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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!

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Greetings. I feel your pain. Have mom take a break and leave the house. Get a lunch with friends, a massage, a few hours at the library. She does not need to be home. Good Luck!
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LostinPlace Jun 25, 2024
Hi Cheri1,

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,
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I had my daddy in a group home. The bigger memory care did not work for him. In the group home it cost the same, and I was able to come and go as much as possible. The caregivers cared for my dad as if he were their own. Also, I was kept up to date daily (because it was during Covid). If there was a problem I was called even in the middle of the night. He was always looking for me and I had to talk him back to bed several times. The caregivers and this group home was a God send when I needed it most. There could be one close to mom that way she could still have that care giving that dad needs yet have that privacy that she desires. Blessings to you, your mom and your dad cuz these kind of decisions are not easy - no matter what!
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Reply to Ohwow323
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I think you can approach her from the standpoint you are concerned about her well-being. Leave the door open for her to make the decision about when dad needs to go to a facility so she can have relief from caregiving and her privacy back. Is it possible for her to go out while the paid caregivers are there to get a break?
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Reply to GirlsMimi
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Cookster3: Perhaps it's time for managed care facility living for your father.
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Reply to Llamalover47
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She needs a routine schedule- something to help her handle the changes. She should have a set time and set days when caregivers are in the home. She should have areas of the home that are off-limits to caregivers - so she has some privacy to pursue her own activities. It would also be helpful to limit the number of caregivers to just 3ish people - so both parents become comfortable with these caregivers in their home.
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elisny Jun 24, 2024
Well said.

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.
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Quite probably, different spouses at home and different carers may have different expectations and ‘wants’. Some on both sides may prefer ‘sharing’ the house and having company all day, others on one side or the other would prefer to be left on their own. It is quite possible that M is the ‘privacy’ sort, while the carer is the ‘sharer’ kind – and may not understand that sharing is not what is really wanted by M. It might be a good idea to talk to carer about the problem, and ask the carer for their own ideas about how to improve things. Not blame, just different.
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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!
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Reply to Rktechone
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Boundaries
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
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DannyRifkin710 Jun 23, 2024
How did you find your caregivers?
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One possibility might be to make the area for Dad’s care as self contained as possible. Try to avoid M and the carer both using the kitchen. Airfryer? Water barrel with tap, and a second barrel for used water? Commode? The carer could clean it all up as the last task, or M might be OK doing herself. Think about how to keep M’s area more ‘private’.
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Tell her to Move upstairs or make a Place for herself where she can Have some privacy .
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Reply to KNance72
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I'm my 97 year old mother's 24/7 caregiver - she lives with me.

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.
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Reply to southiebella
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Therapy or counseling for Mom.
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?
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If they have the money for home healthcare, maybe your mom and dad can sell their house, go to a nice memory care/independent living facility. There are many options out there. Your mom is not getting any younger. My mom thought she could take care of my dad, but she was also experiencing cognitive issues. There are companion rooms in the assisted living facilities too.
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Reply to Onlychild2024
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I too would be weary of caregivers coming into my home, my space, my privacy.
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.
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Reply to CaringWifeAZ
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You might want to make care at home vs care in a facility a non negotiable issue. You need to remind her that it is not all about focusing on her.
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What privacy are they invading? When we would suggest this to my mom, she’d say the same thing. She wants her privacy. I think the truth of the matter is she wanted to be able to eat pills and sleep whenever she wanted without anybody around to see. She wanted to be able to feed him fast food a couple times a day without anybody seeing it. She didn’t want anybody to know she did not clean her house or spend much time with him. She didn’t want to have to get dressed or put makeup on … and she isn’t the type to let down the facade that she’s put together all the time for anybody - so she couldn’t just not do it.

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.
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Cminor Jun 23, 2024
Your answer hit the nail on the head! It described my mom exactly! And Dad didn’t want them coming either. He’d say, “Call those people and tell them not to come!”
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If your dad does go to a facility; have the caregiver go with him. It is a lonely place with short staff most of the time. Some staff are wonderful and some are not. My mom does best with one/one cueing and her caregivers love on her. She doesn’t get a shower-she gets a spa treatment. She get rubs, lotions, warm compresses on her eyes. Reading to her, talking to her (not on their phone); she listens but is unable to initiate. Mom was without a caregiver and has one now 7 days a week for 4 - 5 hours a day. Big difference in her enjoyment!
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Grandma1954 Jun 23, 2024
This is great but most families can not afford Memory Care or AL AND a caregiver. And many facilities will not allow you to hire "outside" people they have to be through the facility since they have no other way to "vet" them.
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Getting used to caregivers and giving up your privacy is tough. I found that the caregivers that actively interacted with my husband were the best. They watched music documentaries together and listened and discussed the oldies. One liked movies. I could at least read, grocery shop, walk the dog, etc. while someone was company for him. He needed more than me for company and it made him feel special.
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Reply to Windingquilter
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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?"
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Reply to BarbBrooklyn
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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.
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Reply to lealonnie1
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I have told many people the 2 difficult things about being a caregiver for your loved one is
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.
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When I had caregivers to the house I would go to my room, do outdoor chores, etc., take a walk and/or go out. Let them do the work that needs to be done and the caregiver does stuff for themselves.
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Reply to againx100
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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.
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Reply to LostinPlace
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I’d bet mom’s resentment is of the whole situation, her sadness at what’s been lost. Whatever she likes to do, she needs to go do that outside of the home if possible, while caregivers are there. If she likes to read, go read at the library, if she’s social, she makes plans with friends, etc. Insist she leaves at least the area of her husband and give this a chance or face the alternative. Some firm talks with my dad where I made it sound like he had no choice proved very effective (while quietly knowing I had no real power)
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Reply to Daughterof1930
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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!
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Beatty Jun 20, 2024
Thankyou for sharing Suzy ❤️Sharing your recent past & what looks like my near future.
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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 .
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Anxietynacy Jun 19, 2024
Absolutely
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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.
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Reply to Scampie1
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I will second the suggestion to have your mom leave the house while the paid caregivers are there.
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.
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Mjiotti Jun 24, 2024
I too am in the same situation... working full time and not much help, trying to get some help on days I need to sleep or pretty much just take care of myself... my son is so annoyed with me cause I haven't done it
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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.
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Reply to Grandma1954
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againx100 Jun 19, 2024
excellent idea
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When I did caregiving I avoided homes where there was a husband and wife. It gets difficult balancing the family dynamics. I got fired from one job because the husband I took care of called me his wife and his wife his mom. That didn't go so well.
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
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Anxietynacy Jun 19, 2024
When this one lady was starting to transition, I asked her if I could help her into her wheelchair, she said why, I told her because I want to show you something. I got her in her wheelchair, pushed her outside, we watched the most beautiful sunset. She looked up at me and said thank you with tears in her eyes. It was by far one of the most beautiful moments of my life. No one knows I did that, no one knows how much of my heart I have to this women, and how much I cared
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