Dad (83) has dementia and Parkinson’s. Limited mobility. Mom (79) has been primary caregiver, but recently we have been adding home caregiving to help with ADL’s. Mom adamant about not sending Dad to memory care. Yet she’s getting irritable and weary of caregivers in her home and invading her privacy. I’ve told her she can’t have it both ways. Too much risk of her trying to manage on her own. They have the monetary means for home health. The adjustment is not going well!

Mom can care for dad herself, accept caregivers in home to help him, or place him in managed care. There ARE no other choices. It's like when my dad chronically complained about his disposable briefs being either too small or too big. Sorry dad, there's no size that exists between medium and large, and I cannot create one. Deal with the situation because it cannot be fixed.

Tell mom this situation cannot be fixed, and she doesn't have to be dancing a jig about it. She just has to accept one of the 3 choices and live with it, as we all have crosses to bear in life.
Helpful Answer (17)
Reply to lealonnie1

One suggestion is when a caregiver arrives mom can leave for a while.
Go shopping, have lunch with a friend she has not seen in a while, get her hair done.
A few hours at the Senior Center playing cards or even volunteering there.
It is great to have caregivers come in and help out but part of having that help is to get away from the house.
Does mom have a friend or relative she can go visit for a week? Maybe a week Respite for mom would be a good thing.
Helpful Answer (13)
Reply to Grandma1954

Dad goes to memory care, where he gets professional care. Mom gets her life back. She may be adamant, but she needs to visit some memory care facilities so she'll know what she's refusing. Take her to small ones that have a maximum of 16 residents or so. Let her talk to the manager, the caregivers, and the residents. Take her to larger ones if she is interested in that type of care.

Memory care isn't a torture chamber. The facilities are set up for with an eye to keeping residents happy on their level. The people who dedicate themselves to this care are kind, caring and loving. Mom can visit often. They may pamper her too. Win win.

My brother-in law is in a small home in a residential neighborhood and has been there for years. He loves it. My sister-in-law (no relation to brother-in-law) is in a larger one in another state. Her husband visits every night for dinner and volunteers to lead classes for residents. She likes to garden and they have raised beds so she can do that with assistance. The caregivers give her fancy manicures. The owner's dogs visit often. Both of these relatives were languishing at home and have benefited immeasurably because nobody was "adamant" that they stay at home miserable home.
Helpful Answer (13)
Reply to Fawnby

I could have written this word for word six months ago almost down to the last detail. My dad was 80 with frontotemporal dementia. I had been urging my mom to get an aide for 2-3 years and I even hired a couple whom she fired after one day. By January, he had lost almost 50% of his body weight, could barely walk/crawl and was nearly incontinent. I got him in home hospice. Mom had been caring for him but could not shower/ wash him at all, refused to deal with diapers. Definitely no way she could help him off the floor when he fell. In fact, she would hide in her room when this happened and call me. Despite all this, she kept telling the aides from the hospice to leave and not return and told me there was “nothing for them to do”!! She especially hated having anyone there overnight, said they “creeped down the hall” to the bathroom at 5;00 am and it woke her up. She was OK with the nurse who visited only 2X per week and stayed only about 20-30 minutes.

i tried all the suggestions listed here — telling her when aides arrive, to go to another room, go out, just get used to it, she has no choice between this and residential care, she can’t leave him in his own waste to get bedsores, it was pretty much elder abuse, etc etc.

Eventually it reached a crisis where I insisted he go for a 5-day respite stay because her mental health was terrible, my life was a wreck, she was calling 911 frequently just to get him up off the floor when I was at work and he fell and I knew he was not getting any better. He ended up passing 3-4 days later in early May at the residential hospice place. She got her wish of keeping him at home as long as humanly possible. I was pretty traumatized by some of the things I had to deal with because she couldn’t and wouldn’t let the aides be there. She actually said near the end that she couldn’t believe the hospice would leave her alone with my dad. I replied they have been urging and begging you to have full time aides here for months and you keep getting rid of them!

I have had two friends tell me their parents hated in-home aides for invasion of privacy but they somehow adapted much more easily to residential care. Doesn’t seem logical because it’s more change, but maybe it’s true.

