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Have cared for aging parent in our home for 20 years. We built separate apartment for parent and she contributed to the monthly costs. My Sister, who is RN, is the POA and holds all financial accounts, and has only provided some help (grocery shopping and doctors visits) over last couple years from the 20 parent was with us.
Now parent getting dementia, and sister decided to step in to help and has decided to move parent from apartment to their home for closer care. Within a couple of months, sister realized how hard it is to deal with care and wants to now split the care evenly 50/50.
(We currently have parent 25-30% of the time, which was agreement). We get no financial compensation and sister does not feel we should get any compensation.
We do not have any real control of anything, thus we don't feel we have to take back care 50/50 since we had been giving 100% care over last 20 years. We would like to have some feedback on this. Thanks,

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gazdzik, some more information would be helpful: where would parent be living full-time? (in RN sister's home?) or does parent travel between home?; how old are you, are you retired? Is no pay for caregiving a dealbreaker for you? Are you and sister in agreement that your parent will never be placed in a facility?

For 20 years you took care of this same parent? Or their spouse and now this current LO? I'm asking because caring for this LO going forward will be far more intense as they decline, not like the past 20 years. Sometimes families don't/won't consider transitioning their parent to a care community, which is fine but family must know what is coming down the pike (and often they cannot imagine the stress). Your sister is an RN, so does she still work part or full-time? Do you? If either of you are married, do the spouses have a say in all of this? They need to. They are the dealbreakers. Would you/sister consider adult day care for your LO (paid for from LO's assets)? This may be the best of all worlds. I wish you success in working through a care arrangement that works for everyone!
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You both should be compensated for the care that is given.
You should have been compensated for the care you gave but can't go back in time to get it.
And with the split of care I hope you are not moving your parent back and forth between 2 houses. This will become confusing for your parent and exhausting as well. And more confusing the more the decline.
This is going to be difficult to do but ....
Forget the past. Move forward and come to an arrangement that will provide the best care for your parent in the safest way possible.
Your parent, I am going to assume (dangerous thing to do I know) has some income Social Security, maybe a pension? other savings?
Use that to pay for what needs to be paid for.
You should have been using it as "rent", insurance, electric bills, gas bills and all the other expenses.
Use it now to pay yourselves, have a caregiver contract drawn up.
If the savings are not used to pay you as an actual salary start with all the household expenses and use the Social Security to pay for his/her portion of those bills. 3 people in the house including your parent, divide the bills in 1/3 or how many people are in the house divide by that number.
Keep receipts. You may need all this information IF you have to apply for medicaid later on.
And no one can do this 24/7/365 so hire caregivers as well they are paid from your parents funds as well not yours or your sisters. If you have not consulted with an Elder Care Attorney in a while it might be time to do so.
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Agree with forget the past.   I have my mom in my house and she is MUCH more difficult every year.  

Of course you don't HAVE to help out. 

Agree with PPs, your sister needs to look into adult day care, home health care aid during the day.   I think she needs an elder care attorney
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20 years is a very long time to be the primary CG of a parent--she's aged from, what? early 70's to early 90's in that time?

I agree that going back to the 'original agreement' at this point would be hard, if not impossible. Once you've had some freedom from the nonstop care, you see what a real life is like.

Stand firm with sister. If your choice has been to keep mom in home with you, yes, it's hard. But it's time for sister to wade these waters.
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"Now parent getting dementia, and sister decided to step in to help and has decided to move parent from apartment to their home for closer care. Within a couple of months, sister realized how hard it is to deal with care and wants to now split the care evenly 50/50."

Ironic how that happens, eh? They who are NOT providing the care always know best, and are often critical of those providing the care, until they decide to step in and provide the care. Suddenly the light dawns.

It would be interesting to know if sister, as POA, is compensating herself for the care she provides. At the very least, mom's income/assets should be used to cover increased expenses in the home(s) she resides in. Without a care-giver agreement, paying yourselves could present a problem in the future, if she ever needs Medicaid. She is probably past the point where she could legitimately sign any agreement(s).

I agree with some other comments about moving mom back and forth between residences. ANY move can be distressing for the person and can exacerbate dementia. Stability and consistency are some key factors in dealing with dementia. Trying to accomplish even 1/4 - 1/3, never mind 50-50 sharing is going to take a toll on your mother. Being an RN might not mean she knows a lot about dementia - depends on training and/or what field of medicine she was in. It does not sound like she is fully aware of all aspects of dementia.

