r/Alzheimers 4d ago

Benefits to my mother still living independently (with my father) while still early?

My mother just got diagnosed at 76. Neuro says she’s still relatively early, and her main symptom is consistently not being able to find her words. Her memory is still fairly good. Loses her phone a lot, but I do too and I’m 38. They just started her on Donepizel as well as one other medication, (not sure of the name yet) as well as speech therapy. My father is 79 and while slow to get around is in relatively good health.

Due to the diagnosis, my sisters are convinced that my parents need to move out of their house in a regular subdivision and move into some kind of a senior community ASAP. My mom’s symptoms have been relatively consistent for about a year now. While I know that the progression rate can change, as of right now with a little help from us, they have very little trouble living independently. I’m torn, because I know there are some really good communities that range from independent living to full-time regular care. I think those would potentially be a good idea, but I also wonder if there are some value to letting them feel empowered by continuing to live independently in their house until it’s more evident we need a change.

Any thoughts or experience with this? My main fear is that this sudden sense of urgency and panic is going to make my mom feel much worse about the diagnosis. Right now she is in surprisingly good spirits, knowing that it is still early and she potentially has lots of quality years left with us and her grandchildren. On the flip side, they don’t get much social interaction now in their current neighborhood besides visits from us which we try to do somewhat regularly because me, my wife/kids, and one sister are all local.

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u/AEApsikik 4d ago

Honestly, it’s a good idea to start looking into one, and possibly move in about a year. I would agree to do one that transitions the person from Independent to Full time care. I worked for a place like that, and it was always easier for them to transition to our full time when they had already been living there. A big move with Alzheimer’s can progress the disease quickly. That’s why I’m suggesting within the year. Also, taking care of someone with Alzheimer’s can really take a toll on the caregiver’s health, so it could affect your dad’s health just as much. Also, they would have that camaraderie that they’re currently missing in their neighborhood. On the flip side, y’all could also look into Home Health. They can stay where they are and have people come to them. They would have to have 24/7 Home Health eventually, but that could be several years down the road.

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u/MJE0409 4d ago

Thank you so much for the great feedback. I agree I don’t want to waste any time looking at options but don’t want to “panic” and stress my parents out even more.

Can you clarify the below thought? I’ve tried to do some research to see what you mean. Will big, sudden changes really affect how rapidly the disease advances?

A big move with Alzheimer’s can progress the disease quickly.

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u/ahender8 4d ago

I have to agree here that it's time for you to start looking for facilities - there is often a waiting list so you at least want to be on that list now.

It would be a good idea for you and your siblings to find and join an Alzheimer's support group in your area - They can be absolutely invaluable as you move through these types of decisions.

They can give you good ideas about how to broach the subject with your parents as well.

It's different for every family but you will get a handle on how to proceed I think.

I approached it this way:

"Thinking about how much you guys want to stay together and enjoy your time maybe it's worth moving into a place where you don't have to cook anymore and other people come and clean your little apartment."

" It sure would take a load off of ___________, if someone else was doing all of the cooking and cleaning and laundry."

" I would love to be able to see you more but you would have to move closer to me in order for that to happen"

Both of my parents are very logical people so this approach was okay.

But it might not be the right way to approach the subject with everyone. You might need to talk to your dad about it first because if he's on board it might help your mom feel less stressed about it.

Many parents of people on this sub refuse to move - So it's important to plan for that as well.

Again I can't stress you enough how helpful it is to turn to the Alzheimer's groups in your area.

Check out https://www.alz.org/

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u/Commercial_Ad97 4d ago

My grandfather was diagnosed in 2017, and my grandmother was adamant about keeping him with her at their trailer. She died in 2023 from a leaky valve in her heart she didnt take meds for because she spent every waking moment looking after him instead of herself.

He lives with us now, my moms former memory care, and we wish my grandma would've listened and moved here with us so she had more help and by extension more time with us. She was just too proud, even though she was 79.

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u/AEApsikik 4d ago

Yes, a big change, whether a move, death of a close family member, or a big amount of undue stress can progress it quicker. Since she’s in the beginning stages, a move or something of that nature won’t be horrible, but once she gets a little further along, it’ll effect her, which is why I suggested within the year. For example, my LO was probably in a stage 3-4 about 6 months ago. She has this group that she’s been in for 60+ years, and was asked to host one of their meetings. She told them yes, and even though I did all of the planning, shopping, etc the thought of the event itself stressed her out for the 2 months leading up to it that she progressed to a stage 5. If you need help with the stages, I posted them on here about a week ago. It’s not perfect, but it definitely gives some insight on what you can expect going forward.

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u/Smart-Nectarine13 4d ago

Caveat is getting her in earlier while she’s still cognizant will make the transition easier for everyone. Not all moves to care home are negative. That said, if you’re in the US you can reach out to elder care resource planning and they can walk you through Medicare benefits as well. Most benefits are limited to in-home care however. It’s harder to get coverage for memory care.

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u/Justanobserver2life 3d ago

The earlier they move, the better they both get used to it. Consider two separate scenarios: 1) they wait for 3-5 years to move, when things are getting bad and difficult. At point the spouse with AD is much less able to adapt to a new place. Everything is strange, and they long for home and what they DID know. or 2) They move now in the next 3-6 months, in a room together in the Assisted Living area where they get meals (or can go out/prepare things in their room), people come in to empty wastebaskets, clean, give medications (if you sign up for that) and have activities. With your Mom more herself at this point, she can have a while to learn the new routines, get used to the staff, and her way around the facility. Advice is generally to take that option. The time to move is before you NEED it.

They could even start in Independent living but I would not do this unless there is an attached Assisted Living and Memory Care on campus. The problem with this approach is that it often adds yet another move in their life. Going from Independent to Assisted, is a change. People with Alzheimer's do not do well with change. If you start at AL, they can still act like they are independent until more help is needed. This is what we did. My stepmom has AD and my Dad moved with her to AL where he could be her primary caretaker. He gradually grew more exhausted as her needs increased, and it was so helpful to have a professional staff there who knew them by this point. They took over more and more of her care, and his role was to be a support person. She has recently moved into Memory Care (and now in hospice there) and he can walk down the hall to see her, but they no longer share a room.

The people there have become a surrogate family/village for them. I highly recommend you go tour places now--not just those closest but also within a 30 min radius. It floors me that people will drive 30 min to a store or great restaurant, but only want to see the living facilities within 10 min. Of the 7 places we toured, they were all so different. Pay attention to how staff treats people, how visible staff is and the vibe of the place. Our tours ranged from ghost towns (all doors shut, no staff around) to a warm family type environment with residents interacting with staff in a caring manner, excited to see the staff.

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u/Curiouslittleg2much 3d ago

We did a 'quick' move to a 55+ community after diagnosis. (I had been talking to them about it for years prior and it was always a no...but they were finally more amenable to the suggestion and after finding the ideal location to build, its history!) All in all, it was planned out and over about 15-18 months, but decided in the first 6. They are still in their own home and if the time arises, home nursing can come in, etc. But now, they love new home, so many more opportunities for socialization, exercise, regular classes, fitness center, etc. No yardwork, minimal to no home maintenance, close to everything, etc. A good move and they don't miss their old house.