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MIL fell today transferring out of bed onto chair, hit her head hard. She was amboed to the ER, where they discovered a suspicious spot in her brain. Doctors think it’s either a brain bleed or that the cancer has come back. She’s in the hospital pending another scan.



FIL has been refusing to take his pills because he’s positive he already took them.



SIL came home frazzled because they made appointments the same day and so she had to take both of them. Two people. One wheelchair.



Brother confided that he can see the need for AL as his relationship has been suffering with his wife being the day aide.



But everyone dreads to have the talk, even if it’s just about getting another aide to maintain aging in place. We anticipate they will be rejecting all options.



Ideas?

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The day of reckoning has arrived. I had to tell my parents that I would not sacrifice
myself or my family anymore. My father couldn't handle moms drug regimen anymore. It was a sad and scary time.
Be kind to each other.
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SO talked to brother who with his wife had just stepped in to see mil in the hosp.

Brother said he could take off from work when SO can to move the parents bed over so that a wheelchair can get to her side. This is an electric bed with apparently drawers underneath it.

Ok, and that solves about 1 percent of the problem. Fact is, if mil has either a brain bleed or 2ce relapsed cancer, she will want all available treatments and surgeries, and if she’s living, fil will insist on his third brain surgery in 18 months, because their worst fear is dying while leaving the other one behind…and prolonging the end when it will be that way.

All this will be assuming that they stay at the same level of minimum function, that being that they can feed themselves and transfer.

Falls are the greatest risk of cutting short that function. The fall problem can only be mitigated, but falling alone can be eliminated by having an aide present at all times. It is not realistic for SIL to take them both when they both have an appointment, let alone one, and with all the interventions they want there will only be increasing appointments.

They need two aides and not just Their DIL for the driving and the shopping to be accomplished by her. Someone else has to drive because someone needs to stay with the one who is home.

Its just another person. They will be pissed but the alternative is al
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CTTN55 May 2022
"Brother said he could take off from work when SO can to move the parents bed over so that a wheelchair can get to her side. This is an electric bed with apparently drawers underneath it.

Ok, and that solves about 1 percent of the problem."

That is all your BIL and SO are willing to solve at this time.
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My mother fell with TWO aides in the room.

When I told this sad fact to the discharge planner/RN at the hospital, she told me "Barbara, MY mother fell with 3 RNs in the room, and one of b them was me, her daughter. Old people fall."

We persuaded my mother to move from her isolated c suburban home by telling her that we could no longer kep missing work due to her "emergencies".

If your ILs are in AL, they will still need attendence at the many doc appointments, yes? Or are they capable of taking scheduled transport to appointments alone?
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Your family and your brother’s family ‘anticipate they will be rejecting all options’. That is going to happen if they expect that the current situation will continue – SIL will continue to step up, BIL will cope with the impact on their marriage, you and your wife will do whatever you are doing now. To change things, the four of you will all need to agree that continuing with things as they are is NOT going to happen. SIL can fake an illness (and the stress may not even be fake), BIL puts his foot down (she quits or they need to go to marriage counselling), this can’t and won’t go on.

Apart from the inevitable blow-up, chances are that your parents will spit the dummy and say that they will manage on their own, you can all get lost. So you go along with that. It won’t last long, because the next crisis will come soon, even if it’s only getting things from the shop. So then you have the same discussion again, but without ‘managing’ being on the list of options.

The kindest way to manage this might be to arrange for them to go into respite care for a month while SIL’s illness improves. Other posters have found that this is a palatable option, because it’s short term. They may find that it is much nicer than they expect. MIL’s own health may make it clear to them that going back to their house is not viable.

And at the end of the ‘trial’ time, yes, you have the conversation again. By that time you should all (including them) have a better idea about reality, and what options can work.

I hope you get other ideas, if this approach doesn’t stack up for you. But it’s worth being clear that there is no easy way, and no way to avoid family distress. Best wishes, Margaret
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PeggySue2020 May 2022
Margaret, I agree that it really falls on sil to force change here.

