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We were advised to tell my MIL that was moved into AL during an intense medical crisis, involving hallucinations, that the drs. said she needed to be there for now. She does not believe she needs help. Her Primary Care Dr- who has not seen her in person for almost 2 years- told her over a video appointment that she should go home for a week to see how it goes. We live 40 minutes from her, she lives alone, she has fallen, and the police have “recommended” that she not live alone anymore. She is now focused on this. She is doing very well in AL, with proper nutrition, medication control, and exercise. Has anyone tried this or had this recommendation made to their family member?

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My brother was diagnosed, after a car accident, with probably early Lewy's Dementia. He was diagnosed by his symptoms, not by any testing or exams, or MRIs. He at that time lived in a very small home with very close and helpful neighbors. His worst problem was his balance. We went to rehab, and then together we made decisions based on recommendation. At the end of his rehab he was so good that they said they believed he could return home with support. However, while I could be his POA and his Trustee of Trust, taking over all record keeping and paying bills, I lived at the other end of the state, and was, like him "of an age". My bro wasn't at all computer savvy and could not order groceries in that way. Only one store in his Palm Springs area could take orders by phone and deliver. I could deliver staples through Amazon. In the end we chose Assisted Living, where he already had an ex-partner/close friend. He got two rooms and we moved him, keeping his small home. After about two months he said he thought he would like to return home. I told him this had to be his decision and that I would assist all I was able, but I asked him to keep the ALF two rooms he had out of fear of his changing his mind, and our losing those rooms. He went home to supervise a new roof, but realized during that time that without a car he was dependent on the "kindness of strangers" more than he would like to be. He also realized how unstable on feet he was becoming because of balance issues. He decided ultimately not to make this move and to sell this home, which is what we did together with the help of a dedicated realtor. It was the right decision. I was very relieved that he could make it on his own, because that is the best way.
If you do this/attempt this, I think it is crucial that you not "enable this" and that you pretend that YOU live not only 40 minutes away, but rather that you live a state away. IF you enable it I believe you both will go down under it. Make it clear that your Mom should try this out, and that you will check on her, perhaps become POA and handle her bills, etc. But that you will not be seeing her more than once a week on a weekend, and you will not be chief cook and bottle washer.
I also think it is crucial that your Mom is of somewhat solid state of mind, rational, as my bro was. It is of concern to me that the police had a feeling she was not, clearly, and don't know the details.
I wish you good luck. Don't give up her room if she has a good one. And hope that she comes to the realization on her own that this isn't the right move for her. And again, if her mind is not sound enough this move/this experiment should be out of the question.
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Where was this PCP when she is in the AL? Once she is there, her PCP should become her former PCP.
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Bighouse Sep 2021
Hi! They do have one, but she begged to see PCP she has seen for years. I agreed. We are now utilizing our POA and Medical POA to make certain she sees the doctor that is at the facility. However, the seed is now planted that she should try to go home.
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Let me tell you this: my mother is almost 95 years old, with advanced dementia & living in Memory Care Assisted Living since June of 2019. She will tell you vehemently there's NOTHING wrong with her and she does "not belong" in Memory Care at ALL. Period.

Denial is not just a river in Egypt. It is something many, many, many elders suffer from, unfortunately (for the family).

Your mother's PCP has a lot of nerve 'recommending' that she 'go home for a week to see how it goes.' Why doesn't he recommend she climb a fourteener in Colorado while he's at it, if he's going to make unrealistic & ridiculous suggestions, after not even having the decency to see her in person for over 2 years?

Your mother is doing very well in AL precisely BECAUSE she is getting proper nutrition, medication control, and exercise. Move her out of that controlled environment, and all hell will likely break loose again, as it did before she was wisely moved to AL in the first place.

If this were my mother with 'mild dementia', which doctors ALWAYS seem to call it when it's really more like Moderate dementia, I'd tell her that it's time to retire her former PCP b/c video doctoring is not real doctoring at all, and that going home for a week isn't an option because there's nobody to stay with her for that time to insure her wellbeing. So she stays put; the family is all in agreement that she's in very good hands at the AL and well cared for there. Since you have the POAs intact for her, you need to act in her best interest which is what you are doing by keeping her where she's at. "Going home" to see what happens is a recipe for disaster. Even if things go well for that week, they will NOT go well long term. Dementia does not lend itself well to living alone, under any circumstances. It progresses and worsens with time, which means your mother will wind up in AL anyway, now or later. So don't fix what isn't broken, that's my suggestion.

