Assisted Or Memory Care Living Question

Rascalin78 · May 2022

Good Morning All,

I have been trying for over a month to get in house care for my Mother so that I could return back home and try to get things planned in advance for moving my Mother there whether it be in my own home or in a Assisted living Memory Care facility.

It has not worked out, either the private people want the money but want to pick their hours or the agencies tell me that they cannot guarantee coverage.

I needed to resort to assisted living or memory care facility for at least temporarily to give me the time that I need and also to see if she likes it for she does like to be around other people once she relaxes.

In my Mothers early afternoon hours when she thinks the best I was able to take her in to see a nice facility and she seemed to like it other than the much smaller living quarters compared to her big house.

Then in the evening the subject may come up and she looks shocked and upset and totally against it.

I cannot get the care facilities to tell me what they do in this case and how much rebellion they put up with until the person calms down before they may call me and tell me to come get her.

I have a deposit on a nice place and I will need to move her comfortable things in which is the way that I wanted it but it is going to be a lot of work to find out in short order that I have to come back and take her home.

Does anyone have any experience with this in what these facilities do in these cases and how much they put up with?

M1 · May 2022

Rascalin, they put up with a lot.

My experience with memory care is fairly new--6 weeks--and came at the end of a hospitalization. It was/is completely involuntary, my partner does not want to be there, and has not adjusted after six weeks. She completely dismantled the nice room I had set up for her, including unplugging the lamps and taking the pictures off the walls, packed everything and has left it sitting by the door. She will not let anyone unpack it or put it back together. But--she's not aggressive at all towards other residents or staff, those are the behaviors that would get your mother kicked out. You need to be sure she's getting the right level of care: for most on this forum, their LO's need memory care, not assisted living.

I had the same experience, home care was not to be had.

Good luck. Most would say, don't talk to your mother about the move before you do it--just do it. As you've experienced, she won't remember.

Rascalin78 · May 2022

M1 wrote:

Rascalin, they put up with a lot.

My experience with memory care is fairly new--6 weeks--and came at the end of a hospitalization. It was/is completely involuntary, my partner does not want to be there, and has not adjusted after six weeks. She completely dismantled the nice room I had set up for her, including unplugging the lamps and taking the pictures off the walls, packed everything and has left it sitting by the door. She will not let anyone unpack it or put it back together. But--she's not aggressive at all towards other residents or staff, those are the behaviors that would get your mother kicked out. You need to be sure she's getting the right level of care: for most on this forum, their LO's need memory care, not assisted living.

I had the same experience, home care was not to be had.

Good luck. Most would say, don't talk to your mother about the move before you do it--just do it. As you've experienced, she won't remember.

Thanks so much for your reply.

I had her there yesterday in the afternoon and it went pretty good but come evening back home somehow it came up and it was shock, disbelief and so on.

I have no choice, I wish that I did but I have to get things worked out at my home to even be able to see if it can work and there is no way that I can if she is with me.

I have been as soft and subtle as I can and am willing to just take her there if I have to but I cannot get any of the facilities to actually tell me how far they will go with a reluctant person.

I have not had her get aggressive ... Yet ... but she is strong willed and grew up hard and I can see her at first trying to walk out and possibly resist aggressively when caught.

Memory care differs so much from place to place. I guess from the condition from who is there and how much their disease has progressed.

If my Mother were to be able to chill out she would be ok in assisted and even though she's slow to respond to others once she relaxes with you she loves people.

I put down a deposit at a place that seemed to have a good handle on their patients in memory care. The one that I went to horrified me honestly.

I have an appointment with an elder care attorney tomorrow that I was going to cancel but think that I am going to keep it now to see where I stand with things.

I have a brother here but isn't any help so to speak other than advice on the phone and my home is 8.0 hrs away.

