Hi everyone, still 6 years now into taking care of mother without family support. They don't believe she has "dementia" and have taken a back seat even with demonstrating a level of concern about her. We all live in different cities with health issues and family issues. How should I approach this conversation without being accusatory, or should I just listen to their ideas about how the care for Mom can be more shared in spite of Covid's presence. I had to stop in-home care and just use caregivers for running errands outside the home. This puts more pressure on me to do all household cleaning, financial
maintenance and attending to Mom who is very stubborn, selfish, and inconsiderate towards my care and safety instructions, and this wears down my will to continue on. Help, I need a respite if I'm going to continue this alone.

Talking has gotten you nowhere thus far. More talking with them won’t help.

You will have to calmly state that you cannot do this anymore. Setting an end date is a good idea. If they think Mom is not as bad off, they shouldn’t mind taking care of her. Piece of cake (not)! Let thrm
see for themselves.
Helpful Answer (8)
Reply to LoopyLoo

I would ask first of all who called this meeting?
Is it on Zoom, surely not in person given your separate living areas? Do any of them live nearby you, and are they able to help with any hands on realistically?
I will tell you just on the face of it that given you have NEVER had much support from them, I think it is realistic to know that you will NOT. Being adversarial then will kick up all their DEFENSES and send them into their CORNERS where they will not hear a single thing you say.
So, I am saying you are RIGHT ON. You have it. Listen to their ideas. Open with "I would appreciate any ideas you can give me going forward; I don't know how long I can maintain care in the home; it may not be much longer. I need help I cannot now afford to get financially or in risk (Covid-19) control. I sure would appreciate any ideas you can give me". Then take notes. Listen. Don't respond much other than "I thank you for your input".
You say that no one recognizes that Mom has any deficits. Therefore I would attempt to get a letter from her MD enumerating her basic level. Short and sweet. Read it first.
As you said, it is TRUTH that you don't know how much longer you can do this. I surely am with you on that as I wouldn't have made it a WEEK. Whatever you have done, it was heroic. Don't let it kill you.
Don't let it descend into anger. Stay calm and quiet and gentle and let their own GUILT eat away at them. I hate the word guilt. There are some times it is earned, however.
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Reply to AlvaDeer

Why on earth are you doing this?

You have heart issues and sickle cell. You have enough health issues on your plate that you should be taking care of instead of catering to a selfish and inconsiderate person, even if she is your mother.

You;re a social worker; what would advise a client to do in this situation ?

Stop trying to convince folks that you're right. Set a date when you stop care (October 1st sound right) and move on to taking care of yourself.

Either the rest of the family will step in and discover for themselves that mom has dementia and/or they will move her to a care facility.
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Reply to BarbBrooklyn

I agree with everything BarbBrooklyn wrote. Also, your profile states that your mother is 94 years old. She's lived her life - selfishly and inconsiderately. You must put yourself and your own health first because you are at serious risk of dying if you catch coronavirus.
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Reply to NYDaughterInLaw

Fear of “nursing home” and continuing cognitive failure are BOTH ubiquitous to caring for any LO with dementia, which I’m sure you already know.

It doesn’t matter whether Mom spits in your face or treats you like royalty. Dementia tints every single aspect of her life and your care for her. If HER activities include dangerous and self defeating behaviors, she NEEDS caring intervention from the person(s) legally responsible for her.

Her SAFETY overrides every subjective assertion of her personal desires, ESPECIALLY as an individual suffering continuous progressive cognitive loss.

You may wish to have a professional geriatric assessment administered as a source for a document defining objectively her psychological and cognitive status at present, and possibly medical interventions to be considered that may temporarily make her safety management more possible.

You have an important responsibility TO YOURSELF as well. No decision making on your mother’s behalf should be made without bearing in mind the relative consequences to YOUR HEALTH. The balance between your mother’s care and YOURS may not make for absolute joy for all concerned, but geriatric care is often, perhaps almost always, making choices between less than perfect solutions.