Good luck!
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MJ1929 Sep 2021
Not sure everyone would understand the "climb a fourteener" reference, but I do. I lived in CO for 13 years. 😉
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No. No no no.
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Whaaat??? 🤯

Were you part of this video call, are you certain that is what was said? Because I can't imagine a doctor being so absolutely clueless (or maybe I can but I don't want to believe it)
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Elsaturn Oct 2021
Absolutely! They tell us what they wanted to hear
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I have two ladies right now who I am assisting: One is in a NH and the other is in a rehab setting due to a fall. Both ladies have previous rehab "experience". Both ladies seemed to do fine in the facility when they were in the controlled setting with people checking on them, meals, meds, bathing assist, and all of the other things a facility brings. Both ladies did well and it actually looked promising to bring them each to their respective homes, but neither did well at home. One lady did last a few years at home, but had multiple falls where she laid on the floor for hours because she didn't have her life alert on and she lives alone. This led to multiple trips to the hospital and she was admitted many times. The other lady only lasted a few months after "graduating" from rehab and she was back in the hospital and then to NH due to severe confusion, multiple falls, and general physical problems partly due to her refusal to do her prescribed therapy. Trust me, both ladies were A-OK in the protected environment with all of the help that comes with it. Both ladies insisted that not much was actually being done for them in the facility and why wouldn't home be better? Well... please don't attempt this. One of my ladies had returned to her home of 45+years and seemed confused/overwhelmed by being there. Sad as that was, being home did not help her feel better or do better. It brought on a decline. Since being back in the facility, she's had long periods of stability and seems OK again. Are we moving her out - even temporarily? No.
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Vickimatthews Oct 2021
Agree! My mom would take her life alert necklace and bracelet off all the time while living alone. Not good!
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So, let's walk through the scenarios of how this could go..... She returns to her home to live alone and
1. She falls, breaks a bone and ends up in rehab, or
2. She manages to stay upright but you get calls everyday about something she needs, groceries she needs, the TV channel isn't working, she things there is someone lurking in the yard, etc...... You make multiple (daily trips) to check on things, or
3. She is at home but you realize that she isn't really eating or taking her meds because there is no cuing or supervision. She thinks she doing fine but you realize that she's not doing fine at all and you can't convince her to return to AL, or
4. She is at home and she the neighbors and police finally contact you to report that she needs more help than she has or
5. Any combination of the above scenarios.

Do you actually see any scenario here where she returns home, her dementia disappears and she manages to not fall, shop for groceries, cook meals, take her meds, and live alone without any daily assistance or supervision?

And she will NEVER agree that things aren't working out living at home, no matter how bad you realize that they are. That's part of her magical thinking that she really CAN do all the things she used to do and everything is just fine. Make up some vague excuses until she finally stops fixating on this because this is the worst idea I can imagine.
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Bighouse Sep 2021
Jkm999- It’s crazy how spot on your response is!!!! Everything you list, except for broken bones has already happened!!! I actually used the TV remote example as something that I could not do for her every other day if she was home alone. Thank you, and everyone else for reminding me that we really are trying to do what’s best for her. She does so well in a monitored environment, that I start to question my decisions! And… yes, we are switching her doctor.
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Seems like the police have a better grasp of a medical situation than her doctor does.!!!
A person with dementia should not live alone.
If she has adjusted to AL then I would leave her there.
Ask if her doctor is willing to move in with her for a week so she is not alone and the doctor can "see how it goes".
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Jeez -- get her a new doctor. What a ridiculous suggestion!

A person with dementia isn't going to know how it goes. When it goes badly (and it will), she gets the trauma of being placed in AL all over again. That's utterly absurd.

I do hope someone in your family has power of attorney and all MIL's other paperwork (will, trust, advance medical directive) is in order, because it's time for someone to take the wheel here.
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Bighouse, were you at the televisit when mom was told this?

I am curious, because in her later years, mom heard what she thought the doc was saying, not what he was actually saying.

You might give him/her a call, describe mom's CURRENT level of functioning and see what s/he thinks.
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RedVanAnnie Oct 2021
I was also wondering if Bighouse had been in on that PCP convetsation. I do not think the PCP would suggest going home out of the blue. MIL may habe asked PCP if she COULD go home and the doctor might have answered that she could "try it out."

