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SamiandPickles Asked January 2023

My grandmother cannot live alone anymore, but insists on staying in her home. How do we manage this when we live out of state?

She most likely has undiagnosed dementia. She was hit by a car over the summer and had to go to the hospital and then a rehab program. We went up to be with her for two months but she very much showtimes and hates my mother and I being there. When we are not there she guilts us about being alone but claims she's fine. She needs to walk with a walker and takes medication daily but she kind of thinks this is all temporary and often walks without the walker. We are out of state and would like her to be in independent or assisted living she complains that she is all alone and doesn't see anybody but 'isn't lonely.' She's gotten increasingly hostile with us but loves everyone else. Some neighbors come by to help out but its not enough; we had a caretaker through Home Instead but we could not trust the caretaker due to her taking her to do things without our knowledge running errands on her own time and possibly pocketing some money. We are out the end of our rope here. I know we are likely waiting for the next incident and then she'll goi to a facility and not leave but I would obviously rather have her go before something like that happens. We have had to take over all of her finances and her mail now gets shipped to me because a piece of paper that enters that house gets lost almost immediately.


 


We have a followup with her new PCP next month who knows about our dementia concerns with her and her PCP has talked to her a lot about needing to use the walker all the time. We know from her friends that she is not using the walker when we are not there.


 


This week she told us the next day that a smoke alarm went off in her bedroom and she seemed more annoyed that a smoke alarm woke her up and wouldn't stop than that the alarm was going off. Evidently she called her handyman and the battery needed to be changed. I am concerned that if an emergency happened in her home she wouldn't know what to do. She often doesn't have her cell with her in the house and refuses to wear a medical alert.


 


This whole situation is stressing my mother and I out so much. She seems to actively sabotage our attempts to make things more accessible and safer in her home. It's too much house for her and things have stopped working. Does anyone have any additional ideas on how to manage this? I know we are likely just stuck in a purgatory like state until something else happens but we cannot take her constant bullying and her constant covering for memory issues and physical issues - whenever we ask her about something being wrong we're told 'im fine' or im okay.'


 


:(

Tmbr304 Feb 2023
People who don’t know what day it is don’t call the shots.
Ellen12abc Feb 2023
I'm using this.
Windyridge Jan 2023
Sami, our elders often get to the point of it’s not what they want any longer but what they need and sadly in many if not most cases it take a crisis to push the issue. We can’t let the dementia and inability to reason rule the day. Just like with elders driving, many think they are fine but they are a danger on the roads and many loved ones afraid to face the anger of stopping the driving.

my case was much like yours. I was dealing with both parents who were not safe at home. I was making a crazy long drive every few weeks, crisis after crisis to be dealt with. My folks refused any help, no one was allowed in the house, we’re just fine! Moms falls were getting more frequent and her injuries worse. Dad had moderate dementia and could hardly tell if she were dead or sleeping.

Finally, after a bad fall and three days in the hospital I had her moved to an assisted living facility that I had previously visited and kept in contact with.

I told mom it was just until she got well. I got dad in a few days later by telling him mom needs your help over at the rehab. It was still a big hot mess for a few weeks but at least they were safe, clean, had in-house medical care and were not in danger of burning the house down or freezing to death in the back yard.

if you haven’t already done so visit some facilities in the area and keep a couple on deck for when the next crisis hits. Granny is never going to voluntarily move. You’ll just have to do what has to be done.

best of luck to you.

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ClairJ Feb 2023
I have been in your shoes with my mother. I kept her in her home as long as possible - supported that by making visits from out of town. When she became unsafe I drew a line in the sand - I sat her down and said I could no longer support her living there. I told her it was unsafe now and why; and that I couldn’t keep up with the upkeep of the home any longer because it needed too much and I lived out of town. I gave her 4 scenarios - She could live with family, she could move to an independent living apt (with a continuing care contract), she could bring a caregiver into her home, or she could apply for Medicaid and move to a nursing home. I gave her projected financials for each scenario and explained all of this to her so she could understand it. Some of these scenarios cost more than others of course. She chose independent living. I moved her last Feb. I sold her home. She is doing fine now. All that said, none of it was easy. She went through cycles of ambivalence, arguments, resistance, denial, tantrums, blaming me for everything under the sun until she accepted the reality of her situation. It took a year to get her out of the house. The beginnings of some dementia intensified her feelings and behavior. It was very stressful for both her and I and my husband. But it had to be done and she wasn’t going to get to that point on her own. I didn’t want a social worker to do it - I wanted control over how it was done and I was the one who’d have to support the decision so I wanted control in order that my needs were considered too. Things worked out. She lives in our area now. But its still a lot of work. I long for the day that I am free again to work professionally without interruption on a daily basis, live my own life, take vacations, work out, garden, read, take care of myself and my husband.
LittleOrchid Feb 2023
I agree with you on nearly all of this. One key issue, though, is that the conversation about options must take place while the elder still has enough control of his/her mind to make rational decisions and understand some specific conditions under which the change must be made.

