Mom is about to be homeless, how do we decide what to do?

hoditx

Hi, my mom was diagnosed with ALZ just about a year ago, but we had been noticing decline for about a year before that. She has progressed significantly and now I believe is in early Stage 5, but with some characteristics from the later stages. She has been living with her partner (long term relationship, not married, they have been living together for about 7 years, previously had separate households). Her partner is no longer able/willing to provide care for her and has asked that we (the children, myself, brother, and sister) move her out of his home. Because he had hinted at this previously, we already had set up for her to visit her brother in another state for an extended visit - she will be there a little over a month. But we need to figure out where she is going when she comes back. And she very much wants to go home.

We want her to go back to the same town she has been living in. My brother is there, her partner is there (if he still wants to be involved at all?? we aren't sure), and she has been going to a really great day program specifically for ALZ/dementia and it seemed to be helping her. She really does not want to move in to a facility - she has told us this basically our whole lives. So we were considering renting her a small townhome/condo and hiring caregivers essentially full-time when she isn't at the daycare or my brother isn't able to be with her. She doesn't want to consider this option either, because she is having a very hard time believing that her partner does not want her to come home.

With that option of getting her her own place with caregivers - are we just delaying the inevitable for no real benefit and causing an extra move because she will eventually need to be placed in memory care anyway?? I feel like (and the staff at the day care agree) that she is not quite at the stage where memory care is necessary, and that she would decline more rapidly if we put her in one at this point. But she cannot manage on her own either - she does need help with meal prep, medication management, sometimes dressing appropriately, etc. So far she is not a fall risk and has not started wandering, but I know that is likely to come soon. I've heard that Assisted Living will kick her out if she starts wandering. Also I worry that she may not voluntarily participate in as many activities at an assisted living type place as she currently does with at the day care (because everyone is doing the same thing and it's kind of the only option, vs being able to stay in her room). Not to mention the fact that we likely don't have time to get her placed into a facility in the timeframe that we want to get her back to her home state (before X-mas)…

Please help me figure out how to make this decision and how to help her accept it (if that is possible).

JulietteBee

Mom's situation is quite sad. However, not being married, her years-long partner does not desire to be locked in for the long haul that dementia is guaranteed to take you all on.

Your plan is an unnecessary 2-step one, designed only to postpone the inevitable.

If mom is already in need of aid to complete the above mentioned ADLs, she evidently is at the stage of needing an AL facility, at the minimum. A move to a MC facility can take place later, as the need arises. It would be good if you could find a place that have both AL & MC onsite.

All the best to you.🫂🙏🏽💙

SusanB-dil

Hi hoditx - welcome to 'here', but sorry for the reason.

I agree with JulietteBee - you would be delaying the inevitable. Also - do NOT depend on the long-term partner for a thing! They are already making it clear as to where they stand.

I would say that if needed quickly, perhaps an assisted living would be ok for temporary. Do keep in mind that 99.9% of our LO 'say' they should never be brought to a memory care. However, sometimes it is just not feasible, capable, nor practical to keep them at home.

Also - is paperwork in order? DPOA and HIPPA accesses very important.

H1235

Welcome. I agree with the advice already given. Sorry if this is a bit harsh. We don’t get a choice when life hits us with awful stuff. I don’t ever want to go to a nursing home, but the reality is I may have to. Her request to never go to mc is not realistic! You need to do what will keep her safe first and foremost. 24/7 in home aids is very expensive and to be honest I think a person with dementia is better off in a more controlled environment being around people their own age. Coordinating caregivers to make sure someone is always there is also going to be a lot of work. I have attached a staging tool. Notice that at stage 5 it recommends memory care. If you are moving her to a facility it is generally best to move her near the person with the DPOA. Many people with dementia have anosognosia. This is the inability to recognize their symptoms or limitations. The DPOA needs to make this decision for her. She will not understand.

DBAT.pdf

Phoenix1966

In complete agreement with the above suggestions/recommendations. Please keep in mind that her request not to be placed in a MC facility is just that if she did not make long-term financial plans some time ago for caregivers, a place to live that could acommodate any changing care needs(wider hallways for walkers, grab bars in the bathtub or a walk-in shower with room for a seat, etc.).