One thing you could do is sign up as rep payee for her SS. In reality, no one should be using another person's SS income (SS rules) even if only used for their expenses. Doing this would mean you and ONLY you could access the funds. They *must* be used for her benefit only, so it can be used to cover the costs of her housing, food, medical care - the necessities, which would defray your costs of keeping her in the apartment. You should also be able to use the funds to hire help for her. If her income and assets are low enough, she could also qualify for some Medicaid funding for hiring aides. Hiring outside help will alleviate some of the stress and strain of the care-giving. FYI - her POA would have NO bearing on the SS or applying to be rep payee (call/contact a local SS office, not the main number, unless you enjoy menus and being on hold!) Once/year you would report how her SS was used and can be done online. It was one of the easiest tasks I had related to ensuring mom was cared for!

If you think her SS would be sufficient to cover her costs and hiring enough aides to lessen the burden on you, would you be willing to have her return to the apartment, more or less full-time? Is sister close enough to provide care IN the apartment, which would allow sharing of care without moving mom around? It would be best for your mother to have ONE place to reside. Too many changes can lead to more difficulties and faster progression. The "plan", whether 25, 30 or 50% is going to be hard on mom.
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nitsirk9898 Jun 2020
You are exactly on point!
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My way of thinking: you already did your 50%.
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Stand your ground...she moved parent out so let her take care of parent for the next 20. If she doesn't like it She can hire some help.
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I don't think it is fair to discount the care you have already given over decades just because you got the "easy" part. I get the feeling your sister wouldn't have stepped in at all if you hadn't mentioned that your mother's care needs were becoming greater than you were able to handle - perhaps by asking her to contribute a little more time personally and be more forthcoming with paying for outside care with you mother's money?
IMO her solution to move your mother and care for her was a declaration that she was much better equipped to do what you could/would not, although the fact that she was wrong means you need to work together to find a different solution it does not mean you need to revert back to the previous status quo. Decide what you want to happen, what is realistic and what your terms are, then negotiate with your sister to try to find a solution that works for all of you (your mother foremost of course) - be firm with the boundaries you will not cross. Look at all options, including those that involve outside caregivers or a facility.
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You have every right to tell your sister no.

Your mom needs to be placed where she can receive the care she needs without being moved back and forth.

I feel like your sister wanted to be in control, she has got what she asked for now she gets to deal with it. Sorry sis! You knew best and you took it upon yourself as the POA to do this. So now you can hire help for mom or put your knowitall, oops! I mean knowledge to work and take care of mom.

The 20 years you took care of your mom counts and I find it difficult to believe that anyone would discount the sacrifice you made. Don't believe for 1 second that what you did doesn't count, it does.

If you decide to participate then you should demand payment and that's that or she can hire someone. She doesn't get to decide what you will do and if you should be compensated for it.

Stand your ground and don't let her push you into something that you don't want. You have served your time taking care of mom, now sister can handle what she did to herself.
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jacobsonbob Jun 2020
Excellent points!
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You cared for them for 20 years with no financial help, and NOW she wants to go 50/50 (but still with no financial help)? Just say no.
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I see this so often on this forum. Siblings and families torn apart over a parent’s care. In my opinion you have done 20 years of care. It’s your siblings turn. And you can, if you wish, pitch in with doctors visits, etc. as she did when you had mom. 50/50 is over. If that’s not good enough, hire help or look at alternative care. Done.
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Tell sis what you said here. You did it for 20 years with little help and she made the decision to move mom. Let her know you cannot do 50-50 with her, if that is your decision, and ask her what Plan B is.

If she cannot do it, she will need to use mom's money to hire help. The only other alternative is a facility which might be the next move. Are you ok with that?

If you prefer, she can move back to you with mom's money contributing more to the household, then offer that idea to sister. It doesn't have to be direct compensation to you as hired help, it can be in the form of paying mom's share of the household expenses like utilities, a portion of mortgage, a little in home care (so you aren't doing 24/7 care), etc. Whatever is decided for payment, get sister to agree in writing so it can't be changed up later on.

