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.
However since dementia set in, he has forgotten and denies he ever said that, and has kept screaming and kicking to go back home even though it would be crazy and totally unsafe to do!
As others are saying, I'm not sure what decision making capacity your mom has, but assuming she has been evaluated and found to not be competent to make decisions, then unless you guys can pull some clever "tough love" moves to get her moved, it might be worth considering she get a guardian assigned at which point she can be forced.....
How do I know? Of course I cannot be sure as all Parkinson’s patients are different, but at late stage 4 and nearing stage 5 PD can progress quickly and she might need NH. Or other complications can arise.
You are probably right she will end up dying from something else, which is typical of late stage of PD. Many people don’t reach stage 5 as the succumb to aspiration pneumonia, choking or have other co morbid diseases.
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.
Next time Mom is in the hospital, better rehab, you have a 24/7 evaluation done. If found she is 24 /7 care, tell the SW she cannot return home because there is no one able to care for her at this point. She needs to go to an AL (if she can afford it) or a SNF. Refuse to take her home. Don't let them tell you there is help, once you walk out the door with her, she is your responsibility.
Her Dementia keeps her from being able to make informed decisions. I so hope there is a Finacial POA. If so, if immediate you can place Mom. If you need to prove Dementia thruva doctor ot doctors to invoke your POA, then get it done.
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.
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.
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 .
Between my husband’s parents , one step parent and my parents ……
We are 5 out of 5 being stubborn . So yes , have heard of this before along with many others .
It’s so common . It takes not helping them and letting them end up in the hospital to get them placed in a facility.
A wise social worker from my County Area of Aging told me “ Stop helping , let them fail , sometimes it’s the only way to get them to accept help other than family , whether it be in home care or assisted living “.
Don’t beat your head against a wall while helping her. She won’t give in so long as someone is taking care of her .
I’m so tired of this stubbornness . We are on the last parent, my mother in law . At this point , I’m fine with her dying at home . She won’t assign POA , and so far seems to be competent . She has a blood clot in her leg and is running her partner ( who has cancer and early dementia ) ragged .
If Mom ends up in a hospital , tell the social worker she’s an unsafe discharge and needs to be placed in assisted living or maybe even memory care . Do not take her home , tell them no one is able to provide the amount of care she needs .
Good Luck .
Here's what I have told countless stubborn seniors who refused homecare assistance who firmly believed their families should be enslaved to their care needs.
-Nothing gets a senior a one-way ticket to a nursing home faster than being stubborn.
I've had to get a little mean over the years with clients. Like letting the senior know that if they continue with the stubborness and refusal of care assistance, decisons are going to start getting made FOR them and not WITH them. Nine times out of ten when a senior thinks their family is bluffing and won't put them into care, they are wrong. The senior who thinks because they won't do a POA or any estate planning that their families will be the old-age care plan if they want to inherit also usually end up getting placed.
The social worker who told you to stop helping and let them fail was exactly right. I call this learning the 'hard way'. Sadly, many people have to.
Have a look at what support could be withdrawn to make a quick impact on ‘independence’? My suggestion is enjoyable food. Someone can go without supplied food for two or three days without it being lethal. Someone can go longer with adequate but very boring food, just enough calories. When they get testy, you tell them that they are seeing how DEPENDENT they are. They can get a pleasant diet by moving into care. Stopping ‘outings’ takes longer to make an impact, but that or other things may work.
You need to make things ‘worse’ if M is quite happy with the way things are. I will “die in my home no matter what” seems like a reasonable choice, but not when it assumes lots of support and care. Perhaps reasonable for ‘right to rot’ elders who live alone.
I had to have a laugh when you mention the pleasant diet. My mother was a notorious complainer about meals. Now, I'm Greek and Italian. There's no way the food isn't going to be good.
I adopted what my aunt (mother's sister) used to do when their mother would complain about meals. Take her plate and empty it in the garbage. Or give it to the dog. Then you get nothing.
I took a step back because I was tired of the complaining. I do not tolerate complaining. Anyway, I did no cooking or shopping or anything else. When my mother got tired of living on stale crackers and old peanut butter, the complaining about the meals was greatly reduced.
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.
It's best now to get your/her ducks in a row, and start doing what is best for all involved, not just your mom.
Because of your moms broken brain she no longer gets a say about anything. Period. End of sentence.
And the sad truth is that your mom will more than likely get her wish of not ever going into an assisted living facility as she will have to go immediately into a memory care facility instead.
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.
Palliative Care doctors are a wonderful tool. They do assessments and talk to the patients about the realities of living at home and what is required vs living in AL or some other care home. They bring reality and brevity to the situation and talk to the patient about how difficult it is for family members, when they choose to not live in a place that will provide for them and take care of their needs.
Good luck!
First of all, if your father has ANY dementia he should not be driving across the street let alone be two hours at a time on the road several days a week. Take some responsibility and get his keys away because he's endangering lives every time he gets behind the wheel.
It''s great that your mother is in a nice place. Maybe your father would be happy there with her if they have availability?
On the other hand her partner and the family has enabled her to maintain her illusion of "independence" to the detriment of those around her.
What happens when her partner/caregiver dies before she does? Are you going to move in with her or move her in with you?
Might be time to back off, let the partner back off as well if he/she would be willing to. Maybe mom will see the light that she can't manage on her own and that she does need help either at home or in Assisted Living.
Just wondering if she has actually toured an AL recently?
Loss of empathy and "extreme stubbornness" are feature behaviors of dementia. Family caregiving has to happen on the caregiver's terms, therefore this current arrangment isn't working (as you are all aware). She won't like the change, and you may not be able to physically force her into a facility (no matter how nice) so I would start with what againx100 suggested. It worked for my family.
I wish you much success in putting an appropriate plan in place for her.
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. 💖
It's hard, I completely get that , but I am also for letting people make there own choices, untill dementia is diagnosed.
They have a right to live or not live the way they choose.
Untill your mom gets hurt or is declared unfit , there is little you can do
Other than talk to her , tell her how worried you are and how that worry is affecting you
So sorry 😞
I don't understand - ever - the refusal to go to assisted living. My mother enjoyed living there, greeting other people's pets, being waited on by aides who knew what they were doing. Plus housekeeping and laundry done for her. Take your mom to observe, and once she sees that they don't torture elders with fire and knives, maybe she'll expand her mind to the modern era where assisted living is a plus, not a minus.
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.