MN Chickadee · May 2022

Unless an assisted living is high acuity and memory care specific AL they are not going to be able to deal with exit seeking, not wanting to be there etc. They aren't trained or staffed to the ratio needed for this like MC. You likely will not get mom's buy in or permission. Since she forgets the conversation hours later this just isn't going to happen. She may also have anosognosia, where the brain is damaged to the point in can't recognize its condition. In her mind she is fine. We usually have to use fibs at this stage. Tell them it is temporary. Maybe the doctor ordered it for some rehab, to get stronger, to get your blood pressure or blood sugar stable. Maybe there is a problem at the house and she needs to stay here until it's fixed. Most PWD take some time to settle in, you are unlikely to know how she will handle it long term during a respite/short term stay. My mother took 2 months to acclimate to her facility. Is there a way to move her to the permanent landing spot/city now and then deal with her house? Putting her in a care home temporarily and then moving her in a few weeks may set her back, those changes in routine can be very hard on our LOs. If you must, just know that how she behaves in the first few weeks is not necessarily how it will go long term. The essential piece is making sure she is at the level of care she needs. Staff trained in dementia care, the staffing ratio of MC, activities specific for dementia, a locked unit to prevent wandering, nursing over sight etc. My mother did not go willingly and spent the first few weeks pacing and trying to get out. The staff had experience with this and re-directed and distracted a lot. A well run MC will be very used to new residents not wanting to be there.

The attorney you are meeting with should be able to help with financial planning for her long term care. If she is likely to run out of money eventually (most do, when MC averages 6 to 12 thousand dollars per month) they can advise on spending down to get her on Medicaid, which would mean you would want to be looking for facilities near you that accept Medicaid. If the attorney you are consulting is not in the state you live in and you end up moving her out of state you may need to consult one in the new state. The rules vary by state.

harshedbuzz · May 2022

Rascal-

It's hard to make generalities about MC and AL-- they can be all over the place in terms of how they operate and who they accept as residents. Sometimes, the definition is determined by the individual state.

Some caveats-

1. Care decisions need to be made for your mom at her worst. If she's generally irritable or less cooperative in the evenings or is already "sundowning" than MC a secure MCF with dementia-informed care is your option. There's an old saying here-- by the time a family is ready to consider AL, that cruise has sailed and MC is the appropriate placement.

2. By the time a PWD requires care in a facility, they no longer have the reasoning skills to participate in the decision. Making the choice is something you need to do for her. Many PWD have anosognosia and are unable to appreciate that they aren't as capable as they once were. As short term memory fades, they will often insist that they're doing all of the IADLs and ADLs that are now beyond them as might have been their custom pre-dementia.

3. In touring, I would not bring your mom for so many reasons.

4. MCF can be all over the place. In touring, be aware a sales agent is conducting the tour. That they couldn't answer your question about managing a PWD's challenging behavior during the period of adjustment to the facility is worrisome.

Ideally, they would share with you what strategies they use (Teepa Snow and Naomi Feil are good names to hear). The sales person or DON should be able to tell you what their protocol is for a difficult resident and why/how they might dismiss them. In a good MCF this would be only if a resident was a risk to staff or other residents and usually a stay in a geripsych hospital for medication management would be a first step prior to dismissal.

5. I learned to be wary of MCFs that clearly cherry-pick their residents to include only well dressed and pleasantly befuddled elders as they are more likely to turf a problem rather than help the resident settle in. Often these are corporate chains and decorated beautifully. While this is appealing to family members, it's better for the money to be invested in the training and retention of a capable team. I toured a dozen places ahead of placing dad. By the end of my search I began my tour in the employee parking lot- I found nicer cars = better compensation and better care. Dad's 2 main aides had almost 25 years experience at this one facility.

6. It's great you have a CELA appointment. Often they're a good source of information about the nuances of various local MCFs.

7. All this aside, in your shoes I would be moving mom closer to my home. Long distance is difficult for both of you. You need boots on the ground if she's sent to the ER for any reason. And you want eyes-on to be sure care is as promised.

HB

Rascalin78 · May 2022

I Thank You all so much for your replies.

My Mother depending on when asked will either acknowledge a problem or flat out deny it and think that she is fine taking care of herself.

I talked with the administrator at my chosen facility and she advised pretty much like you all have stated. If she tries to take flight, off to secured memory care she goes.

She also stated that they can evaluate her again in time to see if she gets content and could try it again in assisted living if it doesn’t work out the first time.

Sadly I will need to trick my Mother to get her in there for even though she may be fine earlier in the day, it won’t last.

I have a brother here but it’s a long story and he doesn’t have much time.

It’s a mess but I know that God will see me through it.

