Alternative to MC--apartment with live-in hired caregivers--good idea?

FriendinMaryland

My friend is seriously considering moving his girlfriend (PWD, 59 years old, early stage 6) into an apartment, where she will live with professional caregivers (in shifts) provided for through a state program. The application is in process. She may qualify for as much as 24/7 caregiver coverage, but if less than that, they would use private pay carers and family members to fill in the gaps. It would be an ample apartment, with bedrooms and enough space for both the PWD and the (possibly overnight) caregiver.

He is doing this out of kindness, believing that she will be happier and that this will be a “softer landing” than going into Assisted Living/Memory Care, where her ability to pay will run out after a handful of months, likely causing a second traumatizing move into a convalescent home. She is resistant to the idea of a facility in general, but amenable to the apartment scenario. What’s more, the apartment would allow her to keep her two (yappy) dogs, who would not be welcome in MC.

My friend has been valiantly taking care of his girlfriend in his home up until now, while working full-time, by cobbling together private pay helpers a couple days a week. He cannot quit or scale back his job. But being her primary caregiver has become untenable, especially as he has just taken on responsibility for his recently widowed father, who may come to live in the home as well.

I have read many threads concerning timing and whether or not to place someone. But I’ve never seen anything about independent living apartments. My specific question, then, is:

Do any of you have experience (either first- or second-hand) of a PWD moving into a regular apartment and receiving care there? Is this something that can work?

M1

That's a lot to process. Does he hold powers of attorney for her? That is going to matter, both now and down the road. sounds very, very expensive frankly, perhaps more so than memory care would be. Is the "state program" a Medicaid program such as PACE? Is she qualified for Medicaid?

I would also worry about being able to keep consistent caregivers, and about having to handle the inevitable no shows/sick calls etc. There are some folks here who have done 24/7 care at home all the way through death, but most of those are spousal or children caring for elderly parents.

FriendinMaryland

Hello, M1. I know, it is a lot. Yes, he holds power of attorney. It is a Medicaid program and it looks like she will qualify.

I, too, am worried about the difficulty in keeping consistent caregivers. That is one of the reasons I was asking the community if this scenario seemed do-able.

M1

I have some experience with similar Medicaid programs in our state. Typically, they require that there be a primary caregiver identified. Would that be her boyfriend, even if he doesn't live with her? And typically, such programs do not provide 24/7 care, but will approve a certain amount of care based on calculations of times needed to assist the person with activities of daily living. In my state, there is a statutory maximum of 27 hours of care per week (1400 hours per year) that can only be exceeded in exceptional cases, when the person needs more care but it is still cheaper than putting them in a nursing home.

II think he's going to have to do a lot of number crunching once the application is processed to see if it's even feasible.

another consideration is that the state program would frown on the same caregivers being asked to take care of his dad also. That would be very unlikely to work. There are such things as shared services for children (typically siblings) but not for unrelated adults. So if he brought his father in it would likely be all private pay.

FriendinMaryland

Thank you for sharing your experience. Yes, he would remain the primary caregiver even though not living with his girlfriend. I will ask him about the statutory maximum in his state—27 hours/week does not sound like nearly enough.

I don't think he was going to seek state assistance for his father, so medicaid wouldn't be an issue. The problem will be the time he needs to devote to dad. Those hours spent on dad's doctor's appointments and other errands are chunks of time he is not available for whatever is going on with his girlfriend. It makes me think of that action figure from our childhood—remember Stretch Armstrong? The way you could pull the doll's limbs in different directions and they'd keep stretching and stretching?

SSHarkey

I don’t like the sound of this. She’d be isolated from everyone but her caregivers. Memory Care would allow her to have social interaction. If she’s Medicaid, she would still qualify for a nursing facility. Again, more social interaction. Personally, I would hate being socked away, alone. When you state that she’s stage 6, she’s not really capable of deciding for herself. He needs to do what is best for her, not what she thinks she wants in the moment. Like someone else said, this sounds more expensive a facility.

Iris L.

