I've read a lot of great conversations here that have been tremendously supportive and insightful over the past few years.
My 85 year old Mom lives alone in a 4 bedroom large home, has moderate dementia, lives 4 hours away from me, and REFUSES all help in all its form, except for by me and my brother (who is 1.5hr away) - she lacks insight that she has dementia and plans to die in her home, says she doesn't need any help, she'd call friends if she did - you all know the story.
She is incontinent and doesn't care for her hygiene. She doesn't drive or have an oven. She climbs one short flight of stairs. We get her groceries and meals delivered and she forgets to eat. We've hired caregivers and tried all the ways to cajole her into letting them in her home. I've offered for her to move to me, to move near my brother, to move in town. We've tried other care givers to come by under the guise that they are friends I know or someone from church. We have cameras set up in all her rooms to guide her through doing things when we can or to notice if she fell.
It's clear to me and her docs she shouldn't live alone. We have POA. Mom DOES NOT want to move and doesn't want an in-home caregiver. She plans to await the crisis and says "if I fall, I'll go to the hospital and then a nursing home and that's that - I'm not going anywhere now and I don't need help".
SO - basically I feel like I'd be betraying her to force her to move to an assisted living place (that I know will confuse and anger her) and I feel like I'm betraying her by letting her live alone and basically decline in place, awaiting a crisis. I'm sick about the decision and can't drive there every weekend like I have been for 3 months.
I'm totally stuck with not knowing the best course and have concluded there is no best course - does anyone have any wisdom for me that can help me accept the outcome of one decision versus another?
Thank you for reading!
Sadly, the roles have been reversed, and now your number-one job is to keep her safe. That means changing her living situation.
Best wishes to you.
When you say she is incontinent and doesn’t care about her hygiene, how bad is it? Does this mean she wears Depends and changes them regularly herself and disposes of them in the trash, or more like she is messing herself and never changing filthy clothes? In which case I would think her skin will begin to break down and it will be painful?
And in terms of forgetting to eat, is she losing weight to a dangerous level? The more muscle wastage she gets, the more a fall will be likely and the less likely she will be able to get back up on her own. Once the fall happens, Rather than a “lift assist” you could insist the ambulance people take her in for evaluation and then insist she is unsafe discharge, so after that, placement.
Will she go for days without eating at all? Does she drink water or any liquids? Old people can live for many months on really little calories and a terrible diet (my dad did) and even very little liquid. But eventually it will take a toll, especially the dehydration.
If she develops any kind of medical issue that is bothering her (rash, infection, skin that won’t heal, pain, toothache) that can be “the reason” to take her to the ER, and from there placement.
Does she have a regular schedule, sleeping at night and up during the day? Does she lock the doors at night?
You also might try searching for a geriatric psychiatrist in her area if her diagnosing physician is not helpful.
My guess is sooner or later (within months to a year?) a crisis will occur, likely a fall. Then you leap into action. Between now and then, as others have said, have a list of suitable facilities at the ready.
Or as others have said, you can do the “I’m taking you out to lunch or shopping or church mom” and then surprise! This is your new home thing. Yes, prepare for her to be madder than hell and/ or feel completely betrayed and I get that you feel you are betraying her either way.
I really feel for you and in a lot of ways identify. I will add you definitely cant go every weekend indefinitely. You are lucky you and your brother are on the same page in this and have each other.
Best wishes and I hope you will keep us updated.
That being said, you cannot force an uncooperative adult to do anything or go anywhere even with an active PoA. You physically cannot force them. You will need to finesse it, by using strategy and therapeutic fibs. She does have impairment (according to what you said her "docs" clearly see), and she doesn't have insight into how this impacts herself and others. Your mandate as PoA is to make decisions in her own best interests. This mean she needs to be protected, nurished, housed, and retain her dignity. You are not betraying her, you are doing what she wanted when she made you her PoA. She just doesn't remember this.