I feel for you deeply — just know you are doing the best you can. It is so hard to know what is best. You don’t want to force them and yet there are really only two options. In home care or some flavor of residential care.

good luck and best wishes!
Helpful Answer (13)
Reply to Suzy23
Beatty Jun 20, 2024
Thankyou for sharing Suzy ❤️Sharing your recent past & what looks like my near future.
I can identify with your mom's feelings. I have a housekeeper who comes twice a month and I can't stay in our apartment while she cleans. I got grocery shopping, to the library, ANYTHING to get out of the way. Having someone around every day would drive me up the wall, I think.

But this is not your problem to fix. It's mom's. If she complains to you, I say, "what are you going to change to make it better, or is this simply something you're going to have to adjust to?"
Helpful Answer (13)
Reply to BarbBrooklyn

Adding to the response by Fawnby..
Is there any chance mom would consider Assisted Living for both of them.
Normally I would not suggest anyone with dementia for AL but with mom there the keep an eye on him it might work.
She would get more help.
Dad could transition to Memory Care. Or spend time there when mom wants to go on an outing or go to an activity.
This might also solve a problem of getting mom help when she need more help rather than relying on you or other family members.
Helpful Answer (10)
Reply to Grandma1954
againx100 Jun 19, 2024
excellent idea
We went through something similar when we started getting in-home caregivers for my husband. The invasion of privacy irritated/stressed me, despite the important benefits of having a competent caregiver.

We tried several different caregivers before we found the right ones for us. The key for us was to find a caregiver who is a natural introvert....quiet....competent....knows what to do and remembers how we like to have things done....friendly but he doesn't try to constantly engage with us with obnoxious "make-nice" chatty conversations unless we initiate a conversation with him ourselves. We've come to enjoy his quiet and helpful presence here.

We do everything we can to make sure he's comfortable working here and we respect his privacy, too.

Good luck finding a competent caregiver who meshes with your household style.
Helpful Answer (10)
Reply to LostinPlace

I think the biggest component in this type of situation is that the caregiver not being able to let go of the mindset of trying to do it all. Resenting the caregiver(s) means to the caregiver that the situation is getting worse coupled with the fact that they themselves are aging and can't get around like they did in the past. Then there is jealousy involved as well. Some people are just plain territorial of their space, possessions and family members. Husband and wife teams are the worst. I had one women who resented me because her husband would be laughing and talking with me. When I first got there, he was doing the total care. The woman was mean and would not communicate; she would bark out orders of what needed to be done, drink beer the entire time during my shift, and watched loud tv shows. The volume would be almost to one hundred. I started turning the tv down in the living room.

I read one comment about home health aides being unemployed losers. They're not. These people are part of a care team with a plan of care that must be carried out during the time spent with the client. Yes, I do understand there are some bad eggs in the batch, but these are far and few in between. The care plan is given and must be charted during each visit. All of this is explained to the patient and the family member during the initial nursing assessment before placing a worker in the home.
Helpful Answer (9)
Reply to Scampie1

Mom goes in another room when Dad needs care ?

The hired caregiver stays in another room until Dad needs something ?

This way Mom stays clear of the caregiver . Does Mom drive so she could leave for a few hours, or even go outside for a walk ?

If Mom doesn’t get used to it then memory care it is. You are right , she can’t have it both ways.

I suspect Mom’s weariness it not just from having strangers in the house. Living with your father’s conditions is most likely causing weariness as well .
Helpful Answer (8)
Reply to waytomisery
Anxietynacy Jun 19, 2024
The first fight with my wife’s brother (DPOA) was over caregivers hours. Money wasn’t an issue so I wanted caregivers six days a week while he only wanted to pay for three days. One of his points was that “you will have people in your house” True, but with only a nonverbal spouse at home having someone there was a huge relief. My wife loves her caregivers and gives them a hug at the end of the day. It has been all good so far- maybe we were just lucky/blessed. Thank God for people who do caregiving!
Helpful Answer (8)
Reply to Rktechone

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