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You sister sounds really cruel! Along with whatever else you do to improve your situation, try limiting the amount of time you spend with her. You've got enough on your plate.
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From your mother's funds, she should hire an attorney to put in writing her wishes going forward for her estate and other things, such as, how you are to be compensated for your efforts.
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What will you do when mom passes away?  After Covaid, can your DH find PT work?  What the h@ll is he doing, it sounds like you are doing all the work, and he needs to help too. 

If your mom is competent, she cannot be forced to pay you.  Most family caregivers do not get paid.  That may not be fair, but that Is live. 

Get on a wait list NOW for low income/senior housing.
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gdaughter Dec 2020
Mom can't be forced to pay her,but daughter can't be forced to be 24/7 on call aide either. Let mom find someone as trustworthy for the same rate....
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I feel for you. I am living with my mother in a neighbourhood where, it costs 2k to rent a one-bedroom flat. I am also renting a small flat in a country village in case I have to leave my mother's house (which I will do if my sisters or their children move in with Mum). I pay for my room at Mum's too, and help with groceries and takeaways. She is not disabled but very emotionally dependent and also needs me to drive her to appointments, deal with tradesmen and keep her company. I am self employed and have been trying to work from home since long before the Covid crisis, but it is costing me clients, opportunities and even my social life. Recently she said she might like to move to a smaller home nearer her grandchildren and I thought "Freedom!" because I could afford to rent near her. But she changed her mind (she said she wants to only see them when it suits her). My sisters and some of the grandchildren were very cruel to her when my father died, so I understand why she's wary. But it's an impossible situation for me. I feel like I'm just treading water, waiting for her to make a decision, while my life falls apart. It's as if I'm entombed. And still I want to do my best for my Mum so I will have no guilt. I don't know if my story is much use to anyone, but I want to let all carers know that I empathise. God bless
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gdaughter Dec 2020
It's not just a matter of not having guilt, it's knowing in our hearts as good daughters we are doing the right thing morally, ethically. But we suffer for it one way or another. My parents are of the generation that saw roles differently. My father is clueless to the amount of effort that goes into making him look as if he is living so well independently. The toll on me caught up with me with a critical health crisis in the past few months and I have learned my lesson. I will continue on but pace myself and be wiser and have boundaries in the future as I recuperate. My sister, as I have said prior, had the nerve to BLAME me for the health crisis. That on top of everything else. WHile she does nothing.
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Go to an elder law attorney and explain. He or she can write up a contract for the assistance you provide with the rent you are saving in mind in such a way that the contract doesn't interfere with a possible future Medicaid application for long term care. As others have said, it would cost a whole lot more than your rent if your mom had to pay for the assistance you provide. Done.
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My husband and I lived with my father during his last years and did all the care taking and property maintenance. It never crossed our minds that we should be paid for doing that. We were grateful to have a place to live and my siblings were grateful that my husband and I were taking care of our father. We did not give much thought to what we were not doing during those years; we just tried to do our best at taking care of dad and the house.

Ours sounds like a situation similar to your own, (i also worked part-time into my 70's), but we were fortunate to be supported by more positive attitudes. my husband used to say, "You have to live somewhere." My siblings knew how expensive hired in-home help would have been and were delighted we did not have to arrange that. My father was delighted to be able to stay in his own home. For our family, this was a very successful arrangement.
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gdaughter Dec 2020
That's the way it SHOULD go. Not everyone is so lucky or has reasonable family members....
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Only one question you need to answer since mom is quite a bit older.

What will you and your hubby do when mom passes away?

If I was in this situation, I would start working on that plan - because it could become a reality any day. Talk and work with your hubby on this while also caring for your mom.
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Do you know if your sister was ever diagnosed with a personality disorder?
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Have a talk with your mom explaining everything and let her know that she needs more help now and you're exhausted.

Give her your ideas and options that would work for you.

My 96 yr old Dad with Dementia is living in his own home and I've hired 24 7 Caregivers.

I looked very hard and the least expensive I could hire them for was $9 hr which is $1512 a week and usually you find them no less than $12 an hour.

So, you agree to a weekly price, then you subtract a fair portion for You and your husband's Rent and you deduct that from the Caregiving charge tgat your mom needs to pay.

