In Home Healthcare Advice (1 Viewer)

[Tau837]

First, some background. My wife has been disabled since 1998 due primarily to severe spinal problems and intractable chronic pain, resulting from a 1987 car accident and 8 spinal fusion surgeries since. By 2010, her health had declined to the point that she could no longer walk unassisted, and by 2012 she was almost completely confined to bed other than attending doctor appointments. Today, she is in bed 99% of the time, in constant pain, and cannot walk at all.

In 2003, we moved from NC to VA to be close to her parents, and they helped us tremendously (more on this below). In 2014, desperate for something that would be positive for my wife's health, we decided to move to San Diego. My wife's brother and his family live here, and we thought that would be a positive, the weather would help, and the healthcare would surely be better in such a large population center (in comparison to Virginia Beach, where we lived). So we all moved to San Diego and moved into a home together (i.e., my wife, her parents, and me).

It turns out that the move has not helped, and, in fact, has made things worse. We cannot get all medications and treatments in San Diego that she had been getting in NC and VA, so have resorted to flying back to get those treatments in NC/VA for two weeks every 3-4 months. This is expensive and very hard for her, and we have had to postpone the trip several times, which just makes matters worse, since it extends the time between her treatments.

So we are now considering moving back to NC. We know she would get better medical treatments there, and that is the most important thing. However, her parents are not going to move back. My wife and I do not have kids (one terrible outcome of her health), but her brother and his wife have two kids, one about to turn 3 and one about 6 months old. Her parents are going to stay in San Diego near their grandchildren and avoid the stress and cost of another cross country move. I don't blame them, and I also think it will benefit them to not have to witness my wife's pain and struggle 24/7/365.

So this brings me to the subject at hand. Because we have always had her parents' help, we have never had to have any persistent in home healthcare. Her parents have helped her with simple things like answering the door/phone, bringing her drinks and meals, reaching medicine for her, etc. Her Mom has helped her to the bathroom and to get showers/baths when I am not home. They have helped her get ready and driven her to many medical appointments. For a time, they gave her pain injections when she needed them, though we stopped that practice because it was hard for them. They have stayed with her in our home or our shared home when I was out of town on business. They have taken care of our dog (a Doberman, so not a dog everyone would be comfortable with) when I am not home. I'm sure there is more, but those are the high points.

Replacing her parents with in home healthcare is a significant concern for us, and is one reason why my wife has not yet committed to moving despite the obvious benefit to her healthcare. I should also mention that, because of her health, we have a high amount of very expensive pain medicine in our home, so there is some fear of exposing that to caregivers, since we have heard stories of caregivers stealing from those in their care.

I know many people have had to deal with major health issues, so this should be a problem we can solve. I would appreciate any advice and recommendations others can offer. Also, we are considering moving to Raleigh, NC, in case anyone has any suggestions specific to that area.

 

[BowieMercs]

What is the cost differential in hiring private help on the side vs flying back & forth? We hired moonlighting nurses to help me care for my wife when the care offered by insurance was not sufficient and the alternative was moving her to a hospice facility. 

 

[shadyridr]

All I know is from my fil who was considering it for my MIL and he said it was very expensive. Something like $20 an hour.

 

[Tau837]

What is the cost differential in hiring private help on the side vs flying back & forth? We hired moonlighting nurses to help me care for my wife when the care offered by insurance was not sufficient and the alternative was moving her to a hospice facility. 

Well, we spend about $5K per trip. If we actually made 4 trips per year, it would cost $20K per year. But it doesn't cost that much because of the bigger issue, that it is too hard for her to make the trips. We have postponed 4 of the past 5 scheduled trips. Each time, we delay by a month. So we delayed twice before the last trip, which meant she went 5-6 months between treatments that are needed quarterly. This time, we have delayed twice and hope to go in two weeks; if we go, it will have been 6 months between treatments. So the net effect is that she is getting treatments twice per year instead of four times per year. And there is no prospect of improvement. It just isn't sustainable.

 

[Tau837]

All I know is from my fil who was considering it for my MIL and he said it was very expensive. Something like $20 an hour.

I'm expecting it will be expensive for sure. Especially since we will need someone to stay overnight at times, and ideally would want someone who could drive her to an appointment if needed.

It's almost like we need a live-in person, but I don't know if we can afford that.

 

[boots11234]

I would contact nursing schools in the area.  Often times the students are looking for part time jobs, you may even get lucky and find someone who'd trade work and money for a place to live. 

Very sorry to hear about your wife FYI. 

ETA. Have you considered divorcing her on paper anyway and get her qualified for Medicare ?  Would help with home care as they will do anything to try and prevent having to pay for nursing care. Obviously this is a very difficult decision but may help tremendously.  I actually considered this option when my wife had an aneurysm and three strokes.  Ultimately I didn't need to as my wife had no physical deficiencies but if I were in your situation I would at least discuss it with a lawyer. 

 

[Tau837]

I would contact nursing schools in the area.  Often times the students are looking for part time jobs, you may even get lucky and find someone who'd trade work and money for a place to live. 

Very sorry to hear about your wife FYI. 

Thanks for this suggestion. I will investigate this.

 

[Tau837]

ETA. Have you considered divorcing her on paper anyway and get her qualified for Medicare ?  Would help with home care as they will do anything to try and prevent having to pay for nursing care. Obviously this is a very difficult decision but may help tremendously.  I actually considered this option when my wife had an aneurysm and three strokes.  Ultimately I didn't need to as my wife had no physical deficiencies but if I were in your situation I would at least discuss it with a lawyer. 

I have not considered this. I'm unclear on the benefit that would come from it. It is worth noting that she is officially disabled and receives Social Security disability benefits, which includes Medicare. My employer provided insurance is her primary insurance, Medicare is secondary. Does this mean she would already qualify for the benefit you are alluding to?

 

[boots11234]

I have not considered this. I'm unclear on the benefit that would come from it. It is worth noting that she is officially disabled and receives Social Security disability benefits, which includes Medicare. My employer provided insurance is her primary insurance, Medicare is secondary. Does this mean she would already qualify for the benefit you are alluding to?

No I don't believe so.   She needs to be broke on paper.  With your income she's not considered so.  Obviously speak to someone well versed in these matters before making any decision.

i didn't look into it much but knew this was an option for home care as you will see it is extremely expensive.  Good luck.  

 

[Chemical X]

I am no expert, but I live in a Raleigh suburb.  My advise would be to speak with a lawyer to find out how she can qualify for Medicaid, up to and including all things on the table to make this happen.  I think Medicaid, rather than Medicare, is the only way to possibly go here and even then, the benefits do not provide what you may need...............however, each state administers its' Medicaid plan differently.  I know it's your wife, but it almost sounds like she is unable to live on her own, so, is a nursing facility an option?

GL

 

[Tau837]

I am no expert, but I live in a Raleigh suburb.  My advise would be to speak with a lawyer to find out how she can qualify for Medicaid, up to and including all things on the table to make this happen.  I think Medicaid, rather than Medicare, is the only way to possibly go here and even then, the benefits do not provide what you may need...............however, each state administers its' Medicaid plan differently.  I know it's your wife, but it almost sounds like she is unable to live on her own, so, is a nursing facility an option?

GL

Thanks for the reply. Putting her in a nursing facility is not an option. I don't want that, and I think my wife would likely choose to end her life before going that route.