Returning to her home alone sounds like a bad idea. If it was determined that she needed AL supervision, she still does. If she expects to live alone at home and that you are going to help her as needed, that's not living alone at home and it's a "No."
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This is commonly called *least restrictive option*.

It's a trial. In order to give the person every chance to live the way they want to. If successful - great.

If not, back around the merry-go-round of fall-hospital-rehab... then the choice again of home or into care (AL/NH/MC). Sadly, sometimes the injuries decide the course.

Some Doctors don't mince words & will tell their patients straight up "it's time, make the move". Other Doctors will not, preferring either the patient to 'get it' or family to make it happen.

You cannot force people to move who are deemed competent. Guardianship applications may even require such trials be undertaken (& have failed) before deciding on a person's competency to decide their living arrangements.

My advice would be to get home help visits set up, call her for welfare checks & be ready for the next round.

((Hugs)) & strength to you.
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Vickimatthews Oct 2021
We let my mom make her own choice to move to her own place, which led to a broken arm, and three falls in four days, her money stolen, dehydrated, not eating, not taking her meds right, and just sitting alone in her apartment, all in one months time. We had to move out, sell all her new furniture, and move her to assisted living all in only one months time. It was exhausting and expensive, and we can't see repeating this so she can be in her own place. She is not safe alone, and it sounds like this woman's mom may also need more supervision. I love my mom enough, not put in danger, even if is a danger to herself. She is doing great right now!
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jkm999 has it pegged perfectly (and this is how it went with my MIL after coming home from a rehab). Her going back for a "trial" is a hard "no" -- she is safe and will adjust in AL. Everything happened very suddenly and I can't blame her for wanting to go back home, but it would be irrational, unsafe and exhausting to do it. Muscle through her anger and grief over this profound change -- it will get better. She needs to be able to do her ADLs to live on her own. If she doesn't remember to eat or take her meds, it's a lost cause right out of the shoot (also went through this with my MIL -- she's doing very well in a good care community now).
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Vickimatthews Oct 2021
Spot on! This was my mom situation, and she is safe, happy, and we don't constantly worry!
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Many first responders are being trained in recognizing dementia. Apparently her doctor has not been trained in dementia care. No, she cannot go home.
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Vickimatthews Oct 2021
Exactly!
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If she is absolutely insistent that she goes home, then make her do it. All by herself, nobody does one thing to assist her.

Nobody steps in to help in any way, shape or form. She will either get home and work it out or she will continually use what the idiot told her (I would file a complaint against his license for this crap by the way.) to try and guilt everyone to take her home and prop her up.

I told my dad, you can do whatever you can do. That doesn't mean ordering me to find a place, pack you up, move you, make phone calls or anything else. Whatever YOU CAN DO. Boy was he hot. In his head getting others to do it was him doing it.

I will say though, it took him a year of hard work, lots of sorting things out, mostly alone, his caregivers helped him on the computer but, he did actually pull off moving out on his own. He would have rather been dead then in a facility and he did get his final wishes. He lived alone, was able to shop, take care of 3 dogs, get his laundry to the shop and prepare his own meals. Was it perfect, not close but, he made the decision that he wanted quality over quantity and I honored that desire. He was as happy as anyone could be in the situation, he had some dear people that loved him and he wasn't endangering anyone but himself in the end. Would he have lived a little healthier in a facility? I don't know but, I do know that he would have been miserable and that wasn't a good option.

As hard as it is to watch and know that the train wreck is coming, we have to step aside and let them fail on their own. If that means an earlier death, which I personally believe that our days are numbered and that we go when it is our time, then at least they got to do it their way.

Obviously there are exceptions to intervention but, I think people are pulling the trigger to soon in many cases because they have no boundaries and their parents are using them as personal slaves to prop them up, when changes could mitigate alot of the load placed on us by our senior loved ones. Making them make changes to keep their independence is a conversation that we should all have, making it abundantly clear that we are not going to step in so they don't have to make changes.

