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How do I tell "everyone" I can't do this anymore?



"Everyone" is insisting that Dad stay at home because that's what he wants (true) and nursing homes suck (also true as far as I've seen).



I believe Dad really belongs in a care facility due to both cognitive issues and personal care needs. TCU recommended 24/7 care.



I'm daughter taking care of Dad and sincerely held religious beliefs of both of us teach that me seeing Dad's private parts is a sin. Dad can no longer bathe, toilet, or dress without help.



I've lived here over 5 years unpaid, caring for both parents, and now only Dad because Mom is dead.



Dad's a narcissist and expects everyone will take care of him forever, and the rest of the family just assumes I'll continue being the family slave.



Caregiving has destroyed my physical, mental, and emotional health, my finances, and relationships with family.



Even if Dad gets max caregiving hours from the VA, it's not nearly enough, and Dad can't afford other than VA-paid nursing home because it would be free to him. Or Medicaid/Medical Waiver at a nursing home (maybe, since the state already has a lien on the house because of Mom's care.



I have no job (quit a $60K to take care of Dad), no place to live except taking care of Dad in his house, and while caregiving haven't been able to add to my Social Security, build equity anywhere, savings.

“Caregiving has destroyed my physical, mental, and emotional health, my finances, and relationships with family.”

Caregiving needs to work for both parties, and it is no longer working for you.

Who are these family members who are pressuring you? (Besides your dad, who doesn’t have the right to demand you give up your life and enslave yourself.)
Helpful Answer (8)
Reply to SnoopyLove
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You are not alone when you say it has destroyed you physically, mentally and emotionally. I can honestly tell you my situation is very similar, and I know how it feels. The feeling of being trapped is at times overwhelming and for me the feeling of guilt for just thinking or wanting change also weighs heavy on me at times.

I dread thinking of the future because I can't seem to see a smooth or positive outcome. Some hard lessons being learnt especially with family. I have found coming here has helped me. I hope it does the same for you.

Thankyou for your post.
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Reply to Daniel77
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Hi there. That's a worthy goal: to stop *feeling* like a slave. Let's add stop *being* a slave too.

Time for some changes, yes?

1. "Dad's .. expects everyone"
2. "rest of the family just assumes"
3. "I have no job"
4. "no place to live" 

I think some honest communication is needed.

This can be hard - but rewarding!
Some have been trained by family to be 'the helper' the 'yes' person. Being assertive is a skill that can be learned.

1. Tell Dad your truth. You cannot do it all.
He got old.
He needs more help than you.
He will need to accept other help.
2. Explain same to rest of family.
3. Start looking for a job.
4. Start looking for a new place to live.

Tough Love may be needed.

To hire the help, to explain the help is there for HIM & for YOU.
To explain to Dad he does have a choice: to ACCEPT this extra help or DO WITHOUT HELP.

Then determination to gain a job, to save up & find a new place to live (maybe nearby) & move there.

Final words, this path has been trodden by many. Don't get eaten up by regrets or resentment.
Use your energy towards positive CHANGES.
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Reply to Beatty
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Zxcvby Nov 7, 2023
Thank you.

Dad accepts help provided by a friend, but it's too much to expect a friend to do the bathing, foley care, toileting, and dressing every morning as has been done, or AFAIC, more than only an emergency fill-in for paid help. There's no one to help with this in the evenings or before bed.

Dad also readily accepts the few hours we get from the VA.

Aside from my stress, exhaustion, and burn-out, the issue is he doesn't want to go to a care facility. After about 10 days, he wasn't happy with rehab at TCU after he got out of the hospital. PT was OK, but OT didn't help much, if any, with toileting or a hand tremor that is now a lot worse (and making eating very difficult).
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It’s so hard. I cared for my mom for 14 years in my home.

There comes a time when it’s too difficult to continue. So, you have to be honest and tell your dad that you are done.

Look at it this way. You deserve to live your own life. It doesn’t mean that you are heartless.

Your dad sounds like he is a miserable man with or without you, right? So, let him be miserable without you.

Not every VA home is bad. I know people who have toured VA homes that were a bit further away from their homes but they liked the facility better. So go ahead and tour more than one place.

What about Medicaid? Have you researched the possibility of him receiving that?

Or a board and care home? They are more affordable?

Best wishes to you.
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Reply to NeedHelpWithMom
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*Everyone" including dad can think whatever they want.