Or, hire a 24 7 Caregivers and have your mom pay it all and ya'll pay your mom Rent.

In regards to your sister, you can let her know after things with your mom has been agreed upon if you want.

Shw should hzve no problem with the agreement as long as your mom is paying you the least expensive price of what most Caregivers charge and know that ya'll will be deducting Rent. That is Fair.

If you decide to hire 24 7 Care, your sister can always have a schedule to make some extra money.

$1512 a week is a lot of money,, so you will have to see how long your mom is able to afford it..

after her money runs out then it will be you and your sister taking turns watching her, but you and your husband will still need to be paying a fair rent.

The only other optiin would be to put your mom in a Senior Home where she would be lonely, Sad, scared , feel unloved, and probably not live very long, especially with the covid.

Praters ya'll can work it out.
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30 years my mother moved in no pay now she’s 92 can not be alone LBD cannot do a thing for herself I am 24/7/365 caregiver no siblings and now she doesn’t know who I am, a good friend she says!
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You need to call/visit several assisted living facilities and ask them to quote you what it would cost for her to live there and what all of the extra services would cost like assistance with bathing, dressing, the managing of medications, laundry, etc.  Get several quotes from several places.  I promise you the cost will be at least $4,000 per month.  If you were living outside of your moms home, I doubt you would be spending $4,000 per month on rent.  For the sake of math, let's just say you found a house or apartment to rent for $1200 per month.  You and your husband living there and taking care of her 24/7 is saving your mom thousands of dollars.  You need to be paid for what you are providing and giving up.  Tell your sister you will gladly pay your mom $1200 per month rent when she starts paying you $4,000 for the 24/7 care you provide.

I am just being snarky when I say that, but it would not be unreasonable for your mom to pay you $1,000 a month for the care that you provide.  Your sister is correct...there is no free meal.  That means your mom doesn't get free care.  Her care would cost more than your rent.
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Sarah3 Dec 2020
Another way to put it is lay out the cost of live in- about 3500 per week- yes a week!!! For 24/ 7 live in is give or take 3500 per week**
x4

”After some research we’ve learned the cost of live in caregiving comes at a value of apr 12,000 per month
12,000 - 2,000 for rent we arrived at what the monthly cost will be 10,000

they don’t have to charge the same as the going rate but they could say “however we’re understanding of the strains this puts so we’re willing to provide the help at a mere 7,000 ( or whatever) amount
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If your mother has to money she should pay or contribute to the expense of the household. You probably should do some kind of written agreement --- keep it simple. Make sure that what you are charging is no more than the "Fair Market Value"; include a contribution to household expenses plus your time/services. Since you are living with her free you should deduct the "Fair Market Value" of the housing. Your sister is right that any calculation should be balanced -- but the cost of help would be greater


You should get right on it while your mother is still competent. Be sure to discuss with your siblings -- not to ask permission -- just to get input -- So later there are no surprises.
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Usually I have to disagree with the family, that isn't in the daily caregiving role. But, in this case, I have to side with your sister. Your living there Free! I take care of my mother, live in her home, and pay over half the bills!! So, my question is, aren't you able to save since you aren't paying bills? Is your husband looking for work or able to work?
Look, once you move in with a parent, you take on the responsibility of their health decline. I agree with you, it's not easy!! But, if I wasn't paying bills here, I'd definitely been able to save a little nest egg. This however, is what family does for family. Mom is 96? I know your burn out, I am too. But, life is limited and your mom won't be with you that long. Unlike your sister, you will have the memories with your mother. I pray you find resolution. It sounds like a fair trade of to me!! Take care & good care of mom! Kelly
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Sarah3 Dec 2020
2 problems ( at least) w your statement

When someone requires live in care there cannot be any “rent” - iow one cannot say “well the live in caregiver gets room and board so that counts towards ( or as) compensation”

