Assisted Living versus Memory Care versus in-home care?

ColetteMomko

Hello, 

My mother was just diagnosed with Alzheimer's and I'm her primary long distance care giver. 

She has three children, aside from myself, my sister lives in New Zealand which is in major lock down from COVID and my  brother lives in Boston. My brother's wife allegedly has a weak immune system and he is refusing to travel to risk exposing her to COVID19. Both my siblings are not currently working. My sister is ready and willing to help, the minute she knows she has an avenue to return to New Zealand after flying here to support me. At this time there isn't one that would work.

That leaves myself. I work full time and just bought a house in the city I live in as of July this year.  She lives one days travel away from me and I flew out in early August (before she was diagnosed) to take her to a few doctor's appointments, work through her finances, and tour a few facilities.

At this time, it would be a big financial hardship to relocate near her so we are looking into care options. I believe she is in early stage Alzheimer's. She is forgetful but she still can remember short term things we repeatedly tell her, she can carry conversations and remembers names and people that are in contact with her.  She does recycle the same things in one conversation a lot but overall, provided she isn't stressed, most people find she hides her condition quite well and it takes spending a few hours with her to catch on to her memory loss. 

That said, her living situation is very isolated and I am anxious to get her into a situation where she will have more social interaction. She is from Japan and due to her diagnosis uses her English less and less. I found an assisted living facility that caters specifically to Japanese communities where she lives and can accommodate some level of care but does not have memory care listed on their site. My mom needs no physical assistance and is in good physical health.

My conundrum is whether it makes sense to put her in assisted living where she will have more social interaction (due to language and cultural needs) with the understanding that we'd have to move her eventually.  At that time, I will likely move her to personal or memory care near me. This is probably a more expensive route as you pay a fee each facility you move to. My mother has some assets but I foresee that my mom will likely burn through them completely at some point- with long term care being so incredibly expensive.  My goal is to get her into a good facility near me before her assets are gone. Finally, I'm considering hiring at home care until I can arrange to relocate near her for 2 months to help assist with her move but wondering if that is an unsafe option to have her not be monitored 24/7. (Also would love any advice on potential ways to find caregiving support for people who's first language isn't English).

I know that if I were willing to take on her care, it would probably save a lot of money but I am doubtful I can give good care with a full time job. It would also require one of us to move and if I move it would create a lot of financial hardship, but if she moves- much less socialization for her (where I live there's not a Japanese community at all).

Anyway, navigating a lot of timing issues on top of the shock, guilt, grief, and fear. Appreciate any guidance.  

Rescue mom

You have so much going on…others will be able to offer more and better suggestions. But I wanted to advise, sometimes it takes a couple days to get a lot of responses. 

Meanwhile, a couple things jumped out: your mom is doing OK now, as far as you know—and that’s big. Have you been in her home recently? (Sounds like a few months ago) Do you know if it’s clean, the food situation, etc., not her telling you, but from someone seeing it. Things can change fast.

But she will get worse. Some faster than others, but they do not get better or stay the same (barring some other health catastrophe).

Are you able to watch/govern  her finances from where you are? Spending and money matters can be a huge early problem. So is vulnerability to scams. Do you have DPOA? If not, that’s needed ASAP.

Unless someone is wealthy, she will probably need Medicaid. The prep work to qualify is critically important, and best done with an attorneys help.

I have never heard of anyone who can be a caregiver, 24/7 (that’s what it will take), plus hold a job, without family or paid help. PWDs quickly reach a point when they cannot be safely left unsupervised.  They do things that are dangerous, or they do not recognize danger when they see it. Like leaving a 3yo child alone.

At-home help is great, but usually costs more than a facility. You may need it before you can arrange a move. Long-distance caregiving has been almost impossible for many people here. Moving her near you sounds good, and don’t wait too long. They often adjust better, make more friends,  earlier. 

Assisted living places vary enormously in how much they do for a later-stage Alzheimer’s resident. Also, as others report here, residents often “ostracize” or ignore a person who is more impaired than most others.

