Refusing care despite advanced needs?

When you were 3 or 4 years old and went shopping with mom and you wanted a toy and she said "no" and you started to get fussy, cry, maybe throw a tantrum did she give in?
When you were 16 and wanted to go on a date and stay out late and mom and dad said "no" and you got all upset and stomped your foot and said "you never let me do anything...I hate you!" did they give in?
Most of the "no's" in your life were for your best interests, to keep you safe. Not because they wanted you to have a miserable life, not because they hated you, but because they loved you and part of life is hearing "NO" once in a while.
Time to stop letting grandma and grandpa throw temper tantrums.
Time to make sure they are safe.
The 2 options I see are :
They accept help IN THEIR home
The transition to Assisted Living or possibly Memory Care. (it sounds like they would both be better in MC than AL due to the level of care both need, and they would not have to be separated)
This is their choice. They can choose one or the other.
Do you have POA?
Are they both "competent" if not do they need a Guardian?
Are there other family members that you can talk to about this?

The elder I cared for was in complete denial as to how MUCH care she really needed and I wonder if that's the case with your grandparents? I think this is pretty common and it must be difficult to face the loss of ability/independence. Anyway, I'd get the eye roll and sigh when I'd ask her about pills that obviously had not been taken (she was saying she took them), she would hide the checkbook from me or carry it around in her pocket so I couldn't "mess up" her stuff (a.k.a. paying for necessities), she would urinate all over herself (stool accidents too) and would accuse me of exaggerating and denying her the "right" to drive and dozens of other things. There were also falls, letting strangers in the house, calling the police for no reason, and other odd things. She was with it enough that she convinced a few other people that she was "fine" but I had cruelly stepped in randomly and took over her life. (Why would I do that?). My biggest struggle was not whether she needed a nursing home, but HOW on Earth to get her there when she could be very coherent at times she was refusing to go? I mention this because you might run into it - you make a decision for their own good but they won't follow it. After a miserable existence trying to take care of her (all the while her saying I do "nothing" for her and she's "fine" and complaining about me to whoever would listen) she eventually had a loss of consciousness situation and landed in the hospital. I did not bring her home. I still hear from others that she thinks it's "silly" for her to be in a NH but the staff tells me she needs help with everything - and I believe them because I had lived it. Of course elder does not remember any of this, so therefore she denies it. I think this is part of what you're dealing with and why it's so hard - in your grandparents' minds, they are "fine" and don't need all this overkill. You know differently and I believe you. I did bring someone in for a needs assessment (hoping that someone could help us) but it actually made things worse because elder put on a show and seemed very competent - the nurse believed it.

"harbor a mentality that all long-term care facilities are low-level prisons where residents are tortured, and feel that any family members owe it to them as a debt of honor I guess to care for them."

I have no sage advice on their feelings of entitlement for your time and care, aside from being blunt and honest. It seems the types that feel this way don't ever suddenly see the light. They have to be told and forced. It's exhausting.

But to their fears that facilities are like torture chambers- you may be able to change that some by showing them some virtual tours. Many facilities are like staying at a nice hotel. An all inclusive hotel. Since they have resources they can likely go to one of the nicer places.

After Covid isn't an issue maybe you could even do an in-person tour, and have lunch at the facility.

An aunt in my extended family moved to a nice facility, and when I was in town my son and I went to have lunch with her. I was amazed at how nice the place was, like a mini-resort. The dining hall was like a restaurant. Her apartment was lovely. So.... today's seniors need to be brought up to speed on modern day facilities. Many are very nice.

I am still thinking of how to approach this...

Next idea: Simplify it for them.

They NEED assistance with their living arrangements. This is FACT.
At present they are living how they wish, in their own home, & YOU are providing all the assistance.

But the simple truth is their needs now outweigh what you can do. What ONE Person can do.

So these are their choices;

A. Age in Place: Stay home but MUST accept home help. Lots & lots of it.

B. Move: into an 'assisted living' community/facility & accept staff help.

C. Continue until a Crises: until illness or fall etc. Then be forced to accept change.

In each of these options notice the common thing? They will need to ACCEPT HELP, specifically *Non-Family* help.

Losing one's independence is hard, very hard. But it is denial to think because your relative does everything for you, that you are still independent.

Do you have POA that allows you to make decisions for your grandparents when they can no longer safely and competently do so for themselves? It’s sounds like if you don’t that it’s too late for either of them to sign legal documents as dementia has come. I would skip the home aides step and go with moving them, it’s very hard to get the level of help they need in home when they’re resistant, plus aides can be unreliable. If you have POA a now is the time to use it and get them moved. Accept that being happy about it is likely not going to happen, you’ll have to be the bad guy. Hopefully, they’ll accept it over some time and know you wanted the best for their care

I do hope you have POAs for both. And Dementia diagnoses for both. Especially Grandma. She needs care in an AL or LTC. And if Grandad needs the help you listed, he seems to have some Dementia. Its not what they want anymore, its what they need. With a POA you can place them for their safety. Otherwise, its guardianship and that is expensive. You could use their money.

You may want to talk to a lawyer well versed in Medicaid. Lets say Gma needs to be placed but you feel u can still care for Gpa. He will become the Community Spouse. Their assets split with hers being spent down then applying for Medicaid, He gets to stay in the home and have a car and is given enough money to live on. There's more to this, but this is basic.