Similarly even IF it were allowed ( it’s not but a hypothetical) the cost of live in full time caregiving would far outweigh the cost of “rent”— the op could deduct the cost of rent from the cost of full time live in caregiving to appease the bully sister— I.e. “after deducting for rent, the monthly compensation will be paid at x amount
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Check with the local Elder Services agency. There may be programs that compensate caregivers available in California. In Massachusetts the program is called Adult Foster Care, it’s Medicaid funded and a caregiver living with an elderly or disabled person can receive a tax free stipend for providing care.
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Have you looked into moving to a low cost of living are where your SS would allow you to live adequately?
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swegner Dec 2020
Yes. We were planning to move to Italy last April. Covid changed everything. I was in the process of applying for dual citizenship, which would allow us to be there legally. We had an apartment arranged for €550/month including utilities. That’s about $625/month. Nowhere in the entire United States is that possible.
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I feel your pain, too. And I think your sister would be wise to calculate how much 24/7 live in care and supervision costs on the open market before she gives you and your husband so much incentive to move out.

Having said that - what's stopping your husband getting work of some sort, sorry? You explained that he was unable to regain employment, but surely if you can put in 3 hours a day then purely for the sake of fair shares he's had time to think of *something* remunerative he can do?
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swegner Dec 2020
Please see my previous answer to Dianne
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I feel your pain! I had my mom with me for 15 years and no pay!

Your sister doesn’t care. Bypass her and discuss the matter with your mom and an attorney.

My siblings were not supportive of me. It became too much. I started setting boundaries and mom blew a rod!

Living in a house with a parent absolutely puts stress on a marriage.

There is no privacy. There is no time to plan any special times away for just the two of you. It becomes miserable. I sought out therapy which definitely helps.

It’s hard on parents too. Most don’t want to be a burden and they have lost their independence.

They are suffering emotionally and physically. There is nothing that is easy for them. They lost their spouse. Friends and family members have died and so on.

My mom took her frustrations out on me and pitted her children against each other.

My brothers were not approachable. They believed all of my mother’s embellished tales.

My brothers were trying to intimidate me, one said that I was disappointing mom.

Mom has been a perfectionist as long as I can remember. He felt that he could do better.

Guess what I said? Then go right ahead! Mom lives with him and his fourth wife and now he sees what I went through.

He is retired and has hospice helping out.

My other brother doesn’t help him. The only time he came to my house was to eat and get money from mom. He spends all his money on partying.

As relieved as I was to no longer be caregiving, it was a painful and stressful way to say goodbye to my mom.

I talk to mom on occasion. I am not close to my siblings, which is fine with me.

I was always there for them in their time of need. I can’t say the same for them being there for me.

I wish them no harm. I am happy that mom is being cared for.

I am happy my husband and I can share our life privately again, especially since he was recently diagnosed with cancer and receiving radiation treatments.

Life is short. I sincerely hope that you find a viable solution soon.

Wishing you peace during this difficult time in your lives.
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swegner Dec 2020
Thank you so much. There is a lot of guilt in feeling like I should be compensated. I know there are adult children who feel they should take on caregiving as repayment for being taken care of during their childhood. I do not feel that way. I chose to have children, knowing full well the 18 year commitment. In fact, I’ve had my adult son with me until 6 months ago. He’s 38 and high functioning autistic. So not only do I have my mother to care for, I’ve had an adult son who didn’t drive. Add in a husband who is angry because we have no privacy and our marriage is hanging by a thread.

Im in the middle and the pressure is just too much.

I will lift you in prayer for peace and good health.
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It does sound like your mother's cognitive abilities might preclude being able to sign care agreement documents, assign POAs, etc.

IF she is beyond that capability, guardianship/conservatorship may be the only option. I personally don't know how that all works, but I should think the guardians would get paid, Non-family guardians don't do this for free! IF she has assets, they would be used to cover the legal costs and pay for your services.

The only other option I can think of is getting her placed in a facility, using her assets. If she owns her home, that may have to be sold, so plan accordingly. That would have to mean moving to a place where costs are not so high.

IF she is still capable, then certainly you could give an agreement a try, but she would have to be willing AND you should do this with proper legal and financial advice. As another commenter noted, that would be considered income, so it has to have taxes, SS and all that taken out and filed accordingly. It could also impact your SS benefits (you recoup some of that later, after she passes and there's no more income.)

Determining a fair wage for care-giving isn't something that we here on this forum can gauge. Rates vary depending on what region you are in (for instance, some ALs in NYC area would be thousands more than what we pay for our mother, yet it is much less down south. Cost of living matters.) You'd need some legal assistance to determine what a fair wage would be, factoring in that you are live in help. It is also highly dependent on how much income and/or assets she has too.