SO put his foot down on the driving enough so that SIL had to take them both in their car for the appointment Wednesday, one of his weekend days, so SIL put them both in the car. They had used the excuse of no ramp there to get him to lift them out over their stairs in a chair, and that excuse went away when he and brother finished the ramp.

The new excuse is going to be that neither of them should really be left alone. He agrees, but he’s not going to be their solution. One reason for this is frankly to pressure them into hiring more actual outside help.
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Double wheelchair?

Gunna need a wider ramp...

Is MIL still in the hospital?

Find a Doctor there who will speak PLAINLY to them.

Then A Social Worker.

Then the Social Worker can slide 3 shiny AL brochures over & ask them to pick one.
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AlvaDeer May 2022
I think you are right. The family saying this is one thing. Their "believing it" is another.
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You are an expert here, Peggy, so I truly believe you've got this.
The important thing is to be gentle, NEVER fall into argument, and be honest. All family meets together and each gets his statement to your parents.
It's important to make clear that there is no intention of the family to continue all this intervention which now is not intervention but a sort of "norm".
The sad fact is that once all is said and done the inlaws are unlikely to believe, until some of the enabling help is withdrawn, that this falls into reality. That realization is going to require ACTION rather than talk. As Beatty said "there will be no solutions as long as you are all the solutions".
I believe you are realistic in your expectations. Thoughts are one thing and just start out with you dread this honest talk with them, and have avoided it. But know in your heart it will take actions, or rather LACK OF ACTIONS on your part to change what is now a habitual way of life for them all.
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PeggySue2020 May 2022
Thanks so much for affirming me Alva. I’ve interacted in these sibling discussion threads about how no one is helping the primary caregiver. Some would probably bill SO as uncaring or unfeeling, but the simple fact is that there are certain things he won’t do, like toileting or anything having to do with that.

Just as an example, yesterday after his mom had been admitted, he went to Walgreens and bought her all her new chargers and toiletries, but not Depends. I’ve already told him and told the family that if it comes to the point where it comes to him having to wipe my encrusted vulva and anus that I’m going into a home first. Even though he says he would do it for me, I couldn’t let him. His mom shared that she just bets he would go do it for her still, and I was just floored by that. I mean the one thing that would disturb him more for all time would be seeing the waste encrusted private parts from whence he emerged.

Notgoodenough, yeah, he is involved, but that doesn’t mean that he’s down with working under sil or taking her orders in any capacity. The fact is that SIL bit off more than she could chew here, and it’s getting harder and harder for her to disappear for two hour alleged dog food trips or other shopping errands that could have been taken care of with Instacart two years ago. If she needs a break to that extent, then she has to step up and say so.
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SO went over there to move the bed with brother. Turns out fil has yet another appointment. Since this will be a chronic situation, SO told SIL that they would have to farm out either the driving or the sitting.

SIL blew up at SO. That’s what family is for, she said. We all have to make sacrifices.

Then you sacrifice more, b. You volunteer your hours on the weekends so the Indy can come be with you when one of you has to take them to the doctor and one has to sit with the other one. Oh no, you say, you need your weekends.

So do we.

SO is texting them several reliable medical transports as one person cannot be in two places at once.
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Beatty May 2022
SIL has fallen under an evil spell. A DELUSION in 2 parts: 1. that your in-laws are still independant & 2. That if FAMILY do stuff for them they are still independent.

Wrong. And Wrong.

Please wake up & open your eyes SIL! You have been tricked!

SEE that it is not for lack of her brother's help that is the problem here.

SHE is actually part of the problem!

She is on Team Denial.
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Sacrifice?

Sacrifice his health, his livelihood?

What Third World country does she live in?

These are folks with resources, as I understand it. Are you all "sacrificing" so that she and underemployed brother can have an inheritance?

Point out who benefits from their BS.
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PeggySue2020 May 2022
Barb, oh hell no Brother is not underemployed. He manages teams of 45-50 people building the latest and greatest home for Silicon Valley moguls.

SO doesn’t have a job with that kind of standing, and convenient weekday weekends due to said standing, so she thinks that so should dedicate all that weekend time because family, and call in when he’s working his messily job for family.

