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As an elder w dementia approaches end of life, they sleep more and more and eat less and less. Physical therapy becomes impossible because their brains are not functioning well enough to follow cues or pay attention, nor are they normally interested in DOING physical therapy. What sort of help
are you expecting from a geriatric doctor for a terminal disease in a 92 year old woman? There aren't meds to slow the disease down, just meds for depression, anxiety or to treat symptoms that arise from the dementia. Leave her be to do as she wishes at this juncture of her life, and learn all you can about what to expect as the disease progresses.
I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Wishing you the best of luck with a difficult situation.
Do you go with her to these appointments where she doesn't tell them everything? I would bring my list of things going on cuz my mom could not remember and/or wouldn't tell her what was going on.
There are many caregivers that work overnight. Find an agency and get yourself some help.
It seems she has extended her sleeping from 2:30 to now 5. Is she awake when you come back from your 8 hour shift? Does she stay up awhile during the day when you are sleeping?
Does your mom see a doctor for an annual visit? is she on meds? Is she continent, get up for the bathroom? Have a good appetite?
To answer your question, yes, there are folks who work all hours. Some elders require 24/7 help.
You might find a health care worker who would come in for a couple of hours each evening and provide mom with a bath, shampoo, make her a nice dinner and watch a bit of tv with her. Is that what you had in mind?
My DH aunt started with a private aide who came two hours each morning to help her take her meds, make her breakfast and do a few chores. That worked for a couple of years before we had to extend the hours to four a day. It all depends on what your mom needs. You might ask her doctor to have her evaluated for home health. Those folks generally work 8-5 so not sure that would work for her.
The question we have to ask ourselves is could mom get out of the house if her fire alarm went off? would it wake her? It might be time to bring someone in when you are away.
Occupational Therapist, Teepa Snow has a Caregiving booklet out about the stages and kinds of dementias. She also has YouTube videos online that are very informative.
The Adult Day Care they cannot lie down but only sit in recliners. If it is "Lewy Body Dementia" the sleeping goes along with it. Plus, it may be too much an all day respite.
I had my mother going after the Pandemic but before the existing flu season that we are in for a one morning a week day respite--nurse on duty, breakfast and lunch.
I did not put her on the van but drove to and from. The 10-2 Mom was exhausted. The 9-1 was doable. I needed a place so I could get the oil changed, errands, my own doctor's appointments but mother was flat out exhausted the next day but I could not leave her unattended for a long duration.
You didn't say if you work remotely or not? My Lord at 92 I should do so good. They really want to just be home and with their loved ones. Isn't that what we all want.
Could you contact a nursing school and have a student as night watch? I know of a person who has a medical student living in the home rent free. It's a win-win situation. You can do a background check, install cameras. None of us like having strangers "paid help".
* a person providing caregiver services is considered an EMPLOYEE and all that entails (paying taxes, worker's compensation). They need to get official breaks and days off... everything by the book. It is a huge responsibility being an employer - and there is a possibility of being sued and/or if the person doesn't work out, they may not leave willingly and the sheriff needs to be called. It can be a nightmare.
* Anyone wanting a 'live-in" needs to do their research and get a legally written contract. I did all this research, not realizing a live-in care provider is considered an EMPLOYEE.
* So, even if rent free, the person must be paid.
States may have different legal definitions re EMPLOYMENT and LIVE-IN caregivers so it is important to check. I live in California and thought the same as you "easy" = free or reasonable rent in exchange for care. Found out it doesn't work that way. Being an employer is a HUGE responsibility.
Gena / Touch Matters
I am so sorry that your mother suffers from dementia. Perhaps you can garner information on the disease by reading such publications as 'The 36 Hour Day.'
Thanks so much for your input.
might do shift work at odd hours. Also they had relatives who could fill in for a few hours at a time when needed. All were CNAs. One had a daughter who was studying PT during the daytime and could work 4 hours in the evening or on weekends. You have to keep looking but they are out there.