This sounds somewhat like the situation of my cousin who had Alzheimer's Disease who lived in the apartment that she owned in an independent living community. She had 24/7 caregivers supervised by her children off-site. The caregivers were highly recommended and apparently were established caregivers for residents of that community so they were known and reliable. My cousin was able to socialize as much as she could with the residents that she already knew. The care was private pay. That lasted for about two years, after which she was transferred to a Memory Care facility where she lived for a few months until passing. The caregivers came to her memorial service and spoke about how much they cared for her and the family. I think this was a special situation and not easily replicatable with random unskilled caregivers in a distant apartment without direct supervision.

Many members who have paid caregivers come to the home complain that they are not trained in dementia care and are unreliable in covering their hours. What about handling the myriad problems that come up?

How will he handle wandering? Rental apartments are not allowed to have double bolted locks.

Iris

FriendinMaryland

SS, I agree about the potential isolation. Up until now, it is what has concerned me the most. I would hate for him to go through all of this trouble—which would be ongoing, it seems—for a situation that would be sadder for the PWD than a facility alternative.

Iris, thank you for sharing your cousin's story. While I understand it would be hard to replicate, it actually sounds like a pretty ideal situation. But you bring up a very good question about wandering. I don't know if he's been thinking about that. She hadn't been showing any signs of wandering, but just had her first incident about a week ago.

M1

So many issues…it really sounds like reinventing the wheel, without the opportunities for socialization that will be needed as she gets worse and without being able to foresee all the potential pitfalls.

One of the really hard things in these situations is having to make decisions without input from the affected person. It's very natural to want to include her in discussions about her future, but honestly, you really can't, because she doesn't have the reasoning power, and by including her, you've created a situation in which she's dug her heels in and expressed resistance to some alternatives.

Without unlimited funds, he probably needs to be looking at a Medicaid bed in a nursing home or memory care facility (MC is covered in some states, but not others).

harshedbuzz

This sounds really creepy, controlling and borderline abusive to me.

Firstly, does this person have the necessary documents to do this? Does the GF have a family member or other friend who would be willing to step in. Secondly, what is the nature of the relationship— are they long term and is there a reason they aren't married?

Who is funding the apartment? Who funds their current residence? Is it owned jointly? Is he concerned placement would impact him inheriting a jointly owned property if she needs Medicaid at some point?

It sounds like he wants his life back. No judgement. Surely there is no reason why they couldn't continue to live together with her having said caregivers come in to provide care so her could work, have uninterrupted sleep, attend to his own business and have a social life. If his current housing isn't conducive to long-term in-home care, changes could be made or they could move to another place.

I feel like his assumptions about Medicaid care are unrealistic. Medicaid is about mitigating cost. In-home care delivery is not going to be 24/7, it's only going to be enough hours to make it possible for a family to avoid residential placement. Medicaid will not offer more than what they'd paid for a contracted bed in a facility.

The other concern is that often hours are allotted by these governmental programs but the bodies to fill the shifts are just not there to take them as most people who do this work can make more working for agencies or on their own. I have a family member with a family-foster arrangement of a grandson with severe CP. He's supposed to get 50 hours of in-home/in-school nursing support based on his Medicaid service plan; but sadly, workers are in short supply and not reliable for a single mom who needs to work to support her older children. And in my state, Medicaid pays pediatric caregivers a bit more than those serving the adult population. Plus, he's cute, pleasant and doesn't weigh much. He now resides in what is basically a skilled nursing home for medically fragile children where he's getting excellent care and social interaction.

Personally, I think there are a lot of minuses to this. She'd be isolated without a social enrichment and without the layer of safety the checks of a team approach provide. We used in-home caregivers for dad prior to placement and my experience was that the quality of care he got from the aides at the MCF was far superior to what the agency sent. At the MCF the staff were very well-trained and experienced. And they were working dementia care as a choice rather than a default. Dad's daytime duo had over 45 years of experience between them. The whole design of the building, activities and schedule were dementia-informed.

