Experiences for Alzheimer's patients in the last months/year before life comes to end. What were your experiences like?
My sweet angel mom who suffers from Alzheimer's and just turned 91, has been sleeping a lot lately.
Eventhough her bloodwork results were excellent and she has no physical problems except Alzheimer's, but she gets tired a lot and likes to sleep. She wakes up every 2 hours to eat something and walks a little in the backyard but then goes back to bed again even during the night (even with sleeping pill)! Someone told me they usually sleep a lot when the end is coming! Is this true?
When I take her out she enjoys the outings and dosen't want to go home even though she gets weak and wobbly after a few hours!
I would like to know how your experiences were with Alzheimer's patients who are pretty healthy but sleep most of the times! How are the last months/year before the time for these patients? What happens to cause their deaths if their body is healthy? I need to prepare myself bc I worry about her a lot.
Thank you for your advice in advance. 🙏
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I agree with several others that what is happening is gradual cognitive decline, not end of life. Do get help from a care agency such as Home Instead Senior Care. If you try to do everything yourself, you will at some point burn out. It's better to give yourself space both to be with and to be without the loved one for whom you are caring.
Take care. Give care. with my prayers
My mother slept for about 18 hours a day. She'd get up in the morning, eat breakfast, take a nap in her chair, have lunch, sleep in the chair until dinner, then stay awake to watch TV for a couple of hours (endless reruns of shows she'd seen 100 times already), then go to bed and sleep for nine hours straight.
I think a large part of that sleeping was due to boredom and a failing ability to process what was going on around her. She had dementia, was very hard of hearing, and had macular degeneration, so the signals coming into her brain were already scrambled by her sight and hearing. I think it was a lot to process, and it was making less and less sense to her all the time.
That was about six years ago, and she only died last week.
I will say this, though -- she was at home with just my dad who had his hands full taking care of a large house and doing all the cooking and shopping as well as trying not to lose his own identity caring for Mom. He ended up dying first (three years ago), and after I move Mom to a memory care facility, the endless sleeping stopped. She wasn't allowed to just sit in a dark room all day and was brought out into the common room to be with the other residents. She wasn't required to participate in the activities, but just being around others did perk her up quite a bit. Social interaction is so vital for those with dementias, and it's terribly difficult to carry that load on your own. My dad really tried, but my mother refused to go anywhere with him. I don't know that my dad ever really realized she had dementia. I know I didn't until after he was gone.
The sleeping when someone is dying isn't like regular sleeping. It's more like a toy that's just winding down. My mother was "asleep" for the most part for the last three days of her life. She didn't open her eyes anymore, but she would eat a little bit if the nurses used a syringe to feed her. She'd grip my hand tightly when I held it, but after a while I realized it was more of a reflex than anything else. She'd mutter something here and there, but it was clear she was turning inward and the fact that we were there no longer registered.
All her life she'd twirl a lock of her hair habitually, and even in her "sleep" those last few days she'd reach up to her hair. The last day of her life, it was like she was literally winding down. Her hand started up, but it stopped about halfway to her head. I twirled her hair for her, and put her hand back down in her lap. The next morning she was gone. It was all very peaceful.
That's more what dying looks like.
Walking in the backyard for a little while (gotta check the raspberries for fruit) exhausts her. Sitting in her chair...exhausts her. If she's up for 2 hours...time for a nap....
She's gone from a 10pm bedtime, to an 8pm bedtime, and now is having a 6pm bedtime. I wake her after 3 hours so she can go to the bathroom but mostly she just sleeps. And she does it quite well.
She would like to die. She's ready but I don't think her body is actually in an active death cycle, yet. So...she sleeps.
It's been this way for a while but the last 6 months has increased the sleeping.
The body begins to shut down. As the need for food decreases she will stop eating. Little things happen before this. Parts of the body "forget" how to work properly. This is when Aspiration comes in and how Aspiration Pneumonia develops.
The body conserves energy and blood circulation becomes poor. (This is why they are often cold) The body will maintain best circulation keeping the major organs supplied with blood and oxygen. Heart, Lungs, Brain. These eventually shutdown as well causing death. Lots of stuff happens in between.
Sleeping a lot is a sign of decline. Having increases secretions because swallowing is difficult.
I strongly suggest that you contact Hospice and they will help you a lot with the What's happening, Why is it happening, What can you do, What can you expect.
Hospice will provide you with all the supplies, Equipment and Support you will need. I would not have been able to care for my Husband the way I did if it had not been for Hospice. He was on Hospice for almost 3 years.
((hugs))
Sometimes I think she's board bc she can not function tasks. She loves music. I try to provide that daily so she could dance and that is one way to get her brain stimulated. She still follows programs on TV but I like her to be more involved with hands on activities like gardening, cutting bread or sometimes even help me with cooking! She loves it. She is still in control of her bladder(thank god) and very hygienic. But I can do so much since I have my family too to care for. When I can't entertain her she goes to bed and sleeps and that makes me feel so guilty that I cannot provide her with more activities.
It's extremely difficult to think of her gradual declines. Once she was an important talented figure with so much to offer. This debilitating disease is even worse than cancer! But at least she has no physical pain but I know she realizes she is forgetting and that is the only pain that saddens her. Sometimes she dosen't even know who I am and when she realizes that she apologizes and feels embarrassed and that is the most painful for me.
You mentioned hospice. How did they help you during these times eventhough she is still functioning as she is? Doesn't she have to be admitted to the hospital in order for them to accept her? Or do they come home to ok help?