Father and disabled five year old son laughing together on beach

We all know there isn’t enough support out there for family caregivers. However, there is some support out there. As a family caregiver — a spouse, sibling, child, other family member, or friend — you may qualify for financial assistance.

Some programs in the US provide family caregivers with a set stipend while others provide an hourly wage. You certainly won’t get rich as a paid family caregiver, but it can help replace some of the lost income and cover some of the increased costs of caregiving.

If you’re looking for information on what programs exist, we have another article on programs that pay caregivers to take care of family members. This post shares people’s experiences enrolling and using those services.

I can’t work now. I don’t have an income but thankfully my husband does. We make HUGE sacrifices in what we do/buy. A lot of medical supplies/private pay Aids are paid out of pocket. Sure, it would be a blessing if it was all covered. We paid over $10,000 to make our house handicap accessible. It’s HARD! – Andrea R.

I left my job 3 years ago to care for both my parents. – Pat E.

I provide 24/7 care year round. No vacations or days off. My mom is 89 with dementia. I get paid $0.00 for this care. Yeah I have to get her up, bathe, and dress her. Also prepare meals, do her blood sugar, blood pressure, and medications twice a day. I change depends for her. Depending on her functioning level I may have to puree her food and feed her. I handle her medical appointments as well. – Elizabeth B.

My daughter became disabled at 21 and I had to be her caregiver. In Alabama caregivers get nothing. I’m single so had to move us home to my mothers. She is 25 now but praying I can find a part time now. – Kim H.

There were so many times I had to chose between getting mom her med’s or paying a bill. It’s sort of what I am going through myself now. Mom was a little better off, since she had social security and my dad’s retirement, plus my pay. Me, all I have is my disability.  At the very least it puts a roof over my head, which gets rid of that stress. – Thom F.

The last day I worked outside the home was Aug 2, 2014. Lost my job, car, in massive debt I can’t pay. I finally swallowed some pride and signed up for food stamps. $194/mo is all I have coming in. I love my mom dearly. – Tom C.

My Mom quit her job of 35+ years to take care of my Gran; we did shifts – her, my brother, and me before she passed from cancer (she also had TN). I’m blessed to be a SAHM but I also have 2 daughters – 1 autistic and 1 bipolar/autistic, and a husband with multiple medical issues (2x heart attack, PE, diabetic, TIA, etc) and I have TN. Honestly, we sold our home and my Mom’s home now and we live in a trailer park 2 blocks apart. It sucks to be sick in America. – Maria E.

I have to take early retirement to take care of my husband who has Alzheimers with Lewy bodies dementia and Parkinsons. Plus he’s legally blind from glaucoma. We don’t qualify for SSI and my insurance won’t pay for in home csre, so at 62 it’s me. I just hope I can do it. – Vicky C.

I ended up having to use every penny I had as well as having to sell everything even my car so i could take care of my mom and dad. While i don’t regret taking care of my parents it changed my life in ways I wouldn’t wish on anyone. – Marsha H.

Life is interesting..thirteen years taking care of my husband who had a stroke with brain injury, dependent on insulin…took care of my father who died of emphysema and now have my mother who suffers with heart failure and diabetes. One day at a time..we are on SSI income with medical services and medicine going up all the time. Working on keeping my house and paying the bills each month. One day at a time..we are blessed and this too shall pass. – Carlene E.

Caregivers are heroic and save our country millions in Medicare/Medicaid dollars annually by doing this difficult work themselves, versus placing their loved one in a care system. – William W.

Getting paid or receiving some kind of stipend would definitely relief the stress and worry over money for sure. I haven’t found any solutions yet. – Barb G.

You can learn more about the different programs that provide financial support for family caregivers. Unfortunately, the US has a patchwork of programs, each with it’s own specific requirements, and many caregivers fall through the cracks.

The rules are different from state to state,county to county. In Prince William County,Va…they believe it is a Spouse’s Duty to take care of their spouse (I had to leave my job to take care of my husband),but if we lived 20 mins north,in Fairfax County,Va, I would be a paid caregiver! – Kimberly O.

Here’s how the programs work for real caregivers, like yourself:

I have been a paid caregiver to my hubby for sometime now, I’ve been home what seems like more then work. I am so grateful for this program, and even more so for the company I work for. Hubby hated new nurses coming out all the time giving his full medical history for every visit and never feeling any comfort or hospitality. I can recognize his needs before he does, and he too is grateful. – Shannon A.

I get paid. It helps, but I have to tell you the process in getting it took over 6 months and it’s a monthly battle trying to figure out all the red tape. You’re dealing with the government so keep that in mind. – Jeanne O.