No one can force you to provide care for your father.

1. Dad needs care
2. Dad wants to remain at home

Unless you are willing to be a slave to his wants and ignore your need for future financial security (not to mention mental and physical health) 1 and 2 may not be possible.

Saying "no" to your parent isn't easy. Been there, done that.

You should seek the advice of an elder law attorney who understands VA and Medicaid benefits.

You should start looking for a better nursing facility.

Baby steps. One at a time.

(((Hugs))).
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Reply to BarbBrooklyn
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You stop feeling like a slave and being trapped by making the decision to STOP being a slave and feeling trapped.

If "everyone" is insisting that dad stay home, then "everyone" can come CARE for dad at home because you officially resign your post.

Dad "wants" to stay home, regardless of the burden it's placing on you, and I "want" to win the lottery. Wants and needs are two different matters. His needs require him to be placed in Skilled Nursing care. His wants are irrelevant after 5 years of indentured servitude from you.

Go rent a room somewhere and get a job, you have to start somewhere.

Good luck to you.
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Reply to lealonnie1
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You don’t need permission from anyone to stop being a slave . You tell your father that his needs are more extensive than you are able to take care of . You also need to start earning money again. You tell the others to go pound sand or you tell them nothing .

Get an eldercare lawyer, to see what is best . Whether it would be to start the Medicaid process or find a VA facility . See what the options are available to help you out as well , for example to stay in the house until you get back on your feet with a job etc. I’m so sorry that this has ruined your financials as well as your mental health . It will take some time , but you have to put yourself first now , you are an empty tank. Your father will just have to go live somewhere else where his needs can be met.

Perhaps enlist a social worker as well to see how they can help you get back on your feet , maybe they can point you in the direction for free counseling . Perhaps seek support from your church clergy .

I wish you better days , but that really depends on you getting out of hands on caregiving.
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Reply to waytomisery
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Couldn't care less about your religion and their opinions about your father's private parts. Perhaps you come to a faith that would allow you to let your elder die if gangrene was located near his or her genitalia? Sad, that. I would explore other faiths, other gods.
There are SO very many to choose from.

I do care about your Dad's abusive behavior (guess he isn't following his faith very well or that it recommends said behavior.) Therefore, will tell you how you tell "everyone" what's going to happen. That's an easy one. I recommend a letter:

"Hi everyone:
Having to let you know I won't be living with Dad anymore nor giving him further care as of (here you insert the date). I have done this unpaid for 5 years and now it's time for my own JOB, my own HOME, my own FAMILY.

I hope one of you, everyone, will want to take over. If not, I would call APS and tell them that Dad can't care for himself any more, and you aren't willing to do it. Suggest to them that Dad become a ward of the state, with the guardianship of same.

I know that you will wish me well, as I wish you and Dad well alike.
Love, Zxc
PS. The postal service has my forwarding address. Dad's records from my time giving him care is in a file on the kitchen table. (((hugs))))"

I think that should do it.
I would ask you to remember that many people never have children. They don't have the care of anyone save the "family" and friendships they make by their good works and the love they have shared with others. There are Fiduciaries hired by the courts to manage the care of said people when they have no loved ones, or when the loved ones decide that quite honestly there IS no love there.

Good luck OP. I wish you well. I hope you have a piggy bank bursting with some saved funds; otherwise you will need to start at a homeless shelter, which is where so many of our questioners end up upon the death of these elders.
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Reply to AlvaDeer
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NeedHelpWithMom Nov 8, 2023
Thanks so much for this posting, Alva.

I wholeheartedly agree with your point of view on religion. There are many different forms of spiritual beliefs.

I certainly wouldn’t want to be a part of any religion that wasn’t going to serve my needs well.

I am reminded of what AA teaches. They believe that a belief in a higher power can be anything that works for that individual.

So many people are misled by believing in a religion that doesn’t have their best interests at heart. Honestly, some religions are more like cults than being a source of support.

People are quite capable of making wise decisions with or without having faith in a specific religion.
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Because you are taking care of Dad in his house (which is already subject to a lien for Medicaid), my understanding is that you may have a right to stay living in the house if he dies or goes into a care facility. It would be good if someone more knowledgeable about Medicaid could explain whether this is correct. If so, it might change your view of your options for the future.
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Reply to MargaretMcKen
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