We didn't do this with my Mom. At least not with enough detail. She always sort of agreed that "when the time came" she would move into assisted living. Of course by the time "the time" came, she no longer had the facility to understand that she was NOT safe living in her own home and needed more care than we were able to provide. We had a number of really difficult years because of this.

I am now of the mind that the time to make a change is before it is absolutely necessary and the elder has the ability to make some rational choices--not just insist that the same old routine still works.

For me and my LO, we have a two-fold criteria for "the time". One is mobility. If either of us needs assistance getting in or out of beds or cars, it is time. The other is the maintenance of home and yard. I will continue to hire additional help to maintain the house and gardens to the level that pleases me, but when the hassle of arranging for and paying for tree pruning, painting, lawn mowing, and prepping for the various tasks becomes bothersome--even if I am still keeping up--we start looking for a residential space that we can accept. My criteria are quite specific--and written-- so that I don't just let my standards slip to avoid the bother of moving. Age tends to soften the resolve of younger wisdom, so we are protecting ourselves against our own later poorer decision making.

I am also going through the stuff we have acquired and getting rid of bunches of it so that we don't kid ourselves that we are getting on OK when we really just can't stand the idea of going through the junk. Our goals are to make the best lives for ourselves that we can and also to spare our children many of the heartaches that we have suffered with our parents, aunts and uncles.
Beatty Jan 2023
No you are not alone.

I too am in 'The Club'. The 'Awaiting the Crises Club' to effect a move from solo to supported living.

A Social Worker explained the process. Advised to;
- Focus on what I can control (not what cannot).
- To inform the medical team of situation where I could (when a crises happens).
- Begin researching suitable living options & locations. Eg near LO's home or near mine.
- In summary: to be an Advocate for their care - for a NEW plan, rather than step in to prop things up that are no longer working.

To be 'ready to roll'.
SamiandPickles Jan 2023
Beatty thank you so much for your response!! I'm sure everyone here is trying to be helpful but too much felt accusatory when hindsight is 20/20. For more context my mother is in her 60s and disabled, I am in my 30s and have chronic illness so half the time we barely feel like we can care for ourselves.

I love the 'ready to roll' part, I think that will be our new mantra!
BurntCaregiver Jan 2023
You've pretty much answered all of your own questions. Really the choices are grandma (and her family including you) accept a live-in caregiver who may not be perfect and doesn't arrive on a flying umbrella like Mary Poppins.
Or grandma has to be placed in a residential care facility where she is safe and can be looked after.
From what you're saying here, she definitely has dementia. No old person ever willingly goes into a care facility and they usually don't accept homecare unless someone forces it on them.
How you deal with the asinine often dangerous stubborness is by asking the local police and APS to make wellness checks on her. Explain to them that you and your mom live out of state and that she villifies and lies about both of you to anyone that will listen. Also tell them that she is unsafe and refuses to move or accept help in her home. This will get the ball rolling for her.
There's really nothing more you can do. It's a terrible situation that many families face every day. Usually it has to come to a crisis like a fall happening and the elder getting placed against their will.
Caregiverstress Feb 2023
Totally agree. The majority on this site are dealing with loved ones who will not accept they need help and no longer can live alone. Their brains are broken. It’s part of the disease. Unless you plan on going to court to have your loved one declared incompetent and gain conservatorship, a lengthy, expensive, emotionally devastating process, you wait for an event that triggers placement. People still have free will, even when they are mentally impaired. Good example…I have an autistic brother who lives in a group home. He is in NO WAY able to make decisions for himself. He is severely autistic and does not know the difference between “dementia” dad and the dad he had before dementia. He does not know that it isn’t safe for him to be alone with my father anymore because my father can’t be trusted to care for him safely. But the state of CA says my brother still has free will, so if my father shows up to the group home to pick him up for the weekend and my brother sees him and wants to go, they can’t stop him. We got around this by informing
the state that my father has ALZ and his DL was revoked. So now if he shows up there they legally can’t let by brother get in the car with him as they would be liable because my father is breaking the law by driving without a license. As crazy as it is, even people with severe brain disorders that are a danger to themselves still have “free will”.
lkdrymom Feb 2023
Just because you don't like the answer does not mean the answer is rude or unhelpful. You said she can't live on her own which is why I asked how she managed to get discharged in the first place. I was not accusing you of anything. I was just asking if the facility she was leaving was aware she lived on her own with no one nearby to help. Another poster said that as a competent adult she is allowed to make her own decisions even if they are bad ones. Again, how is that rude, it is just a fact. She was just pointing out that if Grandma is competent to make her own decisions, you can't force her to do something she doesn't want to do. Sadly at this stage you have to wait for the next event(accident) then inform the facility she is in that she is an unsafe discharge.