Best of luck with this difficult situation.
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BurntCaregiver Oct 2021
Isthisrealreal,

An elder with dementia cannot be left to fend for themselves. The same way a child cannot be. Home alone quickly becomes a dangerous place for the senior with dementia.
No elder wants to be in a care facility and no adult children should ever have to become nanny-slaves to their parents because they're stubborn and demanding.
We have to do what's right for them though. What's right might not be what they want or what we do. It may not make them or us happy. Sometimes what a person needs is not what they want.
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I would probably contact her primary care doctor. Fill him/her in on all the details you have shared here. It appears that her GP did not have all the facts when making this recommendation. He/She should then revise the recommendation to your loved one to stay in place in AL.
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CarolineY Oct 2021
I just wrote the exact same recommendation as you!
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Wow…tough BUT my counselor told me my responsibility is to keep my mom safe, a roof over her head and food in her life. PERIOD. I am not responsible to make her happy! My mom , in Al, due to Lewy Body dementia always questions her placement now that the extreme hallucinations and dementia has subsided. I tell her…no going home…Lewy could trigger again when you are living alone and that is unsafe. I schedule 3 very active visits with mom weekly…spaced out and on the same day time…that satisfies her..hope this helps…Good Luck! P.S. I am her POA and my decisions are the bottom line…she set that up a few years ago and always said do what I need done not what I say if I am mentally not correct..
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Many primary care providers are not well versed in dementia and it sounds like perhaps her doctor isn’t either. It reminds me a little of someone with mental illness who does great on their meds and decides they don’t need them anymore! She’s not going to get the proper care, medication control, nutrition and exercise living by herself. And the fact that the police have had to respond several times tells you she’s been in danger. She’s doing great because she is in assisted living!

When I had to tell my brother he was going into his own apartment in assisted living, the meds were a big issue. And at the time he had enough awareness to see that. I also pointed out how much happier he seemed while he was in the hospital because people were checking in on him and he was getting attention, as opposed to holing up in his apartment.

Reality check questions can help. Who will do her laundry? Lead her in exercise? Grocery shopping and cooking? Bringing her attention to the improvements she’s made because of assisted living may help.
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The recommendation to give a trial at home was unfortunate. From what you describe, she is doing well in AL and her needs are being met. I would contact the PCP and give them the info you have shared with us. Tell them that your loved
one is focused on the ‘home trial’ and that they need to walk that recommendation back for the reasons you mentioned. The PCP started this conversation and they are the one to fix it.
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She should definitely get to go home to try it.
She's actually safer, happier and won't be subjected to things that happen in Nursing Homes to be in her own Home. Nursing Homes are understaffed and they put too many on pills for so called anxiety and depression when in actuality it's mostly done to keep the patients drugged to make them not be as much trouble for the Nurses and Aides.

Hplease will be the Best Place.

You can always put cameras in her home so you can check on her anytime 24 7 from your cell phone or computer.
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Daughterof1930 Oct 2021
There is a false yet persistent belief that NH’s, which the poster is NOT asking about, drug their residents into some zombie state. Caring for my mother during fours years in a NH I never once saw this. But scaring already worried families with falsehoods is the way to go for some. Sigh….
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I agree with the sceptics - I would like to know what the PCP actually said. E.g.

GP: So Mrs H, what can I do for you today?
Mother: You were going to give me a letter for my travel insurers confirming that I'm in good health and fit to fly.
[GP gives impersonation of someone who's just accidentally swallowed a whole grapefruit.]

Now on this occasion, GP did help with mother's travel insurance, but he did so by stating the facts of her complex co-morbidities correctly and she still got her policy and she did get to go on her trip to Alaska and the Canadian Rockies, I think that one was.

No one is out to imprison older people or restrict their preferred lifestyles unduly. But if the PCP said in so many words "fine, sure, go home, give it a whirl for a week, what could possibly go wrong" then I am a Dutchman. My bet would be that he said something more like "where there's a will there's a way, let's see how we might be able to get you home for a trial period."

Is there any way that you can talk directly to the PCP and find out what his actual view is?
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Her PCP clearly doesn't understand the situation. Home ALONE??? Nope, not happening. See how it goes? The chances of it going badly far outweigh the chances of it going well. If she still owns her own home, (and I get that) then she may need a visit to see her stuff. How has the home been maintained for 2 years? Perhaps to take her there for a weekend (you visit first and be prepared) and point out everything that needs to be done before it can be comfortably lived in by anyone.

