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I had my sister move in with me because she is disabled and needs help. She wants to pay me for all the things I do for her, which, now I realize is a lot. I don’t have a life anymore, I am beginning to feel like I am 87 and I am 70. With absolutely no help from her children, what should she pay me? Honestly, I don’t want her money, I want her happiness. But I have given up my happiness and independence and feel slowed down to her age and disability. So, to answer her question of how much she should pay me, what would that be? What would a caregiver/cook/housekeeper ask for? This is a 24/7 issue. No help from her children whatsoever! Thank you

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Peggy, welcome to the forum!

You should not be "giving up your happiness" for your sister. Neither do her children have any "obigation" to help. Let's just be clear about that.

Is your sister paying you room and board, or are you splitting living expenses, like roommates?

If your sister requires a lot of caregiving, she should be hiring help to come in. If she is low income, she should apply for Community Medicaid to assist.

Contact your local Area Agency on Aging as a starting point. They will do a "needs assessment" and advise on her level of need and how to go about securing help. She would probably also benefit from 'case management' services.

https://www.officeonaging.ocgov.com/services/contracted-providers
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You may want to check with an elder care attorney for an actual contract. When my mom and I went to one for updating her will and doing the POA, we talked about this. I remember her saying something about $15/hr, but then we have gone through care.com and note that caregivers in our area are more around the $20-25/hr. rate.

We never went through with this at least not yet. I didn't want to deal with the business side of that, with reporting to IRS and taxes taken out, etc.

Hopefully, others who are doing this will give you better info. :)
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Instead, of paying you, hire a PSW to do the job.
Your 'job' should be being a sister (sounds like you are the model kind)
There is no price that can be put on your happiness and independence.. besides, she needs you healthy and happy. What good would money do you if you cannot enjoy it anyway?
If there is a way to look after your sister and yourself at the same time, go that route even if you split it between you and a psw ...but in taking care of your sister you have to also take care of yourself.
She is so lucky to have you for a sister and I am guessing she knows it.
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This is difficult, but is there some way to let her children know that you cannot assume this responsibility on your own. Let them know they will be blessed for helping out in any way needed. Otherwise, perhaps find an advocate who can speak to them. You should not be carrying all of the weight. Bless you.
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You can be her advocate. You do not need to be her only caregiver.
Several posts have given you ideas how to get help.
You should not be giving up your life to care for her. Would she want you to? Would she give up her life to care for you? Truthfully, we might say we would but in reality that is a tough ask of someone.
And more importantly let her do what she can for herself even if it takes her longer than it would take you to do the task.
There may come a time when Assisted Living will be a better option.
AND your sister should pay you.
Document, document, document.
Have a contract.
Any money that she spends for her care should be documented so that there are no problems later.
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Have you considered hiring an actual Personal Support Worker to help instead of her paying you? Then, you wouldn’t feel so tired and overtaxed, and she could still get the help she needs.
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Make sure this arrangement is right for you before you name a price. You have to be 100% “all in” - accepting whatever might happen. If this lifestyle doesn’t make you happy, carefully consider whether you want to start — quitting later could be nearly impossible. Saying you changed your mind after a price has been agreed upon could hurt feelings too.

Ask her to task one of her kids with financial duties/paying bills. This will protect you legally. You don’t want to be in a position where her kids claim she lost capacity, yet wrote your checks directly. Never write checks or send money through Venmo directly to yourself from her account.

This could ultimately be a 24/7 job. Accordingly, consider asking an hourly rate (rather than “fixed price” weekly rate). (Make sure that you also report and pay taxes on this income).

What about room and board? That has a value (taxable as income too). If you are an “employee” this should be spelled out up front to prevent a later rift. (Even if this is great with your sister, it would be helpful to have sign off from her kids).

Research the relevant salary range (considering your qualifications) then charge at least a little less (to prevent later problems with her kids). (It would be rotten if they ever accused you of “using” their mother for a free ride/financial gain—so retaining this research information and your rationale somewhere is important. I would ask them to all sign an agreement that acknowledges they are aware of the complete arrangement.

