Hi Everyone,

A quick question. I've been caretaking my grandparents for about 4 years solid now and they are getting to the point where they need assisted living.

One has advanced dementia (asking the same question multiple times in a conversation, repeating same conversation multiple times a day), and is forgetting to bathe and take medication frequently, etc. The other can't cook for himself and will skip meals unless I'm there to provide them, and is often in need of assistance with dressing and other small tasks. Neither can drive, or leave the house without assistance.

I have tried twice to get an in-home caretaker and they have had meltdowns and tantrums each time, prompting me to placate and put an abrupt end to the arrangements in hope of finding another solution. I can't.

They need all of what assisted living provides, and they can afford it.

How can I get them to jump over this hurdle willingly and peacefully? And if not, perhaps more forcefully?

It's at a point far exceeding my ability to provide for or meet even some of their basic needs, let alone advanced ones.

They are terrified of outsiders, 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'm 34, the only family member involved, and it's just not possible. Parents have passed, two brothers are unable/unwilling/unfit to help (mental illness, substance abuse, identity theft).

I have navigated this whole thing really well, and have much awareness about all the nuances and facets of LTC leading up to this point but, man, am I struggling to figure this out...

One thing they have requested multiple times is to find a mature caregiver with life experience (not a timid younger person) as they would feel more comfortable with that. It's been difficult to always ensure that with home health providers. Not sure how I could accomplish this in the interim between living at home and moving to a dedicated LTC home.

I know it's more than one question,, but any creative thoughts would be greatly welcome!

Thank you😊🙏

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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?
Helpful Answer (6)
Reply to Grandma1954
jacobsonbob Jan 11, 2021
"I'm 34, the only family member involved, and it's just not possible. Parents have passed, two brothers are unable/unwilling/unfit to help (mental illness, substance abuse, identity theft)."

Apparently, there are no other family members suitable or available to help OP "willpower".
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.
Helpful Answer (6)
Reply to Mysteryshopper
Beatty Jan 7, 2021
Ah the *Show-timing*.

My relative still gets away with this a lot too. A mixture of denial & lack of insight.

'I do all my own shopping & cooking myself'. A nurse will buy that over a quick chat but more thorough needs assessment questioning revealed 'shopping' actually meant just eating the food 😆. Family actually shopped, paid & put away the groceries. 'Cooking' was actually a toasted sandwich & microwave reheats.

Her situation was relabeled 'indepenant' to 'dependant' very quickly.
"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.
Helpful Answer (5)
Reply to ExhaustedPiper
Frances73 Jan 14, 2021
My Mom called all care facilities "the Poor House" until she had a respite stay in an AL after a surgery. After that she was willing to move into one and enjoyed the company of both staff and other residents.
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.
Helpful Answer (5)
Reply to Beatty

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
Helpful Answer (4)
Reply to Daughterof1930

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.
Helpful Answer (4)
Reply to JoAnn29

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.
Helpful Answer (4)
Reply to Beatty

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.
Helpful Answer (4)
Reply to disgustedtoo

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.
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Reply to againx100

If you are hiring caregivers through an agency (as the interim solution), you can talk with the agency about sending a caregiver/caregivers who are mature adults. That's not an unreasonable request; it just might take some time to fulfill. Also, since you normally cannot have someone for more than 40 hr/week, and usually fewer, and since the caregiver will have other clients, you probably won't be able to suddenly get different caregivers who will all meet their requirements. Your grandparents are thus probably going to have some caregivers who do not meet all their requirements! As others have written, they will have to meet you half-way, and you will have to be insistent. Let the agency know that your grandparents are resisting care. Normally, with a good agency, the agency will send a nurse to do an evaluation before finding caregivers for your grandparents, so he/she will get an idea of what is needed. Although people usually argue about independent vs, agency caregivers, one of the benefits of an agency isn't usually discussed: the agency will have made a professional evaluation of its clients and will try to fit the caregivers to the clients. It's not a perfect system, but it's better than hiring a caregiver privately when the main thing you know is that the caregiver did a good job for someone you know.
Helpful Answer (3)
Reply to caroli1
Frances73 Jan 14, 2021
True, the agency we hired to help with my Dad seemed to change caregivers weekly. A few they liked, one they asked to not come back, one was nearly as old as my parents!
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