Caregiving needs for my mom. Any advice?

Hello,
It sounds like you'll have to advocate for your mom, but you can do it without her knowing. Sometimes the person with dementia can ace those quick office tests. Can you slip the doctor a note outlining your concerns before the visit and share what you see her doing or what she can't do anymore? The doc needs to know that she'll deny there's an issue.
They should know about her whirling thoughts, which can't be good for her. She may be staying in bed to avoid dealing with how confused it makes her. While I understand your desire for a natural remedy, it might be worth trying meds. Good luck!

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Yes, I forgot that she was 88 when I first posted. After it took me 3 weeks to convince her that she couldn't hear because of earwax build up, yes, she could now hear a fire alarm and slowly get out the house. I would love to get a hold of a natural pill to reduce stubbornness, but I know it comes with the territory of dementia and persistence of independence even though she really needs to use a walker, but won't. I had a great doctor who had ordered the home health but it was questionable whether it could be arranged for eves, since I work nights and that's when I would need it; no overnights. Thanks for your input. A new doctor appt. in Feb. so hope to get things going again. She's been through 3 because they all move on to greener pastures and why not since they are all young. The geriatric doctors 50 on up are few and they don't take new patients. Nationally, geriatric doctors is not the favored field, but they need more desperately because of the huge baby boomer population. I also need to get with the social worker and I know for a fact she's overworked. Thanks for your time and reminding me it's been 5 years, lol!

I asked around my mother’s rehab to find friends of workers there who
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.

I once worked for a nursing agency in home health as a CNA. I often had overnight stays with clients. It paid better than daytime. The rate is divided between the agency and the caregiver coming out to the home.

You need to interview care providers and ask what they will do re work and scheduling.

and

Call an agency.

Compare the pros and cons (independent contractors vs vetted caregivers through an agency).

* Independent contractors - you need to get:
- copy of their driver's license
- criminal check (finger printing) if this is a concern to you
- References - work and personal (call references)
- Resume or some background / experience (most won't have a resume)

- Put everything in writing.
- Review work required and work done as needed. They may need support to get it right (i.e., laundry ? cleaning up ? preparing food ? ) A list of 'to do's' is a good guide and check off list.

Agency; worker's compensation automatic. They vet / screen / and should provide a criminal record clearance. Ask for it if they do not automatically provide.

Gena / Touch Matters

squirrel13: I used a nighttime caregiver who worked pro bono for me (fortunately, she was a friend) until I could arrive from out of state to live with and care for my mother. A licensed practical nurse, this lady had many other clients. She was not the only individual who performed such a task. I interviewed another lady on the off chance that I would be hiring her.
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.'

Check with agencies for night available help. Some Agencies offer 24/7 care so some night service should be available.
Or you could take the big leap and look into placement facilities for her.

A geriatric social worker can assess her situation and give you ideas about what to do. Is she following your sleep schedule by any chance?

Caregivers and Agencies should have people for overnight shifts.

Good Morning,

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".

Yes, you can get an evening caregiver and sounds like you need one when she is alone. Any agency has caregivers that work evening hours or ask around to find a private one. My mom would have slept all day too if her caregivers were not with her.

I would bet that you could easily qualify for hospice. They can come in a few hours every other day or so at least to help with the bathing and tasks, etc.

Does your mom sleep all night too? I bet you're right that if it were for someone else, she would get. My mom is like that. For example with PT, for me she was too tired, too this too that but for the actual therapists - was sooo cooperative. Oh the joys of the mother daughter dynamic.

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.

Yes, most definitely you can hire an evening caregiver to sit with mom while you're at work. The CG can bathe mom and make dinner too, and do light housekeeping.

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.

I was reading your post from a couple of years ago when your mom was 88.
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.