But in the end if you cannot dislodge her from her home, then you *will* need to wait for a crisis. I would make a visit to her neighbors and inform them that they should not be stepping in if she asks for help. This will only burden them and delay the best solution for her and everyone. Tell them that if she comes to them for "help", they should call you and then you will act depending on what the issue is.
If you report her to APS I think they will only circle back to you, since you are her PoA -- but you can ask for their guidance on what to do. It probably varies by state and county.
I wish you success in getting her the right care at the right time!
Where I live , The county area Agency of Aging was willing to physically remove my mother from her home and bring her to an AL that I had picked out . This was 2017.
The social worker came to the home and interviewed Mom , and determined she was unsafe to live alone . The social worker asked her “ what would you do if ……”. Mom was not able to come up with plans for any of the hypothetical scenarios .
I had already chosen an AL . A date and time was agreed upon with the facility and the social worker was to return with a ( strong ) helper 2 weeks after the first visit to bring Mom to AL . The plan was for all her children to be at the house to tell her she had to go with these people .
Mom ended up in the hospital before that happened . I called the social worker from the Agency of Aging . I also told the caseworker at the hospital what was going on . Then the social worker from the Agency of Aging and the caseworker from the hospital spoke . The AL was able to get Moms room ready a few days early and Mom went straight there from the hospital .
You can check the County Website for where Mom lives , for the Agency of Aging or something similarly called .
Good Luck .
You or your brother should go to the police department in your mother's town and explain to cops what's going on. Ask them to do wellness checks on your mother. They will.
I was a caregiver to elderly people for 25 years and am in the business of it. There is no cojoling or reasoning with the demented person to 'allow' in-home caregivers. There is no trying to beg or bribe them into being kept safe. Your mother is not coping anymore and is incapable of making rational decisions for herself. So you make them for her.
You and your brother shouldn't be worrying about what actions you have to take that may confuse or anger her. Her safety and welfare are more important.
Go to the local police department in her town and tell them what's going on. Then ask them to do wellness checks on her. They will not refuse. Your mother won't open the door for homecare of anyone else, but she will for the cops otherwise they will break the door down. There may be a police department somewhere who will accept keys to a vulnerable person's home to do wellness checks but I have never heard of one. If they have to break your mother's door it, she will get placed that very day. When the police call APS they move fast. It sounds terrible, but if it will turn out to be a blessing in disguise because it will get her into care.
I'm so sorry for what you and your brother are going through, so many families are in the very same situation every day. A stubborn elder who refuses to accept the help they need to stay safe. It's a tough spot to be sure and families then have to take control and force care on the person. Good luck.
Two choices.
1. Tell mom she is no longer safe alone and you and brother cannot continue the care you are doing; choose best place you can, sell the home and provide care till the end (and the end will take longer to come with her in care).
2. Allow mom to stay until, as she says, the crisis comes. And it will whether by camera feed and a call by you to ambulance, or a call from hospital or coroner.
We all die. At this point does it matter a few more weeks, months, even years in care she hates, or dying at home? Not really. Except to her now. To you.
You don't want to face the guilt either way, and the truth is that you didn't cause this, can't fix it, and guilt isn't appropriate. Words you use on yourself such as "guilt", "betrayal", et al (is it BETRAYAL to get someone unsafe into care? Really?) have a real effect on our brains. So don't use them for self-flagellation. The sadness of all this is bad enough, without beating on yourselves.
For me? I guess at 82 I change a bit in that now I think dying at home on the floor over 12 hours is better than/as good as being in some cheery nursing home another couple of years. (So understand where I am coming from.)
BUT, were I YOU? A whole other story. I would go to Mom and say, sorry, mom. You aren't safe alone now and bro and I can't do this anymore. Now we need to get you in care, near him, near me, but somewhere. This can't go on anymore. I want you to agree to this, and I guess I want that because I hate the burden of guilt added to the grief you feel, I feel. But I WILL take charge if I much and will assume the mantle of guilt for your safety."