I have a son. I am his carer and was on the carers payment and believe me it is not enough money to pay bills and live on. I gave it up and went back to work. But I still shower, feed, and dress my son before work. He can stay home a bit by himself till we get back and start all over again. – Valerie Z.

My father should have been eligible for this and was declined. – Sherry H.

I’m in Colorado and I get paid to care for my disabled husband. – Jessica C.

After many years as an unpaid caregiver for three different generations, I now qualify to be a paid caregiver for my adult medically fragile son who lives with me. Because of this, I can now afford his (expensive) special dietary needs, additional insurance that covers specialists who couldn’t/wouldn’t see him on medicaid/Medicare and to pay for uncovered medical expenses ie medications and his wheelchair. My son’s health is significantly more stable, it has greatly improved the quality of his life, but also mine. I’m no longer constantly torn between financial desperation and my son’s needs. It also saves the state money, as nursing home care would be expensive and as a family member I get paid a lower rate per hour than non-family members would. Win-win all the way around. – K.S.

In Kentucky I get a generous caregiver budget for my girlfriend. If we were married that wouldn’t apply. It’s not right. – Mike S.

In Texas they pay family caregivers, although you can’t live with the person. You can get paid 4 hours a day to be with them. – Heidi V.

In Texas there is a 6 month waiting list just for the paperwork to apply, even if patient is on hospice. If the patient has any funds over $2000 it’s a big fat DENIED! – Katherine W.

I get paid to care for my mother. We’re in California. – Kim D.

I get paid to take care of my son, but they will not take out social security for me for retirement. I don’t understand why not? – Colleen A.

Colorado has amazing benefits. You do get paid as a CNA to provide care. – Jessica G.

If you qualify for respite or nursing care in Michigan everyone can be paid except the spouse. The person that knows them and cares about their well being the most. The person that needs to be at every doctor appointment. It is so frustrating! – Danielle H.

I am in Maine. I don’t know about other companies, but the one I work for will pay you if you take the training. It’s all done online at home. – Cheryl M.

I am in the process of applying in California. The person receiving care has to be on Medi-Cal. Then they need a note from their doctor and a home visit. Fingers crossed that mine goes through. – Sharon K.

Yes, you can get paid in Illinois, but with stipulations. I needed to quit my job to be caregiver to my son and went through the process with the state, which took over a year. All they qualified me for was a respite care because the process took so long and I had already quit my job. Now the new governor coming in is probably going to take a lot of that respite away! – Nancy E.

In North Carolina you can be paid to be a caregiver for your adult children with disabilities. It’s not a lot and you can only get paid for 28 hours a week. It helps when you have to suddenly give up a job to care for your child. In our case, my daughter was severely injured in an accident over 3 years ago that left her a quadriplegic and with a TBI. I’m so grateful to have this income. I get paid through Independent Living. – Patricia W.

The state of Illinois has a program that I was paid through for over a year. It helped out a lot. I did it through the DHS’s DORS. Worked directly for my mother. It didn’t take long to do. In fact it was rather quick. Maybe 2 weeks? But with the state so messed up and all the budget cuts they were looking for anyone they could kick out of the program. And one day they showed up to do an unscheduled assessment. The case manager and his supervisor said my mom was too far gone and recommended a nursing home and kicked her out and that was that. – Aaron E.

In Illinois DHS DORS (Department of Human Services, Department of Rehab Services) only provides help for disabled people 59 and younger. I just got an email from them. They said go through Dept of Aging. Which I did and they said I would have to go through local senior services center, which told me the previous info I posted. So once again I’m in a dead end of endless chasing agency after agency. – Kelly W.

Yes, it is true you can get paid for caring for a family member. It’s very little, but better than nothing. – Judith M.

I am with vision home health care garland, Texas. It helps with my moms extras. – Angie P.

I get paid forty hours a week.. I only took up the option about a year ago. – Carolee S.

In Texas there is, but the waiting list is long. – Jewel K.

It isn’t the best deal. My niece lives in a state with generous caregiver benefits, and got paid. Then her dad died. She had no work skills or history and they lost the subsidized apartment. – Kathy G.

In Michigan they will pay anybody but a spouse. Our caseworker told us to get a divorce just a piece of paper! That’s crap we are still married! – Nikki D.

I live in the state of Arizona, I am a caregiver for my adult son. I work for an agency and became a certified provider. The agency can help you with paperwork to see if your loved one qualifies for services.If they do, you can become a certified provider and care for them. – Suzanne K.

Medicaid

In Georgia they have to be on Medicaid. My mom with ALZ will qualify for medicaid in the next year and then I can get paid to care for her as a registered CNA. – Sonja A.

