My husband was given a firm diagnosis 5 years ago of Alzheimer’s after a couple of years diagnosed with mild cognitive impairment. About 2 weeks ago he began a pattern of waking up around 8 AM, walking the dog, having a light breakfast and going back to bed until late afternoon or early evening. He has explained that the reason is that he feels foggy. He is disoriented when he wakes up but not agitated. We don't sleep in the same room so I don't observe what his nights are like but he has reported lying awake for hours some nights. I haven't called his doctor because he does not seem to have a virus or UTI, etc. that might be causing this change. Right now, I'm just letting him sleep when he wants to. If you have experience with this I would like to hear from you. My gut tells me the disease is simply progressing and I just need to adjust accordingly.
Increased sleeping is one of the indicators of decline that Hospice will look for when recertifying a patient for Hospice.
If you do not have Hospice in helping you on a weekly basis:
Nurse comes 1 time a week
CNA comes 2 to 3 times a week to give a bath or shower, order supplies
You get the supplies you need delivered as well as any equipment.
Part of the Team is a Social Worker and Chaplain you can schedule them or not as you see fit.
The concern I would have though is the fact that your husband gets up and walks the dog. At any time he may become disoriented, lost and not be able to get back home. You might want to put a "tracker" on your husband and or the dog.
I know that when someone mentioned an Adult Daycare Center, you kind of shot it down in your reply saying that he would never go because he thinks he's not like "those people."
Well he is actually like those people, and you or the folks at the center can just tell him that they need his help with "those people," as a volunteer.
There was a lady in our caregiver support group whose husband didn't want to go to the Daycare Center either because he didn't think he belonged, so his wife told him he was going there to work and help with the other folks. That worked for a while until he realizes that he wasn't getting paid for said work, so on Fridays someone from the staff would give him $20, and on Monday mornings his wife would give the $20 back. This went on for quite a while.
So if you have to tell him a little "fiblet" that he's going to be volunteering there or whatever, you may just be surprised that he actually likes it there, as they do a GREAT job of keeping everyone occupied and entertained with lots of different activities.
And you can take him there up to 5 days a week 8 hours a day. He will get breakfast, lunch and a snack.
And if money is an issue, they do offer some financial assistance.
But the best part is that you will get a break and get to do things that you enjoy while he is there.
I hope you will reconsider.
After that clearance, I would say, yes, you are looking at both a problem of aging and of dementia. My own father had no dementia, but in his early 90s he became truly exhausted with life. He wanted really only to sleep and his never great appetite became non existent. My Mom would get him up, get him on a scale, ensure he ate, and so on. And he would discuss with me honestly that he had had a wonderful life, and he would "try" for my Mom, but that honestly he longed for one thing and one thing only.....napping. His bed. He hated to get out of it, he literally longed for it at all hours. And he wanted more than anything what he called the "last long nap".
When I visited he was honest with me. And in all truth, I heard this from MANY of my elderly patients, as a RN. They told me they could not honestly share this with family as the family went into flying-fix-it-mode, and simply would not tolerate or hear about it. How sad that they had to share this truth with their nurse, a total stranger. How privileged I was to be able to hear it.
I think you have it pegged. But just in case, run this past the doc. I wouldn't try to CURE it. I would just be certain there isn't a simple explanation for it. Let's say it shows a low H&H on blood work. You would be left with trying to find out WHY or with going into palliative care, with recognition that there is not a lot you think should be done. But you would KNOW and know more what to expect.
My best to you and I hope you will update us.
I would suggest to go with the flow as long as not physically combative just let it roll. If violence starts then you may consider medication. (remember each situation is a learning experience) Blessings to you!
"Circadian rhythm disorders occur in most people with dementia. Symptoms include late afternoon/evening agitation (e.g., sundowning) and irregular sleep-wake rhythms such as daytime excessive sleepiness, frequent night waking, and poor sleep efficiency."
Keeping hubby as active and busy as possible during the day may help.
There's a ton of info online about this, so Google it.