SIL and I don’t talk anymore, but this is what I’d say if we did.

First, you ain’t family in the way their biological sons are.
Second, you didn’t even nurse your own parents.
Third, you are well compensated for the time you put in unlike anyone else in the family. Hint, maybe they don’t see you as family, see point 1.
Fourth, your present approach is endangering them, Neither of the sons are available to do driving or sitting when both have to be done, just as they aren’t available when you make up these excuses of two hour runs for dog food.
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sending lots of compassion to you, peggysue. i feel sorry for you, for your whole family. it sounds so tough, so stressful -- and very unlucky, 1 emergency after another.

your poor MIL. "suspicious spot in her brain". i hope she'll be ok!! i hope she recovers very soon!

i hope others have good ideas for you! i just want to send you all my compassion!!
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PeggySue2020 May 2022
Thanks boj.

MIL was released today. We still don’t know what that spot exactly is, other than it will take multiple more appointments to find out. If her cancer has returned, all they can do at this point is daily radiation like she had before, but repeating a cancer treatment usually comes with more dismal results. And if it’s a brain bleed, the doctors may well put her on the same multiple brain surges that FIL has had. Oh, but he’s insisting on the next one, which would be the fourth BRAIN OP in 18 months. Not to mention that they now want a third cardiovascular op because the new heart device is not working properly.

She can barely stand for transfer because her ms has returned and her leg function was further damaged by the cancer treatments. FILs prior falls caused a back and two pelvic fractures and torn muscles. He can use a walker for less than 10 steps on a good day. Reason he started falling? Probably the stroke and multiple general anasthesia.

But they keep asking for more of what got them to their present degree of immobility. And they want more help to literally drive them beyond beyond that point.
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If SIL is being paid for caring, is she hanging on to the current situation for the sake of the money? Is she wants other family members to ‘make sacrifices’ and help, is she offering to share her pay? Is she saying that she can do it all, but the pay needs to improve – and if so, is it reasonable to think that she can do it all?

Who agreed to this pay situation in the first place? If you and SO were part of the agreement, is there a way for you to back out, on the basis that it is no longer working? Perhaps if you focus on the money, you may get somewhere with SIL.
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PeggySue2020 May 2022
The Brothers Wife and the in laws agreed to the pay on their own as she advertised, in her words, that she could take care of two sick people no problem. Well two years in that job has gotten impossible as they’re both unsafe to be alone.

No of course she doesn’t share her pay. Nor does anyone ask.
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Sorry for confusing SO and Brother's job situations.

Someone should arrange for a professional Needs Assessment.

A session with a lawyer or professional mediator should follow to determine the best path forward.
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It's time for a conversation of statements, not questions, as in "It's time to look at other living options" rather than "Do you think it's time to move to AL?"

Other statements need to include concerns about their safety (a non-negotiable issue), realistic demands on everyone's time without incurring guilt on them, and simple reality vs. desires. Only once reality is acknowledged and dealt with, then fulfilling desires can be discussed.
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Beatty May 2022
Yes. Very well put.

I have read & re-read this reply. This makes more sense every time! Perfect common sense.

What makes people start at the other end? Focusing on their desires, yet ignoring reality?
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Your SO is doing great having his line in the sand and not crossing it. I believe this will be very instrumental in getting SIL to see the light and realize the 70,000 just isnt worth it now that they are starting to need actual care.

And WTH is wrong with MIL wanting her grown son to wipe and clean her up. Especially when she has the money to pay an actual caregiver.
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We tiptoed “past, around, and over” our tiny beautiful tyrant, arranged a “temporary” visit, took her “for lunch”, and “temporarily” walked away, and it was BY FAR, the best thing we could have done.

About a month after being placed in Assisted Living, she was transferred to Memory Care, and until the pandemic, lived a very pleasant and comfortable life.

It is beyond time for your family to recognize that it is time for your parents to enjoy the SAFE and ORDERLY lifestyle that residential life can provide, and give you all peace of mind.