I’m sorry you’re in this situation, but happy you found your way here.

hoditx

Thanks all for the comments so far. I guess I should not be surprised at the unanimous agreement toward placing her in a MC facility.

Now that I am reviewing the DBAT again, she may only be in Stage 4, with a few characteristics from early Stage 5 (what are the criteria for scoring in a particular stage?), but she does not have the falling, wandering, or hallucinations from stage 5. She is certainly disoriented to time/date/season. Not sure if being in Stage 4 vs early 5 changes anyone's opinions, or if it's just wishful thinking on my part.

She did set up POAs when she did her will back in 2017. I am the medical POA and my brother (who lives in the town where we are planning for her to return to) is the financial POA. She does have a long term care plan that pays out about $3500/mo, and she has a decent amount in investments.

When we toured memory care facilities over the summer it really seemed like everyone in there was much more advanced than our mom, so we didn't feel like she was quite at that stage just yet. And the woman who runs the daycare keeps telling us that she does not think memory care is the right place for her right now - that she expects she would decline more rapidly in that setting. So that is why we are trying to explore other options. And she would be going to this high-quality dementia-specific day program where she participates in activities and has nursing staff available during the day. I know she will almost certainly eventually have to be in a facility, but if we could delay that for a year or two while ensuring that she remains safe and with as good a quality of life as possible, isn't that worth doing? Or am I being naive and it's not possible. It's hard because either way she will not be getting what she wants which is to be back at "home" with her partner. It's not like the decision is between her staying at home or moving to a facility; both places will be unfamiliar.

She also has a dog, which is another reason we were considering a private residence (assuming caregivers could be found that could assist with feeding, accompany on walks, etc) - the dog is very old and likely doesn't have another year left in her. But my mom enjoys walking her and is still able to do so multiple times per day.

The other consideration is that I really don't know that we have time to get her placed into a facility in the time frame we are looking at, so it's likely going to be multiple moves either way. Would a move to a condo with caregivers for a longer period of time before going to a facility be better than multiple moves in quick succession?

I am really just thinking out loud here, thanks very much for listening.

ronda b

Would a senior living place be possible?

sandwichone123

I'm concerned with the self serving statements of the day care. Placement does not increase disease progression, but the day care would be losing a stable client. Often people appear to progress after placement, because with stress behaviors increase, but then they stabilize with the predictable routine.

JulietteBee

Not to sound harsh but YOU have become the parent of your parent. YOU make the decisions, not her.

Having had more experience on this journey than you, others have already commented. Ultimately, this is a decision YOU will not only have to make, but will have to live with.

Last year, after watching my own DM regress further and further, I had to move her to an IL facility 1 mile from me, as opposed to her living in her mortgage-free 2100 sq. ft house, 5 miles away.

Oh how she cried! Oh how the guilt tried to kill me! Yet, I had to do what was best for HER, despite her opposition to the plan.

She is currently transitioning to yet another stage. A little over a year later, another life altering decision, has to, once more be made by ME!

If I knew then what I know now, I would have put her in an AL facility from last year.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Oof. This is sticky all around. In some respects, you are ahead of the game in terms of having the POAs in place along with a LTC policy and some assets. That will go a long way towards getting her into a nicer facility. Unfortunately, she sounds mid-stage dementia which could mean a life expectancy of as much as a decade of care needs or not. It's the uncertainty that makes this so hard in terms of the financial piece.

I personally don't like the idea of split POAs with one child (typically the son) holding the purse and another (always a girl if there is one) acting as medical decision-maker. Ideally it should be 1 person and the PWD needs to live close enough to the POA so that POA can have regular eyes-on and meet an ambulance as it pulls into the local ED.

I would lean towards a facility placement unless your brother wants her in his home and has a lifestyle to make it work. He might be able to pass off in-home aides as "a housekeeper" or "friend who's down-on-their-luck in need of some work".