Most ALs in my experience—and they do vary—expect residents to be able to ask for help. If the resident does not know to ask (the problem with my mom), or are unwilling to bathe or socialize, for example,  without a lot of coaxing, then they are easily overlooked in AL and need MC. That’s one, very general rule for me about when MC is needed.

loveskitties

I understand that at the moment you and she find the Japanese community an asset.

However, you need to assess what will be best for her in the long run as the disease progresses.

Will that community rally to her aid when she can no longer care for herself full-time?  If not then the better solution might be to have her closer to you/family.  Even though you work full time, you will have the opportunity to see her often and be available should emergencies occur.

I wish you both the best as you make these difficult decisions.

harshedbuzz

ColetteMomko wrote:

Hello, 

My mother was just diagnosed with Alzheimer's and I'm her primary long distance care giver. 

She has three children, aside from myself, my sister lives in New Zealand which is in major lock down from COVID and my  brother lives in Boston. My brother's wife allegedly has a weak immune system and he is refusing to travel to risk exposing her to COVID19. Both my siblings are not currently working. My sister is ready and willing to help, the minute she knows she has an avenue to return to New Zealand after flying here to support me. At this time there isn't one that would work.

That leaves myself. I work full time and just bought a house in the city I live in as of July this year.  She lives one days travel away from me and I flew out in early August (before she was diagnosed) to take her to a few doctor's appointments, work through her finances, and tour a few facilities.

Which one of you has the legal authority to act on mom's behalf? Does she have a POA and Health Directive naming one or more of you to take over when she no longer can? If this hasn't been done, you may want to do this while she is still competent to understand and sign such documents. Otherwise you are looking at guardianship which is more time consuming and expensive. If it does come down to guardianship, you may need to go through the process where she lives now and when you move her to your state. My aunt needed to do this when she stepped in to help her sister. 

At this time, it would be a big financial hardship to relocate near her so we are looking into care options.

I am a firm believer in moving the PWD to be convenient to the person responsible for their care. I moved my parents when dad was diagnosed. Dad was livid and mom really missed her place in FL, but even as a couple with one not impaired, they were not safe.

Long distance is hard to manage even with the additional expense of a geriatric care manager local to her to be your eyes and ears. It is almost impossible to do in-home care- even pre-COVID staff shortages- from a distance. Who would provide coverage if a HHA called out, quit or just flaked?

I believe she is in early stage Alzheimer's. She is forgetful but she still can remember short term things we repeatedly tell her, she can carry conversations and remembers names and people that are in contact with her.  She does recycle the same things in one conversation a lot but overall, provided she isn't stressed, most people find she hides her condition quite well and it takes spending a few hours with her to catch on to her memory loss. 

I know 2 people who shifted away from the language they learned as teenagers/young adults as Alzheimer's progressed. In both, this symptom came in the middle stages of the disease. This might be a question for her neurologist.

IME, sometimes loved ones are not the best judges of how cognitively impaired their spouse or parents is. I think it's the knowledge we have of their history and personality that provides context for understanding others might not have. Either that, or it's those rose-tinted lenses. There's also a concept known as "showtiming" or "hostess mode" where a PWD can hold it together for short periods of time by reverting to scripts or deflecting away from memory. 

By memory loss is only one aspect of Alzheimer's/dementia. Loss of executive function in the early stages is the piece that can make them unsafe without supervision leaving the prey for scammers and dangerous decisions. 

That said, her living situation is very isolated and I am anxious to get her into a situation where she will have more social interaction. She is from Japan and due to her diagnosis uses her English less and less. I found an assisted living facility that caters specifically to Japanese communities where she lives and can accommodate some level of care but does not have memory care listed on their site. My mom needs no physical assistance and is in good physical health.

This AL might be a short term solution. It would be great to have a place where she could use Japanese and be understood. That said, it might not work for long. The expectation in a traditional hospitality model AL is for the resident to come and go as they please, showing up for meals and activities in which they are interested and asking for help if they need it. My family made the mistake of placing my aunt in AL and it went badly. Very badly. She didn't show up to meals because she couldn't recall when they were. Other residents quickly figured out she'd had a cognitive shift and shunned her like a bunch of middle school mean girls. And she wasn't checked regularly, so when she broke her hip she was on the floor for upwards of 12 hours. 

