KatyKat Asked April 2022
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?
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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?
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.
My condolences on the loss of your father.
Good luck to you.
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.
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.
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.
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.
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.
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.
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.
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.
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!!
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.
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.
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!
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.
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.
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.
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.
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.
Are you beholden to them in any way?
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.
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.
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.
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.
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.
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.
It may all work out. I'll continue hoping for the best, while preparing for the worst (Depends panties, lots of wipes etc.)
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.
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.
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.