Stay well.
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Reply to AnnReid

Hi Evan. AlvaDeer’s suggestions for the Family Meeting sound like very good ideas. However you may not get many suggestions out of it, and you may find that no-one believes a word you say. Even if you can cool it for the ‘Meeting’, perhaps you should think about the next step.

1. The doctor’s letter is crucial, but perhaps you can back that up with some evidence. Can you take a few phone videos of your mother and her reaction to something that shows her memory loss, other dementia traits, and the behavior that you find difficult? Your siblings aren’t seeing her, and many people with dementia can show-time when talking on the phone, quite convincingly.

2. How are you paying for all this, carers etc? How does the cost stack up to your income? Start keeping a record of what and how much you are spending. You need facts and figures that can’t be argued with.

3. You need to re-think your Profile comment that ‘I don't know how I can get more assistance now that I know she fears nursing home and memory loss is getting worse’. Memory loss continues to get worse, not better. Virtually no-one ever wants to go to a nursing home, and many if not most parents fight tooth and nail against it. Even people who were quite happy with the idea when in their 60s, are strongly anti 20 years later. The reason it has to happen is that intensive round-the-clock care simply cannot be done by one person. Start looking at facilities yourself, and get some cost estimates. Stop thinking that it can’t happen because your mother doesn’t want it. Put it on the table as an option for the family to consider, unless you get more help.

If you can get through the Family Meeting without losing your cool, and get some practical positives out of it, great! If your cool starts heating up, perhaps you terminate the Meeting. In any case, sooner or later you will almost certainly have to consider the next steps. Good luck!
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Reply to MargaretMcKen

Taarna is right. In my case my mother in law (who I really loved) was living with us. Daughter lived out of state and I usually left my mother in law with them while I visited family in Ohio and then pick her up on my way back. My dad passes away and I need to get to Ohio to help my mom for a few weeks. I let my sister in law know and she tells me she can't take her mom in even for a day as they will loose what ever house assistants they get by having her "move" in. None of what she was telling me made any sense at all. I got mad and told her that since she expects me to tell my mom I can't help her because I'm taking care of her mom that I will do what I have to do and I better never hear another word about what I'm doing for her mom again." I had to put her in assisted living and considering how nice the place was I was happy with it. I also managed to walk all the paper work through and got her on SSI so it was all paid for. I managed to get it all done and still go help my mom. I made sure my mother in law was always well taken care of and like I said, I loved her. Sometimes you just have to do what you have to do. And warn your siblings that if they aren't willing to step up then they have no right to 2nd judge what you do to help your mom.
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Reply to whaleyf

Where is it written that you and you alone are responsible for your mother. 6 years is long enough or do you want to not have a life of your own? This needs to be a shared responsibility and your siblings need to step up. That being said, it sounds like your mom needs to be placed. I would let my siblings know I’ve made the decision to place mom. They don’t deserve any input since you are her sole caregiver. Take the necessary steps to have her moved. When her name comes up you can always refuse, but I strongly suggest you go ahead. I doubt your siblings will “step up”. Firstly they don’t help you and secondly they won’t believe you are done. Live your life while you can. It’s the only one you’ve got and your time will run out sooner if you don’t.
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Reply to DIaneAL
worriedinCali Aug 17, 2020
Where is it written that taking care of an elderly parent is the children’s responsibility to begin with? It’s not a responsibility period.
Don't be accusatory at all. You will stop the conversation before it starts. Covid, and changes it has created, is a better talking point. Even that will limit what you get out of the conversation because if any of them come into the house to help you it is as risky as the in-home providers you had. What you really need is some time off, right? That's what you need to discuss. You've been doing it all without the extra help, you are tired, you need a break.

Are any of them willing to take her into their home for a month? Even if it means a week in one house, a week in another, etc - so you can have a break and remain in your own home to get personal things done. If no one willing to step up to the plate, then you will be looking at some temporary respite care at a facility (and go ahead and check some out so you have prices to give them). If mom has the money, plan to use her money. If she has no money, the siblings will need to split the price of this care since you've already contributed your share up to now.