Having “the talk” CAN be a wonderful opportunity if everyone is on the same page, but we who care for my LO KNEW that she would NOT leave the house where she’d been born in the back bedroom, and she was NO LONGER SAFE there.

In two recent placements within our family, there was no way that we could have had “the talk”, but the placements exceeded what we’d expected. Consider carefully whether the value of letting matters drag along, while watching the needs grow more and more critical.

Hard, HARD STUFF. But really important for all of you.
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Beatty May 2022
"tiny beautiful tyrant".

LOL
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Brothers Wife and the in laws want to stick with just her and the Indy. Brothers Wife being like this makes the United front around making SO but not his brother Ok, then, consolidate the shopping and the doctor visits into one to two days where the Indy comes to sit. SIL then volunteers to work Saturday days for the Indy. If people are supposed to spend half their weekend volunteering for them, then she can join in that example.

Or they outsource the driving to medical ubers. That’s 150 a pop for a wheelchair assist. Or they actually do the more practical alternative and hire an extra aide for a day.
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SO should consider just quitting. Seriously.

I lived the mission creep. Then I tried keeping boundaries - was pushed & pushed & the stress was like being snowed under. So I quit.

Re-drew the line.

Point out to your SO he can do this. (It's probably time).

Saying hey folks, you ask TOO much. Hire it all, taxi, aides, cleaners whatever. I am your SON. I am NOT your nurse, chauffer, maid, royal bottom wiper.

A friend did this recently. Moved interstate to top it off.

If your SO quits, stops enabling them - they may GET IT. Accept more non-family help: either hire all their help, at home or move into AL & accept staff help.

See it's the same really! It's about accepting non-family help! They need to accept REALITY & more non-family help. They have burned family out.

Well maybe not SIL.. yet. She's about to melt down & be next.
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Well, this should be interesting. Really, it's not the in-laws that have to change -- it's your SO, as Beatty just posted.
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It’s a week after mils latest fall and hospitalization.

As usual, she called. This time it’s for building some portable 4 inch platform device that can hold her commode and her on it. The idea is so she can get out of the bed and onto it.

He expected me to be mad, but I just told him to go for it and make sure that there’s divots for the commode and a nonskid surface. So he doesn’t get blamed.

She and the dil think this is gonna fix everything, well let them figure out it won’t.
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Beatty May 2022
When will SO realise it won't?

You did Amaaazing not getting mad btw. I don't think I could.. 🤯

You got off the main stage of the next drama 🎭 but as seated in the first row seat, will need protection.

Coz the show's about to start soon.

💩 (instert fan emoji) 💣
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What I would like to know is how having a platform raised toilet is going to help mom get onto said toilet? Don't they both use wheelchairs now? How is she going to maneuver off and on step? Seems like that would just make her risk for falling that much greater.

Not to mention adding a toilet onto a platform runs the risk of mom literally believing she is a queen sitting on her throne. SO should try to convince her to invest in a solid gold toilet since mom lives in a fantasy world regarding this whole situation

Or he should build a wheelchair ramp to the toilet or better yet invent a wheelchair she can just use as a toilet so she doesn't have to transfer from chair to toilet at all.

Another option would be to raise the bed about 3 or 4 feet in the room and build a slide so mom could just wiggle off bed onto slide and then go down slide right onto the toilet.
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Beatty May 2022
🤣🤣🤣🤣 Oh stop it, I cannot breathe!!

Just remember to call the OT first to sign off the design before SO starts building.
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???

I hope I'm not completely losing my sense of humour, but I can't see what's wrong with the aim of having a toilet/commode at the same height as the bed/wheelchair and using a transfer board? Commodes are adjustable in height. There are toilet frames with raised seats. These are standard bits of equipment.

Why is it funny? What have I missed?
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sp19690 May 2022
Because making the toilet the same height as the bed or wheel chair is ridiculous and insane. An average bed is 24 inches from floor to top of mattress on average. Can you imagine building something like this in a bathroom? It is completely nuts.

Thats why I made my off the wall comments because the moms request is off the wall.