If you live in Massachusetts, there are many programs that provide a money stipend for caring for loved ones in the home through medicaid. – Christine H.

I live in Ohio, I’m a certified caregiver for my adult daughter. I’m a independent provider through Medicaid and Department of Developmental Disabilities (DODD). It was a really simple process, requires CPR training, 8 hours of training, a background check, and a 20 page packet that I had to fill out. The worst part was the waiting; it took 16 weeks for me to receive my provider number. All well worth the wait, now I make a living along with caring for my baby girl! I thank God everyday for the fact it all worked in our favor. It took me four years to figure out that the program was available. – Scott T.

Only eligible for this if the loved one has Medicaid in Missouri. – Allyson L.

I get paid by Medicaid to take care of my husband here in Colorado. He’s paralyzed from his neck down following a car accident. – Ann T.

Oregon does, but it is a Medicaid program, so you pretty much can’t have much assets and there is a ton of other rules. And if you are a spouse then there are even more hoops to jump thru, as it’s a different program in Oregon, though still Medicaid. The process was supposed to take a couple months. Eight months later we finally got through all the red tape. – Dwight P.

My husband is disabled, C-4,5 quad. I am now able to be paid to be his caregiver. My hours are limited. Medicaid/Medicare keeps you stuck being dependent on them. My husband was a Master Plumber and could do some work from home on his computer. But, if he earns income, he loses his benefits. His medical costs are so high that we’re stuck. – Ann T.

I am in Maryland I have a 23 year old son with cerebral palsy, in a wheelchair and totally dependent of care. I left my job a year ago to take care of him full time. He has a caseworker, but they do not tell people these programs are available. I had to research and ask. Then they act like they know nothing about it. I pushed the issue and they found information. She applied for me to be put on his Medicaid waiver to be his paid caregiver. It has been a month I have heard nothing don’t even know what the pay would be. I hope everyone that needs this gets the help they need. It comes down to having to work but having to be home to care for them full time. I feel like there is either no help or very slow to get answers. – Linda S.

I get paid by medicaid to care for my mother. It’s a total blessing. – Angelina F.

Arizona has privately owned companies that hire family members or friends of family to provide in home care as well as people who just want a job. The client must qualify for care through state funded medicare. Client then gets assigned a company and caregiver. The client can request a specific company and caregiver to provide that care. More than half employees of in home care companies in Arizona are family or friend of the client. – Debra C.

I got paid thru Medicaid in Ohio to take of my Handicapped Brother. I took a lot of classes to get certified by the State. It’s not much, but it sure as hell helps. – Emma B.

In Tennessee if your loved one qualifies for both the PAE (physical assessment evaluation requirements) and the financial requirements for the Medicaid Choices program. However, I was told that in the near future Tennessee might do away with a family member being able to be the paid caregiver. For now it is in place. – Holly O.

In Illinois it’s a complete joke! I applied for this and was told my mom and I met the requirements. However, they would only pay 20 hrs a week and I had to go through training and get hired on through a company that works with the state. And if I was on the clock with them I wasn’t aloud to refill my mom’s meds or dispense her meds to her! Oh and she would have to apply for Medicaid and if she were approved when she passed away they have the right to put a lien on her house to repay back whatever they paid me! So I would have to go through training for someone to tell me how to take care of my Mom when they have no clue then they slap on a lien! We are sinking financially I have no choice to try to look for a job now and pray she’s ok alone. – Kelly W.

I was told I could be paid to care for my mom here in Illinois. But once she passes, her estate will need to pay the state back all the salary it had paid me. So, ultimately, my mom really has to pay me if we choose that route by taking it away from her beneficiaries. – Cindy H.

Each state has different Medicaid programs, so run a specific state Medicaid web search. There are also other options for paying for senior care services such as reverse mortgage or viatical settlement. – A.F.

Consumer Directed Attendant Support Services

I’m my fiancées full time paid caregiver. He has a Traumatic Brain Injury and Epilepsy due to his TBI. He is on Medicaid, so there is a Program so that you can be a paid caregiver called CDASS (Consumer Directed Attendant Support Services). It’s a home care choice for people with disabilities. Doesn’t matter if you’re family or not, if your loved one qualifies the caseworker determines how much care they require and that determines how much “allocation” (money) the state allows per month. The loved one can have more than one caregiver. They can have as many as they want, but you have to stay within your monthly allocation amount. Before this program was brought to our attention I was paid through a Seniors Resource Center so there are other options out there. Please be aware that it’s not the same in every state. I live in Colorado.