If you select a facility, opting for one with continuing care in the form of AL and MC makes a lot of sense. Two of mom's sisters had dementia at the same time. One was placed in a higher end CCRC which allowed her to reside in the MC section but socialize and have meals with the AL population because she had a delightful personality and had a foot in both worlds. This worked well for a couple years.

Her less pleasant sister was in a different AL facility, and things were not so rosy. This facility was intended for those who just need a little assistance often because of mobility issues and it was a bad fit. Aunt couldn't remember when to show up for meals and couldn't keep up with their activities or conversations. The other ladies were quick to pick up on this and excluded her from the group. Sadly, she had a fall in her suite and broke her hip. Because AL only had a daily well-check for meds, so wasn't discovered for hours.

FWIW, it's pretty common for a PWD to have symptoms/behaviors from 2 or more stages at once. And not all PWD will tick off every box— my dad never wandered and maintained conversational speech until he died from aspiration pneumonia. A PWD is generally considered to be in the stage for which they have any symptom. Related to that, care needs to be appropriate to mom's ability to function when she's most confused.

HB

H1235

It’s so difficult to make these decisions! I think a lot depends on your lo’s personality and their symptoms. When my mom was living with my brother in his home she constantly wanted to do things she was not capable of around the house. He let her do her own laundry, but I doubt it was done properly. She was always wanting to go out and work in the yard, but she was a big fall risk and didn’t want to use her cane. She was mad we didn’t want her going down stairs (fall risk). She was angry we wouldn’t let her mow the lawn. Her judgment is so bad. I think being in a home setting made her want to do all those normal things, so it really wasn’t good for her. In Al some of these constant arguments were resolved and she loved being around people her own age. It was definitely a move for the better. But everyone is different. Have you considered assisted living? That might give her the independence she wants and allow her to be around people not as far along. They usually do an assessment to see where she is at. At my mom’s facility, the more care needed the higher the cost. So some residents got help dressing and showering while others didn’t. I would definitely look for a place that also offers mc, so to transition is easier when the time comes. But keep in mind the doors will not be locked and she can leave when she wants. If you go this route make sure you ask a lot of questions so you know what care will be provided. My mil never wandered or had any desire to escape and was safe in Al til she fell and broke her arm. That’s the thing with dementia, you just don’t know what to plan for.

Victoriaredux

Does her out-of-state brother have an idea of her current condition? Will he be able to care for her during the visit ? A month is a long time.

What is the fallback if she declines rapidly because of the travel, the loss of her partner and the new environment. Where will the dog be for that month? Could she get lost walking it at her brother's unfamiliar location? Maybe , sadly, it should be re-homed while she is gone so that placement is easier when the month visit is over. And just not mentioned again .

"She really does not want to move in to a facility - she has told us this basically our whole lives." No one ever said they want a facility- because who wants to be fragile or dependent?

Having FT caregivers in a personal residence, even if you use an agency , is usually the most expensive and hard to keep staffed & managed. And it won't slow or stop the disease course. It is what it is.

That's sad about her partner but it sounds like he's made up his mind. Can't blame him .

Look at the financial DPOA and see if your brother can sub appoint you with financial authority for care decisions and purchases- as if he utilized a professional fiduciary so that you don't need to get his ok for every purchase . Most people just think of the finances after they have passed when they draft a DPOA and not that someone may need to be ordering equipment, staff or picking a care home for years while they are alive.

The drafting lawyer can clarify how it could work. How close distance wise are you to your brother's town- does he see his part in this as going to dr visits, meeting the ambulance at the ER etc or should you be looking at placement closer to where you are ? Will your sister be helping? Is she close distance wise to allow her to help with some of this?

The least amount of physical moves to get her safe in a setting where she can go through the stages will be the easiest on all of you.

MN Chickadee

You have received good advice here. I would add that you should assess her care needs based on her worst days, not her best. And assume the worst days will become the new normal with all these changes. PWD tend to struggle with brain power during transitions, and the travel to brothers followed by a move will likely set her back no matter where she moves. She will be out of her familiar setting and her routines which most PWD thrive on. You might find she is very firmly in stage 5 or even later after the next couple months. If you choose a private house I would still get on wait lists at memory care facilities. Things can change really fast and it's important to have a plan B and C.