If no one willing to take her in or pay for facility care - then tell them you just wanted to ask them all first and now you'll make the decision. And, if anyone has any better idea on how to get her out of your house for a month, you are willing to listen (and be sure to have an open mind to other suggestions as long as the result is the same). The goal is to give you a real break to do whatever you want so that is the reason to move mom and not move you out of your own house. And a month is minimum - you really need at least that amount of time to refresh. If the conversation sounds promising then you can also add that moving forward to avoid burn out, you will need some kind of relief several times a year. Even people who have a job get vacation time to refresh. So, 2 months a year is not much to ask when you are providing in home care. If they get a taste of it, they may have more empathy for what you do all the time . Good luck, but don't expect much from people who don't step up to the plate on their own.

You may also want to consider in home care again. Stipulation is mask, gloves and extra hand washing while in the home. Make sure to have plenty of those supplies on hand. These workers don't want to get it any more than you want them to share it. They don't want to get sick, make their families sick, and they want to earn a living. They are taking extra precautions and I think the risk now is much lower than in the beginning.
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Reply to my2cents

If you plan to meet/discuss w/ the others, you need to have as much reliable documentation as you can get your hands on. It's easy for others to deny or dismiss dementia symptoms when someone is in the early stages. I went through this with my brothers. It wasn't until they finally heard the repetition of questions, comments, statements, etc themselves. It's easy if only short visits or calls are made, as the person can manage to pull their socks up and appear somewhat normal. Any little slips can be dismissed by the others as just being that she is old.

Even after acknowledging there was an issue, they still didn't get the full scope. They also didn't listen to me (I knew nothing about dementia when I noticed the changes and did my research - tried to share info with them, but one flat out denied, the other called me a know-it-all!)

It certainly can't hurt to try to get the others on board. Personally I wouldn't hold my breath, but you never know. In our case, one brother isn't local, so is no help and because he never lost his abusive nature from childhood, I am done with him. The other at this point begrudgingly takes her to Mac Deg appts 4x/year and complains to no end about it and tries to get out of it! I can't support her weight now and she won't stand/walk w/out help. The treatment place is outside the facility transport area and there are none local, so I have to rely on him for this. Once she passes, I'm done with him too (not as abusive as the other, but I can do w/out his crap!)

Hopefully you can get them on board, but if not, what is the backup plan? Does anyone have POAs? If not, it *might* be possible to get this done - it all depends on how far down the dementia path she is. Our mother was in the early stages, but the EC atty talked with her and was satisfied that she understood enough to sign documents (we did already have POAs in place, before dad passed, but needed to set up other legal documents regarding her finances, condo, trust, etc.) If no one has POA, and you think she might be able to pass snuff, RUN, don't walk, to an EC atty to get all the legal issues taken care of. If she can't pass the check, it might require getting guardianship.

Does she have income and any assets? If yes, these should be used for her care. I understand the need to reduce interaction w/ others, given the virus and medical issues for both of you. If she has no assets and limited income, Medicaid might be able to help. Some states will allow Medicaid assistance for help in the home (unclear if it would apply to running errands for you vs hands-on care. Sometimes Medicaid can pay you or other family to provide that care (not likely full time, but anything helps!) It likely would be considered income that has to be claimed, but every little bit helps!

While there are less AL/MC places that accept Medicaid, you might be able to find some that are acceptable. It doesn't always have to be NH. Our mother is in a private pay facility that has IL/AL/MC. Your mother has other medical issues that might require NH vs MC, but there are NHs that have MC units.

You DO have to consider your own health issues. If you don't take care of yourself and/or something happens to you, what then for your mother? Two of us do have POA, all 3 are trustees for the trust, but neither of them take ANY interest in what I do. There is a LOT more to it than just paying the bill at the facility! YB doesn't think so - he actually said "They take care of everything." to me... No, they don't. I have to pay the bill, but that requires ensuring there are enough funds, adjusting the funds fed in from the trust to cover other necessities, keeping track of supplies not provided (briefs, wipes, personal care items, medications, etc), ordering them, buying them, keeping up with medical and dental treatments, etc. Visiting before shutdown (had a recent visit, but with restrictions that was a joke.)

Do what is best for YOU and your mom
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Reply to disgustedtoo

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