For management of mom's money, it might be better to figure out how much the average expenses are for your household and divide that by number of people who live there. Use that figure to determine what mom will pay per month for her share and then sis can pay that amount directly to one or two bills you owe. If she ever has to go to facility in a Medicaid bed, the checks will show to be for bills and not payment to you (which could possibly be considered as gifts).
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I would stick to the agreement of 25-30%, but she should stay with your sister. You have cared for your dear mother for 20 years, but as time goes on she will probably decline further and your sister being an RN is more qualified to care for your mother. It is great you are a Physical Therapist, your mom will definitely need your expertise. You both obviously care a great deal for you mom, find ways to work together. You are both so fortunate to have each other for support. Be gentle and kind to each other. I have taking care of my mother for twenty years , I know how difficult caregiving is. I am the primary caregiver, and my niece has been helping me care for my mom for 11 years. She lives with us. It would be very difficult now to do it alone, I took care of my mom alone for 8 years. Getting along is a major component when sharing in the caregiving duties. I do like the sharing aspect, You could help out with grocery shopping, appointments, taking mom out, providing respite for your sister and so on. Wishing you and your sister the best along the journey of caring for your mother.
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You've done your part 20 years long time. Your sister made that decision to take her to her home. So don't take your mom back it will get harder believe me as the other post said u can help out doctor appointments ECT that's it she wanted to be in control she got it. Good luck
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And no 50/ 50 you did all by your self it's her turn and don't feel bad about it or guilty that's all of our problem as children. You have a life too I assume you are married.? What about your husband so think long and hard.
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It's unrealistic to shuffle Mom from home to home. It's also ask you to come stay at your sister's to care for her if you live in another city. Forget the past 20 years because at some point that time that will hopefully become cherished memories.

I think you and your sister need to come to an agreement of what the ideal care for mom looks like? I'm certain you don't want Mom subjected to neglect, frustration or resentment from a caregiver. Once you have a goal in mind, you can help your sister find the resources to fill in the gaps so mom can age in place with grace.
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Your parent needs to be in an assisted living facility. This is for your sanity and Mom's safety. If your nurse sister is too hard-headed or hard-hearted... get some help from the county eldercare ombudsman and straighten out the mess. I took care of my mother for 20 years. It lost me my health and wife. And now that she is dead I am stuck with finding a new place to really live--- now at 65. Nip this in the bud, y'all. And DO NOT let family push you around.
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Sounds like your sister wants the authority but not the responsibility. Yeah, well, you DO have a say, at least where it pertains to YOU. Sister doesn’t get to dictate how much you have to do and without paying you for your time! Moving Mom back & forth is the worst thing for her, as others have pointed out ... and which you already know. Sister made the decision to move Mom in with her, which is a good thing for you. Now sis is finding out just how much work is involved in taking care of Mom’s needs, and she has to figure out how to make it work. Didn’t you have to do that for the last 20 years?

Figuring out how to make it work does NOT mean push more back to you. BTW, best now to tell sister that your 25-30% won’t entail moving Mom back & forth. I can so see sister telling you Mom can’t be moved when it is one of the times Mom is with you; thus, pushing Mom’s care all back on you.

Stand firm & be proactive ... tell sister exactly what you will do to help her with Mom’s care ... help that will NOT include Mom coming to your home or a whole other litany of tasks that would severely impact your quality of life.
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Is your mother able to afford her expenses? If so, you should be paid for caregiving and she should pay for most of her expenses. If dementia affecting parent, I agree that living alone is not an option. I would advise months long residence in each home but compensation should be given in both households. If you do not wish to partake in care, let your sister know. Your mother will need to hire Caregivers.
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I sympathise with most caregivers who find they have bitten off more than they can chew (having been there myself, for a start) but I am struggling to sympathise with your sister. In addition to how hard caregiving is, it seems she might also learn how very unwise it is to fix something that is working.

Your sister moved your mother closer to her home entirely for your sister's convenience. Moving a person who has dementia from the home she's lived in for 20 years is a bad idea. Moving a person away from her established routine is a bad idea. Moving her away from the care of the people she's used to is a bad idea. Turning round now and saying that you and your husband should help more? - she has a nerve. I think the 25-30% of the time is already quite generous of you, frankly.

In any case, it's going to become harder as your mother begins to need a higher level of skilled care. Your sister may be an RN but unless she's trained and/or experienced in dementia care she'd better look ahead at placement options, and stop expecting you to cover her.

You definitely won't be able to shuttle mother back and forth, by the way. Not for long, anyway. It will completely disorient her.
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You’ve done your part for 20 years. Let your sister do all of it or she can put parent in assisted living. Don’t get sucked into caregiving again!!
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Imho, herein lies the fact that the sister thought that she could accomplish this caregiving task and also moved aging parent with dementia away from what elder knew. Sister should look at facilities.
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F**k no, pardon my French. It's her turn.
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