I'm looking into an adult day program, but she has never been a "joiner" and hasn't had a social life for about 10-15 years. She sees it as proud independence (now she's 92 and in a wheelchair), but I see it as lonely, stubborn introversion. Anyway, I need to be able to get away of my sanity and to have a semblance of a life. There is going to be so much resistance. In part because the dementia makes her aversion to spending time with anyone but her children worse, while also making her not want to go anywhere or do anything (including hygiene).  She definitely is not up for hanging out with strangers here or in a day program. I feel hopelessly trapped. Any suggestions?

I like the term "so what."

Sure, she doesnt like it. So What. You need your sanity.
Helpful Answer (9)
Reply to Karsten
strugglinson Apr 10, 2024
great answer!
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How many kids don’t want to go to school .Guess what ? They get sent to school. Parents go out on dates or go away on vacations and have a sitter or stay with a grandparent that they may not like.

So your Mom goes to daycare , same thing , or has a stranger while you go away.

It boggles my mind that we tell a kid “ too bad you have to go to school” , but we worry about these elderly being happy.

Mom isn’t going to be happy no matter where she is anymore . She’s already not happy 92 in a wheelchair. Do what you need to do , including having some regular part time help coming in to the home to give you breaks every week , especially if day care doesn’t work out . Use Mom’s money to pay for HER care .

Caregiving is a job , you need breaks just like any other job . Mom won’t understand , but it’s necessary . If you don’t get breaks you could fall ill and she will have nobody .

When/ if you decide you can’t do this , or don’t want to do this anymore , place Mom in a facility . Mom should not be ruling your life. She’s the one that needs help , she has to be the one to compromise.

You feel trapped because you are trapped . The no showering would be it for me. If it was my mother I would place her in a facility permanently . My mother had dementia , also not showering, wanted to control everything and me . Doctor told me Mom needs to be placed in a facility .

The doctor said it very often becomes necessary to place parents with dementia in a facility because it becomes unmanageable at home. The parent still sees you as her child and expects you to be obedient and do things her way. The doctor was more worried about me than my mother . You deserve a better life . If you had any other room mate that made you miserable you would ask them to leave and live somewhere else .

Think about that .
Helpful Answer (6)
Reply to waytomisery
BurntCaregiver Apr 11, 2024

I wish this forum had a 'like' button that could be used more than once because I'd 'like' this comment a thousand times over.
Every word is the God's honest truth too.

There's a very wise caregiver on this forum with a true and famous saying.

~Caregiving only works when it's done on the caregiver's terms. Not the care recipient's.~

LOL. I'm considering having this embroidered on a pillow for the couch in the office.
Oh well. It’s a good thing she doesn’t get a choice in the matter.

You are allowed to take care of you. In fact, it’s necessary and you must do it.
Helpful Answer (5)
Reply to Southernwaver

Let her be as stubborn and resistant about going to the program and having homecare as she wants. Send her anyway and strangers are going to be coming into the house to do for her. The alternative is she goes to a nursing home. Make sure she knows this.

I did homecare for a very long time 25 years. Cases like your mother are very common where they will only "allow" their adult children to care for them as if at that point the choice is still theirs. Anxietynacy is right. This is usually the behavior of the elder who wants to control the lives of their adult children while also making the adult child or children their social life as well.

Let me tell you from long experience. DO NOT cater to her for any reason. DO NOT 'baby' her and DO NOT tolerate any disrespect, stubbornness, gaslighting, or abuse of any kind.

Also, she does not get a choice on whether or not she will shower or be washed up. NO ONE has to tolerate living with nasty, stinky person because they won't "allow" themselves to be washed or changed into clean clothes. The choice on this front is either get compliant with hygiene assistance real quick, or it's off to a nursing home. No exceptions.

Do what you need to do to keep your mind right. That means getting regular respite.
Don't worry about guilt feelings about your mother not enjoying herself. That's not for you to worry over. She will be cared for in daycare and by homecare. Whether or not she likes it or is happy about it is irrelevant. It's what's best for you both.

No one can guilt-trip you if you're unwilling to go on the voyage.
Helpful Answer (5)
Reply to BurntCaregiver

Take respite anyway. Do whatever you need to do. As they advise on airplanes - put your oxygen on first before helping others. Caregivers needs and wants matter too.
Helpful Answer (4)
Reply to golden23

Coddling to her wants is not your life. You didn't cause this and can't fix it.
What sacrifices did Mom make for her parents?
Helpful Answer (3)
Reply to Dawn88

Do what you need to do.

Some parents are never going to be happy. So let them be unhappy while you do whatever is necessary to survive.

Very often our parents will listen to other people far better than they listen to their children.

So sorry that you have endured so much pain and frustration. Caregiving is the hardest job in the world.
Helpful Answer (3)
Reply to NeedHelpWithMom

With dementia, LOs hate all sorts of things that aren't rational. You don't have to explain and re-explain anything to her. I used to tell my Aunt that the aids were there to help *me*, not her. When she starts with any unsavory talk or attitude, distract her, redirect the conversation, ignore her or just walk away. She doesn't get to control things. As others have said the realistic alternative is a facility.

My Aunts were deadset against a companion aid. Guess what? We had her for 35 hrs a week for 6 years straight and they adored her. She still comes to visit my surviving Aunt. Just plow ahead with whatever plan helps you, and you might be surprised.
Helpful Answer (3)
Reply to Geaton777

It wont be pleasant. But you should just do it. You deserve the time off. She will survive
Helpful Answer (2)
Reply to strugglinson
strugglinson Apr 10, 2024
the hard part will be when you are away, trying to not worry about it, and being tempted to call and check in . Try to nnot think about it/ her when away, and be able to truly enjoy the respite time. Set things up so you would only get contacted if a true emergency, and you dont need to call and check in regularly. I'm not the best at following this advice myself, but yet I know its best!
As you say your mom has never been a joiner, how much of that is an excuse to keep you in her life more, and an excuse to control you , your life. Pretty much gaslighting you to keep you taking care of her daily and not get help.

You need the break to be a better caregiver, you deserve the break to take better care of yourself.

Won't be easy at first, you will feel guilt, worry about her, but eventually your going to have to get help , you can't do it all alone, your mom needs to except it, might as well be sooner, than after your seriously burnt out
Helpful Answer (2)
Reply to Anxietynacy

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