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,
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!
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.
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
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.
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.
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.
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.
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).
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.
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.
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.