What are my rights (if any) as a caregiver?

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What are my rights (if any) as a caregiver?

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Rights vs. responsibilities. I was suddenly and unwillingly thrust into the position of full time (35-40 hrs per week) caregiver to my 91 year old Mom when my dad died of cancer earlier this year. I am disabled with severe depression/bipolar, but I have no siblings or other close relatives to help with Mom's care. At this point, I'm financially, mentally and physically too depleted to go on much longer.

Is it possible to walk away from this? Or are there legal repercussions?

Burnout Family Caregiver New to Caregiving

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Is there money available to get mom placed in a Memory Care Assisted Living residence? Or you can apply for Medicaid to get her placed into a Skilled Nursing Facility for care. To leave her high & dry, with dementia, may indeed have legal consequences, I am not 100% sure. Plus I'm sure that doing so wouldn't leave you feeling very good about yourself and may contribute further to your depression. Why not consult with a Certified Elder Care attorney to discuss what options you have.

My condolences on the loss of your father.

Good luck to you.

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Mom comes from a long-lived family (97-103 years -- and that's the previous generation). There isn't a lot wrong with her physically, but mentally she's severely confused. Her income is in the low side but just high enough to disqualify her for Medicaid. What little savings she has is likely to run out before she dies.

Thanks for the suggestion about the lawyer. It was my thought exactly -- as soon as we get back from Dad's funeral (in 2 weeks), I intended to consult with an Elder Care attorney to see what can be done to protect both of us.

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You do not have to do any more than what you are willing and able to do. There are no legal consequences, especially since you do not live with her. What you need to do is seek assistance from an elder care social worker. A on A like your Dr recommended. Do not think you have to take her home with you, you don't. You can help with placement and eventually with the application for LTC Medicaid. It is possible a state social worker will try to get you take her in with you. Just know that you absolutely do not have to if you are not up to the task.

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I'd think long and hard about taking her to a funeral.

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Yes, I'm honestly dreading it. The funeral is being held out of state in my parent's hometown. It's a 4.5 hour drive from here. I'm going to be a nervous driver, as I'm not aquainted with the roads and mom has now suddenly developed an incontinence problem with makes travel even more difficult for her.

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"Mom is severely paranoid and insists that I be her sole companion"

Mom's wishes for YOU ONLY are rooted in fear.

Her fear is real. But..
But it is not a law that must be obeyed. Nor a moral obligation that must be obeyed.

Her need to control her fear does not overweigh your needs (for health etc).

I would say you don't need to be 100% her hands-on caregiver, or 0% walked completely away. There are many variations inbetween.

1. Find a Social Worker or Area of Aging to help find Mom a new care plan for all that she needs.

2. Work at finding support for yourself & self-care strategies.

Best of luck for the new future.

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KatyKat, this is very much State dependent.

There are countable and non-countable assets.

In terms of income, some States allow Miller/QIT/pooled income trusts to siphon off extra income which goes to the state after. The Medicaid recipient's death. In some states, there are "spend down" provisions.

I recently learned that ALL of my retirement assets are sheltered from Medicaid. Unreal.

Make sure the lawyer is a CELA. Good luck with the funeral.

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I think some of ours are too. We have our girls as beneficiaries on our investments and were told that when the last one passes, all the girls have to do is put in the claim and money is theirs. No Probate.

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Get to the Elder laywer asap. And use your Mom's money for it. The point of medicaid is to spend down her assets so the state will take care of her.
As for the funeral....you have to take care of YOU...if there are folks that wouldn't understand her not being there...ask them to come pick Mom up and drive here there and back. It's the same time and distance if you were to do it.

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Ha, ha. I'd love to tell Mom's family to come and get her themselves. However, I live only a half hour away from her and they are 4.5 hrs away in another state, so no go.

I'm only just beginning to be acquainted with the spend down plan. I don't quite get what all of that entails, so yes, I will be seeking the help of an attorney.

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Absolutely look into taking along a home care aide if you go on the trip. You cannot handle it on your own. I had prepared myself to take my mom by plane to my sister's funeral, but luckily she decided on her own that she was not capable of making the trip and that she'd be too much trouble for me. Yes, people asked why she was not at the funeral, but I just had to say that she was not well enough for the travel. Your mom's hysterics make me think she is also not well enough.