Community Based Alternative

In Texas it depends, I’m a paid caregiver for my adult son, but not until he was accepted for Medicaid and then we signed him up to a program called the Community Based Alternative or CBA. They pay me for 21 hours at minimum wage. It was a long wait, but we had nothing but time. He sustained a brain injury in a auto accident at age 30. It seems as though Medicaid has a don’t ask, don’t tell policy, so you have to ask. – Jan C.

Agency on Aging

If you have an Area Agency on Aging, that’s what it’s called here, you can ask them for help. I can take care of my mom and get paid, fill her meds and what not, but since she owns her home she can only get a voucher for $300. She has to pay whomever cares for her. Then she sends the signed paper to Agency on Aging of Westmoreland Co, then she is reimbursed. If she sells and rents a small apartment then she qualifies for more help. – Heather G.

Contacting your Dept. of Aging would be your first step. They will set an appointment to assess mom and her needs. My mom is non-ambulatory but was only given 15 hours a week. I had to go through my state rep to get a reassessment and I’m now at 22.5 hours a week. I had to go through a background check, fingerprinting and 3-day training class with Help at Home. I was told by the caseworker for DOA that I would get more hours if we didn’t live together, since they expect me to do all the other work anyway. – Michelle C.

I live in Arkansas and the Agency on Aging pays me two hours a day. It’s a joke. I am here 24\7. – Janet C.

In Illinois you can thru the Dept of Aging. Help at Home is the agency that I am paid thru for 22.5 hours a week at $10 an hour. Dept of Aging assesses the patient and determines the amount of hours that will be allowed. I am not allowed to give meds on company time. I had to give up POA to my brother. I am the only family member caring for mom. I am with her 24/7. The amount of hours paid is an insult but better than nothing. – Michelle P.

Supportive Home Care

It was a long processes for me in the state of Wisconsin. It took from my first initial phone call in February to receiving my first payment in July. Call your local Aging and Disability department. You can get paid Supportive Home Care (for doing laundry, cooking, errands etc) and then they have Supportive Home Care (for anything hands on…bathing, changing etc) you can make a decent amount of money. Plus the program is also to help keep your money in your pocket. They help pay copayments on prescriptions, if the person needs depends, disposable pads which is help and they have it delivered right to your house. It is most definitely worth checking into it. – Dawn

Veterans Benefits

If you take care of a veteran, there is a benefit called Aid and Attendance available through the VA. I quit my job two years ago, moved in with my Daddy and he received an additional $700 per month to give to me for taking care of him 24/7. It’s not much but, it helps. – Stephanie T.

Rhode Island does not cover it unless you are 50% below poverty level and then it’s a huge waiting list to even get into the program if you qualify. Veterans affairs is even more bush, they don’t cover crap unless it was combat related. If not then ‘it’s we can give you a Dr or put them in the VA nursing home.’ If you have ever been to the VA you will understand that going to the local veterinarian would be a better choice. – Kevin S.

I’m in Tennessee and get paid through my papaws VA benefits. Differs in every state I guess. I’m sorry you all can’t get paid. Something should be done. – Elizabeth R.

I get a monthly stipend from the VA to care for my husband. Post 9/11 disabled vets and their caregivers should look into it. – Katy C.

In Florida we have VA Aid & Assist. My dad was a veteran. I get it for my mom. I am able to work and have someone with her when I am not. – Sandy H.

I’ve been my husband’s caregiver since November 2003. He became disabled due to service in Desert Storm; he was one of their guinea pigs that they injected with pesticides. The VA turned me down as his spousal caregiver since he’s not bedbound. – Glynnis P.

My husband has MS. He was also in Desert Storm and given a huge cocktail of unknown vaccines. We are currently pending on Aid and Attendance as well as SMC’S for various loss of use. I know the caregiver stipend is for post 9/11 only and for injury and not illness but there are other ways to get compensation, don’t stop fighting. – Tricia R.

Health Insurance

Thank God, my mother took out an in home health care insurance plan back years ago that actually pays for a family member to care for her. If we didn’t have that, to where I’m paid to stay home and care for her…we would be sunk! Best decision she ever made by far! – Rita J.

I took care of my sister the last three years of her life.. Her insurance company did pay me to take care of her, but I was only able to get paid one month out of the year because I was a family member. – Jennifer G.

I’m getting paid to care for my mom. I had to become a CNA and register with a state-approved agency first. We’re in Louisiana. 50 hrs/weekly. It’s through her long-term care insurance. Still, it’s working out well. – Ruby D.