Firstly, you sound like such a wonderful carer & advocate for your Grandparents. They are very lucky to have you on their team.

I would suggest getting a needs assessment done to see what care is required compared to what is available. Is it going to be enough? A social worker experienced with geriatrics would be a good resource.

The usual place to start is with home help.

My relative DOES have a few mature aides, who have become like good friends, this is a huge plus. But the negative is this set up requires a lot of management. Set days & times are good but there are many extras needed too, eg extra support for illness, at appointments plus if late/cancellations, fill-ins are required or she goes without. Calls, unmet needs, it's far from perfect.

When dementia is involved, this can be harder - starting with not opening the door to let the aide in. So sometimes this option doesn't even get started.

I've seen success with continuum care places where couples either share a room, or, if the memory issues are becoming too hard, one partner is in a memory care room & the other in an assisted living room. They may meet up for the whole day, or part day. I would support this option for my own folks so they can spend time together but also get a break from each other's needs (especially memory/behavioural issues).

It might be a wonderful opportunity to have frank chat with your Grandparents about what they want, what they value. And what they would sacrifice or compromise on? Is staying together the most important thing? (So together in AL an acceptableoutcome?) Or staying in their own home, even if this is with aides/strangers. Would one want to stay in the home if the other has a health crises & is hospitalized/unable to return home?

Good luck finding the path forward. There may be no *right* path, but roads that change direction as the needs change.

From your profile:
"My two brothers resent them too much to be able to actually help, and instead add great deals of negativity and grief to my life through constant venting of their repressed resentment and other emotion."

First order of business - block these clowns. Don't answer calls. Don't respond to texts or other modes of communication. Since the "...two brothers are unable/unwilling/unfit to help...", there's no point to putting up with anything from them.

I also have 2 brothers. Not as bad as yours. There were different issues, but nevertheless, I moved on to take care of what needed doing without consulting them. I'd either get a lot of flak, abuse or no response (sometimes well after the fact, which wasn't helpful - some decisions need to be made NOW!) It made my life easier to just put them out of my mind and do what mom needed.

It is difficult to figure out, no doubt. And enacting a plan is going to be challenging too.

Having one person (you), providing care for 2 people with lots of needs is just too much. At your young age, you should be able to enjoy life more, not be tied down to this caregiving routine.

As to your dilemma, others asked if you have POAs. If you do, that can be helpful for taking care of finances, signing documents, being involved in medical care, but it WON'T facilitate a move or bringing in aides.

We tried the aide route. The only good thing was the agency sent a nurse to mom's place to do an evaluation. Two of us were there. Being done in her own place with us present made it less threatening. It was paid for by Medicare (including some follow up.) She gave recommendations, one of which was a timed, locked medication dispenser. Aides were started at 1 hr/day, mainly as a sanity check and to check that she took meds. They can't dispense, but they can check and point it out. We also installed cameras, mainly to monitor in/out activity (already got rid of her car.) Mom was in the earlier stages of dementia, but in her mind she was perfectly fine! This is very common, as they aren't really aware of the changes. Repetition was the first real clue (hindsight did show a few minor ones that were missed, mainly accusing others of taking items.) Because I had to facilitate getting food and supplies, it became apparent she was no longer cooking anything (shriveled up veggies, freezer items unused other than microwave dinners, etc.) The plan was to increase time and help as needed.

Sadly, because she convinced herself she was fine, this didn't last 2 months. She refused to let them in. They even sent their "expert" to talk to mom. She's lucky mom wasn't able to throw her out bodily!!

Now, to the issue about getting them to move. Despite what others have said, POAs do NOT give you any authority to make them move or accept care-givers. When the aide plan failed, plan B was to move her to MC. She refused to consider moving anywhere, esp not AL, although that had been in her own plans before dementia. The Elder Law atty told me we CANNOT force her to move, even with POAs. POAs are mainly documents allowing you to help manage financial and medical issues when the person is no longer able to do so. To back this up, staff at mom's facility also said they aren't allowed to force any resident to do something they refuse to do (take medications, get medical care, bathe, etc.) They have to coax the person as best they can to get the resident's compliance/agreement.

Consult with Elder Law atty is advised as a starting point. This situation may require obtaining guardianship, which can allow one to make that awful decision to move them. Of course they will still object, but it gives you the authority, if the courts agree, that this needs to be done.

Meanwhile, see if the agency you used can send a nurse to do the evaluation. What this nurse did was more than a doc office will do (their cognitive test is so minimal it really isn't very useful, esp in the very early stages.) Be there when it is done, to help them - pass it off as a Medicare necessity if you have to! For grandma, with dementia, facilitating compliance can be a bit easier, as you can use little white lies to assuage her anxiety or refusal to work with anyone. It sounds likely that grandpa is also in the early stages of dementia and might be "pliable" as well.

Our attorney told me that we'd need guardianship to move mom, but the place chosen wouldn't accept "committals", so we needed a ruse - she helped a bit by injuring her leg and developing cellulitis. YB used a fake letter from 'Elder Services' that gave her 2 choices: move to the place we choose or they will choose. She was VERY angry, but she went.

Hopefully you've been checking out places (MC.) EL atty can help if Medicaid is needed. While it's nice if one can manage home care, it isn't always possible, despite what some say.

See atty. Ask for nurse eval. Check MC places. Let us know how things are going! Come back if you need other suggestions. Don't feel alone - we hear you!