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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If she isn’t on Medicaid I would recommend you try to get in touch with social services and see what your best options are being able to get some in home care (because unless she is in ltc there’s no services out there for 24/7 care in home) I really don’t know what they can do to you legally if you don’t have poa but I know if the state would find that she is being neglected they will remove her from the home and possibly charge you with neglect

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My dad's only been dead since January and isn't even buried. I haven't had time to grieve, barely enough time to get Mom to the Dr a couple of times for an evaluation. I've been putting in anywhere from 40 to 80 hrs per week at Mom's house, so I hope they can't find reason for neglect. She's washed up and dressed every day, has clean clothes, the house is clean and the pantry and fridge are well stocked. I sort the mail and pay her bills immediately. I drive her to all of her appointments. I don't know what else I can do. If all of that equals neglect, I give up on my life.

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1) No gifting
If uncle takes the car, unless he plans to buy it at fair market value, then it will have to be dealt with when mom files for Medicaid.
That will result in a delay in eligibility or a need for “someone” (can’t be mom’s funds), to deposit the value of the car in moms account and then be spent on moms care. A clear paper path is needed here. Cars have vin numbers that are traced. It’s not like picking out a few tools from the basement. The timing is wrong (needs to have been over 5 yrs ago) as mom is very near time to file for help, so her attorney can’t argue that she had no idea she would be needing Medicaid. There must be an arguable reason why your mom didn’t sell an asset for her own care instead of gifting it and then expecting tax payers to foot the bill of her care. Same goes for other cars your mother may own. Only one car is exempt from Medicaid. Now maybe Uncle is planning to pay fair market value. Ok, only if he is paying FMV, would I be a party to the car business and then at a later date after you have buried your father and had time to get your mom home and rest for yourself.
Perhaps one of his own children could drive him down and assist with the car transfer etc if uncle still wants to buy the car. That shouldn’t be on you and mom to facilitate. You can sell the car at FMV to someone else. I went to DMV with vin#, LO State ID/DL and got the FMV printed out. That’s just what I did. I’m sure there are other ways. Used cars are a hot commodity right now.

Might be moms house but mom doesn’t know the issues at hand.

2) Manage your health.
Your depression and being bipolar are not to be ignored. Many with those issues can’t function with daily life, much less having the care of 1-3 elders on a road trip after their fathers funeral. Someone needs to be helping you, not the other way around. But I know I would have a difficult time dealing with not going so you have to give both sides due consideration as it relates to your health. Your health is important for you AND mom. Get her placed ASAP and pace yourself. You have already been on a three month marathon.

3) Hire the attorney now
Find the best qualified (CELA level) elder attorney in your area and make an appointment. The best are not always readily available. So don’t wait to make the appointment. The sooner you know the dos and dont’s, the better. If Medicaid is on the horizon moms assets are already affected so act accordingly.

4) Pack a Poop bag.
Have gloves, wipes, spray bottle, small garbage bags, pull ups, changes of clothes along with a transport wheelchair in car at all times. Hopefully you never need them.

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1) Nothing I can do about the car. It's a done deal as far as Mom and Uncle are concerned and nothing I say will persuade them now. Mom wants Uncle to have this car and she is not capable of understanding anything about Medicaid. We will just have to suck it up.

2) I think, as of today, Mom and I have an offer for a ride to the funeral and back. This will be a big relief, financially and otherwise for both of us. I'm so tired and beyond discouraged these days that literally, I'm falling asleep at the wheel.

3) Yes, hiring an attorney is a must, and will take priority.

4) We have everything but the wheelchair (Mom can walk with a cane or walker) all ready to go.

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Get your mother cared for by others. It is usually easier to get her placed when she is hospitalized. You should not care for others if you have great difficulty caring for yourself.

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I agree that I shouldn't be the one doing this. I guess I'm putting up with it, because of Mom's (and Dad's wishes). Dad's last wish was to die at home -- that meant 12 hour shifts for Mom and me, while washing & shaving him, spoon feeding and cleaning bloody diarrhea etc off the kitchen countertops, floor and bedding.

I haven't recovered yet from the 19 hrs per day of caregiving from Dad's final days. Mom doesn't want to lose control of her house and finances or accept help from anyone else. She's extremely paranoid.