Shared Living Provider

Here in Massachusetts, I get paid (tax free) to be a Shared Living provider to my special needs brother-in-law. MA also has a program to pay caregivers for the elderly (even their own aging parents). It is a win-win all around. Group homes (for special needs) and nursing homes (for elderly) cost the government a small fortune for each individual. The brother-in-law living in a MA group home costs the government approximately $300,000 per year. To care for my other special needs brother-in-law, I get paid $30,000 per year, tax free. Just look at that massive difference! Government saves $270,000 annually and I make a living wage. Win-win. – Kim N.

Personal Care Attendant

In Massachusetts if the ill individual is covered by Masshealth then there is a strong possibility of qualifying for the PCA program. They assess, and approve hrs and a wage and Masshealth will pay someone to be the personal care attendant. It is a God-sent! Spouses can not provide the care but they can oversee the caregiver. I don’t want anyone having the difficulty we did getting enrolled. – Tiffany L.

In-Home Supportive Services

In California, there is the IHSS program (In-Home Supportive Services) via Dept. of Social Services for low income patients. I received payment for taking care of my mom, and later on, my husband’s uncle. – Penny F.

California has IHSS. However, you have to have SSI or MediCal to qualify. There is a MediCal waiver but it only applies to the developmentally delayed. My son is blind so we don’t get it. – Kassidee R.

In CA it’s called In Home Support Services. My 95 yr old Mother has 2 caregivers and I am their weekend relief and standby in case they need a day off or sick. – Debbie M.

If you have a special needs/disabled child/adult you can. It’s called In Home Support Services and they don’t go by family income, Bill Gates could get it! – Shawna S.

I get paid to take care of my disabled daughter through a federal SSI program administered by the state and county; it’s called IHSS. Annie A.

In California we have In-Home Support Services. You have to be low income, which I became after Part D went into effect years ago. I have multiple sclerosis and have a caregiver. Family member should not feel guilty or greedy. If you have to leave a job or cut back on hours, know that there are resources to get paid. – Janice V.

We have a support program here in California, but please read and be aware of issues that can happen. We took in my 90 year old mom-in-law after a long hospital stay and rehab. She is now on hospice care. We had to shift our work obligations to accommodate her needs. We knew that IHSS in California would take a while, but we thought it would be more like a month or so. It has been over three months, as she had to re-qualify for the support program as everything established to that date cancelled because she was in a facility over a month (she had received IHSS benefits for many years up to now). When she is finally approved again, she can “hire” me to be her caregiver. At that point I wilI need to go through the process of being approved, trained and fingerprinted, which may take possibly (they said) another 6 to 8 weeks. Now I realize that can mean much longer and I can’t do anything about it ahead of time. The good news is Mom is doing wonderful here at home with us. Needless to say, we now have some challenges financially to make this work. We will make this work no matter what, but I think it’s wise for anyone considering using a support program to realize that a any support program has many steps to quality for and know that the pay is minimal. Although she will be compensated back to the time she was out of the hospital, it would have been good to know that payment might be as much as six months later. Maintain your work status, if possible, until the support resource is established. – Patricia C.

Caregiver Homes

I am actually a Social Worker who works at an agency that reimburses Caregivers through Medicaid for caring for a loved one in Massachusetts. The company is Caregiver Homes and they are in Massachusetts, Connecticut, RI, Louisiana, Ohio, and Indiana. – Christina H.

Guardians of Children

Parents of disabled children living in New York can now be paid, as of April 2016. – Bambi K.

Tax Deductions

Talk with your tax preparer. I do know there are tax deductions for caregivers. The amount would be deducted from gross income and your taxes lowered by your tax bracket. – John W.

The only thing I am aware of is the caregiver amount we can claim on our income tax. – Anita K.

Private Pay

My mother does not qualify for any state funded program so she pays me herself. I’d love to do it for free but cannot. She would have to pay someone whether it was a caregiving agency or a nursing home, so why not me? Besides, I am much much cheaper! Been this way for 16 years and it’s worked out fine. I feel bad for others who cannot afford this. – Beth I.

 

Ready to see if you could get paid as a family caregiver? Learn more about the different program and requirements.

The sad reality is that our society does not value the elderly, ill, or disabled enough to provide support for them or their caregivers.

This needs to change! We need and should have programs in place to provide care for our elders that are straight forward, easy to access and compensate the hardworking individuals out there who lovingly care for those that require caregivers. – William W.

We all need to speak up and demand that the government and the insurance industry stops relying on unpaid family members and starts stepping up to the plate.

Some comments have been edited slightly for clarity or grammar.

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

Related Articles

Wash

Wash

She showers once a week, and for the next six weeks—approximately four months into our new pandemic normal—I will be the one to bathe her. Her...

