My husband is 52 years old suffered a pontine hemorrhagic stroke. He is on life support at home. I'm his only caregiver. Any advice?

I'm so sorry for this distressing situation. I know you are doing your best and want the best for husband. Here's what I found through a ChatGPT search when I used your situation as the parameters: 1. Medicaid (State Medical Assistance Programs) Even under 65, a seriously ill or disabled person may qualify for Medicaid, which can cover: Home health services, including skilled nursing and personal care aides Medical supplies and durable medical equipment (DME) PCA (Personal Care Assistance) services, where even a spouse may be paid in some states (e.g., Minnesota via the CSG program) Home and Community-Based Services (HCBS) Waivers for ventilator-dependent individuals Medicaid eligibility depends on income and assets, but many states offer Medically Needy or Spend-Down programs if income is too high. 2. Social Security Disability Insurance (SSDI) If the 52-year-old has a sufficient work history, they may qualify for SSDI, which provides: Monthly cash payments Automatic eligibility for Medicare after 24 months of SSDI approval Retroactive backpay for delayed approvals The spouse might also qualify for caregiving benefits through certain state programs once SSDI is in place. 3. Medicare (If Eligible via SSDI or ESRD/ALS) Although typically for age 65+, people under 65 can qualify early for Medicare if: They receive SSDI for 24+ months They have ALS (immediate eligibility) They have end-stage renal disease (ESRD) Medicare would then cover most home medical needs, ventilators, equipment, and part-time nursing care. 4. State-Based Paid Caregiver Programs Many states, including Minnesota, offer paid caregiver support programs: Consumer Support Grant (CSG): Converts care services into a monthly cash stipend (can pay spouse caregiver) PCA Choice: Allows hiring and paying a caregiver of choice (sometimes including a spouse) These programs typically require Medicaid or Medical Assistance enrollment. 5. Supplemental Security Income (SSI) If the disabled individual has limited income and assets, they may qualify for SSI, a federal program that also provides: Monthly income Automatic Medicaid eligibility in most states Support for basic living needs 6. Nonprofit and Charitable Aid Organizations that provide financial help or caregiver support: Family Caregiver Alliance The Patient Advocate Foundation United Way 211 (local community aid and emergency services) Disease-specific foundations (ALS, MS, Muscular Dystrophy, etc.) 7. Other Resources Veterans benefits if applicable (e.g., Aid & Attendance) Private disability insurance (if purchased before illness) Life insurance accelerated benefits (cash advance for terminal illness) Reverse mortgage if the couple owns a home Tax deductions for medical expenses and caregiving costs Next Steps: - Apply for Medicaid/Medical Assistance through your state (or county Human Services office). - Apply for SSDI or SSI via Social Security: www.ssa.gov - Call your state�s Aging and Disability Resource Center (ADRC) for help navigating local programs. - Explore local caregiver pay programs (e.g., CSG or PCA Choice if in Minnesota). - Reach out to nonprofits for financial support and advocacy. I wish all the best for the both of you as you navigate this unthinkable situation. Blessings!

First I must say that with everything your husband has going on that he NEVER should have been able to leave the hospital, but instead should have immediately been placed in a skilled nursing facility.
I find it disturbing and maddening that this can even occur here in the U.S.
You can call 211 to see what resources are available in your city/county, but in all reality you need to call 911 and have him taken to the ER, under the guise that he may have a UTI as he's acting strange(yes, you may have to lie about that)and once there you let not only his doctors but also the hospital social worker know that your husband CANNOT return home as he is an unsafe discharge, and that you can no longer properly care for him.
If you stand strong and don't fall for the lies they will tell you about all they will provide if you take him back home, they will then have to find the appropriate facility to have him placed in, where you can get back to being his loving wife and advocate and not his burned out and overwhelmed caregiver.
And if money is an issue then you'll have to apply for Medicaid. The hospital or facility social worker can assist you with that.
Best wishes in getting your husband placed sooner than later.

