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He has a trach in his neck, peg in his stomach, and a catheter for urination. He's on a breathing machine, oxygen, etc. He can't move. They claim he also has locked-in syndrome.


Insurance won't pay for a caregiver or facility. I have a broken foot so it's hard to lift him. I can't leave him alone, so I can't work.


Can anyone offer any advice? A way where he would be comfortable and at home yet I'd have assistance? Also I'm trying to maintain his machines in a travel trailer and can't go anywhere to apply for housing assistance. He's much better since leaving the hospital, but I'm exhausted and can't do simple things such as get groceries.


Any advice is welcome, please. I've even contacted Adult Protective Services for advice. They came out said he looks well, that I'm doing a good job, and if she came across resources she'd let me know. I'm in need of financial, housing, and food support, but can't go anywhere to ascertain what help I might be able to get.

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.
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Beethoven13 Jun 14, 2025
Agree. This does not sound safe or remotely sustainable and sounds extremely dangerous for you and the husband. You live in a travel trailer with all of this? Are their neighbors to help? Can you pay an agency to provide help? Call a hospice and tell them you need a social worker and palliative care consultant asap. I hesitate, but call the local news for help? What SW or case manager signed off on this discharge plan?? There is 911 for lift assist and also, caregiver can no longer provide icu level care in the travel trailer and patient needs placement. Not a safe discharge. Get him placed in nursing home care and you can park the trailer in the parking lot and visit all day. At least you will have some help and hopefully, get some rest.
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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...
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MiaMoor Jun 14, 2025
This was my worry. I can understand wanting to be there 24/7, but it isn't possible.
Even a simple virus could incapacitate her. Also, it would be dangerous for her husband to be exposed to it.
This really is unsustainable and so sad.
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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.
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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,
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TinaHern Jun 17, 2025
If I felt this was his baseline then I wouldn't wish this for him. He continues to make gradual improvements. Unfortunately this is something we had never discussed.
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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.
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cover9339 Jun 13, 2025
Some hospitals may be wise to this. Recall a lady taking care of a man with ALZ, used excuses not to pick him up, when he was to be discharged. After 1 night of this, the net night they arranged for a ride for him.
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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.
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TinaHern Jun 13, 2025
I appreciate your answer and have considered that avenue but I do not feel comfortable with the facilities,only 2 are qualified for his level of care in the city one of the 2 denied him due to insurance, the other is horrific. The only other placement option is over 200 miles away. Not happening . So I'll continue to hold strong until I can get help from time to time. My concern is his comfort and care and even given the circumstances I feel he's in the best place he can be. His health has actually improved. I'll continue to research ways to bring him even more support. Thank you again.
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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.
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Frenchie36 Jun 17, 2025
You are so right! I gave our hospital forms to every patient I discharged and explained to them why they needed these documents filled out with their wishes. It is so hard on family to guess what their loved one would have wanted. And on the other side, many family members want to override the patients wishes and keep them alive even though it's not what they wanted. I always was a fierce avocate for what my patient wanted. Please have the conversations and do the forms....
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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?
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TinaHern Jun 17, 2025
I. Turning him myself it's difficult but I have no choice. Hopefully I'll have a lift soon . His doctor came yesterday and said he's doing well enough to start physical therapy next week so I feel the locked in diagnosis is inaccurate though I've read of cases in which there's limited movement. I will definitely check into the fb group. Thank you.
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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.
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TinaHern Jun 17, 2025
Thank you and I'm doing this because it's the right thing to do and because of a vow I made to him. Yes it's challenging but as he improves slow as it may be his progress brings me pride. I believe each day is a blessing and keep moving forward the best I can because , well, there isn't really any other choice but to. Thank you for your response.
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Good luck to your husband and you!!
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