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Aging chronically ill parent, palliative care, stuff I can’t sort out, siblings unevenly involved


Ginevra
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That’s about as succinctly and diplomatically as I can put it. I really just want a real adult to show up and figure this out. 

My mom landed in the hospital last night. She has advanced Parkinson’s and some other issues, though I’m not sure yet what precisely caused her acute pain episode yesterday. I went to the hospital today mostly to hang around there waiting to talk to a doctor about her case. My dad was there but he’s not extremely helpful. Before the doctor arrived, the case manager came in and discussed with my parents and me if we had met with a palliative care expert. No, I replied, we have not done that yet. I do think that’s very necessary, though, and I said so. 

My parents’ house is...bad. Seriously insufficient due to clutter close to hoarder-level, neglect (stuff breaks and they just work around it), and quite incorrect for people with mobility problems. It is one level, which is possibly the one good thing. Also, my mother still drives but I think probably should not. 

My two local siblings respond differently. There’s bad blood between one and she is very frustrated with my parents and is pretty much “done” with them. Which, okay; I get her issues, but it’s honestly bad news for me, obviously, because these problems don’t go away just because a sister isn’t interested. Other sister is helpful but is less available due to young kids and her husband’s work schedule. 

I don’t know what to do. I expect I will have to go back to the hospital tommorow, in part because I don’t have faith in my dad’s ability to listen/understand/plan if they discharge her, and he doesn’t ask questions. I need to be involved when they meet with palliative care consultant, but I also just have no idea how that’s going to go down. I cannot guess what they are going to suggest - additional medications? Alterations to their dilapidated house? Are they going to suggest she go to a care facility? I also don’t have a clue if there’s any money available; experience suggests not. 

Sorry this is so long and scattered; I feel quite incapable about this. 

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Is this a hill to die on for you?

What do you need for peace to get through this end of life stuff with your mom?

It's really hard when you have little/no control over a situation, and it's not playing out to your ideal.

FWIW, if you want to end-run around your parents, you can pull the social worker or your parents doctor aside and tell them that the house is unsafe for mom to discharge home to, that there is some heavy denial & cognitive issues at play, and that if they are considering a range of options of plans for your parents that they should know that but that you need to be shielded from the fallout of having narc'd on your parents because you still need to have an "in" to be able to help where you can. BTDT, survived to tell the tale.

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The thing is, I don’t have time to be all in. But I am the “in charge” one because nobody else will. I can’t go down there every day or even every few days. So here’s where I don’t know what to do. I’m not going to just wash my hands of them because they’re aggravating. AFAIK, there’s no money for, say, staying at assisted living. 

 

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I agree with responses above. You need to decide what matters to you, first, and then proceed. Because you are quite capable, I doubt you will get much resistance from anyone. Do you want to take over, or not? If so, I agree that you tell the social worker that home isn't an option, and I agree they will probably suggest rehabilitation center (although this can be tricky if you're talking about Hospice (Palliative care can mean hospice as well, but it doesn't have to)). Same for driving - social worker will tell you steps to take for that. 

If you decide to take over, just document it with your siblings (email is fine). Get a POA. Have their mail sent to you, have yourself added as POA on their accounts and manage their lives.

If you decide that you don't have the reserves or capacity or desire or will to do take over, then decide on your boundaries and communicate them to your siblings (again, email is fine). Let them know what you will and won't do. Let them know they can take over and you will support them by doing XYZ.

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18 minutes ago, Pen said:

Or maybe while still in hospital an assisted care facility can be found that she could go to direct from hospital.  

Assuming situation is beyond what can be managed at home. 

I don’t know how that works for people who don’t have two nickels to rub together. My understanding is that those people are SOL. 

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1 minute ago, Quill said:

The thing is, I don’t have time to be all in. But I am the “in charge” one because nobody else will. I can’t go down there every day or even every few days. So here’s where I don’t know what to do. I’m not going to just wash my hands of them because they’re aggravating. AFAIK, there’s no money for, say, staying at assisted living. 

 

A few possible avenues. Medicaid if they are in fact destitute - no way to know without getting involved. Anyone a veteran? There is money available from the VA if so.

