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My wife has been declining in health since her brain surgery in 1990. She started by having migraines, seizures, severe depression, etc. She has been diagnosed with a right-sided weakness and now is totally bedridden since her leg muscles have atrophied.


She is currently under hospice care in a local retirement home, however, I will be taking her home on May 26th with the hospice following her here. The reason she is being brought back home is due to the cost of the home, which is $3,800 per month out-of-pocket!


My question is, how/can do I be compensated for my care as the primary caregiver?

who do you think is going to pay you ? Yourself? No one says you have to have hospice care. You can do it yourself if you’re feel your up to the task. I took care of my wife. She had Hospice. It was fully covered by Medicare, but they only came once or twice a week. I fed her washed her, changed her diaper and try to comfort her.
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Possibly a few hours a week IF she qualifies for Medicaid (the welfare version of health care due to very limited income). MediCARE does not pay someone to take care of her because they pay for the hospice and hospice is very limited on the home health care they provide.

Bottom line is some people accrue wealth to afford in-home care and others do not. Those who don't usually become unpaid help - relatives, friends, etc. Whoever agrees to help. Very doubtful that you as a spouse are going to be paid unless you just decide to pay yourself out of your joint income...and you will need to talk to cpa to set up appropriate employer/employee records keeping and pay tax on the earnings.
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With our government continuing to make major cuts to health care in general and more specifically to seniors / disabled - we really never know what is happening except that 99.99% isn't good for millions of low income and seniors. Make that 100%.

Contact an attorney.
A family member getting paid as a caregiver is a law. Although now I question "who pays?" - the cruelty inflicted on millions of Americans due to this administration is beyond belief.

Get whatever benefits you can now before its too late. Millions of us will die due to no federal healthcare. This is why I am one of the millions of protestors in the streets nationwide.

Their current bill passed Congress. It likely won't pass the Senate ... but who knows.

Millions of Americans will be affected in the worst of ways if they have their way ("millions for billionaires" and who cares about the rest of us?)

Supporting the low income, disabled, elderly is closely, if not now, 'a humanitarian right in America' a thing of the past. With this administration, I am hoping that we'll have a democracy in four years. I really doubt it.

Gena / Touch Matters
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Bobby40 May 23, 2025
Political statements don't really address the issue of the poster
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I have a neighbor who does that for her mother and aunt, she doesn't live with them but goes every day to bathe and feed them. She suggested it for me when I moved in with my mom after being diagnosed with dementia but one had to be on Medicaid and mom was not.
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my2cents May 26, 2025
True, Medicaid provides some daily assistance and a family member may qualify to be the designated caretaker for pay. However, it's very limited on the hours they will pay. No one is going to take care of a relative full time hours and get paid full time pay for what they do via Medicaid program. And you only get Medicaid if you are very low income/bank accounts/etc.
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I think OP is best advised to ask locally (Hospice social worker might be a start) what is available in their area. Even things like exactly what services are provided by Hospice varies from place to place. For example, in my area the Hospice facility is only available on a respite basis, five days per year I believe; I don't know all the details because we never used it. I've also seen discussions of Hospice volunteers, but that was never offered to us. (I cared for my MIL in our home while she was on hospice.) Also in my state there is no program that would pay a spouse to care for their spouse. That may be a possibility in other states. All this to say it's going to be difficult for any of us to give accurate answers.

I will say that $3800 per month for a SNF sounds really inexpensive to me. Perhaps Medicaid is an option if paying out of pocket is a hardship.
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Find a way to pay the 4,000 dollars a month for her care at the facility. Get an elder lawyer appointment asap and discuss splitting assets so she may qualify for Medicaid. If not, spend down for her care in the facility. You do not want to be a 24/7 caregiver to a bedridden patient dependent on you for everything. Think about it.
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You have probably seen the ads on TV for loved ones getting paid to care for family. That's Freedom Care, but what they don't tell you is that Medicaid (or the state) will NOT pay for a spouse to care for a spouse. It is not an option. Believe me because I am in that boat. I had to quit my job to care for my husband after his stroke. Long story short... if you bring her home, PLEASE start the process of requesting help 30 days BEFORE you bring her home so that you can get the assistance you will need, even just a few hours per day. If you wait until she is home, you will be doing ALL of it alone for a month or longer and it will be tough. My prayers are with you.
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Reply to AnnEMouseCares
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Are you really sure you want care responsibilities? If you have considered every angle and still want to this, consider the $3,800 saved every month as your pay.
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Medicare covers Hospice, so why are you paying for this?

Need more information to understand the reasoning and your statement.

If you do this as you have outlined, you are not entitled to any compensation. My mother was in hospice for a month or so in AL, they came in, cost her nothing except her usual AL charge. Your wife can go into a regular Hospice facility, we did not move her as we knew she was at the end of her life, she was 100.
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JoAnn29 May 16, 2025
Hospice does jot pay for the facility cost, just the care.
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Are you honestly prepared to do the 24/7 care that is now required to care for your wife, like changing her diaper every few hours, turning her in the bed every few hours, preparing her food, making sure she's getting her medications on time and the like?
And if not, DO NOT bring her home as you will be setting you both up for failure.
Hospice does nothing more than sending a nurse once a week to start and aides to come bathe your wife about twice a week. That's it as far as any hands on care. The rest will be on you.
If money is an issue please have the social worker at the facility where your wife is now, help you apply for Medicaid for your wife so she can remain where she is at, and where you can just be her loving husband and advocate and not her burned out and overwhelmed caregiver.
And to answer your question about being paid as her caregiver, the only options are if your wife is on Medicaid as they will pay for a few hour of caregiving per week, or if she is a veteran, the VA does offer some pay for caregivers as well.
Other than that your wife would have to pay you out of her money to care for her, but of course she would have to agree to that.

My late husband was under hospice care in our home for the last 22 months of his life and I was his primary caregiver. He also was completely bedridden and it was very hard work for me, yet I never once expected to be paid to care for him as he was my husband and I knew that I would do whatever it took to care for him until the end.
So just know that just because your wife is now under hospice care it doesn't mean that she will be dying anytime soon. This can go on for some time, so if you're not prepared to do her hands on care for many many months even years, it's best to leave her where she is at and apply for Medicaid.
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tokyosteve May 20, 2025
Your answer was very informative and enlightening.
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Hospice is covered by Medicare.

LTC can be covered by Medicaid plus her SS income if she qualifies both financially and medically.

If she isn't imminently, actively dying... why is she in hospice and not LTC? I apologize but I don't understand your post. More information would be helpful.

I'm calling this post to the attention of the admins so they can move it to the Questions section.
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AgingCareCM May 15, 2025
Thank you, Geaton777. This has been moved to Questions.
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