My 90-yr-old Mom, who has moderate dementia, has recently started wanting to sleep all day. I get her up at a reasonable hour to change into a dry undergarment, then she tells me she wants to go back to bed. When I ask her why, she says something about her back hurting or not feeling well (she has no specifics like stomach ache or headache) and just wants to go back to sleep. She has already slept over 14 hours at this point before she wants to go back to bed.

I am not sure how to handle this. It really messes up medication schedules, meals and everything else! And, of course, it messes up her days and nights. She sleeps all day then goes to bed at night and lays there wide awake whistling (and coughing)! I know that as the disease progresses, the person with dementia wants to sleep longer. But, is it good for them? I know when she is up all night, it is NOT good for ME!

Does anyone force their loved one to get out of bed? It's not as if I have any great plans for Mom for the day!

Dear "texasrdr22,"

My mom was 89 when she was officially diagnosed with Alzheimer's in 2014. I suspect she probably had it as early as 2011/2012. She is now 95 and had been living in an ALF until April of this year. Looking back, I noticed last year she was sleeping in later than usual and I would always have to call her to get her up when we had an appointment to go to. She started to sleep until 11:00 am, 1:00 pm, 3:00 and finally until 4 p.m. She was taking an antidepressant for awhile but, that didn't help.

In April when she nearly died of severe dehydration, COVID, bi-lateral pneumonia and a severe UTI, she was discharged from the hospital and taken to rehab for three weeks as she could no longer walk or dress herself like she used to. We found a new facility, placed her in their memory care unit and then she qualified for hospice care. It was at that point the facility noticed she wasn't sleeping and would end up getting up out of bed in the middle of the night and falling. There was also agitation which can happen when there's insufficient sleep. Hospice decided to put her on a low dose of Trazadone to help her sleep as well as for her anxiety.

This has helped my mom tremendously. She sleeps through the night, is up for breakfast which she hasn't done for the last 5 years and she hasn't had any falls either. Less agitation as well. The original order was for up to 4x a day. They've never had to give her that much. A couple of times they did give her two. Now I have a new hospice company and we decided she only needs it at bedtime and that has been working fine.

The day of the lockdown on March 13th, she was scheduled to have an injection for back pain but, I ended up cancelling it due to the new virus. Since we never were able to get her the injection, hospice wanted to give her morphine which I declined since I considered that more end of life types of pain so we agreed on higher doses of Tylenol. She seems to be doing fine with that.

So I'm wondering if maybe your mom isn't sleeping well during the night and that's why she's sleeping all day like my mom used to do. Everyone is different as well as the circumstances, pain tolerance level etc. but, it definitely isn't good for you not to be able to get the much needed sleep in order to help with your own stress levels, moods and everything else necessary to take care of your mom.

I know that I don't live with my mom like you do so I can't address whether or not you should force her out of bed but, I was coming at it from the possibility she's not getting sufficient sleep at the times she should be sleeping. I sure hope you will be able to find a solution as it's making everything so much more difficult for you than maybe it needs to be.
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Reply to NobodyGetsIt

HI, My mom is 80 and likes to sleep as well. She lives alone ( very close to me ) and what seemed to work for us is if I go over to her house and wake her up every morning around 10 am and stay until she gets out of bed. If I miss one day she sleeps until 2pm or so and gets up around 4 pm. Her doctor says that sleeping during the day is fine - if that is what she likes but the problem still remains that at night she lays down and thus is in bed for almost 18 hours - which to me is not good. This messes up meds, food and incontinence gets to be normal. I cannot go over every day - and feel like she needs to do her part when I cannot go and make sure she gets up out of bed. She recently went to bed Friday night and just got up this morning ( and it is Sunday !) I had a migraine or sinus pressure headache Thursday night that I am still dealing with today so I did not go over or call her Saturday. She does not know why she sleeps so much but does not have the will to make it right at this age I guess and that is frustrating. Just know I am in this with you and looking for an answer.
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Reply to willnotorcannot
NeedHelpWithMom Oct 11, 2020
Wow! That’s a tough situation to be in. I have never suffered with migraines. That has to be awful to have a migraine and try to keep up with your mom’s erratic schedule.

My caregiver days are over now but mom has days and nights mixed up too. It certainly does make it difficult to deal with.
call her doctor and make an appointment. See what they recommend.
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Reply to Ohlas1

My mom was probably sleeping almost 18 hours while she lived with me and in her last year in the nursing home she was barely awake at all, mostly just for meals and when receiving care. Early on we were fortunate to find a medication that helped her to sleep through the night (mirtazapine, and antidepressant), and that made a huge difference for me.
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Reply to cwillie

Mom no longer lives with me but I can tell you what I did experience when she did.

I’m sorry that things are challenging for you at this time. It’s exhausting and frustrating.

My mom doesn’t have dementia but is in her 90’s with Parkinson’s disease.

She dozed off during the day too. Very often at night she would be wide awake. It was frustrating for her and me.

We even discussed it with her doctor. Mom was not open to taking sleeping meds at night because of having to get up to go to the bathroom.

Mom did fall quite a few times and did not want to add anything else such as sleeping meds to possibly risk more falls.

I did finally talk her into using adult briefs at night to avoid getting up because I needed to get some sleep. She needed assistance in toileting.

Yes, eating can become an issue too. If they are napping they aren’t eating and we end up spending more time in the kitchen.

My mom doesn’t eat much. I cooked nutritious meals and she loved my cooking but she could be funny about eating.

Some days mom had a good appetite and other times she would just eat a few bites. I used to make smoothies to ensure extra nutrients. How is your mom’s appetite? Is it going down? My mom doesn’t weigh much over 100 pounds now.

My mom didn’t watch a lot of television, just her soap opera and the news. She has severe hearing loss and used headphones to hear the television. She didn’t read anymore due to her eyes weakening. So there isn’t much to keep them busy. My mom wouldn’t visit the senior center. She could no longer do her crafts due to her tremors.

They lose interest in life and I also feel that they have some anxiety and depression but often won’t discuss it. It’s sad. Their generation didn’t pay much attention to mental health issues. She was not open to meds for anxiety or depression.

I tried numerous times to bring it up with her. When nurses and doctors would try to discuss it, she would not admit anything. She would just say that she was tired. Yes, people do lose energy as they age but I suspect there was more to it. My mom was once a very active woman. It broke my heart watching her deteriorate. I think she internalized a lot of it. They belong to the generation of ‘pulling up their bootstraps.’

I think some people with depression use sleeping as an escape. They aren’t feeling sadness or fear in their sleep state.

Other posters will give you their perspective about their experiences and I hope you find some useful information. Best wishes to you and your mom.
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Reply to NeedHelpWithMom

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