We have all been through this and sometimes the answers are not all butterflies and roses. Sometimes you have to make the tough decisions that are really horrible to live through.

againx100 Jan 2023
Sami - when you read this forum, some advice will work better for you than others. Take what you like, toss what you don't. Try not to take it personally.

Since your mom has POA, maybe she should go ahead and sign mom up for a place that she thinks is best for her. Frankly, I think it would drive me crazy, waiting for something bad to happen. I did wait for it for awhile, but it was much too long in coming for me and I placed mom in assisted living, against her wishes. I told her 2 days before and hubby and I set up the apartment the next day and moved her in the next. It took her a bit to adjust but she's doing fine. Still snarky comments here and there, but that's ok. She's safe and I am not burnt out anymore. Win-win.

With dementia, you just never really know what they're up to, they can't tell you and whatever they do tell you can't trust it.

She may say she's fine but that really doesn't mean much. You know that's not really the truth.

So, get ready. Have a place lined up. Try to make a plan on getting her moved sooner rather than later.

Best of luck.
SamiandPickles Jan 2023
Thank you! Yeah probably should not reply on bad pain days!! We’re definitely looking into the places around her. It’s tough because she lives in a kind of rural suburban area but a few towns over have nice places. Some ladies from her church have recently moved to AL and they love it. We’re hoping that hearing from them may also help move her along.
AlvaDeer Jan 2023
You say "We have had to take over all finances". I hope that this was legally done and that you understand the fiduciary legal duty you have under the law as regards this; POA or guardianship is required and meticulous record keeping. I am assuming you know that.
You also say the following: "I know we are likely waiting for the next incident and then she'll goi to a facility...."
EXACTLY. As soon as she is in hospital you should contact Social services to begin placement and discharge planning.
This is the best you can do, and to be frank this is almost impossible to do long distance. I sure wish you the best. Not everything has a good answer, and an uncooperative, failing senior has no good answers at all. Sounds you are doing the best you can. I sure wish you luck and hope you'll update us and share with us all you learn; you can be of great help to others. When I first came to Forum I learned that my anxiety and helplessness shared helped me enormously. I at least knew I wasn't alone.
SamiandPickles Jan 2023
Thank you for responding. Yes this was done / is being done legally. My mother is her POA and we filed with appropriate people before we talk with them.

Just reading on this forum has been tremendously helpful; on here (along with some other googling and what not) I have learned what behavior is common and that we aren't experiencing anger from a loved one alone.
freqflyer Jan 2023
SamiandPickles, welcome to the forum. The vast majority of us who needed to care for or over-watch an elder have run into a similar situation. Usually what we have to do is wait for a medical emergency, 911, hospital, rehab, and then we place that love one into senior living.

We tell the love one the move to senior living is an extension of rehab, doctor's orders. If that elder wants to move back to their home, it is ok to use what is called a "therapeutic fib" such as the plumbing needs to be replace, etc. Something you feel that Grandmother would believe.

The hard part is now sitting and waiting for the next emergency.
SamiandPickles Jan 2023
Thank you for responding. That’s essentially what we have resigned ourselves to. When we tell her about the walker and stuff we emphasize that one more emergency room visit will result in her no longer living alone. Her perception of reality is obviously greatly skewed.

When we’ve explained what doctors have said to her because she doesn’t remember she seems to accuse us of lying to her. Saying things like ‘well they didn’t say that!’ Or ‘well I don’t remember that.’ But unfortunately when the next thing happens we will be placing her somewhere permanently. I just wish we could convince her before.
lkdrymom Jan 2023
After her last accident why was she released to live alone? At that point you should have told them she lived alone and it was an unsafe discharge. So now you just need to wait for the next emergency and tell them she can't go home alone.
SamiandPickles Jan 2023
Thank you for your response. We honestly did not know what to do at the time. We fought with the facility to extend her so we could figure out what to do it the staff were so unhelpful that we had to give up and adjust our plans to pick her up and take her home. She refuses additional care and it took a lot to get the part time caretaker in place.

She fell and broke a hip in 2020 and this past time she was hit by a car in the parking lot. While we knew there were memory issues she was able to live somewhat independently. However the trauma of this accident ended up greatly negatively affecting her mental health.

I appreciate that we ‘should’ have done things differently but my mother and I also have our own issues and we’re dealing with the legal aspect of the accident at the same time.
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