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Neither Mom nor I are well enough to travel. I don't think Mom will accept an aide to travel with, since she's paranoid and insists that I have to do EVERYTHING for her forever. Nevertheless, I'll consider what you say and look into the possibility of getting an aide.

Really, what I'd like to see happen is a valid excuse for both of us to be absent at Dad's funeral (something like Mom's doctor forbidding travel!) that would satisfy everyone. This morning, however, Mom was talking on and on about the funeral and how she's looking forward to seeing her sister and brother. On the one hand, she's very homesick and wants to visit her family; on the other, she's afraid of strange places and people and doesn't like leaving her own home.

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Kat I sure feel for you and the position you're in. I'm seeing in your answers a lot of times where you say you know what's best (shouldn't travel, may not remember even going to the funeral, you may not even be able to get her there and back "in one piece") but then you say some version of how it's not up to you.

It is 100 percent up to you, and her having bombed the cognition testing at the doctors proves it. Her poor brain isn't working. The same way you wouldn't defer to the wishes of a two year old demanding to go skydiving, or someone just out of the hospital with a massive head injury, that's the situation you're in now. Just because she doesn't like your choices or doesn't agree with them doesn't mean you're wrong.

I'm sorry to put more stress on you but you have to be the adult in the relationship with your mom now, she can't do it any more. On the other hand, when you realize you're in charge and don't have to convince her or get her to like your decisions, maybe you can get some peace from the power struggle.

And lastly, if the family expects you to drag a woman suffering from brain disease anywhere, their expectations are dumb and not worth worrying about.

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The family have been difficult to communicate with re. how bad Mom's symptoms are these days. I risk alienating some of them if we don't get to this clambake. However, I'm not the caregiving machine they expect. I'm a fallible human with health/grief issues of my own, none of which I've had time to deal with this year. Consequently I'm not up to driving anyone anywhere on unfamiliar roads right now.

One thought occurs -- even without Mom's PCP forbidding travel, I might just say screw it and walk which leaves Mom without a ride out of state. She would have to arrange transport for herself or the family can suck it up. Naturally, I will never be forgiven by Mom's family. I have to be able to take the heat from both them and her.

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Katy,

Your mother has dementia, freaks out on you all the time, is incontinent, and you're going to drive her 4.5 hours by car to the funeral.
Don't do it. Please don't do it.
My last caregiving job was for a woman who was totally out of it with dementia, wheelchair bound, and incontinent. Her husband passed away. Everyone expected her to be at the funeral service for him and expected me to get her there. I flatly refused. When her shocked friends and family members asked why I wouldn't "help" her I explained plainly. If she craps herself at the funeral home there is nowhere to change her. So she would have to remain sitting in it until she got home. I explained that she didn't remember from one moment to the next that her husband had died and that many people would be overwhelming to her. They understood then.
Explain plainly if anyone asks why your mother couldn't be at the funeral service.

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My mom does remember that Dad's passed, and she feels a need to complete her 72 year relationship with him in this way. I wish all I had to do is drive up and back, however, Mom needs to arrive a day early, to visit the funeral home for a private goodbye before the service, then we have to go to the florist to choose flowers and finally take my Aunt to dinner in exchange for our rooms for the night. The a.m. after the funeral, I'm expected to ferry Mom, Uncle & Uncle's new girlfriend (total stranger to me) the 4.5 hrs back to Mom's house so Uncle can pick thru Dad's tools and clothes and take away whatever he wants, including one of Dad's cars......

It occurs to me, just re-reading this now that I have it written, that these people expect a LOT.

I've told Uncle repeatedly over the past 2 months how badly Mom is doing, and he downplays or ignores what I say. If Mom has an "accident" in the car on the way back, I guess Uncle will get to smell the truth for himself.

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Katy, your mother's brain is broken.

It doesn't matter what she tells you these folks think of you
She's probably projecting.

Do what feels safe and sensible to you, for you AND for your mom.

Tell "the crowd" that you've come down with COVID.

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Ha, ha! Everybody's either had Covid or been vaccinated, so that wouldn't scare them. Interestingly, at Mom's Dr, appt earlier his week, her temp was 100 again. I wonder if she does have a virus...

What are my rights (if any) as a caregiver?

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