You could set aside a week to get things settled from at least the legal / financial aspect. Get a POA, mail forwarded, name added as POA to checking accounts, tell the social worker that mom can't be released home, let local siblings know all of this. Then let siblings know that either social worker will find a place for mom that can be paid for in some way (likely Medicaid), or one of them can get involved.  That you've reviewed their finances and what the state of things are.

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2 minutes ago, Quill said:

I don’t know how that works for people who don’t have two nickels to rub together. My understanding is that those people are SOL. 

No, not entirely. First, Medicare will pay for a short-term skilled nursing or rehab facility if medically necessary after at least a 3 days hospitalization. Medicaid (if they qualify) will pay for skilled nursing, but they have to be truly destitute. A social worker can also help with that process.

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That's hard.

Your father may very well be very overwhelmed as well.

If she's chronically ill, but not within-a-fairly-forseeable-timeframe terminally ill, then considerations such as what private long term care insurance they may have, and/or what Medicare covers for "step-down" / rehab, will matter.  Medicare does cover such services, but only for a finite term (something like 8 weeks?), and they are prodigiously expensive if not covered.

There are services that can come into a private home and "senior-proof" it, particularly if it's all on one floor. Some adaptations are covered by Medicare; some of them require pre-clearance. Medicare will also provide things like a hospital bed, wheelchair, toilet adapter/lift, shower stool etc -- again with pre-clearance.  Medicare will also cover some -- in my father's case, not enough -- in-home services like PT and OT to learn/remember how to safely stand/ maneuver through basic life functions.

You might start by finding the hospital social worker and getting recommendations from her on how to navigate through the next phase / phases -- both in terms of stuff & services, and also the financial stuff. Sadly, they go hand-in-hand.

 

Just saw your latest posts.  If they have no financial resources but the house, then MedicAID will kick (ultimately) kick in (without your father having to leave his primary residence).  Medicaid actually does cover end-of-life nursing home care, though finding a good facility and "spending down" assets to get to eligibility also requires navigation.

Hugs, dear.

 

 

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Quill, rename the thread to something like: "Parents have no money for assisted living. HELP." 

This will bring you the people who know how to get the parents from "broke and dependent on me, but I can't do it" to "on Medicaid and in a nursing home." 

(Edit - Crosspost, Laura and Pam have arrived with some good advice.)

 

Edited by Lang Syne Boardie
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4 minutes ago, lauraw4321 said:

If you decide that you don't have the reserves or capacity or desire or will to do take over, then decide on your boundaries and communicate them to your siblings (again, email is fine). Let them know what you will and won't do. Let them know they can take over and you will support them by doing XYZ.

I feel like that’s exactly what my sister is doing and I don’t think well of it. I frankly think it’s shitty to say, “Oh, I can’t do this. Sorry. Figure it out without me.” 

BTW, I’m experiencing that from the other side of the family, too, as there is one sibling who won’t do diddly shit to help with my MIL. He hasn’t even stopped by, even though she hasn’t been in Maryland for a year. 

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1 minute ago, Quill said:

I feel like that’s exactly what my sister is doing and I don’t think well of it. I frankly think it’s shitty to say, “Oh, I can’t do this. Sorry. Figure it out without me.” 

BTW, I’m experiencing that from the other side of the family, too, as there is one sibling who won’t do diddly shit to help with my MIL. He hasn’t even stopped by, even though she hasn’t been in Maryland for a year. 

 

No denying it's shitty. 

I have the fortune or misfortune of being an only child. So there's no one to share the burdens with, and also no one to be annoyed with. It has its pluses and minuses. At the end of the day, there isn't anything that actually obligates you to take care of your aging parents. And if your sister has decided she won't, then there's not a lot you can do about that. Decide what you can live with and can't. 

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3 minutes ago, lauraw4321 said:

 

No denying it's shitty. 

I have the fortune or misfortune of being an only child. So there's no one to share the burdens with, and also no one to be annoyed with. It has its pluses and minuses. At the end of the day, there isn't anything that actually obligates you to take care of your aging parents. And if your sister has decided she won't, then there's not a lot you can do about that. Decide what you can live with and can't. 

But who turns their back on their parents and leaves them to suffer and/or die? I don’t know...I see that sentiment on here sometimes but I don’t really get it. I already feel like there are some oversight things I should have been doing for the past ten years. 

