My grandma is going to die . . . and can't afford to go home

[Eonwe]

To make a long story short, my grandmother, who is 88 years old, went into the hospital last month for pain caused by what turned out to be a blood infection. She's on antibiotics, and is in 'rehab' (a nursing home) getting care and doing physical therapy to get mobile again so she can go home, after laying in a hospital bed for 10 or so days.

She wants to go home. She and my grandfather are (well, were) independent; at 88 and 91 still doing everything on their own. It's probable that grandma won't recover from this. When she gets off her antibiotics in a few weeks, if the infection hasn't been licked, well . . . not to be morbid, and who knows what will happen, but the point is, we're definitely looking at end-of-life care here, not a short stay in the hospital followed by a full recovery to 100% functionality.

Anyway, she wants to go home. For the past two weeks she's repeated that over and over, directly and indirectly. She's diligent about her PT, doing her exercises, eating food, and basically doing everything she can to get out of the nursing home and back to her home. I basically see it as her wanting to be able to live her last days, however many there are, in her own home, and not in a shitty nursing facility (not a knock on all nursing facilities, but the one she's in leaves some things to be desired).

But, apparently, medicare won't pay for certain things she's getting (like her drugs) if she goes home.

Let me say that again. If she is taking up a hospital bed, eating hospital food, and costing a ton of money, medicare pays for it. If she goes home, medicare stops covering the drugs and certain other things that it pays for if she's in an inpatient facility.

FUCK THAT!

Tonight I had to talk with my mom on the phone and listen to her cry, that her mom just wanted to get home (read: get home before she dies), and she was going to try to figure out a way to try to make that happen, but this financial issue that seems more about control and funneling money to the hospital than it does about patient care, or frugality, is part of what is in the way.

The past month has opened my eyes dramatically to ways in which the medical system is flawed and even hostile towards patients. There is too much money involved, and too little care. I fear for the time I have to go to the hospital for anything; I'm learning to expect my needs, comfort, and general mental well-being to always take second fiddle to bureaucracy, payment schemes, and doctors/staff who are transitory, under-informed, overworked, and are mechanical in their performance of their duties with little to no bedside manner, or long-term interest in the patient.

Hope I die before I get old.

[sisu]

My heart goes out to you guys, my father spent the last weeks at home with 100% support form Medicare. He got bi dialy nurse visits and the doctor came every couple, we call "hospital in the home" and it really helped him IMO.

Sorry to hear the news.

[freckafree]

Eonwe, have you contacted the hospice organization that serves the area where your grandmother lives?

[Eonwe]

Eonwe, have you contacted the hospice organization that serves the area where your grandmother lives?

That's on the docket for tomorrow.


I think the scariest thing about this all is that my grandmother has both my grandpa and my mom to be constant advocates for her; my mom is spending many hours a week visiting my grandma, talking to the doctors, nurses, whomever, staying abreast of everything that is going on, even when people seem reluctant to give information (sometimes perhaps for HIPPA reasons, but more often than not it seems that they are just unwilling to communicate freely about care with someone who they view as potentially stirring up trouble and rocking the boat), asking my grandma the questions about her comfort and well-being that her caretakers don't ask, and generally being another nurse for her. If she didn't have that I feel like she'd be dead already. I'm almost 30 and have no kids, and I don't know if I ever will, but I hope to heck that I have someone to advocate for me if I'm ever in that situation. Because it sure is clear that within the system, despite the action of any number of individuals, you become a cog in a machine, and no longer a human being deserving of love and compassion.

[Magiver]

After talking with Hospice I would look into a reverse mortgage on the house. If it's truly an end-of-life scenario Hospice will probably be able to cut through the red tape.

[elfkin477]

I'm sorry, Eonwe :( One of my friends in his 60s is in the same boat, literally. He's being treated for vocal cord cancer, and picked up a blood infection at the hospital. Medicare is paying for him to stay at a rehab place to get IV antibiotics 6x a day, but won't pay for a visiting nurse and/or a portable IV system like my dad had with a similarly bad infection. He wants to go home too.