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

88 Comments

  1. I can’t work because my daughter has autism and. And the doctor told me I can’t work do to her condition what should I do

    Reply
    • Same here my son does to I try to work I have no family help I offered to pay ppl still no help what should I do

      Reply
  2. Lots of replies and or comments…”BUT” no links no information on how… this was a total waste of my internet search…
    UGH!!! frustrated even more now!!!!!

    Reply
    • The programs differ by state, veteran status, income, age, gender, marital status, etc, a whole host of factors that make it too specific to give real advice. That’s why hearing from real people about how it actually works is helpful. There’s more information on the different programs here: https://www.thecaregiverspace.org/paid-to-be-a-family-caregiver/

      The best thing to do is talk to a social worker, who can give you specific advice based on your situation.

      Reply
      • I take care of my son and my fiance I’m a caregiver for both of them my fiance is a veteran and he’s got PTSD and I take care of them for everything I get them up motivate them to take a shower get him dressed feed them take him to his appointment different things like that my son I’m a caregiver also he’s not a bad veteran but I take care of him also feed them some get up to the bed clean clothes and stuff like that how do I go about getting paid for doing all that are these two people can someone give me ideas phone numbers or someone I can call on this matter

  3. Is there anyway to get help with Christmas this year.

    Reply
  4. I am not working because of my health, but my husband is disabled he don’t drive. One of our daughters that live with us drive but she works. She helps when she can, I do all the driving taking one daughter to work and one to school. But I take him everywhere he needs to go. I have tried for my disability, but what all help is available for us. We are living off only his income, our daughter is working for college fees

    Reply
  5. I was wondering how i can gwt paid taking care of my 2 children with disabilitys

    Reply
  6. Does anyone know if there is a way that I can legally claim my sister on my fed taxes under earned income. I am on disability she’s special needs child adult I do not work I also receive a reduced pension. Maybe if I charged sis? I am her legal guardian. Our mom passed away 20 years ago we live in Lake County Indiana

    Reply
  7. This does not happen in Pa. when your spouse is on Medicare. They send you to the office of aging and you end up not receiving any type of help

    Reply
    • My dad has MS. His wife of 29 yrs walked out on him in December of 2012. I was a part time caregiver to him for almost 7 years but recently moved in to be a full time caregiver to my dad that is confined to his bed 6 months ago after he was misdiagnosed as supposedly aspirating when he eats or drinks so he was placed on in home hospice care with me as the primary caregiver and my 22 year old son that helps out is the only help I get. The hospice nurse comes out once a week for a check up. I more less abandoned my own home and responsibilities to be with him which he acts like is no big deal for me. I contacted medicare to find out what resources are available to pay me something since I can’t work to be available for his required 24/7 care. Unfortunately, they offer nothing for me but I found out hospice is already being paid 156.00 per day for every day that he is enrolled in at home hospice. Isn’t that nice. I give up my life for my dad, changing diapers, catering to his every need, while our government pays hospice to do nothing other then just having him down on paper as a long term hospice patient. They get paid for me taking care of him! Almost 5000.00 a month! What a joke and a waste of medicare dollars. No wonder this country’s healthcare system is so screwed up. Oh well, nothing I can do other than let others know…

      Reply
  8. What angers me is when not ALL family members that CAN help WILL!!! Instead they leave it to the very few participants to do it ALL. Oh but I’m sure they’ll be crying at the funeral like she meant something to them! Yeah right! What’s wrong with those people? Every family has them I’m sure! Just frustrates me to no end!!!!!

    Reply
  9. I didn’t get paid.. now I’m taking out a loan on the house to pay for her care…

    Reply
  10. I’m solo with Two handicapped boys and Idaho does not pay a dime.

    Reply
    • When the child turns 18 you can apply to be a certified home provider. Look into it at age 17 when you also apply to be their guardian. In order to qualify the person you would care for has to qualify for adult social security. The pay is about 356 a week. I plan to do this soon as I have a special need daughter who is almost 17 but mentally 8-9. who will need to live with me long term. I would ask your local health and welfare program about this

      Reply
      • That is Gr8 What state is this?

  11. I did after several years, not because I had to be paid to care for my own daughter, but to save my sanity with having aids in our home more hours then our privacy could take. It was use the hours or lose them . That was not an option. Plus even with aids here I still did as much for my daughter as they did.