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16 minutes ago, Pam in CT said:

If she's chronically ill, but not within-a-fairly-forseeable-timeframe terminally ill, then considerations such as what private long term care insurance they may have, and/or what Medicare covers for "step-down" / rehab, will matter.  Medicare does cover such services, but only for a finite term (something like 8 weeks?), and they are prodigiously expensive if not covered.

Well, that’s one thing I don’t know and haven’t yet heard from a doctor’s lips. It’s complicated by my mom’s superstitious inability to say what is exactly going on. She has metastasis from breast cancer, but I don’t know the extent of that. Parkinson’s is a bitch, but it doesn’t kill you. So, the answer to that question lies in how much the Metastatic Breast Cancer is expected to shorten her life, if that has even been assessed or mentioned by any doctor. 

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6 minutes ago, happysmileylady said:

Unfortunately, sometimes, our family obligations don't care how much time we have.  (and I use the term family obligations to mean obligations we choose because we love our families....I am presuming there's no disfunction and such going on.)

It’s quote dysfunctional; thats why my one sister is checking out. But they aren’t ax murderers. So, I mean, I’m not writing them out of my life. 

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26 minutes ago, Quill said:

I don’t know how that works for people who don’t have two nickels to rub together. My understanding is that those people are SOL. 

 

Is Medicare coverage available for her? 

That will at least sometimes cover - guess it depends on place diagnosis etc.

 

For assisted care facility it often takes moving onto Medicaid which can be difficult process... spending down of most assists, though medical bills and assisted care would have quickly do that

In some places hospice is only available if it’s near end of life and that wasn’t clear from what you wrote.  It seems like a big jump from still driving but maybe shouldn’t be to move into hospice and prepare to die very soon

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The insurance definition for hospice care is projected 6 months or less to live. You don’t have to die in that time frame, like they won’t boot you out, 😉 but that’s the qualification.

Most hospices cover durable equipment (ie would provide hospital bed, potty chair, etc if needed), all medications, diapers etc if needed at night. They will treat some illnesses but the goal is quality of life management not healing. They tend to be super awesome at pain management.

You can frame that as “medical care comes to you, great at pain management, don’t have to worry about finances”...in convo.

But, if the house is near uninhabitable, nursing homes can work with hospice too. 

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2 minutes ago, Dotwithaperiod said:

Please find a hospital social worker. They were a miracle for us. Tell her straight up that you will be the main family member dealing with this, along with your dad.They can give you info, make phone calls for you, give you their opinions on so many things. Medicare, I believe, will pay for a 30 day stay in a rehab type place( in our case it was another wing of a nursing home). I’m prettty sure we were told Medicare could reauthorize up to 60 additional days if necessary. The social worker also can set up a visiting home nurse if she ends up going directly home, and can get you in contact with hospice should it reach that point. In our case, though, hospice would not visit us in the hospital, they required the patient be at home before meeting. But they also had all of the equipment someone mentioned above ready to be delivered the day after returning home.

She has to qualify for rehab in order to have it paid. If the Parkinson’s is advanced, as is the cancer mets, this may be hard. 

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If the history with the sister is as I'm remembering posted not so long ago, I can understand her side and why she feel she needs to have a boundary.  She may feel it will hurt her relationship with her own kids.  If you have a good relationship with that sister, maybe you could ask that she do some logistical work for you?  I think it's fair to set your boundary.  That doesn't mean totally stepping away and letting your parents suffer and die alone.  But it also doesn't mean letting them move in with you.  Aging parents are important.  So are teens and young adult children.  None of us are guaranteed a tomorrow.  So is a steady income.  So is rest and reprieve after coming off your own health scare.  These are all balancing acts and it's very healthy to know your boundary and enforce it early and often.  The other issue is unless your parents have given you permission, they may have very strong opinions on how to proceed and you may be able to do very little about it.  I agree with having a conversation with the social worker/doctor about your concerns.  If you can say you will stop in once a week (or whatever is realistic for your life, health, and sanity) and that's what you can do, that is fair and siblings can step up or not.  Social workers may get involved.  End of life care is rarely perfect.  Even if you have someone in your home, they may not be getting adequate care if you're not trained and you may be sacrificing mental and physical health.  

