She has been home from skilled nursing after 2 hip surgeries for 2 months now. She has pain in right hip and I was told she may have some subsequent fractures as she has very poor bone density. So getting her up into a chair is supposedly not an option anymore for fear of more damage to bones.
The unfortunate thing (besides all of the above) is that she doesn't like to do anything, absolutely nothing. I've tried getting volunteers to come in to visit but they make her cry and act very emotional about everything, so much so that I canceled them for fear of mom getting overly anxious, and causing concern/anxiety for the volunteers.
I have tried to get her to draw, read, watch a movie, listen to poetry (which is sometimes successful), pick up her old stitchery project, etc. Most to no avail!! She literally lies in bed every day, all day. Period. Is this normal for a dementia patient? She doesn't seem depressed. She says she likes relaxing and "drifting." She doesn't have conversation as we know it. I have to initiate a conversation and it's just me asking questions. Once in a while she has a question about a person from her past such as, "Is Aunt Patricia still alive?" (A.P. died about 15 yrs ago).
Are we in the last stage? She forgets everything practically. I guess 95% of everything, but has a good vocabulary still. She sleeps at night fine and does not sleep in the day. She's totally incontinent and has lost all sense of modesty.
Thankfully she is off all meds but picks at her skin so we have to apply topical ointment.
Any thoughts, please. If I have years to go yet then I need to make some sort of plan to make it through. Thank you for your thoughts and life experiences.
I knew “Ashly” who visited an elderly relative every week. She was frustrated because Aunt May would lie in bed sleeping with no recognition week after week. Nevertheless, Ashly spoke to Aunt each time in French because Aunt had been a French teacher and Ashly had lived in Paris for a time. She was sure Aunt didn’t hear her. Until one day Aunt opened her eyes and said, “your French is very good” and promptly went back to sleep.
So visit, talk to her, and don’t bug her too much. She might like to just listen rather than participate.
https://www.dementiacarecentral.com/aboutdementia/facts/stages/
It sounds like mom is in late stage dementia now and you may benefit from getting her a hospice evaluation. If hospice is approved, it could mean she has 6 months or less to live. The nurses are pretty good at knowing how long a patient has left, but it's not an exact science, of course. My mom's hospice nurse saw no imminent end for her, and she wound up passing 2 months later, unexpectedly, within one weeks time.
If your mom is picking her skin, that's a sign of agitation or anxiety and OCD behavior common with dementia. You should bring this up to her doctor who can prescribe a mild calming med like Ativan which may halt this behavior entirely. Skin picking can turn VERY ugly otherwise, causing infections and other issues you don't want.
Best of luck.
I heard the skin problem can turn into sepsis if it gets infected.
For every hour of surgery it is equal to one month of brain fog. Thus, 3 hour surgery, 3 months of fog. And if someone already has dementia, it could make it appear to worse. I would wait until after the brain fog time frame to see how your Mom feels.
You can go to the website below and they have lists of the various stages. Be aware that this is for Alzheimer's, which has a fairly step -like progression, it would not apply to other dementias.
https://tamcummings.com/stages-of-dementia/
at the bottom of the page in the blue box is a sign up that lets you download a more detailed list for Alzheimer's and fronto-temporal dementia. You will have to use an email to get it, but they will not spam you. I found it helpful.
It sounds like your mom is comfortable. Remember that while you may want to keep her engaged and feel guilty for not keeping her active, the disease causes people to lose their executive ability. Many things become beyond them to do, and it can be frustrating for them to try, since they'll fail. if she's content to drift, that's OK. The poetry sounds like a great idea. My mom likes listening to music from when she was in her late teens/early 20's.
Those who truly die from dementia and not some other comorbidity will regress to the point where they can not walk or stand or reposition themselves in bed or even hold themselves upright in a chair; if they are still verbal they will seldom string more than two or three words together; they will almost certainly have difficulty eating even a pureed diet, which they very likely won't be able to feed themselves; they sleep more than they are awake, as much as 20 hours a day.
After I placed my mom in the nursing home she lasted another 18 months essentially as helpless as a newborn until she succumbed to aspiration pneumonia, and she was not the only person there like that.
https://youtu.be/tansVVDM0fE
I met a lady during the pandemic, with dementia, who had decided to now stay in bed. Was beginning to refuse rolling & care, but staff were able to proceed with a little cheer & a song.
She told me she just wanted to look out her window & see her tree. It was enough.
It seemed quite a natural winding down.
She was still eating well & didn't have cardiac or kidney issues. Staff said she was stable.
I think of the Australian Aboriginals that could will themselves to go.. of my own Grandmother that said I'm ready to go... and did.. the will is powerful when it wants.
Then there are others, holding on SO tight. Way past Doctor's predictions for their situation..
I guess many are not at those extremes but keep slowing down, sleeping more, eating less as time goes on.
Having worked in a field that relies in part on diagnosis, I found when caring for her that diagnostic material is “a good servant but a bad master” especially when dealing with something that can be as erratic as dementia.
Your LO’s actions would not seem to be “last stage” when compared to my LO, but might be on some tests that would result in lower “scores”.
Also, my LO’s physical condition was extremely precarious for at least the last year, and yet she lingered.
If/when hospice care is recommended, there will be additional options for medications that can manage her emotional reactions. Very helpful for my LO.
My Mom was an avid reader and lost the ability to read. She could read a sign but she could no longer comprehend what she was reading. Did your Mom draw before? If not, she is not going to know. Listening to Poetry...her mind can no longer follow along. Better off just putting some music on. And same with her stitchery, she probably has forgotten how to do it. My Mom just watched TV all day. One of those channels that show all the old shows. I ended up placing her into a nice AL. She then had socialization andvwas able to walk up and down the halls.