Thanks Again All

Rascalin78 · May 2022

MN Chickadee wrote:

Unless an assisted living is high acuity and memory care specific AL they are not going to be able to deal with exit seeking, not wanting to be there etc. They aren't trained or staffed to the ratio needed for this like MC. You likely will not get mom's buy in or permission. Since she forgets the conversation hours later this just isn't going to happen. She may also have anosognosia, where the brain is damaged to the point in can't recognize its condition. In her mind she is fine. We usually have to use fibs at this stage. Tell them it is temporary. Maybe the doctor ordered it for some rehab, to get stronger, to get your blood pressure or blood sugar stable. Maybe there is a problem at the house and she needs to stay here until it's fixed. Most PWD take some time to settle in, you are unlikely to know how she will handle it long term during a respite/short term stay. My mother took 2 months to acclimate to her facility. Is there a way to move her to the permanent landing spot/city now and then deal with her house? Putting her in a care home temporarily and then moving her in a few weeks may set her back, those changes in routine can be very hard on our LOs. If you must, just know that how she behaves in the first few weeks is not necessarily how it will go long term. The essential piece is making sure she is at the level of care she needs. Staff trained in dementia care, the staffing ratio of MC, activities specific for dementia, a locked unit to prevent wandering, nursing over sight etc. My mother did not go willingly and spent the first few weeks pacing and trying to get out. The staff had experience with this and re-directed and distracted a lot. A well run MC will be very used to new residents not wanting to be there.

The attorney you are meeting with should be able to help with financial planning for her long term care. If she is likely to run out of money eventually (most do, when MC averages 6 to 12 thousand dollars per month) they can advise on spending down to get her on Medicaid, which would mean you would want to be looking for facilities near you that accept Medicaid. If the attorney you are consulting is not in the state you live in and you end up moving her out of state you may need to consult one in the new state. The rules vary by state.

*I wanted to respond to each of you that took the time to share your advice when I had the time do so and please read for their are bits of more information about my situation in each of your replies ... Thank You MN Chickadee

Yes indeed my Mother definitely displays signs of having "anosognosia" which hearing this term is new to me. It seems that I crash course learn everything right now.

I have previously had her an entire trust package made with including an advanced medical directive and now have the letter from her primary doctor that she can no longer make her own well being decisions.

It seems as my thoughts and decisions are blown around like a tumbleweed in an old western movie that I have come to the conclusion that she may be best to go into memory care then progress to assisted living if able to.

My fear and one that I cannot relieve myself of is that the shock of the memory care residents that are there now will depress her so much that I don't know what it may do to her.

Please folks I don't mean to sound harsh for I know if my Mother lives long enough she will be the same way.

One place that I went into was just so depressing to me that I instantly said to myself ... "No Way This Is Happening".

I appreciate your sharing your Mother's experience, it truly helps.

Rascalin78 · May 2022

harshedbuzz wrote:

Rascal-

It's hard to make generalities about MC and AL-- they can be all over the place in terms of how they operate and who they accept as residents. Sometimes, the definition is determined by the individual state.

Some caveats-

1. Care decisions need to be made for your mom at her worst. If she's generally irritable or less cooperative in the evenings or is already "sundowning" than MC a secure MCF with dementia-informed care is your option. There's an old saying here-- by the time a family is ready to consider AL, that cruise has sailed and MC is the appropriate placement.

2. By the time a PWD requires care in a facility, they no longer have the reasoning skills to participate in the decision. Making the choice is something you need to do for her. Many PWD have anosognosia and are unable to appreciate that they aren't as capable as they once were. As short term memory fades, they will often insist that they're doing all of the IADLs and ADLs that are now beyond them as might have been their custom pre-dementia.

3. In touring, I would not bring your mom for so many reasons.

4. MCF can be all over the place. In touring, be aware a sales agent is conducting the tour. That they couldn't answer your question about managing a PWD's challenging behavior during the period of adjustment to the facility is worrisome.

Ideally, they would share with you what strategies they use (Teepa Snow and Naomi Feil are good names to hear). The sales person or DON should be able to tell you what their protocol is for a difficult resident and why/how they might dismiss them. In a good MCF this would be only if a resident was a risk to staff or other residents and usually a stay in a geripsych hospital for medication management would be a first step prior to dismissal.

5. I learned to be wary of MCFs that clearly cherry-pick their residents to include only well dressed and pleasantly befuddled elders as they are more likely to turf a problem rather than help the resident settle in. Often these are corporate chains and decorated beautifully. While this is appealing to family members, it's better for the money to be invested in the training and retention of a capable team. I toured a dozen places ahead of placing dad. By the end of my search I began my tour in the employee parking lot- I found nicer cars = better compensation and better care. Dad's 2 main aides had almost 25 years experience at this one facility.

