My mom is 80 years old, she is in stage 4-5 Parkinson’s disease with dementia. She’s had major health challenges over the past year. She’s been in and out of the hospital and in and out of the rehab nursing home. She is now home with her partner who is burnt out and unable to care for her. I have spent the last year researching home health aides and assisted-living facilities. She has fired off the home health aides because she didn’t like them and they were not doing a good job. She absolutely refuses to go to assisted-living. She actually says she will never go to assisted-living now or in the future. I believe what she saying is that she is going to decline any home health aide service and AL and nursing home options in the future and that she will take what comes to her and will die in her home no matter what. My younger brother has been appointed healthcare representative however, this will not go into effect until her doctor signs that she is incapable of making her own decisions. At this time, she insists that she is able to make her own decisions.
My question is, has anyone ever heard of this before, where a person is just going to refuse to go to assisted-living and refuse any in-home care? She’s probably going to end up dying from something that could have been prevented, but, I truly believe that she would prefer that over ever stepping foot into an assisted-living community or nursing home.
She is driving my family absolutely nuts. I have written to this group before, and I thank you all for your comments and thoughts.
I don't know how far gone your mother is with dementia, but if her partner can't take care of her anymore she gets placed regardless of whether she insists that she will not go.
Your mother with Parkinson's Disease and dementia isn't in the driver's seat anymore. She does not get to fire the homecare aides. Her domestic partner is the one who makes that decision. So it's either cooperate with the homecare or get placed.
You and your family are in a tight spot right now is she hasn't been declared incompetent by her doctor. If such is the case, all of you need to take a big step back and she will unfortunately, have to learn the hard way.
Do not prop up her false sense of independence by doing everything for her then jumping through hoops when she demands it.
Try again with homecare. This time you, your brother, and her partner tell her together that either she cooperates with homecare, or all of you are done and she will be alone.
Her burnt out partner needs help. That mom pays for. A cleaning lady is an excellent start. It's help for the partner, not for your mom so she has no say about it. Then proceed right away to aides that are doing household things for the partner and getting to know your mom. They can get meals ready, clean up, do mom's laundry, etc. As she gets to know them, then the partner can back out a bit. Don't call it what it is but say they're here to visit not to take care of her, etc.
I have a funny story for you - someone I know had a relative who was adamant they would never live in the local retirement home, lets call it X. One day while visiting this person confided that their new home wasn't so bad and they were relieved their family had listened and they weren't living at X... you guessed it, they were living at X. Maybe a little fib about where your mom's new home is would work for you too.
Now, each and every time I talk to her, she tells me how happy and lucky she is to be there. 💖
I told my family tale to a Doctor & she nodded & told me that phrase above.
It can be a hard part of the 'river' to navigate. Push the person's canoe along to where they need to go VS leave them to sink alone.
Duty if Care VS Dignity of Choice.
BUT to add on.. the person's right to rot NEVER overrides anyone's else's rights.
A person has NO rights to enslave a partner/spouse/children for their purpose/care. Everyone has Human Rights to freedom.
I explained to my family (but words were words, ACTIONS speak louder)..
Yes they can refuse to move to AL.
Yes they can refuse home help.
But these choices have CONSEQUENCES.
They cannot ever decide for me.
What I will do, won't do. How much or how. That's up to me.
Right to rot , refusing hired in home help is where we are at again . It’s going to take a hospital admit to get her in a facility .
My dad told me he would die in the Walmart parking lot before he ever went back into a facility. His choice, I honored that but, he knew ALL the consequences were his to deal with. I wasn't propping up his bad choices. He knew that and lived with HIS choices. I can live with the outcome, he couldn't.
Sometimes we just have to set, maintain and defend our boundaries and honor our loved ones bad choices.
I on the other hand have decided that I had enough and I am not making myself ill fighting with her.
Thank you. A POA cannot haul someone into a facility. I have learned this.
If the caregiver also has POA and the next time she is in the hospital they need to talk with the SW about their inability to provided care. This will force an even more unpleasant situation on your mom because she will not have any choice in the decision.
Sorry for the grim outlook but it is reality. Hope all works out and your mom realized that AL is the best for her and accepts it.
the whole time my dad was declining my mom (as well as my dad) complained a lot about home health aides and then most of the hospice workers and were adamantly opposed to any kind of facility. Now that he has passed, my mom is having some difficulties living on her own (no dementia so far but mobility problems) and she is not pleased with the helpers she has nor with the medical alert medallion which she sets off a lot by accident. She remains adamantly opposed to AL and refuses to tour any.
I think getting old just brings a lot to be unhappy about and quite a few can’t or won’t stop themselves from burdening others if circumstances allow. I am sorry to hear your mom has burnt out her partner and is driving you and your family around the bend. Some days I feel the same.
She also had dementia, although her kids vacillated back and forth about the severity of it. I never saw her, for the last 4+ years of her life, so I cannot say what I saw--just what was told to me.
She also maintained that she was FINE to take care of herself and wanted her kids to support her in the last year of her life.
It was what happened, but at such a COST, emotional and physical that it had on the kids (ages 75, 72 and 68). She required a new evaluation almost every week to determine what kind of care she needed, in home. It was very fluid and we couldn't plan anything without considering her first, every single day.
She was dxed with a level of dementia, finally, and what the kids thought was a level 1 or 2 turned out to be more like a 5 or 6 (that's considered to be Memory Care lockdown facility level!)
After over a year of the madness of daily schedule changes and fussing her to pieces, the OB just said "I'm done. She's going in to care whether she likes it or not".
Within a week, a lovely facility was chosen and she was moved. She died 8 days later, having never even having had a shower in her new place.
The day they placed her, OB stated, firmly "We should have done this 5 years ago".
All 3 of the kids are still--5 months later, struggling with the PTSD of caring for her. She was a miserable, angry, terrible patient. She had zero friends and hardly any family could stand to visit her.
So, my answer is YES, people rarely go willingly into Care Facilities. Sometimes (more often than one would think) our elder LO's are moved against their will to a place where they are cared for and above all--SAFE.
It's a hard call. I wasn't involved, except to watch my DH slowly descend into a depression he cannot climb out of. Sadly, he's the executor, so every single day there's a mess he needs to work on.
Oh, and MIL fired every single CG that came into her home. That's also very common.
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