At some point though, I realise I am going to have to step aside and let whatever happens with others caring for Mom. Knowing Mom, it's likely to be bad.

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Seriously Katy. Don't take your mother on the 4.5 hour drive to the funeral with an overnight stay at your aunt's house. Let her incontinence be what stops you.
I've been an in-home caregiver for almost 25 years. I know every possible situation and scenario that can happen with an elder.
On your long drive, she will probably piss herself. You will be able to clean her up well enough in a gas station or rest area bathroom. Not if she craps herself though and a long car ride will often do it for that. Trust me on this one because I had it happen with an elderly client. The first time was the last time because I learned. Long car rides are an absolute NO-NO now. I found other activities my incontinent client could still do. One was adult day care. Another was bingo at the senior center. These places were a local five-minute drive from her house. If incontinence happened and it often did, they are equipped and staffed with people who can help handle it.
Explain this to your family and tell them there will be a memorial service in your town with your mother if any of them want to come.

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So far, Mom's incontinence problems have been intermittent (about twice per month), so we may be lucky. Anyway, she informed me this a.m. that she called my Uncle last night and arranged to have him come and pick both of us up and take us to the funeral and back (!) Uncle insists to me that there's nothing wrong with Mom. My opinion is entirely irrelevant to him.

It may all work out. I'll continue hoping for the best, while preparing for the worst (Depends panties, lots of wipes etc.)

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Where does Uncle live? In the town you are currently in or the town you are visiting? If you are expected to ferry Uncle and his new girlfriend back to your town, doesn't this mean that they are expecting you to ferry him back to where he lives?

Where is he going to live when he is "digging" through Dad's stuff? I can tell you that one day was not enough time for me to go through my stuff. My neighbor has been waiting over 10 years for a certain stepson to go through the rest of her husband's stuff. He started and then ran out of time and said he would be back. He has been back, but never finished the task of going through his Dad's stuff.

On the other hand, I hope the girlfriend is a living, breathing, responsible person. If not, you not only have your Mom to deal with, but your Uncle and his girlfriend. Being optimistic, she could be part of the divine intervention...

No wonder you are stressed. Be the responsible adult and do only what you are capable of doing, no more and no less. Don't underestimate yourself, however, don't overstretch either. Set those boundaries....and with the Uncle too because it sounds like there is another potential area of future stress.

You can make these difficult decisions. Please take care of your health. You can be a responsible adult. You are proving it day after day by being with your Mom until you can hand her over to another set of capable hands. Your Mom is counting on you to help her through this traumatic time. You can make the difficult decisions for both of you.

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Uncle lives in a town near the cemetery where the burial will be. In fact, he's the director of the cemetery association, since the land was originally his dad's. His idea was to ride back with Mom and me the day after the funeral, sort thru the garage and basement really quick that afternoon, and then drive back the same day in one of Dad's old cars. Mom insists that it has to be done this way. It's her house, so I'm just going to stand aside... I'm thinking this will be a hectic end to a hectic 4 days.

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I think I would get out pen & paper here. Write *Expectations* in one column & *Experience* in the other.

Note down what you, your Mother, all the rest of the family *expect* & compare this to your lived experience of Mother's current state of physical & mental abilities.

When I was asked to take a relative for 2hr each way day trip - I mentally tallied this up.
Expectations: a lovely day trip.
Experience: mobility problems getting in/out cars, up steps, in/out chairs. Continence issues (double), frequency + leaks + inability to self-care, change garments. Resulting in possible stops every 30mins, requiring finding an assessable bathroom, potential mess, loss of dignity, embarrassment + one helova carer burden.

Zoom. Video call. Whatever type you like. But that visit needed to be done virtually.

Now a nice day trip to see family is very different from the closure of a spouse's funeral. The stakes are way bigger in the 'wish I could vs I will regret not trying'.

If you decide you MUST go, add in every safety & convenience feature you can.
Name labels & phone number in her jacket (if wander risk), MANY changes of clothes & unders + clean up kits (in car, luggage, handbag), food & drinks. And a Plan B. A way to Zoom/Video into the service if you do get waylaid.

It could be the best or worst thing you ever do. Maybe both! Best of luck.

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KatyKat: It is imperative that you take care of yourself, else your health wanes even further. Prayers sent.

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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...