My conundrum is whether it makes sense to put her in assisted living where she will have more social interaction (due to language and cultural needs) with the understanding that we'd have to move her eventually.  At that time, I will likely move her to personal or memory care near me.

This would be great if you can pull it off. However it's a gamble. She could have a medical event, like a stroke, that would make it extremely difficult to move her other than using medical transport. If she's a day away from you, that's a jet. Another potential issue would be if she progressed past the point where a MCF would accept her for residency. While most MCFs will allow a person to age in place (with additional private pay or hospice aides generally), they do have an expectation that those moving in are ambulatory and self-feeding. If you miss this window, your only option would be a SNF which is not ideal. 

This is probably a more expensive route as you pay a fee each facility you move to.

This varies a great deal. I found the shiny-sparkly corporate MCFs/Personal Care places had higher entrances fees than some other very nice places. Dad's MCF entry fee was about $2000.

My mother has some assets but I foresee that my mom will likely burn through them completely at some point- with long term care being so incredibly expensive.  My goal is to get her into a good facility near me before her assets are gone.

This is worth exploring with MCFs near you. Where I live, Medicaid does not fund AL- only a SNF and the PWD would need that level of care to qualify. MCFs that had an affiliated SNF that accepted Medicaid generally had the expectation that one would be self-pay for 2-3 years before converting to a Medicaid bed. If she doesn't have enough to afford, a couple years in AL where she is now, then it would be prudent to move her to a MCF near you now. 

Finally, I'm considering hiring at home care until I can arrange to relocate near her for 2 months to help assist with her move but wondering if that is an unsafe option to have her not be monitored 24/7. (Also would love any advice on potential ways to find caregiving support for people who's first language isn't English).

It's kind of hard to say whether your mom needs 24/7 care right now. Her doctor might be a better judge of that. 

This isn't going to be a situation where you assist her with the move. She may run hot and cold about actually moving once plans are made, and she no longer has the executive function to really participate in such an enterprise and the whole thing will probably trigger upset. It's best to move her where she's going to live and then deal with her stuff and selling the house. I set dad up in an apartment with mom and sold both their houses using a POA. When they didn't like the apartment, I sent them to a hotel for the weekend and moved them into a house. 

I know that if I were willing to take on her care, it would probably save a lot of money but I am doubtful I can give good care with a full time job.

Care of a PWD in the middle and late stages is three 40 hours jobs and four 12 hour weekend shifts. One person can't do it even if they're not doing anything else. 

It would also require one of us to move and if I move it would create a lot of financial hardship, but if she moves- much less socialization for her (where I live there's not a Japanese community at all).

This is really sad. I know my one friend whose mom reverted to German found a Hungarian HHA who spoke German and was wonderful with her mom. But then mom progressed to the point she didn't participate in any of the activities the aide had been doing with her, so the aide dropped them. 

Anyway, navigating a lot of timing issues on top of the shock, guilt, grief, and fear. Appreciate any guidance.  

Good luck. It sounds like you have been tasked with a uniquely difficult situation. 

King Boo

Excellent posts above.  

Semi long distance former caregiver me would rx-

-proceed as if you are the sole decision maker and caregiver.  If the siblings come through, it's icing on the cake, but do not count on it.  Deal with your current resources.  Which is just  you.

-Mom needs to be near you now, culture specific AL or not, because it is impossible to adequately monitor her care and status from afar.  Life and death decisions from a distance are a terrible position to be in.  Don't wax sentimental about 'ideal'.  Things change on a dime with this disease.  You need quick access to her.  Find a Japanese speaker companion to hire and come in periodically might be an option.  

-Mom will be unattractive destitute to many facilities.  If possible, find a community near you that offers start to finish care, provided it is quality care at all care levels. It takes strategy, and financial analysis.  A Certified Elder Law Attorney can help you.   www.nelf.org    Care on Medicaid is not impossible, you just have a little less control and options in certain circumstances.