That said, at my mom's old apartment, there were a number of elderly people living with this sort of arrangement and my former neighbor did this twice next door— first with his wife who had MS with cognitive changes similar to dementia and then later with the mother of his second wife who had Alzheimer's. IME, this sort of arrangement typically happens when adult children have made a deathbed promise to the other parents and there's enough money to make it work. In both instances, he hired a caregiver to live-in and hired agency shift aides to provide days off and vacations when family wasn't available to provide care. He did live somewhere else the last 10 years of his wife's illness because of the work commute but did visit for dinner several nights a week and took her out for dinner in her van at least weekly. Basically, this can work but it's going to be work to keep going and will probably cost more than a MCF.

HB

harshedbuzz

@Iris L.

That sounds very like what my neighbor did for his MIL. His wife hired a lady who did this professionally to do the bulk of the care. The CG had a husband who lived with her. On Sundays the CG would have her grandchildren come which the MIL adored— she'd been a teacher. Through the week, her own teenaged grandchildren would pop in.

This PWD lived longer than anyone expected and the caregiver was planning to quit as she really wanted to move back to her own home and kids. They made an arrangement for the PWD to move into the CG's home with hospice services for the last year of her life.

HB

Phoenix1966

Cobbling on to what others have said, I don’t think having his father living there will work. You mention he was recently widowed. Does his son know if his father suffers from any mental decline? Often adult children don’t know in the case where both parents are alive, because if one spouse has cognitive issues, the other spouse has been providing scaffolding whether either spouse even realizes it. When the spouse who had been providing this dies, the cracks begin to show in the survivor.

I’m not saying his father has any deficits, but if he does, they will begin to become recognizable now.

FriendinMaryland

Regarding the father: the idea is for him to come live in my friend's house. Father is not showing any cognitive decline, but there are some physical issues, and dad is grieving the loss of his wife and eager to come live with his son. I think everyone (except the girlfriend WD) is in agreement that there is no way that could work as long as the girlfriend (and the hired caregivers she requires) continues to live in his house. It's not a large house, either, and has only one bathroom.

Harshedbuzz asked about the girlfriend's family, and as far as I understand, her family is MIA. Adult children on the other side of the country with no plans to move back, siblings who call or visit once in a blue moon, despite friend's efforts to set up something more regular. Everyone seems fine with leaving everything on friend's shoulders.

It seems like he's between a rock and a hard place. And an even harder place.

harshedbuzz

@FriendinMaryland

This is a difficult situation. I don't envy this man; that's a lot of responsibility.

I can't help but think dad might do better in an ALF himself. If he has mobility issues, the friend's home may not be suitable for long. And if friend works, he's not going to be able to provide the sort of social stimulation a quality AL could. I moved my mom back to the area when dad was diagnosed and now that she's widowed, I have 100% responsibility for her emotional well-being. It's a lot and I don't work. Men generally do quite well in AL— other men generally are happy to include new guys and if/when he's ready the ladies will as well.

The adult child thing is tricky. A lot of this depends on the nature of this couple's relationship prior to the onset of dementia. Was it a long term, cohabitation de-facto marriage with shared property and/or assets. Or did they maintain separate households and date? If it was the former, the adult children may feel this is his responsibility.

At any rate, it is unreasonable for an adult child to be expected to drop their lives and move across country to tend to a PWD. That said, if this man is not able to provide the sort of care a person in stage requires and he doesn't have POA for her, it would make sense to reach out to the children and move her now so they can supervise her care where they live.

If he has POA, then a MCF that accepts Medicaid is best. If that isn't an option in your state, then it's best to find a MCF with a SNF that she can transfer to when she's run out of money. It would be worth exploring this with the children if they live in a state that does do Medicaid MCFs as that would be better for her needs.

There is no "soft landing" in dementia. At stage 6, she needs a secure unit and dementia-informed care. It can be hard on one's heart to tour these places, especially for so young a prospective resident. There was a woman who didn't look a day over 45 in dad's MCF and it just broke my heart to watch her. But by the time a PWD is stage 6, it's all about the hands-on care and not amenities or decor. I can appreciate that the loss of the dogs will be difficult, but I feel like she'd be safer and better attended in a quality facility. Perhaps he could keep the dogs and bring them for visits.
HB

FriendinMaryland

HB, thank you for your thoughtful response. And you're right, it is helpful to understand the nature of the couple's relationship before the onset of dementia—I would say they were more the latter: maintaining separate property and finances, having been together a only handful of years before dementia hit. He does have all the POAs, though. I think because the adult kids are so far away and uninvolved.