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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, why do you care so much what these folks think?

Are you beholden to them in any way?

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No, I hardly know them. If I didn't have to hear what Mom says re. what they think of me for the rest of my life, I doubt it would matter what they say.

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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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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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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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Ugh! I'm glad you still had some energy in reserves to post here.

Do you have a mental health therapist who can help you? Is there a support group besides this one, that might be able to provide assistance?

Getting your Mom help does NOT have to come from relatives. It could come from church, friends of a friend, divine intervention. Having all this responsibility thrust upon you with no warning would make anyone go off the deep end.

I'm proud of you that you care enough to come to her aid. I'm proud of you that you are still strong enough and have high enough morals to turn her over to capable resources when you, yourself are feeling like you want to give up. That speaks a lot for the type of character you are. I'm not suggesting that you continue this indefinitely. I'm trying to say you are doing a terrific job. Don't walk away....just transition her to another set of resources where you are not the primary. That is NOT walking away. That is being a responsible human being. That is being a responsible family member.

Regarding your mother, easy for me to say as I am not you. Could she be afraid of this funeral, and also afraid of what would happen if she didn't do the funeral? She already has said she dreads this trip. Can you creatively come up with a solution so that both of you don't have to do the trip? I like one of the suggestions of a small gathering where you live. However, a gathering might be too much for your Mom. All she might want is some assurance that your Dad was buried and not all the activities that go with it. If that is the case, have someone take his ashes and bury him and take a picture....and then take another picture once the headstone is in place.

When your Mom is in a "decent" frame of mind, ask her what she would like. Funerals are really for the people who are left behind, not the person who died. Find something that will satisfy both of you, reduce the fears, and let your lives continue. (if you and she don't want to do the 4.5 car ride, then don't do it). She might be looking at you for the final decision. Since your Dad had cancer, she and your Dad may have already talked about what they wanted to do to honor his life. Respect that.

Good luck. Hang in there.

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I'll be seeking a geriatric psych specialist for mom and a counselor or psychologist for myself as soon as we get back from the funeral. I took Mom to her PCP on Monday where she completely failed the Alzheimers/SD test. The PCP mentioned a possible referral to a specialist, plus getting a social worker into Mom's house to assess her needs etc.

I only wish Mom had contacts outside of family. Her network of church and friends has shrunk to literally nothing over the past 5 years -- she outlived everyone else. Currently, she is too paranoid to accept outside help. She's incable of understanding why I can't do everything and be there 24/7.

The "funeral" is actually going to be a grave site burial service with only about 15 people present, dinner to be held at my aunt's condo afterwards. People could certainly take photos and send them to Mom, if she wasn't able to attend. Knowing my family, they'd never recover from the shock if Mom and I weren't there however...

Mom told me the day after Dad passed that they never once spoke about death or dying over the 70 years of their marriage (!) Imagine that. The only thing we know about Dad's wishes is from when I asked (due to Covid) what he would like us to do in the event of his passing while Covid restrictions are in place, making out of state travel difficult. Dad just replied that we should do something simple with no church service. So...that's all I have to go on.

The funeral home called me last night asking what kind of flowers Mom wants at the graveside. There is no longer any good time to ask Mom anything. She's never in a good frame of mind.

Thanks for the good wishes!

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I guess my next question would be will she even remember attending the funeral or, when it's over, just continue asking you when's the funeral. It's a long drive (con side of the list) on unfamiliar roads (another con) and she's incontinent (yet another con). Based on your experience with her, will she remember and be at peace after the funeral?

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I don't think it's likely that Mom will be at peace, no matter what. Since Dad passed, Mom's never satisfied with what the neighbors, friends, family, and I do for her. The more we do, the more negative and critical she is. She has violent fits of crying and hysteria where she threatens harm to herself or others. I've let this behavior pretty much pass, excusing it as due to grief. My only recourse has been to talk to her doctor's office for advice re. calming her down.

I feel I have to deliver her to the funeral, because it's what she needs now, in this moment. Later, I will deal with the aftermath of disappointment or forgetfulness, come what may. If the threats of harm persist, however, I will probably resort to taking her to the ER.

Mom has said that she dreads this trip also. I think it's partly due to the incontinence problem, plus she's more agoraphobic with each passing day. I wish she would wake up and realise that this trip is not a good idea for either of us right now. I'm too stressed and tired to drive, and she's too sick to travel. Period.