    Reply
  12. Our Mum kept telling me to go and get the necessary papers to apply for her caregiver but I did it all for love.She took care of us and it was natural to reverse our role when she needed help.It was hard and it’s been two years our beautiful Manoula has passed and my grief hits me every day.God Bless you all.❤️

    Reply
  13. Deleted diagnoses & prematurely terminating waiver support contracts = forced free labor /Slavery while living in poverty without pay for services rendered. Welcome to the system

    Reply
    • Every state gets fed funding and and there is state funding too, to help families care for loved ones The problem is that state chooses if they want to give that fed or state funding to these programs that would allow families to earn income to care for family members and they also decide how much they want to offer to these programs if they did allow it or they can also choose to just use it elsewhere, ignoring the importance and the needs of health care workers caring for family and have no other means. What state are you in that won’t help?

      Reply
  14. This made me LoL. It’d be nice, and we all sure deserve it, but I don’t see it happening any time soon.

    Reply
  15. I have been my moms cargiver since she had a stroke in 2007. i have never dreamed of getting paid for caring for her. I have been told by several people that i should look into.. We live in Indiana, where do I go to to check into this??

    Reply
  16. No. I don’t. Two parents. No pay. No benefits – except for helping them. That is priceless

    Reply
    • In Kansas it is a 7-8 year minimum wait to get the waiver needed for a caregiver for my disabled 6 year old son. I am a single mom of 4kids currently living off his SSI.. this is insane! I’m looking for states that don’t have wait-list and prepared to move!!

      Reply
  17. Yes, once my son turned 18, I became his paid primary caregiver. Love the photo of Davey and his dad; I know the family and Davey has the same rare syndrome my son has

    Reply
  18. I was never paid to be a caregiver for family members. It is just “what you do” for family. If I looked at it as some kind of paying job, then it would have lost the meaning, though I did spend a lot of $ taking care of people. However, when I was respite caregiver for developmentally disabled, did get paid and it would never have been enough for 24 hours a day work.

    Reply
    • That is fine if you can afford to do everything out of love. Unfortunately, most people continue to have Bill’s and other financial responsibilities that can’t be paid on love. I know I would feel kinda funny if a had a pretty good check and pension coming in every month while one of my kids were taking care of me 24/7 for free losing their own assets and setting their future up for financial ruin. 24,/7 care costs about 10,000 a month for a private aid. What’s so wrong with charging something since after all, they are saving a ton of money not having to shell out thousands every month.

      Reply
  19. I took care of my mom for 15 years. She was able to pay her caregivers while I worked. I became the family caregiver when my dad died. None of my siblings contributed one penny to her care but when I figured things out, I contributed over $160,000 for her care. Groceries, out to eat, day trips, to and from doctor, taking the caregivers to and from the train, etc. And when my dad died and I came back to work after the bereavement 3 days, I got laid off. Now I need the help and can’t get it. And my brother died last month. I have no clue what Senior Services offers.

    Reply
  20. Can I get paid in West Virginia

    Reply
  21. No I would not want to get payed for caring for my mother her love for me was enough I would do over again

    Reply
  22. My Mom insisted that I transfer money from her bank into mine, every month. I ended up spending most of the money on her, so it was a win/win. We did this for 10yrs until her death.

    Reply
  23. I was told No, I care for my daughter and she is 11 but if she was 18 they would.

    Reply
  24. I am looking for info for my best friend that lives in Minnesota.He has a wife he has been caring for for 12 years that is in stage 4 Alzheimiers. He is starting to really lose it mentally with all the 24/7 care he provides. He has to turn her every 2 hours and every thing else that goes with it. He believes that his marriage vows take presidency with in sickness and in health etc.So, I am trying to find him some help on what he can do as he is financially strapped.Please Respond to this with help agencies and what he has to do to maybe get payed something to lessen the Great Burden on him.He and I both have head trauma and had have hard times doing and remembering many things. So, if you would give simple lists of what are his options here. Also he lives in a rural area and I need to do what I can to help here.Any help with this is appreciated.

    Reply
    • I’m a 24/7 caregiver for my 95 1/2 year old father. How can I get paid. I cooked all meals, clean and take care of him now on a wheelchair

      Reply
  25. I’m 53 and have a lot of problem and my husband is my caregiver and I need help and he was wondering how to go to get paid for taking care of me please let me know thank you Virginia klink

    Reply
  26. I was paid by one thing—and one thing only—-LOVE.

    Reply
  27. Yeah…being doing it for 12 years in CA…I “fall through the cracks.” Granted all the bills are paid through mom’s income, but that doesn’t help my retirement picture.

    Reply
  28. NOT A CENT….WE DID IT BECAUSE WE LOVED THEM.

    Reply
  29. Sounds pretty slim to me. Have examined many avenues all leading to a big fat, NO!.

    Reply
    • Me too, I live in Ohio and have been caring for my mother for 16 years. Everytime I get a lead on something it ends with a NO!