This isn't an exercise in vain as this should be done anyway to be prepared for eventualities. The home should be kept up.
When you point it all out to her tell her that there is no point in being in residence as repairs or renovations are done and take her back to AL. Reinforce this by saying "take you back home" when you refer to the AL.
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Living with and caring for my wife who is stricken with hideous AD, I can tell you that she would be at risk at home. Every day, every hour, is different. One minute she will do everything right. Minutes later nothing makes sense. Water left running, doesn't know how to go to the bathroom, can't dress, puts ice cream in the frig or a million other things.

If no one is there to check her every move, there will be trouble. Keep her where she is. Please.
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Dear Bighouse.
Any Primary Care doc who says yeah go try it... Is negligent, based on what Information and assessment...none? So I doubt he she actually said it. Think lawyers lurking ..
You should call him to ask if this was really said. My 90 parents would have fabricated this in order to try to go home...
Get the facts.
Dementia patients are still manipulative and can and will confabulate..
Prayers for you..
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Very simply - NO. Having been through similar circumstances with 3 loved ones, I can tell you that her condition will continue to decline and you'll have to go through the stress of securing a safe residence all over again. You said she's doing well where she is - that's a blessing. Besides, moving her at this point could trigger confusion along with any number of other side effects. Her doctor isn't being very thoughtful. "See how it goes?" Really? And has this doctor considered those (besides her) who will have to make the adjustments if it doesn't go well?
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If anyone has even a low level of dementia, please do NOT, DO NOT, BRING THEM HOME. The dementia will get worse and drive you insane. Unless you are very patient and can tolerate this behavior, fine - but many can't. I know I would go insane. It is best to leave them where they are as not to confuse them and get them pining for something that is not a good idea.
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Bighouse: Imho, that is quite rich of her PCP! A physician who hasn't seen his patient, your MIL, in two years is way off base in telling her "to go home for a week to see how it goes." Sadly, dementia doesn't improve.
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BurntCaregiver Oct 2021
Exactly. That doctor needs to go.
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Bighouse,

Who's your MIL's doctor? Dr. Vinnie Boombotz? SMH...This doctor who hasn't seen her in two years tells her over a video call that she should go home for a week and see how it goes. OMG. I guess it's possible for doctors to get fooled by a bit of showtiming from their patients.
If the cops said she shouldn't be living alone anymore, listen to them. They've seen her more than her doctor has. If she's being well looked after and is thriving in AL, leave her there. Let her fixate and focus on it until she tires herself out, but don't let her go back to her house. She's in AL for a reason and cannot manage living on her own anymore. Do not take her out of AL where she's already acclimated and doing well and send her home to God knows what could happen.
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She should stay in AL. Do NOT take her back home for a “week “ a week can turn into 5 years Hugs 🤗
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Of the many tragic aspects to dementia, one of them is this. A person with mild dementia is moving towards becoming a person with severe dementia, but at the moment, some of their thoughts are rational, and so they appear to be reasonable and cognitively able.
The rational part of the mother's mind is telling her-- you don't need to be in this Assisted Living situation! Get out! You're still able to be independent! I can't admit to this! No! These people are trying to control me! Ack!
Honestly that seems so irresponsible of the GP to tell her to go home and try it. What havoc will that wreak, and in how many peoples lives?
The fact is that she is thriving in her current situation because there is enough help there for her. To send her back to her house, alone, where she needs to try to start managing all aspects of her life again? That is not a good idea.
Rather, is there a way to improve her life at the AL? Are there activities that she can participate in? Can you visit regularly or take her out to lunch or dinner? What are some things that you can provide, within this framework, which will add value and meaning?
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Been there... injuries and dire situations associated with my Mom's dementia dictated AL. Months after I got my Mom placed in AL, my sister decided she wanted to move to my mom's house and take care of her. She used AL for daycare and took her to the house at night. I did not agree with this, as Mom was just adjusting to this new life. She insisted. My sister played hero for a year and began to see that it was a lot to manage. She left Mom in AL full time, which was, once again another adjustment for Mom. And, another year later, my sister insisted that she was building a house (with Mom's funds) in another city and that she would be taking Mom with her. Which, would have been another adjustment. I finally put my foot down and stopped this constant change, which was not for my Mom's benefit, at all! My point is if you try the "least restrictive option" you will likely end up where you/she started, in AL/MC!
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