I have had several friends walk through that medicaid process to get their parent with no money into assisted living/nursing care.  It's better to walk down that road sooner rather than later.  My mom dealt with my grandmother's home with a company that does estate sales.  She took what she wanted, they cleaned and cleared everything else out and ran an estate sale over a weekend.  I think my mom ended up with a very small amount of money back.  But it was worth it not to have all of us trying to dig out of that mess.  Although, I have thought about getting a dumpster and setting up a vehicle for donations and going at our parents house for a weekend and invite other sibs, etc.  

I'm sorry you're dealing with this!  

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Yes to the hospital social worker.  They can also help your parents apply for Medicaid.  If eligible, Medicaid will pay for some in home care to help with cleaning, meds bathing, groceries, cooking, etc.  That help can be wonderful if you can find good people for the job 

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19 minutes ago, Quill said:

But who turns their back on their parents and leaves them to suffer and/or die? I don’t know...I see that sentiment on here sometimes but I don’t really get it. I already feel like there are some oversight things I should have been doing for the past ten years. 

Quill, I am sorry you are in this situation. I don't have specific advice, but I want to comment on the bolded, based on our own experiences with elder care:

there is very likely not a lot you could have done in terms of oversight for the past decade - as long as your parents are adults in the possession of their mental faculties and a court would not declare them incompetent. Adults have the right to choose their own living circumstances even if their choices are not what you would consider sensible and safe. They have the right to live in a  house stuffed to the gills with junk, have the right to refuse repairs, have the right to decline advice.  It's their life. And it may be excruciating to watch them live in their stubborn ways, but they have the right to do that.

My FIL has made decisions about his care arrangements that led to family estrangements because those are not what the family would consider  in his best interest. But as long as he is only old and disabled, but not mentally incompetent, he absolutely has the right to live under whatever conditions he pleases. This fundamental right to autonomy and independent decision making overrides all our concerns about his well-being. Realizing this let us make peace with his choices.

Just wanted to add this perspective. Unless your parents are incompetent and you are their legal guardian, you are not responsible for the state of your parents' home and their overall situation.

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Quill— Have you ever had a super direct convo with your parents? Like, I know there has been a whole heck of a lot of non-talking and misdirection.... would there be any benefit to asking, “What is your plan for...?” “What are you going to do when?”

There is totally no point to having this convo with my MIL as nothing bad will ever happen (except it does, regularly), but I am wondering on this point. No need to reply...just tossing out food for thought.

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I do not know if this still applies but about six years ago, my fil went into hospice after his cancer metastasized.  He initially went home but that only lasted a day or two and he was admitted back into a hospital based hospice unit.  His expenses were covered by Medicare, etc (maybe VA too????) but certainly no private funds.  There are more resources out these for actually older sick people than there are for younger.  A social worker would know about all the options.

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6 minutes ago, regentrude said:

Quill, I am sorry you are in this situation. I don't have specific advice, but I want to comment on the bolded, based on our own experiences with elder care:

there is very likely not a lot you could have done in terms of oversight for the past decade - as long as your parents are adults in the possession of their mental faculties and a court would not declare them incompetent. Adults have the right to choose their own living circumstances even if their choices are not what you would consider sensible and safe. They have the right to live in a  house stuffed to the gills with junk, have the right to refuse repairs, have the right to decline advice.  It's their life. And it may be excruciating to watch them live in their stubborn ways, but they have the right to do that.

My FIL has made decisions about his care arrangements that led to family estrangements because those are not what the family would consider  in his best interest. But as long as he is only old and disabled, but not mentally incompetent, he absolutely has the right to live under whatever conditions he pleases. This fundamental right to autonomy and independent decision making overrides all our concerns about his well-being. Realizing this let us make peace with his choices.

Just wanted to add this perspective. Unless your parents are incompetent and you are their legal guardian, you are not responsible for the state of your parents' home and their overall situation.

This was such a hard thing to deal with with my FIL. He was never mentally incompetent (except maybe the last few days of his life in hospice.)  But he was living in a very bad living condition with bad people and tjhere was nothing we could do at all without making things even worse.

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(((Quill)))

My dad died of Parkinson's complications last year.  He spent much of his last few months in the hospital. 

I live several hours away and only visited once.  I was planning to visit again, but he died the day before I was planning to visit.  I did what I could do and I really have no regrets.  My brother and sister may have a different opinion of this, but I am content with my level of involvement.

My sister took on a lot more of the responsibilities, but she lives much closer, has no children, and can telework from just about anywhere.   But , if she had decided to to be as involved, I would have been ok with that.  My brother also lives fairly close to my parents, but he is unable to drive due to medical issues and has a baby.  I don't even know how much he was involved and to me it isn't my business.

I guess my take is that children should only be involved as much as they want to be and that is solely up to that individual and should not face judgment from others.  You are not obligated to do more than you want to do.  But, you also have to resign yourself to the fact that everything may not be done the way you wish.

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31 minutes ago, Patty Joanna said:

 

2.  Be prepared for having to adjust your understanding of the world you thought you knew.  All of our lives, we have used medicine to FIX things.  Palliative care doesn't do that.  Palliative care eases the living of life but it doesn't aim at curing a disease.  This was a shock to me, and it was especially a lot to deal with at 2am with a brusque doctor (I didn't really mind the brusqueness--at least I was getting straight answers and straight talk--but it was just so...out there and direct that it took a little bit to deal with it.  It's a different planet.

 

 

That's true--the intent of palliative care is to help immediate/current quality of life. But it's common for people who are actively working on fixing/curing their medical issues to also receive palliative care. It happens all the time. When a person who is undergoing chemo aiming for curing their cancer also gets treatment for the chemo side effects like mouth sores or nausea, or gets mental health counseling to help deal with the stress/anxiety that comes with having cancer--all of that is considered palliative care.

ETA: Quill, I've never had to do this myself, so I don't know if it works or not. But if you don't feel comfortable bringing your mom home when they try to discharge her, a knowledgeable person on another board I'm on says the magic words are "I do not feel safe taking her home." Apparently that sentence will usually buy some more hospital time and is a huge incentive for them to get the patient more home services before discharging.

Edited by Pawz4me
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1 hour ago, Quill said:

But who turns their back on their parents and leaves them to suffer and/or die? I don’t know...I see that sentiment on here sometimes but I don’t really get it. I already feel like there are some oversight things I should have been doing for the past ten years. 

 

Far more people than you can imagine. I realize it's quite easy for me to say (since I have none), but I think it's wasted time and effort to wish that your siblings would help.

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1 hour ago, prairiewindmomma said:

Quill— Have you ever had a super direct convo with your parents? Like, I know there has been a whole heck of a lot of non-talking and misdirection.... would there be any benefit to asking, “What is your plan for...?” “What are you going to do when?”

There is totally no point to having this convo with my MIL as nothing bad will ever happen (except it does, regularly), but I am wondering on this point. No need to reply...just tossing out food for thought.

Hail no, but stay tuned; it’s coming soon to a theater near me. It’s not for nothing that my Word of the Year is “Brave.” 

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17 minutes ago, lauraw4321 said:

 

Far more people than you can imagine. I realize it's quite easy for me to say (since I have none), but I think it's wasted time and effort to wish that your siblings would help.

Yes, it is; I’m not wishing it (not in the sense that I really think it will change). That’s exactly why this is hard. It comes down to me and I don’t want it to come down to me. But there’s simply no part of me that could turn my back on them or just do nothing knowing they are not getting the help they need. I guess some people do that but that seems pretty unimaginable to me for all but the worst humans who don’t deserve the title of “parent.” 

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re "magic words"

44 minutes ago, Pawz4me said:

That's true--the intent of palliative care is to help immediate/current quality of life. But it's common for people who are actively working on fixing/curing their medical issues to also receive palliative care. It happens all the time. When a person who is undergoing chemo aiming for curing their cancer also gets treatment for the chemo side effects like mouth sores or nausea, or gets mental health counseling to help deal with the stress/anxiety that comes with having cancer--all of that is considered palliative care.

ETA: Quill, I've never had to do this myself, so I don't know if it works or not. But if you don't feel comfortable bringing your mom home when they try to discharge her, a knowledgeable person on another board I'm on says the magic words are "I do not feel safe taking her home." Apparently that sentence will usually buy some more hospital time and is a huge incentive for them to get the patient more home services before discharging.

 

Someone knowledgable really should compile a glossary of magic words. Because most of us mercifully only go through this once or twice in a lifetime... leaving the next cohort going through it to re-invent the wheel and learn the magic words anew.

When my father was dying of fairly rapidly advancing cancer, rotating between the hospital, step-down "rehab," home, rinse repeat through to hospice, a social worker told me just those magic words in Pawz' bolded, to get a few more days in the hospital or in the "rehab" center.  (Rehab, by the way, doesn't always mean the patient is getting better.  They are also used to provide a time and space for PTs to help patients learn to navigate using a wheelchair, or stand up safely on shakier legs, even when the diagnosis is terminal.)

A PT told me the magic words "I'm afraid he's unable to manage Activities of Daily Life," to get in-home PT services.

The last time he left home, a truly ghastly day during which, in the morning, the PT had arrived to find him unable to get out of bed, but he didn't want to go to the hospital because he insisted "he just needed some rest" and my mother didn't want to overrule him because (as regentrude, correctly, argues) agency, but the PT strongly urged he go to the hospital if he wasn't able to get up by noon, and by noon he was still unable to get up to go to the bathroom, and my mother was not strong enough to help him, so she called me (adjacent state) sobbing, but didn't want to call 911 against his wishes, but implored me to come up, but I'm three hours away so by the time I got there they were both absolute basket cases... but when *I* called 911 the dispatcher asked "is he in acute pain?" which IN HINDSIGHT I later realized the correct magic word answer was "yes" but not knowing that I told the truth, no, he's not in acute pain he just cannot get out of bed...

...at which point the dispatcher carefully asked when was the last time any medical provider had seen him, and I mentioned the in-home PT had been around earlier and recommended he go to the hospital, at which point the dispatcher asked me to get a pencil (?!) and slowly spelled out for me...

Your father needs what is called "medical transport." Write that down. What hospital has he been treated at? Is that the nearest hospital? No? Then what your father needs is "medical transport to a designated hospital with his existing providers for an existing diagnosis. Write that down. Now, here is the thing. For Medicare to pay for medical transport to a designated hospital, there has to be a pre-authorization. If I take your call right now, the ambulance will take your father to the closest hospital, and you will be charged $1200 that Medicare will not reimburse. You need to call the PT, you need to explain the situation, and ask her to call me. Here is the number.  I will call you back and let you know the ambulance is on its way."  

Which, bless him, he did.  But what kind of a system depends on magic words and the willingness/ability of dispatchers to do that.

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2 hours ago, happysmileylady said:

There is a very real difference between "I can't do this, sorry, figure it out without me" and

"I don't have the time or resources, but what I can do is X and Y and Z."  If your sister isn't proposing some other way to help, then she isn't setting boundaries or outlining what she can or can't handle..................she's abandoning.  Saying that you can't do A but you can do B is not the same as saying that you can't do anything, sorry not sorry.

My sister is furious with them. She’s not setting boundaries, she’s washing her hands of them. I don’t even completely understand it TBH; it seems disproportionate to the real issue. (Sure do hope she’s not on this board right now, which is within the realm of possibility as she is a homeschooler too.)

But I guess that’s where it’s moot to me. Whether she’s politely drawing normal boundaries or she’s furiously slamming the door shut, the result is the same - only two of us are left to do things and the other of us has little kids and therefore, legitimate inability to do certain things. 

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Just now, Quill said:

My sister is furious with them. She’s not setting boundaries, she’s washing her hands of them. I don’t even completely understand it TBH; it seems disproportionate to the real issue. (Sure do hope she’s not on this board right now, which is within the realm of possibility as she is a homeschooler too.)

But I guess that’s where it’s moot to me. Whether she’s politely drawing normal boundaries or she’s furiously slamming the door shut, the result is the same - only two of us are left to do things and the other of us has little kids and therefore, legitimate inability to do certain things. 

Did you just post about the situation between your sister and parents recently? They treated one of her children cruelly and refused to go to a family wedding because that child was going to be there? Sorry if I am misremembering and have you mixed up with someone else - and also sorry that you are having to deal with this mess on your own!

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16 minutes ago, Dotwithaperiod said:

I can’t argue that. A year ago my mom went from the hospital into a rehab, and it actually was for rehab. A month later when her husband left the hospital, he, too went to rehab in a nursing home. It was known to be merely a go between, though, either before going home or into a nursing home. There was no rehab even attempted, but the doctors ok’d it and Medicare covered it. I’m hoping Quill’s parents encounter the same ease of help.

