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?
You are allowed to take care of you. In fact, it’s necessary and you must do it.
Sure, she doesnt like it. So What. You need your sanity.
Whether she hates it or not, someone has to stay with her. Try to find someone who has similar interests to her. But you know what? If mom isn't friendly, it doesn't matter. Stranger can sit in the room with her and just stay quiet. Tell mom what's going to happen, YOU ARE GOING, tell mom she can be friendly or not. Let her sit and stew. All that matters is that the stranger is there and can call 911 if mom falls.
You might tell mom what happened to my friend. Friend was bedbound due to a lifetime of smoking. She was on oxygen. No one was in the house when it caught fire. My beautiful friend died that day. She didn't have a chance.
What sacrifices did Mom make for her parents?
An introvert type person can be quite different in their own home to when out.
Compare:
Going to a new location. Pressure to join in, to smile & be friendly with a group of strangers. Exhausting or fun depending on your personality.
Being in your own home. Knowing where everything is. In-built manners come out to 'host' the 'guest'. One to one conversation.
Some aides will work better than others. From quiet & calm TV watchers to louder, fun card players.
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.
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
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.
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.
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 .
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.