SSDI takes months for approval...almost 9 months. You will have a difficult time finding caregivers because his care is high level ICU type. Even if he goes to a SNF, it is a higher skilled facility that have wait times to get in. Why did you take him home? You could have said no and the hospital would have done the work to transfer.
Your problem is you are starving. Are you alone with no resources? You will soon be exhausted. How do you pay for tube feeds andd medical supplies? I used to see a few babies taken home on respirators because their tiny bodies could be taken care of. I also know of an instance when a baby died because mom was so exhausted she slept through the ventilator disconnect alarm. Best to get him back to the ER under the first medical episode.

My friend’s husband is locked in from a stroke but he now has an eye gaze computer so he can communicate.

My best advice is to find a locked in Facebook group: they will know what to tell you to do for resources. Good luck.

How are you turning him so that he doesn’t get bedsores?

Your husband needs to be in care. Call APS, Adult Protection Services, and tell them you can't care for him. If he ends up hospitslized again, tell them its unsafe to send him home. You can't possibly care for someone with these problems. You have no money to pay for in home care.

Yes, SSD can take a while but there is Supplimental income. Social Services should be able to help. I would start with APS.

Good luck to your husband and you!!

This is intensive care level care and you are one person in a facility not conducive to this care. I am an RN and in my humble opinion this is an unsafe discharge on the face of it. Your husband--I am so very sorry to say--needs 24/7 institutional care. You need to have him on SSI if he hasn't medicare, and on Medicaid. You will need to consult an attorney about division of assets to so can "be there for him" but not be the caregiver. To one person to give this level of care is ABSOLUTELY NOT SUSTAINABLE.

This is utterly devastating. I am so dreadfully sorry this has happened to you both.

If you are unable to leave your husband (no other caregivers to give you a break), it will be too challenging to go apply for much of anything. I don't think that you as sole caregiver in his compromised state is truly sustainable. You are a brave woman and it's commendable that you are devoted to your husband, but I would suggest that you have an "alert" system on hand in case you personally were to fall or have a stroke and be left unconscious. The alert system might signal to a neighbor, friend, or distant relative to "call 911". In this way, your husband could be transported to an ER while another person determined your own state of health. As I have seen 2 women be outlived by an incapacitated husband completely dependent upon their wives for food, care, turning in bed, feeder tube, meds monitored, etc. Two women who were valiant in their efforts, but died before their incapacitated husbands: one from a stroke herself and the other, a massive heart attack. I am simply recounting factual cases, and they were both tragedies...

Hello...I just want to say my heart goes out to you. You've received great information regarding access to various, hopefully helpful, resources. The system is a nightmare in this country and certainly not getting easier with the current administration...I won't go there right now. I send you strength and my very best as you navigate the system. Take good care of yourself. Blessings...Will keep you and your husband in my thoughts and prayers.

Hello Tina,
OMG. What a human being you are. Going thru ALL these challenges for the full dedication of your vows. For better or worse, sickness and in health, forever and ever. Man, you are an inspiration. And I thought I had health challenges? Come on.
Like many folks have stated you just can't sustain this on a daily basis. Physically or mentally or emotionally, this may wear on you. Your heart is in the right place of course. Maybe you might consider GOFUNDME reach out? Not all the answers for you but may give you some relief with the ability to hire help of any sort. Just sayiing. May the good Lord watch over you and your husband.

What were your husbands wishes for his care? Did he want to be on life support?
As an RN I would never want to have this done to me. I know this is blunt and hard for many people to even consider, but this would be torture to be sustained in this manner,

This is no kind of life for you or your husband. Did your husband's request being kept alive this way? Did he sign a DNR? Are you keeping your husband alive because your afraid to lose him? I am afraid there is no turning back. Your husband is not comfortable, so please consider letting him rest in peace. Sorry for your pain. You are grieving for the man you once had.

This shows the importance of having a health care directive in place, no matter what the age of the person. A devastating medical crisis could happen to anyone at any time. If there is no hope of recovery, most people would not want to be kept alive on machines.

Good Afternoon,

How about if you bring him to a hospital have him admitted and seek a hospital Social Worker to assist you in at least a short-term placement to give you a rest/respite.

Perhaps, an emergency housing situation for the both of you in a senior/disabled apartment. You didn't mention which State you live in but the South has more options.

