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trapp3d Asked December 2012

Is caregiving a life sentence?

I don't want to be a caregiver to my mother (moderate stage Dementia).

She cannot take care of herself, let alone my dog, the house, bills, etc. I do it because I want to take care of my dog, that I gave to my dad as a companion years ago while he was taking care of my mother and her slipping, mental condition. He passed away this July, and there's no one else to take care of her...so I am....

She won't move anywhere.
She doesn't want strangers in the house.
She doesn't go anywhere - got into a car accident ~10 yrs ago, so my dad wouldn't let her drive after that. She refuses to take the Call A Ride bus that services elderly to go places.
She goes to bed around 1am and gets up around 1pm.
When she's awake, she's mostly selfish, mean, narcissistic.
She sundowns badly. I am immune to any of my own feelings of grief, when she asks who her husband was, did he die, if he was my father, etc.
She won't go shopping, doesn't cook, doesn't know how to use a microwave etc.

I'm lost. I don't want to give up my life to take care of her. There are beautiful ALFs in my area, and she won't even go INSIDE when I take her.

Is this truly a life sentence? Has anyone successfully gotten out of it? The longer it goes on, the more people think I'm going to do it forever, when the truth is I didn't know where to begin when I started doing it, arranged my life around it thinking it could work itself out, and it isn't. People assume I'm going to do this forever and I'd sooner not live at all than live doing this.

trapp3d Dec 2012
Thank you all. I have been shadowing my dad's care, but when she put up a fight if he tried to change the way they lived, he always let her win. As the daughter, I feel I have no way to win. But, if I always let her win, I will always roll back downhill. Her doctor of 20 yrs stands by the wayside, but didn't really help establish what her needs will be, though agreed with me that an AL would be perfect. I think I'm looking for a single magic rock to find the answers under, and know it doesn't exist. I'll check for state/local resources. My fear is getting small bandaids when I want my time invested in finding that long term fix and balance of happiness for her, me (and the judgmental familial onlookers). I love my dog, but she gives my mom too much happiness to strip her away. That would be too cruel, even though I secretly wonder if it might be the Achilles heel to get Mom to move. If I find something that works, I'll let you all know. I'll stop wallowing in my anger about it, and put the energy to getting it all straightened out!

msdaizy Dec 2012
I'm sorry about your situation. We all have similar events with our caregiving experiences. My mom was so sweet when I brought her home with me..and has declined badly with dementia. My only hope is that we all do not suffer long. Because it's definitely suffering for the caregiver as well as the one we are caring. Mom can be such an angel to anyone that comes into the home, but as for the rest of us here. We are the enemy. She doesn't even know who we are anymore. She has to be medicated to sleep at night but even under medication she still tries to get out of bed. I am up all night long going up and downstairs to try and get her to stay in bed. She is 91 and refuses to use the bedside comode. Most of the time we make the long trek to the bathroom and she hardly has to go. I am at the end of my rope here too. I love the mom I knew..but she is not here. Dementia changes the brain chemicals. Find out some Gov programs in your area for help. She might qualify for extra in home care. You can google Aging Care or help with Aging and disabled. They should list some Agencies in your County or City. We have Respite coming to us here according to my mom's income level. We qualify for 20 hours of a homecare worker to sit with mom while I get out or even stay in to sleep. Plus they are helping us with supplies that we need for mom's care.
Don't ever feel guilty if you cannot do it any longer. I have that feeling daily. But if it weren't for the people of Hospice here with me, I would have given up a long time ago. Good luck and God Bless.

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JessieBelle Dec 2012
Sounds like you are having a very bad time, trapp3d. What you describe for your mother is what many people go through. They only want one person to do everything for them. And it does get to be too much. It is difficult to live life for two people, especially when one of the people consumes most of the time.

As long as you are helping her, she won't need to change. You'll have to decide how much you can do, then bring in a social worker to help you figure out how to best meet your mother's needs. Your idea of AL sounds like the best one to me. Your mother probably feels she doesn't need it, since she already has AL with you as the assistant.

Please let us know how it goes. It does sound like you need to set her up in a place and reclaim your life. Chances are good that after she has been in AL for a while, your mother could actually enjoy it.

jeannegibbs Dec 2012
trapp3d, if it is a life sentence it is self-imposed. You got yourself into this situation and you can get yourself out.

It sounds like your mother cannot live alone. I don't know if she needs 24/7 supervision at this point but with dementia that usually happens sooner or later. If that is what she has to have and she is no longer able to make rational decisions herself, then that is what will have to be arranged for her whether she likes it or not.

You got into this for the sake of the dog. Can you simply take the dog to live with you?

Would your mother's doctor specify that she needs care and that she is not competent to make decisions herself?

If your mother has been narcissistic your whole life I can understand why you don't want to take care of her and why this feels like a life sentence. I can also understand (through other posts I've read) that you have been indoctrinated to think you are responsible for her. There are many posts here about narcissistic parents. You might find hope and strength from reading some.

Again, this is only a life sentence if you allow it to be. One way or another there are ways to disassociate yourself from responsibility for her day-to-day care. First, would her doctor consider her incompetent? From there people can give you specific suggestions about how to proceed.

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