[Nava]

But, apparently, medicare won't pay for certain things she's getting (like her drugs) if she goes home.

I just got a headache :( :eek::eek::eek::eek::eek:

Hope I die before I get old.

Me, I hope your medical system starts making some sense by the time you get old.

[Broomstick]

Look into hospice. My mother died at home, with hospice, and everything was covered. Her situation was different, though, and as always your mileage may vary.

Also, when my mom went into home hospice she stopped taking most of her medications - but I don't think that was from a lack of willingness to pay, but because, given her short lifespan, she didn't really need them anymore as they were for long-term maintenance.

[Antigen]

I'm sorry about your grandma. I'm in a similar spot with both of my grandmothers currently, and I can tell you the Canadian system isn't really a whole lot better from what I can see. The hospitals want to kick them out, but there's a waiting list for rehabilitation/long term care facilities, and my family isn't equipped to keep them at home.

I hope your grandmother gets to go home.

[faithfool]

Eonwe, I'm so sorry for your grandmother. :( But I do agree with others that hospice is the way to go. I hope you'll find something there that will help her.

[Serenata67]

Antigen and Eonwe, I'm sorry to hear about all of your grandmothers collectively.

This is what sucks about organized medicine, medicare and being solely reliant on government medicine.

[LurkerInNJ]

Tonight I had to talk with my mom on the phone and listen to her cry, that her mom just wanted to get home (read: get home before she dies), and she was going to try to figure out a way to try to make that happen, but this financial issue that seems more about control and funneling money to the hospital than it does about patient care, or frugality, is part of what is in the way.


This may sound overly simplistic, but is there something preventing your grandmother from getting up and going home?

If she is at the end of her days, she may be happier living for two more weeks and dying at home in her own bed with her husband by her side than living for four weeks in a place she clearly does not want to be.

[Motorgirl]

There are a couple of levels of basic Medicare, which cover different things.

Sounds like your grandmother may have only Medicare Part A. This covers hospitalization only.

Many people only enroll in Medicare Part A, because there's usually no out-of-pocket costs for premiums. Medicare Part B, which would cover non-hospital doctor visits, outpatient services, etc, is an additional cost that many senior citizens don't sign up for.

Then there is an additional plan (and monthly cost) for prescription drug coverage (sometimes called Medicare Part D). Drugs needed while you're in the hospital (or nursing home) are covered by Part A, but if you're home you need Part D to cover drugs.

So your grandmother's situation makes logical sense under the Medicare plans she's probably signed up for, though I agree it is unfair that she doesn't have the ability to go home, all because of her health insurance.

[Motorgirl]

I twenty-second the hospice suggestion.

My mom (a Medicare-Part-A-only recipient) was enrolled in hospice her last couple of weeks. If we had been able to have her at home, hospice would have covered any drugs she needed, she would have had a nurse and another worker visit her. She wasn't able to come home, though, because she was too sick for us to care for her, so she had in-hospital hospice.

Hospice should be covered by Medicare Part A wherever the person is - at home or in a hospital or nursing facility.

[Nava]

This is what sucks about organized medicine, medicare and being solely reliant on government medicine.

Sorry, but no. In Spain her meds would be 100% covered under SS so long as she has a prescription from an SS doctor (read: from any doctor, because even if her doctor is part of the 1% who doesn't work for SS, he'll be able to grab a colleague to write the script).

[Serenata67]

Sorry, but no. In Spain her meds would be 100% covered under SS so long as she has a prescription from an SS doctor (read: from any doctor, because even if her doctor is part of the 1% who doesn't work for SS, he'll be able to grab a colleague to write the script).