6. It's great you have a CELA appointment. Often they're a good source of information about the nuances of various local MCFs.

7. All this aside, in your shoes I would be moving mom closer to my home. Long distance is difficult for both of you. You need boots on the ground if she's sent to the ER for any reason. And you want eyes-on to be sure care is as promised.

HB

*I wanted to respond to each of you that took the time to share your advice when I had the time do so and please read for their are bits of more information about my situation in each of your replies ... Thank You harshedbuzz (I can relate to the name)

I have definitely seen differences in each facility that I have toured, especially when it comes to their memory care areas. One that I was in I new that my Mother wouldn't be going in there at this time. I know that if she continues to live long enough that she will wind up the same way but my fear is what the shock would do to her now. I don't mean to sound harsh or special in any way.

I have come to the conclusion that she could very well start in memory care if that is where my chosen facility decides that is where they should place her and I have talked with the administrator there separately from sales and she agreed that she would see to it that my Mother will be able to earn her way into the assisted living side. I guess we will see on this one.

Your tips on evaluating care centers are helpful. I have asked how well each are staffed but not so much on the experience and training levels of their staff which I see is a mistake that will be corrected.

It seems that most are looking for help today, especially the in-home care agencies that could not guarantee coverage. I also reached around with suggested people in our area on private people but they all seemed to want the money but tell me what hours that they wanted to work and none suited.

I was skeptical and cautious anyway with trying first my brothers advice of two four hour blocks morning and evening with home care because of the gaps for I have learned that my Mother can make a bad decision in no time while I have been here with her in her home for 5 weeks.

We had a new roof put on her house yesterday and I went to the basement to make a quick 10 minute phone call after giving her her morning meds in bed and she laid right back down as always. When I came back up she had gotten up and was outside with the roofers trying to tell her to get out of the way from where they were peeling the old shingles off.

Even though I know that I have to make the decision for her I feel tremendous guilt for placing her in a facility. I have a brother that lives here nearby our Mother but he has very little time and has repeatedly stated that he both can't and won't do it so its up to me. I also have my own issues at my home 8.0 hrs away that I have to work out for it seems that my wife must have appreciated her family living with us but doesn't see how it could work now with my Mother. I know that dementia ridden people are worse than a handicapped person in your home but it honestly hurts and I will most likely being ending that situation which will take me time to do and I can't have my Mother with me while searching for a place until I can get relocated to even think of trying to watch over her again.

Some may say well just move in with your Mother. This would be easy but my heart is in the south where I want to be. I often ask myself if I'm being selfish feeling this way but I am willing to try to take care of my Mother if I can but that is where I want to be and she will most likely be also in time unless she tells me that she likes it where she is then I will have to consider it. I still at this time feel that regardless if I try to watch her at my home again or is she needs to go back into a facility that she will be coming south for I can see her and be with her much more.

While this is all going across my mind I wonder about the guilt that I will feel if my Mother takes another huge mental drop from the shock of being placed in a care facility for a while so that I can work it all out.

I also wander how long that my Mother truly has to live for she seems to be dropping rapidly and just wants to sleep most of the day.

I know that I just have to do this best that I can but it still weighs on the heart.

May flowers · May 2022

I don’t have much to add to others here, but just to say that not everyone has a downturn after placement. My FIL actually improved a bit after we placed him due to activities and socialization. And he is an introvert. He was better functioning than the others but he ended up spending time with those near his stage. He loved to walk and spent hours walking with a lady who was the same. Even had it not gone that way, we at least knew he was safe and well cared for.

Anyway, you have a lot on your plate, my thoughts and prayers are with you as you make these decisions.

Rascalin78 · May 2022

May flowers wrote:

I don’t have much to add to others here, but just to say that not everyone has a downturn after placement. My FIL actually improved a bit after we placed him due to activities and socialization. And he is an introvert. He was better functioning than the others but he ended up spending time with those near his stage. He loved to walk and spent hours walking with a lady who was the same. Even had it not gone that way, we at least knew he was safe and well cared for.

Anyway, you have a lot on your plate, my thoughts and prayers are with you as you make these decisions.

May flowers you have always helped.

I appreciate your sharing your experience for they sound so similar.

I will pray for your situation also.

