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JoyDan Asked December 2020

Husband being discharged after long illness and I am unable to care for him. What are my options?

My husband of 30 years has been in the hospital since Sept 1 dealing with the toll of a blocked gallbladder and sepsis has taken on his body. The week before being admitted he weighed 185#. Last Wednesday he weighed 140#. While he was being treated we both tested positive COVID at the hospital on Oct 23. He went into isolation there and I went home into self quarantine. His symptoms were simple in that he lost his taste and smell. I had all the rest. Within about 5 days I knew it was bad. I was using his inhalers just to function. I finally had to call the ambulance. I was admitted with both COVID induced pneumonia and bronchitis on Oct. 30. I was just discharged today. While I was going through the paperwork with the nurse the administrator where my husband is called to say that since he is too frail to continue with any physical therapy (which is what insurance agreed to pay for) that he will be discharged on Friday and no longer qualifies for long term care. I cannot physically care for him. I’m living with lung damage and on oxygen 24-hours a day for 3-6 months. I’ve been researching and there doesn’t seem to be much help out there. We are on a fixed income living in Arkansas. He is 80 and on SSA. I’m 55 and on SSDI. We have some savings but nothing enough to help this situation. We don’t have any family living close to help. My husband cardiologist told me last Wednesday that if we don’t turn things around and get him eating and fighting to live that I’ll be planning a funeral in 6 months. He needs to be with me but I need help caring for him because of my own recovery from COVID. I’m a bit overwhelmed right now.

BarbBrooklyn Dec 2020
Joy, thanks for the update!

I just want to remind you that when you fly, they always tell you that in an emergency, you MUST put on your own facemask first before helping anyone else, even your spouse or your child.

Please take care of you right now!

Daughterof1930 Dec 2020
I’m glad to scroll down and read your update, thankful you’ve contacted your family doc and are getting some help there. You’ve gotten great advice already. Just wanted to say my heart goes out to you both, such an overwhelming circumstance, I hope you can rest and continue to heal

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lealonnie1 Dec 2020
Just wanted to send you a hug and a prayer. Barb and Alva have advice, all I can tell you is that my DH lost 30 lbs after 2 large surgeries the past month. It is very, very VERY hard to feed him enough food to make him gain weight. Even with 3 fattening meals a day, 2 Boost Plus drinks at 360 calories each, and a huge whole milk milkshake, the best he'll do is gain 8 ounces. You will not be able to do just the GROCERY shopping and cooking required to fatten this man up. The doctors and administrators are CLUELESS about what all is involved in nursing a man back to health. And they're expecting YOU to do it when you're recuperating from a horrendous virus yourself and on oxygen! Impossible. IMPOSSIBLE!!!!!! I'm in fine health and thoroughly exhausted myself.

DO NOT LET THEM DISCHARGE HIM HOME.

Wishing you the best of luck and good health yourself.

GardenArtist Dec 2020
Joy, you did well by coming here; both Barb and Alva had lots of experience and good advice.     Igloo is another poster who's an expert on Medicaid and hopefully will come along also.

I echo Barb's recommendation to work toward a Medicaid pending status.   But I'm a bit confused; could you help me out?  Your husband is in a hospital and has been for some time, but the hospital administrator is advising he should be discharged, w/o going to a rehab facility, where he could have a chance to strengthen and possibly advance his recovery?   Or is she  advising going directly home, which isn't realistic, or to a long term care facility?    Or was he in a step down long term care hospital?

Something else you might consider is downsizing, but given your recovery from Covid, I think that's probably too much right now.

And BTW, the next time the cardiologist or anyone else tells you to "turn things around", I would ask:  "how??? What would you recommend and can your staff help, especially if there's a social worker on staff?"

I wish you serenity, and as much as peace and hope as is possible during this challenge.
JoyDan Dec 2020
Thank you so much for responding. What a relief just to know I’m not alone in this. To answer your questions. Sorry I wasn’t clear. Dan was transferred to a NH for rehab services around Nov 1. He struggled with eating because he still had no taste/smell. High protein milk shake multiple times a day were about it for a while. So when the tried to start PT the first week of Nov he had no energy stores and he hadn’t walked on his own since Sept 19. He as COPD and CHF and yet he lay in bed most days. I would call each day to talk with him and if I saw that he was still in bed I would call his nurse and have her put him in his recliner. So here I am in the hospital myself and directing his care at the same time. It’s been ridiculous. I warned them how quickly he can gather fluid in this chest, especially because he has a damaged mitral valve that can’t be fixed. Saturday night at 9:45pm I received a call from the charge nurse saying his breathing was off. They did a chest exray and found fluid. Imagine that... so now that he is physically unable to do PT he is disqualified. We are working on long term.
The good news is that my family doctor is wonderful and she loves us like family. We talked options last night and we already have a social worker, elder attorney and a some help possibly coming from the VA. It’s happening so fast that I don’t understand it all yet but I will be fore we’re done. Thanks again. The support means everything!
cxmoody Dec 2020
Joy,
I’m so sorry that this has all happened to you both.
This a great place for information and support. You will learn a LOT!

BarbBrooklyn Dec 2020
Agree with all that Alva said;

You husband needs to be admitted to a nursing home as a long term care patient "Medicaid Pending". It is the hospital social worker's job to find him a bed.

DO NOT let them discharge him home; THAT will be a death sentence for BOTH of you. The NH can offer him the care he needs while you heal and the decision about whether he can be managed at home can be kicked down the road a bit.

Please let us know how you are doing! We care.

AlvaDeer Dec 2020
Oh, Joy, what a DREADFUL situation.
You are going to need to tell the Social Worker the circumstances and that he cannot conceivably come home at this time. Don't listen to their platitudes about how they will "make this work" and "get you help". They can't and they won't. You will have to say he needs placement, and this is the best place to start from, a hospital or SNF/Rehab where the social worker can help wave the wands that work. We lay folks don't have that power.
What will be more difficult is the getting assets division working; I am clueless on how that works, but an elder law attorney can help with it, and perhaps even the social worker.
I wish you luck. I cannot even begin to imagine how desperate you must feel. I hope you will update us and I hope others will give you some solid information on how to proceed in applications for medicaid.

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