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!
This assumes that mom has the energy and desire to go somewhere else. If she's as exhausted as many of us long term caregivers are, she might opt for going to a quiet room in the home, closing the door, and taking a nap.
I personally resent and refuse to go along with the suggestion to leave my home when a caregiver shows up. I won't accept feeling driven out of my own home for respite. It takes a lot of energy to go somewhere, even for a walk sometimes,
Don't buy in to the idea that you have to leave your home to get respite. Find a way to make it work while you're home too, if you want,
I also suggest seeing if they can find caregivers from an agency like Seniors Helping Seniors, where family can typically find caregivers with whom they can relate more easily.
are the care staff respecting her boundaries/calling before arriving
Your mother needs to create a specific area where she can have privacy. Ensure she has her own room or corner where she can retreat when needed. This space should be respected by caregivers.
communication is vital
maybe have a word with care staff and see they respect your mothers space and keep out of certain areas
specific times to visit not random
some boundaries need to be set up ?- maybe
Your mother's feelings are valid. valid. valid.
Although I have three sweet, amazing sitters (caregivers) who are dependable and are wonderful with my mother, I am OVER IT.
I have never had to have "strangers" in my home when I'm not there, and it is endlessly irritating to me. But, if I'm going to ever get out, I have to tolerate it.
Same for your mother, unfortunately. It's just the nature of the beast.
She either learns to tolerate having caregivers in her home or as you say, she may have to send your Dad to MC.
Peace.
Limit hours of caregivers at the beginning, i.e. 4 hours a day or 6 hours a day. We had caregivers come in 11-6:30 M-F at the start.
Mom leaves house when caregivers come in. Mom gets hair done, goes grocery shopping, sees friends etc.
Can you send Mom off on a cruise for a week to get her a break?
It's ok for her to be irritated with the situation. Not every discomfort is a problem to be solved.
However, you can encourage her to get out of the house more, when caregivers are present. Offer to take her to lunch, or to get her hair done, do something she would enjoy.
It is an adjustment having outsiders coming into your private home regularly. And as you already know, she could opt to place him in a memory care facility, where she can go and visit as much as she would like. She is probably not ready to let go. My body is breaking down trying to take care of my husband, but I can't stand the thought of being alone in our home without him.
One thought - Is there a Memory Care/Assisted Living option where they could move into an independent apartment or room together? She could be with him and get assistance as needed from aides, who are always on site and available, but not in her personal living space for hours at a time.
if you can find out what privacy, exactly, they’d be invading you might be able to talk her through it. They are being paid to show up and tend to her husband. She’s not excepted to help them do their job. They’d most likely prefer she didn’t try and help since she’d be in the way.
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?"
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.
1. Asking for help
2. Accepting help.
We all want to be able to do everything. And maybe asking and accepting help is seen as a sign of failure or weakness.
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.
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!
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 .
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.
There are so many things she can do while the caregivers are there, like go shopping, go to lunch with friends, volunteer, take a walk, go to the gym, go to one of the many activities that her senior center offers and on and on.
That can be your moms time to do what she wants to do and rejuvenate her body and soul.
I would just give it some time and let your mom figure things out, although you may want to suggest some of the things on here to her.
Best wishes.
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.
I found there healthier client was very annoyed at having us get closer to the one we were talking care of , which really makes sense looking back now.
They wanted to be the ones do the work, but they couldn't and resented us caregivers
Maybe ask them to give your mom and dad more space. Like not be with them and sit and do paper work or something in another room. Or better yet ask them to dust a room there not in. Maybe explain it to them.
I had one client that really didn't want us sitting and chatting with her all day. She sat in her sitting room watched CNN and we where suppose to sit in another room and just be there if she needed us. There was money in this family, and nothing to do they had a house cleaner.
If you could just think of a way to explain it to the caregivers. To give your mom some space and not be intrusive
Best of luck, this is hard