Caregivers usually have a flat fee related only to hours worked. Develop a time sheet for you to track your hours. Keep meticulous books.

Thank you for being a great sister! Your sister is very lucky!
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I agree with earlier posts. Your first act should be to hire help and have your sister pay for that. Determine a fair share for her to pay you for household expenses. That way you will be sharing your home, not being a full time caregiver. If you chose to act as her care manager you might agree on a weekly fee. Just managing medical appointments, PT, home help, etc. can take several hours a day!

You will know from other posts how all-consuming caring for a disabled person can be. It’s not fair to you or your sister to assume that role and then feel anger and resentment toward her family.
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Most home health aides that work for an agency make minimum wage and work 4-8 hour shifts.

It might be wise to consider getting more help for your sister during the day most weekdays. Consider asking family members, friends, and members of faith community to volunteer. Consider if your sister has resources to pay for an adult day program - usually weekdays in a personal care home or nursing home - which is probably the least expensive "paid caregiver" option. The next option is to hire a home health aide for at least a shift or 2 during the week. Residential care is the most expensive option but is covered by Medicare and Medicaid.
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I pay the caregivers who take care of my Mom $23/hour and time and a half if they work over 40 hrs. ($34.50/hour). My mother has Alzheimers.
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No less than $20/hr and probably time and a half weekends and holidays. And don't forget you'll owe self employment taxes to social security so that's 20% roughly off the top.
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I would get elder services involved they can provide a cleaner , personal care attendant for bathing , look for someone who does Physical therapy . This is a 24/7 hour job and you don't have much of a life so get some inside help - most people charge $20 -$30 . You will find you become responsible for everything - groceries , cleaning products , laundry , shopping , maintenance of home , lawn , trash , doctor appointments - it doesn't end . You end up not having a life because you have taken on a job that has no boundaries . Make sure you get something out of this and self care only takes you so far . Set boundaries and chores and get her children involved . Do consult a elder attorney if she needs long term care and plan on insurance or Medicaid .
she is lucky to have you as her sister .
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my2cents Aug 2021
Elder services as you describe are only available to people with very limited income where I live. Medicare will approve some limited PT and OT, but all the rest of it - even if slightly over the income level - is not provided by any free service
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You didn't say anything about sis paying anything to live with you. I would direct her entire income to pay for caregiving to reduce your own hours and allow you time out of the house.

There is no fair amount of money to pay someone who is completely in charge of a disabled person 24/7/365. Even if she paid you NH rate - the nursing home people work in 8 hr shifts. You are responsible all of the time. The $$ will not give you back your life or make things easier.