Perhaps I should have written it to read "reliant on the US Government" or something to that extent. Perhaps Spain has avoided being a humongous bureaucracy, but in the US (and Canada, from what I hear), government medicine is a huge mess. In Spain, from what you say, I'm guessing they don't have the "Part A", "Part B," "Part D" classifications. If you have SS, you have it all. Here, we do. And it sucks. It's such a beadledom that lots of people are getting the short end of the stick, so to say.

[Broomstick]

The problem isn't "government run healthcare", it's not even "private healthcare" the problem is American healthcare. Despite what people in the US are told over and over their healthcare "system" is NOT the best healthcare in the world, far from it.

[velvetjones]

My father in law was in a nursing home for a couple of months after having various problems. He's been home for a month now. We didn't have any problem getting him released from the nursing home. They said that the criteria was that he be able to do "everything" for himself. Walk, eat, bathe, dress, use the bathroom. The discharge planner also helped us select a home health care agency that we used for the first 3 weeks he was home to help him transition and to help us learn to take care of him.

I would recommend a meeting with the discharge planner at the facility where she is currently rehabilitating. That facility should also have a Social Worker who can help you work out the details of how you can pay for things. You might also consider consulting an Elder Care attorney who may also be able to assist you.

For us, the Social Worker recommended an attorney and (for a fee) he's assisting us with getting dad on Medicaid so that his skilled care doesn't completely drain the family resources. FWIW dad is 86 and has Alzheimers and Parkinson's. Though he's home now we anticipate that he won't be able to stay home forever given that both diseases are progressive and incurable.

She's not a prisoner at the nursing home. But she may be a prisoner of her financial situation. But the social worker or elder care attorney should be able to give you some options.

Best of luck to you. I know this is a difficult situation.

[threemae]

velvetjones has some very good input.

In my limited experience, a rehabilitation experience is not synonymous with permanent nursing care, although families often seen to have that expectation.

I'm not sure why everyone here is so strongly advocating for hospice. From Medicare's prospective, hospice is designed for people with an expected life-span less than six months. So far in this thread, I have not read what medical condition the person discussed by the OP has that means she won't have the ability to regain a high level of functioning, return home, or have a lifespan measured in years rather than months after that.

I wish the best for the OP's grandmother.

[Broomstick]

I'm not sure why everyone here is so strongly advocating for hospice. From Medicare's prospective, hospice is designed for people with an expected life-span less than six months. So far in this thread, I have not read what medical condition the person discussed by the OP has that means she won't have the ability to regain a high level of functioning, return home, or have a lifespan measured in years rather than months after that.
It comes from here, in the OP:

When she gets off her antibiotics in a few weeks, if the infection hasn't been licked, well . . . not to be morbid, and who knows what will happen, but the point is, we're definitely looking at end-of-life care here, not a short stay in the hospital followed by a full recovery to 100% functionality.
So it's planning for a worst-case scenario situation, not necessarily an immediate issue.

And while hospice is intended for the last six months the truth is that there is no set way to be sure someone has six months left. Very often, by the time they get to hospice they have less than that. In other cases, people survive longer than expected. That doesn't make the doctor wrong, it just means that medicine isn't an exact science.

[velvetjones]

I'd like to also add that from what I've learned dealing with my father in law's situation, Medicare will only pay for a certain amount of days in a rehabilitative facility and there is a co-payment for that. In our case, dad was in the nursing home from the end of October until Dec. 31 so almost exactly 2 months. Medicare covered what it did and we got a bill from the nursing home for $5000+ which was his $133 per day Medicare Co-pay. Your situation may be different depending on which medicare plan she's on but I don't think that medicare will pay indefinitely for a nursing home.

I know it seems at times like the system is working against you but the discharge planner and social worker are there to assist you and your family with making these decisions. In our case they were kind and compassionate and very easy to work with.

[threemae]

Broomstick, I don't deny that sepsis is a very serious illness, particularly for an 88 year old woman, and the potential causes for such an illness is a very long list, some of which represent underlying medical conditions which would warrant an investigation of hospice options. However, the OP has not chosen to provide an in-depth explanation of what led to this infection, and I think it might be premature for other posters to jump to the conclusion, "hospice!"