The solution is hire more aides or caretakers not retrofit the entire house like an amusement park to keep pretending that this is all normal.
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Sp, advising on adaptations and equipment that suit the person using the home is what occupational therapists are *for.* Why insist on hiring an aide to assist transfers if a simple (and cheap) transfer board allows the person to do it herself? Why refuse a toilet frame that raises the height of the seat so that the person can get on and off it easily?

There isn't anything even unusual about this, let alone nuts.
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sp19690 May 2022
While your ideas are reasonable and simple that is not what mom is requesting.

The mom wants the entire toilet raised and a platform built for toilet and wheel chair for mom to maneuver onto platform. Entirely ridicolous and unreasonable.

Yet SO is going to go ahead with this hair brained plan. No doubt cooked up by mom and SIL.
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sp 19690: "Another option would be to raise the bed about 3 or 4 feet in the room and build a slide so mom could just wiggle off bed onto slide and then go down slide right onto the toilet."

I loved your entire post! I also thought of MIL on her throne. This is absurd!

"He expected me to be mad, but I just told him to go for it and make sure that there’s divots for the commode and a nonskid surface. So he doesn’t get blamed."

He built it, so he will get blamed, anyway. Or is he going to whine, "Mummy and SIL made me do it!"

He's now pretty well established in his stepandfetchit role in this fantasy world.

But great job on not getting mad! Scoot over a bit in that front row seat, because a lot of us will want to be right there with you!
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sp19690 May 2022
😇
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I think having an OT come in and advise on this plan would be a wise step to take.
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Beatty May 2022
Or a better plan..
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I passed on the recommendation to So that an ot look at the platform plans just to make sure that this is a safety improvement. There’s also the issue of Brothers Wife having to drag a largish wooden platform in and out as there’s not room for it and her wheelchair.

I would frankly feel better if their decision was to move their present bed with the drawers underneath it to the indys room, replacing the bed the Indy had brought from her own home (!). They need a double hospital bed that can be lowered to whatever optimum height for getting them transferred, and with lift stands already almost inevitable, the bed has to have space under it for the forks to go under.

Theres a profane but accurate saying. Eff around and find out.

FIL has been able to use his walker lately for 10 steps but if his goal is to display functionality enough to get his fourth brain op and third heart op, the odds of the interventions costing him that functionality plus his cognition are well, everyone effs around hearing what they wanna hear until something happens.
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Fawnby May 2022
Old people often don’t make it to the toilet in time. Imagine her peeing or pooping herself as she transfers from bed to toilet. The patients need to be told in no uncertain terms that they are no longer in charge. Over and over again. They get no say so. Social services should help.
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Peggy; Have these folks EVER had a professional "needs assessment" either from the local Area Agency on Aging, or one ordered by their doctor?

If one wants to age in place, then one needs to have an over-arching and well-thought out plan, not a box of bandaids.
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PeggySue2020 May 2022
Therapists and nurses have been over there off and on for two years. No, this hasn’t been done. Yes it should be, which is what SO is gonna say.
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Peggy Sue; glad to hear that he's going to do so.

Sometimes, with very stubborn folks, it's better to get someone else to be the bad guy, to say, "you need to do this, or that".

It doesn't always work; but it's something that he can keep referring back to, and that he can keep in the back of his head when his parents are making unreasonable demands.
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PeggySue2020 May 2022
Thanks Barb.
Honestly and in general, I believe it is nigh impossible to retrofit a home to be compliant with what Al or SNF has.

Take the bathing issue. Their hair looks clean when we visit, same as with my parents. They don’t smell. At least one of the in laws aides is getting them over and into their high tub to accomplish this. My own father mostly lives in their upstairs where there is only a Roman tub. He can only shuffle now so I have no idea what he and my mom are doing.

My mom is 86, my father 90 this year.

I had a chat with my HPOA sibling over Mother’s Day. She’s like, Dad doesn’t want to change. It’s his right to refuse even a stairlift let alone aides. If he does start falling or becomes double incontinent, whelp the plan is that he goes to an snf.

My sibling is an md, a cancer surgeon, and the head of her department.

So maybe the only thing to do is advise them, but it’s their ultimate prerogative to eff around and find out.

