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irenebutterf Asked January 2021

Concerned about running out of funds for the expense of private pay at home. What should we do?

My husband wants to come home from rehab, despite his need for 24/7 care , 2 person assist. , need to be positioned every 2 hours. We have to make a decision to enter long term care or pay private care. , says the rehab facility now.
Obtaining that amount of care is approx $30,000 a month for coming home, and at long term care it is $12,000 a month. Not so simple, as he is not receiving what he needs at the facility and would do better at home.
It is difficult to find agency with affordable care like that, and then be concerned for their not coming and possibly have no replacement.


The family is concerned we would run out of funds and then have nothing with which to pay for care at the facility, good care or not.


This breaks my heart and my husband is wearing thin with diassppointment.


Since June 2020, he has sustained 2 vascular surgeries, with rehab following each, with still issues for his wounds not healing on his feet. This is to be again addressed by the vascular doctor and podiatrist next week. 


His end stage renal disease affirms his dialysis treatment 3x aweek , which adds more stress to his health and mental outlook. , and contributes to poor wound healing as well.
He presently is transported to and from via stretcher and transport services, provided through Medicare and doctor certification.


I want to bring him home as he requests, but the family is against it, having concern for my safety and involvement with care


Perhaps private pay the first week of 24/7 care at $7200 and then evaluate, needing less workers, as he very well may refuse that 2 hour positioning and wants to sleep through the night. 


In the past, when he came home, he was exhausted following his 4.5 hour dialysis treatment every time. It takes him most of the next day to recoop his strength, only to start again that following day.


He has diabetes, sugar issues, heart issues, incontinence issues, partial amputation on right foot, stage 4 ulcers on both feet , mobility issues and vision issues, and also severe carpal tunnel in both hands, then too, he has vestibulopathy --no sense of balance , due to inner ear damage and has been using a walker and/or w/c prior to June 2020 when up. He is "always dizzy. "


Thank You for listening to my concerns. 

JoAnn29 Jan 2021
As said, you need to find a lawyer well versed in Medicaid. Medicaid allows you to split your assets. His half will be spent down for his care then you apply for Medicaid. You will get enough money from SS and any pensions to live as ur now. You can remain in the home and have a car. This way you are protected.

I really think this is the best way to go. Don't allow him to come home. The stress will be too much.

AlvaDeer Jan 2021
Does your father wish to continue his dialysis? Is there any talking with him about the possiblity of palliative care? As an old retired RN it is already written in my advanced directive that I will not under any circumstances ever accept dialysis or feedings by tube or parenteral IV. Your father's current condition sounds to be not quality time, but more torment and torture. Does he ever express that he is ready to go and have any doctors suggested hospice or palliative care?
As to the amount of money being paid, I cannot know what assets he has. He clearly is in end of life care, but that doesn't mean it cannot be prolonged, this sadness, for over a year, and you are correct, few have 30,000 a month to spend on it. And when that is gone there will be a move to a likely minimally staffed LTC facility with medicaid.
I am so sorry for this choice, but it is time to explore with your father what his options are. If he wishes to make this fight, utilizing every single thing available then this can, yes, be prolonged for some good amount of time. Be certain that is what he wants. I certainly would not. I fear death not at all, but this is what I DO fear. I am so sorry.

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sjplegacy Jan 2021
Although your husband's life expectancy may not be a qualifying criteria for hospice, his medical condition may be. Private pay 24/7 is always more expensive than a care facility. I agree that his care is beyond your ability to properly care for him and that nursing home placement should be considered. If, or when, he exhausts his assets, he would qualify for Medicaid. A visit to an elder care attorney may offer you some options.

Daughterof1930 Jan 2021
Irene, your husband’s care needs are way past being able to be taken care of in a home setting. Your family being against it is very wise. The labor and stress trying to pull off this level of care would quickly be detrimental to you. He needs nursing home level care, even if it makes him unhappy. You can private pay for whatever time funds last and then place him on Medicaid. We did this with my mother and her care was exactly the same either way.

babsjvd Jan 2021
His needs seem to be very high skill level, I agree , see the elder attorney , and regardless you will need to move forward away from home care sooner , than later...

Geaton777 Jan 2021
Hi Irene, first, if you can please edit your post to NOT include any personal information on this very public forum, that would be advisable.

Next, I would invest in a 1 to 2 hour consultation with an elder law attorney/estate planner who has Medicaid knowledge right away. This is where I would start if I were in your situation.

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