Use her money for as many hours as you can. Every cent she has coming in each month. If she has savings or other assets, dig in to that as well. Perhaps it will get you out of the house again. You might call her kids and let them know what level of care you provide. It's very possible kids haven't helped because she never asked them to.
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babsjvd Aug 2021
Keep in mind if she needs Medicaid, she needs all ducks in a row.. find out first what requirements are for tracking pay, vs what would be considered gifting/ harboring money… not as easy as it use to be !
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Your assistance is based on what? Do you cook special meals, is she incontinent, is she bed ridden, do you drive her to all her doctor appointments, do you bathe her. All of these are more hands on care which are determining factors in payment.
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Hi, my Pa. OLTL caregivers get 14$ an hour. Tell her time spent with her is payment enough! Relish each moment both of you! Instead of cash that makes her UN-impowered why not let her buy groceries or pay a percentage of utilities/taxes? Or both? This may improve self worth and moral for all, tc
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Maybe instead of paying you if money isnt important, she can pay for a caretaker to come 4 hours for a few days a week so you can get out and do things for yourself and have a life.
Look into places where she could have care part time and pay for that ( like a week a month) If she has financial means to do it.
Sadly the other issue is her children. How does she feel about that? Is she able to ask them for a visit so you get a break?
Lots of answers from others on fair pay but if money is less important then your feelings of losing your independence, perhaps her money is better spent on ways you can have breaks while she is cared for.
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My husband has dementia. I hire help through a care agency to come for four hours twice a week. The agency charges $24.00 per hour with a minimum time of four hours. The caregiver does not do any household chores (my choice). She does cognitive therapy, plays games, watches TV, etc. with my husband. I look forward to that uninterrupted time. I go shopping, have lunch with a friend, or just sit in a room and read. I think you would benefit from some outside help. If she is willing to pay you, let her pay an agency so you have free time. Caregiving is exhausting and sometime overwhelming. Take care of yourself first.
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I've been living with my mom and caretaking her for 15 yrs now as she is now 92.
It wears on you mentally and physically but God always seems to give me the strength usually to carry on. xoxo
Since now I'm on medicare I will be seeking a therapist to talk to as my brother's never want to hear usually about her heath due to her hoarding that we've dealt with for years.
My mom came so close to passing away in our apt., a few weeks ago and I contacted my daughter and both brother's in tears.
My youngest brother amazed me when he said, he's coming over to see her.
That meant so much to her that morning. :)
Men have never been strong enough like us women!!!
I've been fighting a breakdown for over 3 weeks from severe stress.
Very Blessed I picked up an evening job through my mom's kind of boyfriend.
Work for this 95 yr old 5 nights a week for at least 4 hrs each night.
I charge 15.00 an hour and I know I could be making more, but I do it out of love!
The 95 yr old does not like agency's as they never open up and talk to her with compassion and love like I do.
She is now in horrible pain with either a fracture in her back or a herniated disc and I feel her pain as I too have been in her shoes. She refuses to go to the hospital, which I understand totally.
Her doctor had her call a spine doc yesterday and she can't be seen until 2 weeks from now, but praying she can be seen sooner.
I told her last night she should let me take her to an urgency care center and will tell her again tomorrow night when I see her.
At times we all feel so helpless and mentally drained, as they show anger towards us at times and then later are very kind.
Always remember to take a few hours of me time as this helps greatly.
Have a Blessed Day and Take Care of yourselves as well.
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ToniFromRVA Aug 2021
You ought to call your insurance company & see if they cover any mobile X-Ray vehicle to come & perform one ASAP or mask up & go to ER.
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I think what she is trying to say to you is that she VALUES your help and is grateful. Just knowing that is enough for me. But if you could use some money to help you get by and also help provide more for your sister, you could look into programs like IRIS that help people stay in there home and provide financial help to get them the things they need. They will also provide funding for care givers that are either live-in or come in to help. That INCLUDES family and friends. Whoever she would want. They do not cover 24/7 but will pay you most likely for 40 hrs.

Let your sister know you love her! She is very lucky to have you! God Bless You!
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If she is on Medicaid there are waivers that you need to apply for. They will come in and help with her needs and medicaid will pay for it. The other way is look into a few of the agencies that give care I know I was looking at TLC here where I am they charge $11 an hour they will come in and help your sister do what she needs. It also maybe a good thing then they get outside stimulation talking to someone else than you. We were looking for my brother in law who has dementia short term memory loss.
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👋...
First things first..You are a blessing to her and she knows no amount of money can take the place of genuine love for Caring for Sis.

It is extremely hard mentally and physically noooo.. doubt about it! I know what that looks like and it's no walk in the park. You really need a lot of support, prayers and TLC.

You both can come to an agreement in Love and do what is best.

It does take money to pay bills buy food hire help..etc.......!!! so get counseling if you can this way you'll have everything in writing.✍

When ever money is involved especially with family attitudes change regardless of the situation so be prepared for that.

Pray about it and enjoy each other because you'll wish for more time when your love ones are gone.

Take lots of pictures and videos as I always say.