      Reply
  30. So relieved and happy my daughter sent me this website address.

    Reply
  31. Get nothing here​ in England, matter of fact it costs me to look after wife.

    Reply
  32. Ky does. It’s in transition but I am paid through the Medicaid Waiver program to take care of my quadriplegic finance.

    Reply
  33. Not in washington or Arizona. I’ve been my husband caregiver for 14 years. He is 100% disabled veteran with traumatic brain injury

    Reply
  34. Im glad to be paid through the VA to take care of my husband

    Reply
    • Az. And Washington VA don’t pay caregivers. I have been my husband’s caregiver for 14 years. He has traumatic brain injury. Your lucky your VA pays you. What state are you in?

      Reply
    • Washington state or dc?
      Cause it’s a nationwide program
      Im in Ohio. But I’ve had it transferred from California, to Colorado to where we are in Ohio now.

      Reply
    • You apply through the caregiver program. Your local va hospital will have a caregiver coordinator. Go to the bottom of this webpage and put in your zip code. Give them a call

      http://www.caregiver.va.gov/

      Reply
  35. California pays us to take care of our adult disabled son. He has severe cerebral palsy and requires total care. We are paid caregivers through In Home Supportive Services and the Waiver Personal Care Program. The combination of both programs has made a huge difference for us. We also receive 24 hours per month of respite care, but we can’t find anyone to work the hours!

    Reply
  36. NJ Pays, I’ve been compensated for a year now.

    Reply
  37. I am the one from Maryland quoted in this article. Happy to report that I started receiving pay in October. Such a big help. I wish every state would offer this to families stuck between needing to care for a loved one but needing an income.

    Reply
  38. I’m in Quebec, Canada and they don’t pay here either. I’ve been caring full time for my disable son for 28 years. (Spastic quadriparesis)

    Reply
    • I hear healthcare in Canada is amazing though

      Reply
    • Depends what is covered….doesn’t help when it comes to life essentials for a caregiver.

      Reply
  39. In states that family members are paid to care for persons, including their children with disabilities, this is at RISK, since it is through Medicaid, because of the current proposed repeal of the Affordable Care Act.

    Reply
    • Pray not because this is how I’m able to keep my son at home with me, separate grain trailer many years ago and thankfully the state of Kentucky helps me provide for him It’s My Life

      Reply
    • Yes, IHSS and other programs are definitely going to be at risk. Too bad “the powers that be” do not realize that nursing homes and institutions (group homes, same thing) cost the govt. A LOT more. With the elderly, it can be double the cost, with the severely disabled it can be 3-4 times the cost. But maybe they’ll get rid of long-term care and just throw them in the streets… (sorry, I’m tad bit upset about this, :-/)

      Reply
    • But is the currently proposed repeal of the Affordable Care Act also putting nursing home and assisted living unit residents, whose care is partially paid for by Medicaid also at risk then? Many nursing home residents have actually exhausted their own savings, making them eligible for Medicaid

      Reply
  40. Texas has programs, long waiting list depends on the disability but worth it. When I got home sick I checked Louisiana and Alabama the folks I spoke with politely told me just stay in Texas.

    Reply
  41. Colorado pays. I am a paid caregiver for my 8 year old son with significant disabilities.

    Reply
  42. California doesn’t want to give any hours….I was dying on the couch and couldn’t explain myself..too sick ( 6 yrs, ago) my son just happened to pop in and help speak for me…they gave me 34 hours for the month finally – joke…you have to fight for every benefit here and it’s killing the majority broke any monies come through

    Reply
  43. National Health is a good solution. Medicare for All would be so much cheaper and easier to implement….

    Reply
  44. I have been doing caretaking responsibilities for 26 years, with my husband working full time and me working part-time. There were many days when I was running on four or five hours sleep, as i had to meet a deadline then be up to get someone to the van or bus in the mornings. Five years ago I myself became disabled with an undiagnosed issue and was unable to drive which meant I was unable to work. For five years we have lived on my husbands income alone, with social security denying us again andf again and us appealing again and again. the issue has finally been diagnosed and I am on the road to recovery although probably will not bee able to drive again to Spring. Any caretaking funds we have access to require us to fit in boxes that we can not fit in as we have an ultra rare syndrome. So we are on our own doing the best we can a day at a time.

    Reply
  45. It’s good to know these programs actually work. All the hoops they make you jump through!

    Reply
  46. Living in Utah, can’t qualify for anything at all. Not even Medicaid. Can’t even apply for Medicaid because we don’t have children.

    Reply

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.

%d bloggers like this: