Terminal cancer - anyone have a clue?

[ECB]

What options are there for people who are terminally ill, can't care for themselves, and are basically broke?

My aunt is dying. She's 63. Bladder cancer that was dignosed 1.5 years ago and while she was fine for about a year, she's clearly been going downhill for awhile and I really don't think she has much time left.

I don't want to get too long winded. My mother has been largely caring for her - and the burden is just becoming bigger and bigger. Initially it was some $$ (my aunt was HORRIBLE w/ money) and some of my mothers time.

But it's a much bigger task now and it's pretty clear that she can no longer live on her own. She can't move in w/ my parents (stairs), and she has no one to care for her at her place (my mother refuses to move in w/ her, which I feel is understandable), no one can afford to pay for a nursing home.

What other options are there?!?! The hospital wants to discharge her (she's "well enough" to leave) - but there is no one to take care of her. She needs constant supervision now and my mother can't be that person.

She's lucky she's had my mother to help her for as long as she has, but we're at the tipping point now. It's too much. But I just can't believe there are NO other options.

I said earlier today "If she didn't have my mother, where would she be/ what would they do w/ her?", but then I realized if she didn't have my mother, she'd actually be dead already. If it weren't for my mother checking in on her, there are at least 3 times (including 1.5 years ago) where she would have died.

(I'm doing research in my area on this - but I figured I'd ask here to see if there are options I'm not thinking of/ not running across)

[Deleted]

Is she collecting SS? She can apply for medicaid and be put in hospice/nursing home

[Deleted]

Is she not eligible for medicaid? Most people in your average nursing home are on medicaid. Actually, if you contact a nursing home and tell them the situation, chances are they will walk you through it and try to get her approved faster.

[nonsenseabound]

Speak with a social worker at the hospital. They will guide you for hospice/home health support/nursing home care.

[Chirp]

I only have two similar "experiences" (not mine, but I think they're relevant)...

H's uncle had a stroke. No money, no one to care for him. He went on medicare and was placed in a nursing home. It's been a few years and he's still young (mid 50s), but that's where he'll be for the duration.

A co-worker had a child with cerebral palsy. She cared for him herself for as long as she could, but eventually, she just couldn't do it alone anymore. She contacted the local united way and they put her in contact with the people she needed to get him into a group home. Same co-worker contacted the united way to get hooked up with hospice care when her mother was in need.

[Mrs.Beagle]

Talk to a social worker at the hospital. If she doesn't have insurance, they should have put in the application for medicaid when she arrived. They can help you review your aunt's options for placement.

[stingsharkruns]

Ditto PPs who said talk to a social worker. If she's not eligible for Medicare, she should be eligible for medicaid.

I don't have personal experiences, but I've had patients who've been eligible for MediCARE after they've been diagnosed w/ CA. I believe it was due to disability status - but i'm not 100% on that.

[Deleted]

I would also think a cancer support group would have some options/places to start for help. If you don't know of any, her oncologist's office should be able to put you in touch with the right people.

[ECB]

Thank you all. I've been saying "talk to a social worker" to my mother forever, but she "hates to ask for help" AND right now she's an emotional mess. But this is all giving ME some focus on where to go/ what to ask for.

DH and I are going to talk to her about getting her sister to give either DH or I POA. My mother already has it... but OMG!!!!!!! She's a fricking mess and not doing what she needs to do.

My aunt is paying a CC bill that just needs to stop being paid. It's $150 a month that she doesn't have and she's dying - they aren't ever going to get all their $$. My mother needs to go to the bank to shut down that payment, she and DH were going to go today (she asked DH to go w/ her as backup to make sure it gets done), and she somehow "convinced" herself that she can just call the CC company instead.

No, they won't stop it. You HAVE to do that at the bank!!!!!!! But every f-ing time we try to help/ tell her what to do - she doesn't do it. So DH and/or I need to go and do it ourselves.

DH may actually go to the hospital this afternoon (he's off, I'm not) and see who he can talk to and get some answers.

My mother is making this so much worse than it needs to be. I get it that she's upset that she's losing her sister, but she isn't doin gher sister any favors by 1- being an emotional basket case and 2 - not asking for help.

[Deleted]

Your mom sounds like my mom. Sorry. I think getting POA would be a good idea, so you can hopefully get her into a nursing home and not have to depend on your mom to make those decisions. There is usually someone in the hospital and the nursing home who specifically deal with getting people medicaid coverage and getting them placed in a home. It's part of their job.

As for the CC, as soon as they know she's in a nursing home, they should stop any collection efforts.

[Deleted]

Tell your mother to stay strong. If she even hints that she might take her home, the hospital will strong arm and discharge your aunt to her ASAP. It is their job to not discharge her without suitable care arranged.

[Deleted]

I'm sorry ECB, there must be caregiver support groups? Maybe you can drag her to a few until she realizes they are helpful for her? I hope one of you gets the POA "to help your mom focus on more important tasks and not mundane financial matters" This is rough.

[ECB]

Jan 2, 2013 11:02:24 GMT -5 @spenjamins said:

It is their job to not discharge her without suitable care arranged.

This is exactly my concern. I do NOT bleieve they'd discharge her if there are no options, but I don't trust that my mother is being clear about this to them. She loves to play the martyr too.

[Deleted]

This whole situation sounds frustrating, I'm sorry ECB.

[Deleted]

Jan 2, 2013 11:10:16 GMT -5 ECB said:

Jan 2, 2013 11:02:24 GMT -5 @spenjamins said:

It is their job to not discharge her without suitable care arranged.

This is exactly my concern. I do NOT bleieve they'd discharge her if there are no options, but I don't trust that my mother is being clear about this to them. She loves to play the martyr too.

if your mom says she can care for her, they will let her. So step in, call the social worker yourself and tell her that is NOT an option.

[pugz]

a social worker should already be on this case, ridiculous if the doctor hasn't ordered a consult already. We are involved in pretty much every hospice case that comes through the doors at my hospital. Call and request this now.

They can't discharge her without a safe discharge plan and you guys can file a medicare appeal if they try to do so, it buys you about 48 hours. Ask for the "important message from medicare" document. It has the appeal process on it. Actually I googled and here's a link to the form: medicareadvocacy.org/InfoByTopic/AcuteHospital/Hospital_07.28.02.IMEnglish.rev.pdf

but if she doesn't have medicare...that doesn't really help!

Typically here are the options in this kind of situation:

-home with 24/7 care provided by family and supplemented with hospice (hospice cannot be there 24/7 or even daily, but they can provide support and some WILL provide 24/7 care the first couple of days while the family adjusts)

-home with 24/7 care provided by an outside agency (this is prohibitively expensive except for the very rich that want to keep the family member out of a nursing home at all costs).

-nursing home paid for by medicare/insurance. Family must pay for room and board (usually <$200 per night), insurance covers the medical care and also pays for hospice to come in and provide extra support. Nursing home may request payment up front for 30 days though, depends on the facility.

-inpatient hospice care: this is for those that typically have <2 weeks to live. Sometimes these inpatient units are in a hospital, sometimes a stand alone facility, the hospice agency runs it and they provide 24/7 care like a nursing home.

You guys need to talk to the social worker about a plan and ask the social worker to bring in a hospice agency to go over your options as well. Applying for medicaid may be an option, but only some nursing homes accept patients that are "medicaid pending." So the paperwork usually needs to be filed first.

[ECB]

Jan 2, 2013 11:37:02 GMT -5 pugz said:

a social worker should already be on this case, ridiculous if the doctor hasn't ordered a consult already. We are involved in pretty much every hospice case that comes through the doors at my hospital. Call and request this now.

Pugz - this is one of the things I've been wondering about. I feel like SOMEONE has to be involved in this, but from my mother's telling... she's dealing w/ all this on her own. That's where I'm at a loss - what are the doctors actually saying vs what is it my mother is hearing. KWIM?

There is another sister who used to be a nurse who was just here and is supposedly moving up here in the next 2 weeks. She knows her stuff and was fantastci to have around - but who knows if she'll be here in a week, or two. And this crap can't wait.

Thanks for all the information. I appreciate it.

[ECB]

Pugs- one other question. You mention the nursing home and that the family would have to pay room & board. That's the issue- NONE of us are in a position to pay that kind of $$. $200 a night. That's $6000 a month!!

That's a part of where I start to feel lost again about "what are our options?". No one is in a position to pay costs like that.

[pugz]

Jan 2, 2013 11:46:55 GMT -5 ECB said:

Pugs- one other question. You mention the nursing home and that the family would have to pay room & board. That's the issue- NONE of us are in a position to pay that kind of $$. $200 a night. That's $6000 a month!!

That's a part of where I start to feel lost again about "what are our options?". No one is in a position to pay costs like that.

unfortunately it sucks but what it comes down to is the hospital basically says "you can take her home and care for her, or you can send her to a nursing home" and the burden is on the family to make one of these two things happen once the patient is stable for discharge

Unless by some miracle a nursing home will take her for a rehab stay (which would be covered by insurance but is very hard to get approved for someone that is terminal). Essentially the plan would be a short rehab stay until her strength improves and she can return home. This is sometimes an option if someone is terminal but maybe broke a hip or had pneumonia and is expected to recover from THAT issue with rehab. Long shot but I've seen it happen.

I think the best bet is applying for medicaid and finding a nursing home that will take her. If she truly has no money she should qualify for medicaid. The social worker will probably know what nursing homes are most likely to take a patient that is medicaid pending. If this were my patient, I would be calling around to the admissions coordinators at nursing homes to find out who would take her. It may not be the best nursing home, but it would be a safe place.

[pugz]

oh and depending on the state, some nursing homes will file the medicaid application for you! For my patients in Missouri they need to have the application done ahead of time, but if i'm sending a patient to a facility on the KS side of the border the facility will do it. So sometimes it's not as complicated depending on the state's medicaid regs.

[ECB]

Great- thanks for the info. I'm going to pass ths on.

[pugz]

good luck! I know it sucks, these situations are so very hard. Often the doctors just don't get it either, they think social workers can wave a wand and pull a good discharge plan out of thin air, they don't grasp how complicated the issues are. However some doctors are great. I know if a patient is assigned to one of my docs that she'll basically lay off and give me the time I need to get things together, whereas her partners will be berating me :\

the new Medicare requirements regarding re-admissions will hopefully help over time as hospitals and doctors will get dinged if a patient is readmitted within 30 days. Basically there is more pressure to have the patient truly on the road to recovery with a solid discharge plan. Otherwise they don't get paid if the patient returns.

[shadyblue42]

You may want to call around to hospice. My aunt had cancer, no insurance and no savings. She was discharged from the hospital but the nursing home wouldn't take her. The hospice in our town took her on because they have to do so much pro bono care per year. My cousin gave them a donation after my aunt passed away. It may not be the case where you live but it's worth checking into.

[ECB]

Jan 2, 2013 13:12:30 GMT -5 operagirl said:

It sounds to me like your mom is scared - suddenly the fact that it could be herself, that she is ashamed she can't help more, that her sister will die- all of this has hit her so hard, she is frozen.

This is exactly it. I feel like we've hit this juncture and I realized this is a big part of it- all along my mother has been living on false hope that her sister is going to get better. Just last week she told me that she realizes that she has to give up that false hope. And I feel like this is where this emotional fallout is coming from. It's really hit her "my sister is going to die".

I just talked to her, though, and she sounded pretty "on top of things" - although that can turn on a dime. She and my dad are coming over tonight to talk and get a game plan in place. DH is going to go w/ her to th ehospital tomorrow.

Oh- and a social worker IS involved. The first I've heard of that.... grrrr.... But at least DH can talk to the SW tomorrow too!

[pugz]

good I'm glad they have a SW assigned to the case!

you can do a search on medicare.gov for facilities and on the right hand column it lists if they take medicaid as well. Take the ratings on that site with a grain of salt though, I don't always find they properly reflect the facility. Touring facilities is the best way to get a feel for the place.

[MixedBerryJam]

I haven't read all the responses. As I was scrolling down my eye caught your comment about you mom not wanting to ask for help. Sorry, but she is completely missing the point of those social workers! She's not asking for help for HER, she's asking for services your aunt is not only entitled to, but as a human rights thing should simply expect. Bladder cancer is a bitch, I know. A social worker would connect her with a support group if she wanted so she didn't feel so alone. Your mom (and you, for that matter) also likely have support services available to you where your aunt is being treated. A year and a half in to a bladder cancer diagnosis, at the very least I bet your aunt is a candidate for some more aggressive pain treatments ... hell, the social workers where my husband was treated are able to provide free or discounted parking! Does your aunt have home hospice at this point? My biggest regret about my husband's cancer treatment was not getting home hospice involved earlier. His cancer was different (brain)but I'm sure many of the issues are the same. It is fucking exhausting watching a loved one die. I really, really encourage your mom to contact the social workers and talk about home (or residential) hospice. Oh, my God, the hospice people are truly angels. I wish your aunt a journey free of pain and fear.

To clarify, I'm not saying the social worker is involved in your aunt's pain mitigation plan -- that's totally medical, of course, but the point is that the social worker is there to advocate for your aunt.

[ECB]

MixedBerry- thanks for your reply. I think she's now FINALLY getting it that she can't do this alone. Also, something I said earlier, is tha tI think my mother is just now REALLY coming to terms that her sister is dying. I think she was trying to deny it and in turn, she was fine to help. But now she realizes that's not the case and she can no longer do it all. She's been VERY open these past few weeks to letting DH and I start to help her.

Also, her sister was being stubborn too. Her sister also doesn't like to ask for help, and when she was doing better and more "with it", it was too hard for my mom to say "no" to her. but now - the game has changed and they are both now realizing that help is needed.

I'm hoping, though, that my DH will be able to ask questions/ find stuff out that we simply haven't been privy to up to this point.

[meltoine]

Discharging her is not really the social worker's area. You need to find her case manager. Her case manager is responsible for getting her on Medicaid and finding a nursing home that will take her. My mom is the head of the case management department for a major NY hospital, so I know a fair bit about the process.

[pugz]

social worker = case manager at most hospitals. My dept is mostly MSWs and a few RNs. we answer to both titles

[meltoine]

Do you have CCMs as well?