Live life to the fullest and walk in Love..that pleases our Father in Heaven..😇
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I'm glad you explained that your sister wants to pay you. Maybe you could have her share rent/mortgage and household expenses so she would feel she is contributing to her being taken care of, and you would not feel your were taking advantage of her disability.
If your sister has some money to help pay for her care, maybe she could pay for some additional part-time help to give you a break. If she badly needs it to be you who does her personal care, maybe she could pay for a cleaning service or other household maintenance so you would not have to be doing everything yourself.
As for this being your life right now, yes, maybe that is true. Look for small ways you can make bits if time and space for yourself as part of this life Take pride in taking care of your sister with grace and compassion.
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I don’t know what state you’re in but in California there is IHSS InHome Support Services, at the very least they can help you find out if your sister qualifies for hours of care and you can be paid as a family member. Also to see what else is available.
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You’re a very special woman for taking on the responsibility of caregiving. Instead of her paying you consider hiring a caregiver so you can get your own life back. You will still have her at night but all the money in the world won’t buy time.
You will probably hire and fire a few before you find the right fit but don’t give up. And don’t overlook independents, just make sure they have local references you can call.
God bless
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If she has the funds and wants to do this, let her. You will both be at peace. Check wha t caretakers charge (outside, non-family) and ask for that. If you don't want or need the funds, just hold onto them - possibly for her extra care down the road or an emergency.
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peggykimber44: Imho, perhaps you should start with your town's COA (Council on Aging) where the social worker will be available to answer some of your questions.
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The least I could find a Live In Caregiver was for $500 a week.

If it's not the money and you feel overwhelmed then you should ask for money to hire a Caregiver to come a few hrs a day or every other day, ect to give you a brake.

You might use her money to hire a weekly cleaning service.

You might use her money to have Dinner Delivered/Take Out once or twice a week.
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silky123 Aug 2021
Excellent answers. That would allow her to keep her sister with her, regardless of the children, and to have her own free time. Take the money.
I always believe in going to lunch with a friend, get your hair done and get a pedicure. Sometimes, working so hard, we forget to be women. I am 89 years old and only my hairdresser knows for sure. Hah.
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The pay should be based on what the job entails.
Is your sister invalid and you have to literally do everything for her? Bathing, transferring, feeding, etc...?
Is she incontinent and in diapers?
Does she have dementia and you can't leave her alone at all?
Being a caregiver is a job and no job should take over someone's entire life no matter how much it pays.
Consider what your sister's income is and what the household expenses are and then you can come up with a fair amount. Also, hire some outside caregivers a few hours a week to help with your sister and to give yourself a break. You MUST have some respite where you aren't caring for your sister. Think of what will happen to your sister if you get sick from caregiver burn out and exhaustion. She goes into a care facility. So please, get some time off.
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Caring for your sister is a wonderful thing that you are doing, but it is really too much for one person. Everyone needs a break now and then, and frankly, as she becomes less able or if your health status should change, your sister may require assisted living or long term care. Therefore, you would be wise to seek the advice of an elder law attorney who can create a work contract and lease for the care and housing you provide that will be acceptable in the future if your sister applies for long term care through Medicaid. You don't want Medicaid to perceive these payments as a gift of her money to you which if done incorrectly could be problematic. Beyond that, I hope that she has the resources or can tap into resources if she is low income to supplement the care you provide with outside help so that you can get needed respite. As for the money she pays you, you can decide what to do with it. You could set it aside for a rainy day for yourself or to help her in future for the little niceties that Medicaid patients often do without. I would also recommend that you help your sister organize her finances, so that a Medicaid application isn't too difficult. Again, the elder attorney can explain what is required. I wish I had done this with my parents before the crisis that precipitated the application. It was intense and difficult. Periodically check out the facilities in the area, possibly get her onto wait lists, and the like so that you are as ready as possible for the day that a new living arrangement is required. The more prepared she and you are, the better.
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I agree that seeking an elder law attorney is your best option. It may also be best to have your sister move to an assisted or full care facility. While this may not be what as an option, but I also feel that you are in way over your own abilities. 24/7 caretaking is very hard and is much more demanding than one could ever imagine.
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