That would be fantastic.

We had a scramble where relative didn’t qualify for rehab initially and didn’t qualify for nursing home care either. She eventually re-qualified but it was a nightmare. They are super strict where relative lives because bed counts are tight.

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14 minutes ago, Dotwithaperiod said:

I can’t argue that. A year ago my mom went from the hospital into a rehab, and it actually was for rehab. A month later when her husband left the hospital, he, too went to rehab in a nursing home. It was known to be merely a go between, though, either before going home or into a nursing home. There was no rehab even attempted, but the doctors ok’d it and Medicare covered it. I’m hoping Quill’s parents encounter the same ease of help.

I don’t think it will go this way because she cannot be rehabilitated. I think the goal is going to be figuring out how she can go about daily life and not be in pain...which, part of not being in pain is probably going to be on opiates and muscle relaxers or anti-convulsants, all of which - I think; don’t know for sure yet - preclude driving or other activities of judgment. 

I think part of what makes this tricky for me is both my parents are living. It would be, in some ways, more obvious for me to take charge if, say, it was just my mom. There could be no hope or assumption that my dad could be the helpful one. But my dad isn’t that helpful. He’s not in superb shape, either, has terrible balance, and is weak-willed about anything medical. 

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11 minutes ago, Selkie said:

Did you just post about the situation between your sister and parents recently? They treated one of her children cruelly and refused to go to a family wedding because that child was going to be there? Sorry if I am misremembering and have you mixed up with someone else - and also sorry that you are having to deal with this mess on your own!

Yes. That is the situation.

Although, to clarify, that is my sister’s interpretation of why they did not go to the wedding - though I don’t necessarily disagree; it’s plausible - they did not *say* “We refuse to come because of that odd child of yours.” 

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We had similar experiences with my MIL. Fortunately, my sister is a social worker who knew exactly how to navigate the situations, which were complicated for a variety of reasons. Seek out a social worker who can help you.

I’m sorry you’re going through this, Quill. Please carve out the time you need to stay well also.

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9 minutes ago, Dotwithaperiod said:

 Does your state have an office of aging? They may be able to help with things that aren’t actually hospital related.

Probably. I’ve never looked before, but that might be a help. 

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Quill, I’m so sorry you’re going through this.  I have no words of wisdom, but can offer a kind of sisterhood, and empathy.  And also gratitude for posting about it, because this thread is full of good info.  

I wish I’d read the magic words above on Thursday.  But I didn’t, and brought my mother to my home from rehab, this past Friday.  She needs 24/7 supervision, can’t even move chair to bed. She should not have been discharged, and PT and OT are minimally helpful.  That’s all Medicare will cover, though.  I believe they can readmit her for up to 30 days though, if the PT agrees, so I will talk to them about it if things don’t improve.

I’m taking notes while reading, and planning to file for Medicaid ASAP.

Again, I am so sorry you’re on this journey.  It’s hard.  
 

And I’m grateful to everyone who’s posted here with some wisdom.  Thanks, all.

 

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This was me over the past 7 years.  Both my parents have now passed. I have two siblings but they were not local. Neither was I for that matter, but I was the closest (at 1000 miles away).  They were also not very involved; although though were appreciative that I was and acknowledged that.  

First I went over paperwork, budgets, accounts etc with my dad.  Learned where everything was.  Started getting a handle on some of it though he still managed it (for another 6 months and then he died and I got it all to handle.)

Second, they were making decisions to finally move to a retirement place and I started going through the house. File cabinets with 60+ years old bills and receipts.  And just stuff.  I only focused on the financial stuff and the memory stuff (photos, movies, special things).  So my focus was shredding papers that weren't needed and keeping stuff that was important.  After they moved out of state (to be near me), then a neighbor went through the house and sold/donated/threw out things.  I regret a few things that were left behind, but I had 3 small kids and limited time.  I tried to work at night after my mom went to bed because the shredding of papers was upsetting to her.  She thought I was throwing her life away.  Not really, just my nursery school bill from 1967.

Third, I found a place near me in my state. My folks insisted on independent living so that's what I found.  Wrong decision.  So correctly identify your folks needs and know their budget - social security, pensions, bills etc.  You will need to get added to their accounts.  That's important. 