I would have thought your situation would be considered an "unsafe" discharge as I believe you are being asked of the impossible. I know these emergencies are just that, emergencies that come up in life and when you are in it you just look for the first opened door. But you do need a better set-up for the both of you, however, I commend you on what you have taken on.

I agree with the rest of the platform. Your situation is unsustainable long-term. I realize you want to keep your husband home but you must be up every night. You have to have a 3-night stay at the hospital and then a move to a short/long term care place if you can find one in your neighborhood.

It's going to be hard to have Church people come and help out in a trailer. The present living situation cannot be permanent. I agree with others, a move to another State with more options.

If you can, try to work remotely so that you have some type of livelihood and earnings in your old age. This is going to take a Village or it will take its toll on you and your husband will be automatically placed.

Thank you to the person who used chatgpt. I love it too. It's so helpful. I will pray for you but you cannot stay in the present situation. I am really surprised that your husband was sent home. You are a good woman but it's still going to take much more than that.

Amen Sister...

"they claim he has locked-in syndrome?"
I don't think any medical team makes up false claims.

So sorry that this is happening, and sorry your husband didn't do a DNR. This is a serious and desperate situation, and I am stunned they let him go home! Then the APS actually says "he looks well?" That is the best they can do?

It's obvious you are young and dedicated. But your Husband is in an impossible situation. I wish you strength and wisdom to deal with it.
Love is not enough in these situations.

TinaHern: Prayers forthcoming.

Many great suggestions already given here from others. If I missed it being discussed excuse me, but what is your husband's prognosis? Has his life's expectancy been grossly shortened by that prognosis? If so, consider contacting the Office of Aging in your county and inquiring about Hospice services in your home. Also, from bits and pieces of your comments I've surmised that your husband may be driving the decisions for him to remain at home, in that he's still able to make his own decisions cognitively. If this is the case, this is horrifically unfair to you and he's literally dragging you down with him. You will end up paying dearly with your own medical/psychological issues as a result eventually. For sure, even against your husband's wishes, tell his medical team you cannot care for him, despite what your husband tells them. Also, get a lawyer who specializes in Social Security Disability and get started on the process of qualifying your husband for those income and medical benefits to begin immediately. You will not be charged by the lawyer...he/she will take his payment out of the first couple Social Security Disability Checks your husband receives. I've been through so much...similar situation with my husband, but not as severe as yours. Now I'm caring for him and my older brother who refuses to leave his house. Please don't do this to yourself...I've aged at record speeds because of it.

Do you belong to a church? If you do and even if you aren’t practicing, because of your situation, the church volunteers would help out with shopping and food. I know the Catholic Church helps out with food for the poor, visits, etc. You have been given good advice but it also means filling out forms and having time and energy to do so, You need an advocate or advocates. If you don’t have family and friends to do so, I would call a church and if one doesn’t help try another. Call groups like Knights of Columbus, Tunnels 2 Towers, etc… You may connect to some kind soul who would help. What state do you live in? God bless you and your husband. I will keep you both in my prayers.

1) Lookup respite care services which are free to you and will allow you to go apply for services. 2) I assume he has home health coming in. Ask them to connect you with a social worker. They will gather everything for you. 3) Apply for Medicaid in your state and the PAS Medicaid Waiver program. The waiver program will get you the Personal Care Assistant.

Please update us on this situation.
It has kept me awake at night.

This isn't sustainable. I am sorry to say it is truly as simple as that. This several months ago question must by now have been in some way resolved/addressed. I would also love to know just exactly how.

I would have your husband hospitalized; It is then a matter of contacting social services after you refuse to take him "home" from the ER. Tell the social workers you cannot any longer do one on one care with a broken foot, and in a travel trailer. Hubby will be placed; Governmental assistance, perhaps guardianship, may have to be applied for.
Your hubby now needs the care of several shifts of more than a few workers on each shift.

I am very sorry for the situation you are in. I wish you the very best. And if you are still reading the Forum, I would hope you will update us.

Please note this post is from June. The OP has not posted anymore questions or replied since she posted.