The difference is that my parents know what this might mean in terms of separation. My in-laws don’t.
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SIL is never going to agree to any arraignment that costs her her cush $33.65 an hour job.

BIL isn't going to encourage anything different, 70k and an occupied wife is invaluable to him. Think how self righteous he feels? I mean, look at everything his wife does for his parents, all while you don't, tsk, tsk, tsk.

Hopefully, SO can learn that "No! I can't possibly do that." Is a viable answer.
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PeggySue2020 May 2022
Lol. I’m in the fortunate position of not being called on to help, not even by SO. I can’t for physiological reasons, nor am I gonna be bullied by SIL.

I think the in laws are exactly on the same trajectory that my parents are, but frankly I believe my mom will just place my dad. There is a certain detachment about their relationship that has always been there.

The in laws are a 180. No a plywood box won’t fix the issue. How is that thing supposed to be even safe? Again they will muddle along here.
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"The difference is that my parents know what this might mean in terms of separation. My in-laws don’t."

I was actually wondering if that's the main impetus behind their refusal to even consider entering into care. I mean, no one wants to give up their independence, but if they are afraid they will be separated...

Peggy, if FIL MUST go into a facility, do you think that might be the driving factor in getting MIL in? Assuming it's a facility where they can be together?
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PeggySue2020 May 2022
They’d rather both go to al rather than be separated. And they’d almost rather die than go to AL. It’s the dilemma most of us have here.

SO is going over there to do this box while Brothers Wife takes dad to yet another pre op appointment. Which puts him in the box with Mom should she have to toilet. I’m fairly confident that he’d rather take the job experience of having raw sewage baptize him, so to speak. That is just part of work.

Speaking of which, he has a phone interview tomorrow at 4. Wish him luck. A Saturday Sunday weekend would eliminate most mommy requests including what I think is a sneaky toileting request.
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I just can't wrap my head around the WC dais idea..

Not sure I follow how it helps the transfers?

Would a height adjustable electric bed be beneficial?

If unable to stand & pivot for transfer from bed to commode - it's time for a Sit to Stand machine or a full Hoist machine.

Then an over toilet frame?

I also just can't wrap my head around why SO is abliging?

Can he practice pursing his lips, putting his tongue to the roof of his mouth, release his tongue while making the sounds of the word November. Just stop at the first syllable: No. Practice this until it feels natural.
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PeggySue2020 May 2022
I didn’t get mad because the whole situation is as absurd as you said, Beatty. Like, you can’t just roll or slide or whatever onto a platform commode, The stand to pivot thing is a bit easier with a raised commode, I suppose, but I f you’ve ever done CrossFit you know that a plywood box heavy enough to hold a human being can’t be dragged extremely easily.

So no I don’t think it is a solution, but they’re in eff around and find out land. They won’t learn until they are made to.
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When your in-laws are assessed for a facility, don't be surprised if neither one qualifies for AL.

Much of what you say leads me to believe they are headed for a nursing home.

However, they are way to accustomed to one on one personal care, they will never willingly go anywhere that they don't have a personal caregiver.

Honestly, I don't blame them for wanting to stay home. Their biggest error is not hiring professional help and using their sons to prop them up. If they would implement those changes this would be a fine situation for everyone.

A professional would say no movable commode stand. I still laugh when I think about this really dangerous solution that everyone is helping with.
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PeggySue2020 May 2022
Hey Real, I agree with all of this.

She now wants him over at 1 pm. That’s when Brothers Wife is taking fil to the doctors. He has to be back by 330 in front of his computer for a phone job interview.

Theres no way he can finish the box in two hours. At most, he could take the measurements and get the plywood. While he’s off doing that, mom will have no one around should she need to toilet.

I mean, at this point that’s what it’s mainly about. Toileting. FIL at least has a urinal but she needs to sit down, once every 2 to 3 hours. If SO is the only person around, he’ll have to be The One.

SO is like, you two wanna die together fine, but it can’t be here. It will have to be in an al, or as you say, a Ltc. I say, like you, that they can actually stay in that house by just engaging one or two more people or agencies.
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