Once you are on their accounts, check the beneficiaries and make sure they are completed and updated.  Less hassle after death so it doesn't go through probate.

Set up bill payment to pay bills automatically. I still had everything going to my mom because she wanted to see it all.  She just couldn't handle it all.

Get power of attorney so you can make phone calls on their behalf.  I needed to call the cable company or credit card company and unless I was on those accounts or sent POA over, they needed to talk to her.  She would just say 'you can talk to my daughter' and then I'd get the phone back.  But that meant I could only do that stuff at her place and not at my convenience.  

Get health care POA.  at least as secondary to your dad.  you want to be able to know what's going on.

Are either of them veterans?  If so, they are eligible for VA benefits.

Do your folks have DNRs?  Do they want life-saving measures or just to die when they die?  Make sure you have those papers.

Is your mom otherwise healthy?  or dying?  You mentioned palliative care.  Hospice will pay for some in-home care though it is not 24-7.  If she makes a mess or needs diapers changed, they are not there to do that.  If she goes to a hospice facility, they will.  But then you need to make sure they don't over-drug her.

Does your mom need rehab to get stronger?  Medicare will pay for either in home or facility rehab.  Maybe 70 days?  I forget the amount of days of full payment. The hospital will have suggestions on places, though you may want to visit them yourself and pick one.

It's time-consuming. They sound like they need the help and you need the paperwork to keep things easier on you. Hugs.  It is not easy.  The good part of the no-sibling involvement is you can make decisions on your own without consulting them.  That is a plus.  But it also means all the work, phone calls, etc falls on you.

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10 minutes ago, Quill said:

Yes. That is the situation.

Although, to clarify, that is my sister’s interpretation of why they did not go to the wedding - though I don’t necessarily disagree; it’s plausible - they did not *say* “We refuse to come because of that odd child of yours.” 

I would bet that one incident just brought it the whole thing to a head.  I would assume there has been other tension and issues that were ongoing that their household was privy to.  I guess I could see not wanting my vulnerable teen to feel like I was less than supportive to their emotional needs.  Anyway - neither here nor there for this discussion.  I just wouldn't waste a lot of emotional energy on what your siblings can't do.  I would just assume they are doing what they can and let it go.  If I suddenly had a teen in crisis with unusual needs, I might  bump some priorities too even without the extra emotional baggage.

Just decide what you can do.  And people with young kids do deal with aging parents.  My young kids were always in the mix when we were transitioning my grandmother from independent living to rehab to nursing home back to hospital to hospice.    I spent a lot of time online researching for my mom/grandmother too.   I actually have a close friend that definitely felt like her relationship with her teen was damaged by being too over the top involved with aging parents but not engaging him.  I really do think it can be a balancing act.  If teens/young adults are used to having you as their sound board and cheerleader and suddenly you are spending many hours away and not available, that can affect a relationship.   So I would give both sister opportunities to be involved and not decide for them.   I'd have your healthy boundary - definitely use those social workers and key words.

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They are not veterans. I don’t know if my mom has DNRs or any Advanced Directives. My mom is not otherwise healthy. She is possibly terminally ill, IF any metastasis are doing damage. It’s a big puzzle piece I don’t know. The dr. Today told me the scans of her hips shows lesions but they are “old”. (Funny sidebar: every time I tried to type “lesions” today to my sisters, my phone autocorrected it to “lesbians.” So my mom has lesbians on her hip.😄) I don’t completely understand “old.” I think it means it is scar tissue-like and is not an active growth. Unfortunately, the dr also speaks English as a second language and it was hard to understand her under the best of circumstances. I think my dad could not understand her at all. 

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There seems to be a little bit of confusion about palliative care. Palliative care is not hospice. Palliative care focuses on qualify of life during treatment. It considers the goals of the patient and looks for ways to meet those goals.

For example:

Goal: independent living

Meeting goal: evaluation of home for safety concerns (fall risks, hygiene, availability of meal prep help, for example); home care assistance for bathing; appropriate medical equipment in the home such as a walker, adaptive tools, hospital bed, etc.

Goal: pain management

Meeting goal: assessing current pain level and source, working with MD to come up with the best treatment plan, which may include medication, physical therapy for range of motion exercises, etc.

This looks like a good source:

https://getpalliativecare.org/whatis/

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