You said "There is no 'soft landing' in dementia". This is really a key takeaway that cannot be ignored.

You (and others in this thread) are speaking from the trenches of this terrifying disease. For that I have great respect. Thank you for sharing your valuable experience.

Phoenix1966

I think @harshedbuzz has given you the best scenario for the type of placement the PWD needs. And that is something very important to impress upon your friend. He should be making the choice that best takes care of her needs. She may have said she’d be “happier” in an apartment, but that doesn’t mean it is better for her. Often, older family members will tell younger ones that they want to stay where they are currently living and not go anywhere else, least of all anything that makes them think “institution”. And that’s all fine and good, but so few realistically plan for “aging in place”, meaning the hallways are wide enough to accommodate walkers/wheelchairs if necessary. Grab bars and railings in bathrooms. A single floor residence. A shower or bath large enough to accommodate a chair and a helper. Money or Long Term Care insurance to cover the caregivers that may be needed in the future. And these are just a few examples to help successfully stay in the home until the end.

Not only will caregivers be needed, but probably dog walkers as well in your friend’s scenario. PWD can become very unreliable for the care of anything as the disease progresses. She may unintentionally starve the dogs, believing they’ve been fed. Or she may overfeed the dogs, thinking the opposite. She may miss signs of illness in either one of them (again, unintentionally allowing them to suffer)or, like my grandmother, may not let them outside at all because she’s afraid someone will hurt them(a very common delusion my grandmother had…you can imagine how the house looked and smelled after a while when she didn’t let them out at all).

I understand your friend’s desire to keep her happy, but even the apartment may not do that. As some PWD progress, they start to verbalize a “desire to go home”. And this is a place no one can take them, because they are wishing to go back in time to when other family was alive and they themselves were young. Your friend may go to all this trouble to get everything set up, only to be told by his LO that she is in fact not happy at all. The Dementia Behavioral Assessment Tool puts the girlfriend at the emotional age equivalent of anywhere between 2-8 years old at the most. As hard as that is to wrap one’s head around, your friend needs to keep that in mind when he deals with her. She no longer is in a place where one can reasonably expect her to make good judgement calls about living arrangements any longer.

Iris L.

I agree with HB in regards to the father with mobility problems. Is this Parkinson's Disease? They are at risk for falling. The man will be at work with DD at home alone. People have the wrong idea about assisted living for an older adult, it is basically a nice apartment that you don't have to take care of, you only take care of yourself. At my cousin's independent living home, so much was provided: daily meals in two dining rooms, weekly housekeeping, daily entertainment (movies), and all the safety measures, including a call button in the bathroom, a manager available 24 hours a day, and security at the gate, also many social, arts and crafts and exercise and sports and swimming activities. Also a free shuttle bus was available to get to all the activities around the complex which included beautiful gardens and landscaping. Plus she was around people in her age group and she made a lot of friends. This was available to her before she became ill with dementia. Several residents were mobility challenged, using canes, walkers or wheelchairs. Although this was called independent living, I thought of it as assisted living. A residence like this might be ideal for the father, he would be with his peers and able to enjoy himself while the son was at work.

Iris

MN Chickadee

I tend to agree with everything HB said.

At the point where I was deciding for myself in this situation where I would live if faced with similar circumstances, I would choose a memory care facility. I have been in many of them and while not perfect (no place is) they can be very good. They are built just right for dementia in layout. They provide social outlets, both with other residents and the staff. Dementia appropriate activities through the day. Outings for those that can handle going out. Many bring in music and therapy animals. Staff usually go through dementia training when hired and often ongoing training. If a caregiver calls out sick it's management's problem, they find a replacement or mandate someone to stay late. The oversight from the nurses was excellent and they caught stuff we would have missed at home. They had physicians and other health professionals who did rounds right there. While it can be a long adjustment, there are benefits. When you are talking about hiring home care it would be very unusual for it to actually be cheaper than a facility unless he is going to be covering a majority of the hours himself. Being in an apartment with 24/7 caregivers sounds like it has potential for isolation and things not being up to standards due to staff with little oversight.