Even the very old can have the ability to recover from serious infections and moderately long hospital stays.

[Muffin]

Perhaps I should have written it to read "reliant on the US Government" or something to that extent. Perhaps Spain has avoided being a humongous bureaucracy, but in the US (and Canada, from what I hear), government medicine is a huge mess.No, as has been pointed out numerous time on the SDMB by Canadians, Canadian medicine is not a huge mess. We Canadians have an excellent socialized health care system. For example, if your grandparents were in Ontario and had an income of over $24,175 per year, their deductible would be $100 per year, following which each prescription would be $6.11. If their income was less, they would pay less.

I am sorry your grandparents are stuck with a system that has let them down. I hope the USA picks up its socks with respect to health care.

[Rand Rover]

Eonwe, I'm not sure why you see the situation as "she doesn't get free stuff if she goes home" instead of "she's getting free stuff while she's in the hospital." You take "getting free stuff" to be what should be the default state of things. And then you wonder why the medical system is all screwed up.

I know this thread is mainly about you feeling bad about your grandmother's situation, and that does suck, but you started the conversation about the state of the medical system generally. The medical system is just made up of people, and to the extent those people think that health care is some special thing that should always be free for certain segments of the population, it will continue to be screwed up.

[twickster]

I know this thread is mainly about you feeling bad about your grandmother's situation, and that does suck, but you started the conversation about the state of the medical system generally. The medical system is just made up of people, and to the extent those people think that health care is some special thing that should always be free for certain segments of the population, it will continue to be screwed up.
Yes, this is about eonwe's feelings about his grandmother. If you wish to discuss health care, please start a new thread, rather than being a jerk and hijacking this thread.

[tomndebb]

Another voice for hospice, not least because hospice, (even at home), tends to be covered by Medicare Part A:
http://www.medicare.gov/publications/pubs/pdf/hosplg.pdf (.pdf, of course)

(I am NOT claiming that Medicare will cover the antibiotics, only that it is worth looking into.)

[Eonwe]

Thanks all for the advice and concern. I figure if I posted this OP I at least owe you all an update (sorry for the lj-ishness of this).

Grandma is going home today! She's been extremely strong-willed about this whole process, and a few days ago they did a . . . not 'home audit,' but basically she went to her home with someone who assessed whether she could go home and still be self sufficient (get in and out of bed, use the bathroom, walk around, etc etc). They had no recommendations for changes, and so she's home today.

She still has one week left of her expensive antibiotics (about $1000 a day, which fortunately my grandparents are in a position to pay). And then we'll see what happens. She still has her infection, so who knows what will happen in a week when she goes off those drugs and onto different ones. But for now she's home.


Thanks for all the suggestions about hospice and so forth. I've not been directly involved with the planning, interfacing with doctors, and so on, so my descriptions of what's going on are second hand, so some of the details have eluded me a bit.

One thing I've been learning is that it is hard to care for a loved one who's suffering from a major medical ailment. And I'm not even doing a lot of the 'heavy lifting' so to speak, but am kind of backup to my mom, and just trying to be helpful to everyone and have a happy smile. But I've been drained emotionally just kind of being the one who helps everyone else stay positive.

My girlfriend came to town over new years and met my mom and grandparents for the first time . . . in the hospital where we celebrated my grandparents' 66th wedding anniversary (on New Years Day). I celebrated my 30th birthday in the nursing home with my family last weekend. I was happy to do all these things, but it's tough celebrating with a giant white elephant in the room (no, I didn't get an elephant for my birthday ;) ).

Oh, and Rand Rover, thanks for your concern (and twickster, thanks for modding), but I've decided to happily take your points to Great Debates (http://boards.straightdope.com/sdmb/showthread.php?p=12092281#post12092281), if you'd like to follow me there.