Refusing care despite advanced needs?

So the people I cared for needed placement. The problem was based on needs one needed a NH while the other needed AL, kind of like your situation. They did not want help and did not want to be separated.

One received Medicaid in home services and was told it was a special program for seniors that they all get to help with cleaning and cooking. The other got a bath aide for an hour 2 days a week through a different program.

So who controls the finances? Can they hire a "maid" service?

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?

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.

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.

Any agency you choose to use should be able to send experienced, mature caregivers. You want someone familiar with elder care and dementia.
My parents and aunt at first were very opposed to someone in their home. We placed a lockbox on the door so the caregivers could come and go.
Give them an option of starting with home care or moving to AL.
In Jacksonville, Fl we used Concierage Care and were very satisfied.

Only you know how serious the situation is...but if you are sure that your parents are endangering their lives by refusing the help they need, and you don’t have POA, you can consult an elder care attorney and file for guardianship. This is a legal proceeding in front of a judge. You will need statements from doctors and social workers, depending on the situation. The courts will rightly be reluctant to grant such a request, so you must be sure of the situation and have everything documented.

If the court decides it’s appropriate to award guardianship, you can take whatever steps you must to ensure their safety. This doesn’t mean trample on their preferences...if they want to be at home, and the support is available, arrange that and pay for it with their money. If they have to go to a nursing home they will have to spend all their savings anyway, so there’s no point trying to save money. Some parents fight this because they want to leave an inheritance, but their own well being is more important. If they can’t be maintained at home, and there is a safe AL option, you will be able to arrange it.

The judge will order regular accounting and updates. You will need to retain your good elder law attorney. The fees for the attorney, home care, etc, can be paid from your parents’ assets but you must keep good records. Be prepared for your parents to contradict you in court and to sound very convincing. Be prepared for siblings to contradict you in court out of fear of losing inheritance or access to your parents’ money. Take many videos and document everything in advance,

This is truly a last resort, and if your parents are able to stay home, and can manage it - even if it seems a low quality of life - that’s their right. They have the right to make their own decisions, but they don’t have the right to demand support from anyone. If one of their lives is really endangered by living without help, it’s time for a hard look.

It might be better to present a few alternatives instead of an open question. “Please agree to AL” is too open ended and too easy to reject. Try “We haven’t been able to find caregivers that meet the standards. Your choices are AL, in which case I will help you find the best place, or take whatever caregivers we can find. Having me continue to be responsible is not an option. Which is it going to be?” Maybe they will come up with something. Maybe you can insist on video check-ins, having them show the med containers, food eaten, etc.

So sorry that you facing battles to get your grandparents more help. From their perspective, any change is a threat. Consistency in their routines and contacts is their security blanket. Anything that challenges that "normal life" is seen as something to avoid. They can not see that you are burning out and that you need more help. You'll need to get a few tasks completed in order to get more help for them, and for you.

Start with a trip to a lawyer with your grandparents that specializes in family law, or better yet elder law. If you can get your grandparents to name you as their advocate for medical power of attorney and financial power of attorney. Make sure that each has a will written. Talk to them about advanced directives (whether to take heroic measures or not) and get a document for this as well for each grandparent. Then, you will be legally covered to act in their best interest.

After you have these legal documents, get your grandparents to their doctor. Sometimes, seniors are more willing to listen to an authority, like the doctor, telling them that there needs to be changes. Write down a list of problems each grandparent has and the resources to meet their challenges (basically that you are the only source of help) Ask the doctor to evaluate each for mental competence. He/She can "order" that this arrangement needs to change. My grandmother needed to hear that my grandfather needed to go to a residential facility rather than caring for him at home. I am fairly positive that the doctor will do the same in your situation.

When one is deemed mentally incompetent, you make invoke the powers of attorney for that person. You can then make arrangements for their care even if they are fearful or argumentative. Getting extra care can take several forms:
home health care aides when you are not there, sitters in the evenings when you need to sleep if grandparents tend to be "up" at night, assisted/senior living apartments that phase to total care when necessary, and full care residential facilities. It seems you are leaning in the direction of residential facilities, especially since your grandmother appears to need memory care placement. Find a place where they can be together and avoid calling it a nursing home.

Most importantly, your Grandparents deserve to live the remaing of their years together in their own home where they feel safe.