However, I know she's not going to give an inch on this matter, and the family expects us to be there.

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Katy, I just want to make sure you are aware there is a difference between Medicaid for people who live in the community, and LTC Medicaid for those that need NH care. While mom may not qualify for community Medicaid, she can and will qualify for LTC Medicaid with proper planning.

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I guess Dad was cremated? Can you not have a service where she lives inviting just a few friends and family who live in same town. Do a little luncheon. Then take him the 4.5 hrs to where they lived on your own.

Really, your Mom sounds like she is really into her Dementia and now incontinent and hard to deal with. I would not want to drive 4.5 miles with her. For me, it would be too overwhelming.

Yes, an elder lawyer would be good. Each state is different in how they calculate the income cap. My Mom had 20k left after an AL stay. She paid 2 months privately for LTC. I applied in April, she paid May and June. I confirmed she was spent down in June and Medicaid had all info needed, and Medicaid started July 1st.

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By dad's and mom's wishes dad is to be buried in a very old historic cemetery belonging to mom's family. This is in the town where they were born, went to school and got married. The plots were given to them many years ago, before I was born, by my grandparents. Unfortunately, that happens to be out of state and 4.5 hours from where Mom and I now currently live.

I love your idea of the little luncheon for just a few friends here in town. I would definitely do that, if the choice was mine!

I may, indeed, be too overwhelmed to do the drive there and back. Some of the family are planning to come back with us, in my car, to help with cleaning out mom's garage and basement. That means I can probably enlist someone else to do the homeward drive. It'll only be a one day thing == and then they go back, but every little bit helps!!

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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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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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Is your mother even aware that the funeral is happening and where it is happening?

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Not entirely... Dad passed in January and the funeral is in 2 weeks. Mom started tearing the whole house apart in order to "pack" for the funeral in late Feb. She threw random things down the stairs and out of closets and cupboards until there was stuff all over the floor, plus broken furniture and knick knacks. It took me a month to clean up and re-organise, all the while with Mom in the way, arguing.

Almost every day, she asks me when the funeral is going to be. She asks me 10 times a day what time it is and when is her next doctor/dentist appointment.

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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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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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Why won't she qualify for Medicaid?

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I could be mistaken, but I don't think she qualifies, based on research I've done into our state's Medicaid laws re. income & assets. It looks to me as if Mom is just over the limit. Anyway, I intend to take this to a specialist attorney (Elder Care) in a couple of weeks.

Right now, my goal is to get both her and me to Dad's funeral and back, alive and well. The funeral is out of state, and Mom is so paranoid/irrational at times that I have doubts about being able to get her there and back. This is one of those "you'd have to be there" kinds of things, to understand what I mean.

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Mom and I live in the same state but in different cities. I have been commuting to her house to care for her while maintaining 2 households. It is too much for me with my own health problems.

Thanks for the suggestion re. the Agency on Aging. It's pretty much what Mom's doctor recommended to me today at her appointment when she totally failed the Alz/Dementia test.

I can make the arrangements for care...however, Mom is severely paranoid and insists that I be her sole companion. Plus, while she doesn't qualify for Medicaid, she will run out of money very quickly if she requires professional care.

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Getting mom to a geriatric psychiatrist to get treatment for her agitation and paranoia might be something to consider.

I'm not talking about sedating her or drugging her into oblivion. Just getting her meds that will allow her some better reality and quality of life.

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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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Do you live with mom, or she with you?

You cannot be forced to be someone's caregiver.

Call your local Area Agency on Aging and get a needs assessment.

Call the local Adult Protective Services and report that mom is a vulnerable adult.

Are you able to arrange care for her, or would you rather she become a ward of the state?

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Mom and I live in the same state but in different cities. I have been commuting to her house to care for her while maintaining 2 households. It is too much for me with my own health problems.

Thanks for the suggestion re. the Agency on Aging. It's pretty much what Mom's doctor recommended to me today at her appointment when she totally failed the Alz/Dementia test.

I can make the arrangements for care...however, Mom is severely paranoid and insists that I be her sole companion. Plus, while she doesn't qualify for Medicaid, she will run out of money very quickly if she requires professional care.

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

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