Rescue mom · May 2022

I’ve been dealing with a lot of ALs and MCs in recent weeks for a new job role. (And my mom was an AL resident, 2 states, for several years). A few things I saw and believe:

Many people do better in a facility, they enjoy the social activities—which were varied and constant everywhere— and the meals.

There can be a lot of gray area and “hybrids” between AL and MC services, (at cost) but the one solid dividing line IME was exit seeking or wandering. If the resident tried to get away from AL, they had to go to MC. The MCs are secured against residents’ escapes. The ALs can keep strangers out, but residents could get away with no problems. (And often absence not noticed for hours).

Beyond that, are the services such as toileting, hygiene, social activities, getting to meals….huge huge differences that could be problems at ALs. Families usually pay more at some ALs to get such services—the problem was if/when the services were provided, even when paid for.

Of course managers who meet with families assure you they’re done. “Of course we do!!” But usually it’s a lower-level aide charged with doing them, and unless the resident can or will ask, and often ask repeatedly, they are likely to be overlooked. Aides are out sick, another aide would do it “later.” Aides say they did, others say they didn’t. And so forth.

Most facilities in my area of S.FL —which has huge needs—are severely, terribly understaffed, and it’s reported as a national problem. Some have laid off employees to raise profits and balance other costs, like groceries/food. Many of us checking say it’s a crisis waiting to happen, because residents don’t get enough attention, and the workers are exhausted doing double shifts.

When you ask about staff ratios, be sure you understand what the various job titles of the staff actually mean. Who exactly can give showers, or meds? Who checks depends? Ask especially about weekend staffing.

Be concerned about who deals directly with residents, not so much janitors or housekeepers (which many places count like patient caregivers). There’s a LOT of jargon used in titles now, a term like “nurse” ,or some variation, may not mean what you think, or what it meant years ago. Same with related laws and regs, they can change almost yearly.

IME, a resident who cannot or will not ask for help with anything, needs MC. The resident who does not ask about meals, activities, etc., may be left to sit and ignored.

In truth, the two staff working for the 20 residents (assume 1-2 staff call out sick, no car, etc) are generally doing things like giving meds, cleaning up a toilet or diaper mess, or getting a bandaid for a cut (seriously, they bleed a lot). They are absolutely busy.

But finding time to see about someone who seems ok just sitting —whether they’re hungry, wet/dirty, or lonesome—is lower priority. Sure, the managers said they’re checked every hour or so for BM or wet. But really? Ummmm, I don’t think so, at least not regularly.

I’m not saying staff does not care. Most do,mand are great under bad circumstances. But most are also grossly overworked, they are working tired, and have too many people to care for, ESPECIALLY the kind of care most families expect in assisted living. I would say that kind of care rarely exists, without a lot of extra diligence and cost to family, often using private staff. .

Otherwise, the limited facility assistance often goes to the resident who asks best/most/loudest. Some staff are so new, and have so little “training”, they need months to get comfortable even they’re willing. A few, it’s just a job to be done easy as possible.

Some of these places are a disaster waiting to happen, due to lack of helpers. I honestly don’t know what it will take. Maybe lawsuits.

Also important: while many facilities are a long way from ideal or even great, and most may have issues, they are still much better for many patients than being at home. I’ve seen countless cases where facility wasn’t great, but home care was so bad as almost be abuse: well-meant but completely unable to keep the patient healthy and safe. The caregiver was simply unable, often had their own issues plus the PWD.

jfkoc · May 2022

The MOST important thing to look for is staff training...both initial and ongoing. Decent surroundings and food are not nearly as important. Ask what the training program used is. Get a specific answer.

Then you will want to get a copy of the contract which you will go over carefully. It would also be good to read their license....it will state exactly what services they will be responsible for.

Keep in mind that your want a facility that knows how to handle the bad times!

JJ401 · May 2022

“ I have a brother that lives here nearby our Mother but he has very little time and has repeatedly stated that he both can't and won't do it so its up to me. I also have my own issues at my home 8.0 hrs away that I have to work out for it seems that my wife must have appreciated her family living with us but doesn't see how it could work now with my Mother.”

You could to move Mom to your house temporarily with in home care. Once there you could find a facility near you and move Mom there. Mom has an asset (house) that could be sold and the money used to pay for this. If you are going to have to do the work of supervising her care, it should be somewhere convenient to you.

This assumes you have the necessary POAs to do this and that brother does not decide to object.

Rascalin78 · May 2022

Rescue mom wrote: