morning fighting to that point. Also when he wants to go to bed too early (6 pm or so) sometimes it’s because he’s bored. Changing the activity from sitting watching TV will change things up. A shower about 8 pm can stall the time to a desirable 9 pm bedtime and he’s happy to get the calming shower.

PlentyQuiet

I'm on the other side of this. DH has EOAD, and it progressed rapidly. He is now sleeping 14-17 hours per day, and I am grateful.

It is a welcome change from the pacing and agitation, the hyper oral fixation. It is also easier on our young adult kids. They are more at peace watching him sleep than watching the fear and agitation.

This is a one way street, DH will not be recovering from this disease. If sleeping makes him and the kids more at peace with this then I am all for it.

ARIL

Thank you all for sharing your insights and experiences. It is helpful to read various perspectives on these matters. My dad has no new meds, but I will have a chat with his doctor, who seems both reasonable and compassionate. I had been thinking about a hospice evaluation, and the question of quality of life—asleep or awake—does seem at the heart of it. I appreciate your kindness and candor.

April23

My dad has also entered stage 6 and naps are getting longer but he’s still getting up for meals, visits and therapy no problem (although sometimes he cuts therapy short). I think I’m not going to fight it as it progresses but will know then that it’s time to think about hospice. He’s eating less too and currently that’s my dilemma—when to let that go also instead of pushing. I want him to have whatever control of his life he can still have and not suffer.

psg712

I appreciate reading all of your thoughts on this topic. I notice my mom sleeping more too. I'm not inclined to disturb her awake. It's interesting to me that some of the MC staff seem distressed about her sleepiness. The activities director tries to engage her in chair exercises, for example. Mom obediently follows her to the group activity area, then promptly falls asleep during the exercises! She is not on any sedating meds. I assume it's the inevitable progression of her dementia.

yogiprincess

My Mom (87) is experiencing this and it is very difficult to find a balance between letting her do what she feels like doing (sleeping most of the day), but also helping her continue to live the best way she can…A someone else here said "I choose to try to get her up everyday".. and help her participate/socialize for a few hours…makes ME feel like she is still having some quality of life, but I often feel guilty and wonder if I'm doing something wrong. Its really hard…thanks everyone for the helpful comments