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 utterly devastating. I am so dreadfully sorry this has happened to you both.
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.
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.
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,
Yes, SSD can take a while but there is Supplimental income. Social Services should be able to help. I would start with APS.
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.
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?
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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