Aa far as their thoughts on LTC, they aren't that far off. Sure theur are homes that look pretty and the people overseeing the home tells you exactly what you want to hear to make the sell but then the reality if living there is not fun at all! Usually they are all under staffed, they over medicate if your loved one gives resistance or problems with anything.
Living in them, makes your loved one feel lonely, scared, unloved, bored, they lose all their rights, they have to get up at a certain time, take bath at a certain time which can be very early in the morning because there are only so many aides and they have to go thru so many Seniors to get them all bathed..
eat when their told to, go to bed when their told to.

They can't have any visitors during the Covid.

Many Seniors will actually lose their will to live.

I understand it would be better for you not to have this on your shoulders but not for your Grand Parents.

You should have cameras installed at their home so you can check on them 24 7 with your computer or cell phone.
Order their groceries to be delivered.
Order easy things for them to fix and eat like microwaveable items.
They have breakfast items from Jimmy Dean's Sausage egg on a biscuit, frozzen pan cakes and waffles to cook in a toaster to all kinds of easy good and nutritious frozen dinners that only need heated in the microwave.

There are also easy things like soup and Crackers for a meal.

Easy snacks like Apleasure, Instant Oatmeal, Yogurt, breakfast bars. Ect.
Bup 1/2 gal drinks like milk and juice to make it easier for them to handle or by the individual single drinks.
The deli even has baked beans, potato Salad, baked chicken ect that one can eat.
They can even order out food once a week as a treat.

Besides the cameras being installed, set up bars in their bathroom so they can go to the toilet and take a bath/shower easier.
Hire a cleaning service to come once or every other week.
Bit a few easy clothing for them to wear if they're having problems getting dressed.
Forget all the button up clothes. Go for pull overs a size a little larger than they normally wear to make it easier to put on or clothes that zip or pants that only have elastic waist.
It's not hard to find an older Caregiver if that's what your Grandparents feel more comfortable with, just tell the Service.
You might also check with your Grandparents and see what they think about having a Live In which would require a bedroom for them but that person would take care of the house, meals and look after them.

Please let your Grandparents live their remaining life however they want, even if you think it's not the way you think it should be. After all, It is in fact their life not yours.

I would rather be free snd make my own choices than put somewhere and do what everyone else says to do as that sounds like being in prison to me.

Prayers

"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.

Start asking around for the mature caregiver they say they will allow. Call a few agencies, ask friends, etc. Just get the word out. There are many older people who do in home health care/housekeeping to supplement their income. It's worth a try. Another thing to try is if you find someone a little younger - present the person as someone who is coming to help 'you' to help them. Be there for the first few visits so they see you interacting with the person - also to ensure this person will handle tasks that you explain.
A little daily cleaning and food prep to cover all the meals is a good place to start. Limit personal phone use for the employee while they are on the clock. I can tell you that older people believe in working during the hours you are paid to be on the job - not staring at a phone or sending texts while being static.

If there is a separate room in the house that could be set up as a sitting area for an employee, you might do that. The employee would not be in their face all day, but there to handle tasks that arise. If they can afford 8-10 hours a day - then go for it. Increase hours as need arises and add a couple more people to work out the schedules. If they want to stay home and they have money to pay for the care, it can be managed.

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.

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!

Imho, tour an AL with them. Prayers sent.

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.

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.

Have you considered what happened if you should get sick? What if you get Covid or another serious illness? Perhaps you could develop an plan and review it with them to alert them to that reality? It sounds like you are at risk of exhausting yourself trying to care for 2 elderly people.

If they are having that advanced difficulties I don't think Assisted Living is the answer, I think a long term care facility would be better. They would get 24/7 care,  have meals prepared, given baths, etc.  Now to get them there is another issue.  Maybe you can offer to them say "lets just try this for a week or two because I need to go "out of town" for a job and won't be here to check on you.  Of course you would need to find a place first, check with an Elder attorney to see what all needs to be done financially, then check with a good place and then arrange it for both of them to go there while "you are out of town".......then when you get back, go visit but only after 3 or 4 weeks, time to get them settled in. Then if they question you about coming home, tell them that you are having renovations done to the house and it will be a little bit longer than expected.  Hopefully they will soon forget to ask about coming home after they find others to talk to and maybe get involved in bingo or whatever that particular places has to offer.  some places have movie night, bingo, some have people come in a play music (now of course with the virus thing maybe not many people come in), but they still have TV's etc to keep them busy.  And once their finances run out (make sure the place accepts Medicaid) then Medicaid can be applied for.  Wishing you luck.