IF she is very low income, you could check into Medicaid. They don't pay for full time in-home care-givers, but something is better than nothing (family can be the care-givers.)

See if any Elder Law attys in your area offer a free initial consult. Document everything you can, to make best use of that time. Form all your questions before you go and take notes. IF she's already been deemed incompetent, you likely will have to go the court route. If she hasn't, and isn't too bad, the atty can determine whether she's capable of signing agreements and documents.

As I posted to another comment, sister's opinion is worth 0. I would NOT discuss anything further with her. The only thing I might say to her, esp if she brings it up or complains if you seek to get this changed legally, is if she thinks it's such a great deal, why doesn't she take over? Sure, free room and board is great (no idea if you and husband contribute to the living costs and food), but there ARE other needs which require some form of income.
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jacobsonbob Dec 2020
A 70 y/o has already reached the "full retirement age" so there would be no "penalty" for working while receiving SS.
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We live in the San Francisco Bay Area. Rents here are out of our price range. My husband gets $2000/mo SS and I get just over $1000. we also have to pay for health insurance. Most weeks I work on average 10 hours +/-. We have 4 cats and trying to squeeze into a small one bedroom apartment isn’t an option. My husband is on the ragged edge of leaving. The stress is effecting his health.

what is a fair amount to receive for caregiving? We literally can’t go anywhere together as a couple.
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MaryKathleen Dec 2020
Have you looked at Senior Apartments? I am in So. Calif and there are a lot of apartments that charge you according to your income. There is usually a waiting list, but if you are on the list, at least you can see a light at the end of the tunnel. Why do you have to stay in the Bay area? Is it because of your work? If so, have you considered leaving the Bay area? My brother lives in Lake County and the rents have got to be cheaper than the Bay area.

I know you feel trapped, I have felt that way too in my life. Look for the hidden door to get out of the trap. There is usually an out we haven't considered.
"Hugs"
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First thing I would do is stop discussing the issue with your sister, and instead discuss it with your mother.
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disgustedtoo Dec 2020
It's none of your sister's business, but if she thinks it is such a free ride, tell her she can take over.
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Does your Mother have dementia? If not she is capable of making a care contract with you and your husband. This would mean that your room and board are a part of that contract, then costs for the home will be paid by your mother (are you her POA) and her bills for the home paid by her. There could also be a cost for meals and meal prep, and for what care assistance you give. THIS should all be set in stone in a Lawyer's office with your Mother present and assessed by the Lawyer as competent to understand these decisions.
Your sister and her opinion figure in this NOT AT ALL. In fact, as you are sole caregiver this need not be discussed with Sis unless you wish to do so (I can give you family mediation information if you wish to private message me and are interested in setting up such a thing with Sis).
Do understand that income will be reported by you and your husband through the IRS. None of this can be done willy-nilly. Get professional advice.
You and your husband may not wish to continue in hand on caregiving. If you do not then your Mom may at some stage require medicaid help. If that is the case it is important that all costs and receipts Mom is having for any expenditures be carefully kept with meticulous records for the 5 year lookback. GOOD LUCK to all of you.
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I so empathize with your situation. My ILs tried to do it to us when both of us were unemployed. They are both severely ill, her with a cancer dx and he now just home with a stroke.

I'm in one of the more expensive regions in the country, and they live in one of the more elite cities within it. That said, the going rate for a room, even there, would be at max $1,500/month.

That's about what the average SS benefit is for one person; you have two and you also have your income.

It goes beyond that. When we said no, fmil threw her fit but eventually they got a lady to stay with her and ffil overnights and on weekends. The lady is only paid $4 over county minimum wage, but she works--get this--over 120 hours a week. Her monthly cost is $9,500.

They also employed Brother's Wife as a day-shift person/overall manager at 50 hours a week. They are paying her $7,000 month.

So that's $16,500. You could rent an entire estate for that, even here. It is certainly more than $1,500. The costs would be about half that were they to go into assisted living.

SS for two people plus your income should be able to get you an apartment, and that will then balance the scales with you and sister as well as restore some space for you and DH.
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