Want to do the best for my Mom

mrhmlh

Hello all

This is my first post but I have been reading the discussions (parent caregiving) and see what a great community this is.

Background- my 96 yr old mother was diagnosed with mixed dementia (vascular /alz) Oct 2023. I’m also wondering if she has LATE dementia due to the age at diagnosis. She was hospitalized Nov 2020 due to kidney issues/bacteremia. After discharge to home, she had 40 hr/week in-home care, mainly just to help with meals and be there while she regained her strength Because it was the pandemic, I continued the in-home care M-F 4 hrs per day for “companionship”. One person was schedule for this shift until she quit due to health issues. After that, the caregivers varied; the “help” was questionable (fell asleep ; didn’t give meds; left without notice, etc). So, In March 2025, I retired to take care of my Mom full time. On her last Dr visit in July her “test” score was 3. She uses a walker, when she remembers. She has minimal to no short term memory. She still feeds herself and eats well, although wants smaller portions. I have to continually remind her to drink something. She sleeps a lot now. She rarely talks, only from time to time.She still entertains herself reading catalogs. Physically, she has bad knees so ambulating can be painful. I have her in Depends, but she goes to the bathroom on her own.

We go back and forth (5-6 hr drive) between her house and mine. She wants to stay “in her home” which means no facility. We went to a Senior Day Center tour and she stayed for a music hour. The LVN said she kept getting up to leave , and back in the car, she said “I don’t want to go back”. She was always self-entertaining (reading, crosswords, journaling, calligraphy, cross-stitch) and enjoyed social activities thru her church. All her friends have died and she has no one where she lives. Should I try Senior Day Care again?

May 2024, I toured 5-6 AL/MC facilities in my hometown. There is a specialized dementia facility which I hope to tour before we return for 3 weeks at her home. They say their patients are grouped per stage rather than all dementia patients in one MC unit (which was found in the AL/MC facilities) . Has anyone found an advantage to the specialized centers?

For now, having her with me FT seems doable, but I know as her disease progresses, this will change. In my mind, I think- “ it will be when she’s bedridden and incontinent” , but I’m probably in denial. Can anyone offer advice with this situation? What am I missing on this journey with her?

towhee

Hello and welcome. The late and early terms refer to age at time of diagnosis. Early onset is before 65 years of age, late onset over 65. So yes, your mother is very late onset, but in terms of disease progression somewhere in late middle or moderate stage. Probably. If you look under Groups you will see one called New Caregiver Help. It has a lot of good info including a link to the description of various stages. I would try the Senior Day again for a short time, staying with her for a couple times until she gets used to it. It will give you a break and give her some familiarity with what it is like in an AL/MC. She might be able to continue do do some of her own entertainment activities if they are simplified, but she will lose the ability to self start.

It sounds like you are doing the right things, we just have to learn as we go, realizing that there will always be something new to cope with.

SDianeL

Welcome. Sounds like you are looking at all the right things. I would continue to narrow choices for a MC facility and get her on a waiting list if they have one. You will know when it’s time. Usually when they require 24/7 care that you are no longer able to provide. I would also try Day Care again. Hopefully she won’t remember saying she didn’t want to go back.

H1235

Welcome. In my experience with Al the amount of care is limited. The doors a left unlocked and while they would probably stop her if a staff member happened to see her try to leave, there is generally not much to keep residents from wandering off. My mom was given medication, but no one watched her take it. I would recommend that if you choose Al you are clear what care is provided. Since you have already looked into Al and mc you may already know that there can be a waiting list. Since you never know what to expect next it might be good to get on a list now just in case. I know she has said she wants to stay in her home. This is not an uncommon demand with dementia. I would ask yourself what she would think about this situation if you could go back in time 20 years and talk with her. Would she really expect you to live with her for three weeks at a time. In my opinion this is a big ask and not one that most parents (able to think clearly) would ask of their child. In my opinion it’s time to take into consideration what is best for not just your mom, but for yourself and your family. This is such a hard path we are all on. We are all just doing the best we can and learning as we go. I attached a couple of resources that might be helpful since you are new here.

DBAT.pdf

understanding-the-dementia-experience.pdf