There are often no good answers to these thing. Sadly, there just aren't. No "fixes". This is a time of grief, loss, pain for you ALL. Stick close to bro. Come together and discuss what this end stage will look like in case 1. and in case 2. Come to some final peace. Take action of don't, and know the risks. It's a spin of the wheel. The more people you ask, the more answers you will get and the more confusion will result. There's no way out of this without GRIEF (the appropriate G-word) and pain. I am so very sorry. I hope you'll update us.
you can do two things:
1) stop helping and let her fail or
2) move her into a care home.
I am deeply sorry for what you've been through and your loss :(
Such places conduct an assessment to determine the necessary level of care. Unfortunately, once she falls or has a stroke as a precipitating crisis, she’s more likely to be recommended for a skilled nursing facility than either one of the higher levels.
If you could “betray” her into going to memory care where she’d have 24/7 eyes on her and aides to protect her, she might, for some time, avoid falling or other accidents that would land her in a SNF.
That’s all my wisdom for today. I hope you find a satisfactory solution for mom and for you.
The waiting until Depends are soaked is not great. But it sounds like she cooperates with you bathing her.
Good luck! Thinking of you.
The last fall resulted in a compression fracture in his vertebrae and he didn't have is medical alert bracelt on to call for help. He forgot to put it on, and why it was off is a mystery, but of course we all know it was subbornness.
His surgery resulted in major delirium that prevented any rehab progress and now his is unable to walk or do any weight bearing ADL's so he is now in a nursing home.
It was the only way and in a way I am glad because he can't "blame" me for putting him in a home. Even with dementia he is aware that "the fall" resulted in his temporary (it has been since Feb 2024) stay in a LTC facility until he is able to walk. I support his recovery and go with what he believes. It is not a fun rollercoaster but the crisis path was the only way.
Remember that your mother’s safety is the priority. She needs to be kept safe. Feel good that knowing that you are Doing The Right Thing for her and that you are doing this out of love.
Unfortunately- when you get to a certain point with a loved one with dementia - what they WANT is not really your biggest concern any longer. What they NEED is of upmost importance for everyone involved.
Due to other extenuating circumstances with my SIL and her DH, who were living with my FIL at the time, combined with my FIL's WANT to stay home, his DEMAND that we move heaven and earth (and my own DH, his son, move away from our home together to provide additional care) we let things go on for FAR too long. The reality was that my FIL should have moved to an ALF when he was still capable. I think that he would have kept more of his independence and mobility for longer had he been living in what he believed was a more independent environment.
Because my SIL and her DH had nowhere to go - my FIL remained in his home far longer than he was really capable of doing. They knew if he moved we would have to sell the house for his expenses. So they continued to agree to bring him home from the hospital>rehab>home cycle.
When we finally hit the crisis mode - it was incredibly stressful for all of us. Because he was used to getting his way, he just assumed he would continue to do so. Because they didn't have anywhere to go, they assumed we could just continue to bring him home - until the day when SIL could no longer do it.
Trying to find a place to permanently place your loved one - on the fly, with the party being resentful and angry and trying to prevent it - is not a fun place to be. Your options are FAR more limited when you are trying to place them in an emergent situation.
I highly recommend that you try to place before you get into a crisis if at all possible. But I realize that can't always be done!
The reality, however, is more likely lying on the floor, alone in agony and misery, unable to get to a phone, for twelve hours, or even three days or more. It is a horrible, lonely way to die.
My sister demonstrated that second reality, over which I had no say, and could do nothing but worry and await “The Call.” I went for “betrayal” with my mother, who drifted away in peace and comfort in a memory care with angels in the form of hospice workers holding her hand.
Just a heads up that placement against someone's will can be a tremendous nightmare.
I pray that you find a workable solution for the terrible situation you are dealing with. Dementia sucks!