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

[TechWife]

3 hours ago, lauraw4321 said:

 

At the end of the day, there isn't anything that actually obligates you to take care of your aging parents.

 

Yes there is. Refusing to care for elderly parents is considered abandonment in some states. Abandonment is a form of elder abuse. It is a crime.

https://www.ncbi.nlm.nih.gov/books/NBK98799/

That said, taking care of elderly parents can take many forms - I didn't provide hands on care, my brother and one of my sisters did that, but I made sure my parents had the hands on care that they needed. I also provided financial assistance to get that care (paid for an aid a certain number of days per week) and managed their personal business affairs.

 

 

[Pen]

1 hour ago, TechWife said:

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/

 

 

Good post and good linked article.

 

 I think someone brought up hospice because sometimes it can be paid for despite a financial resource problem...  ???   But it’s not clear that Op mother is terminally ill in a hospice time frame.  

 

My father has been from hospital to step-down facility a number of times, so I know it’s a possible scenario.  And rehab and palliative can possibly be connected...  learning to transfer from bed to wheelchair is sort of both for example. 

A neighbor died not long ago after several years with Parkinson’s—they managed to have him home for most all his end of life time, but not sure how they did it.  

A friend had a mother in a hospice facility and learned that a problem is that nothing could be done to help preserve as much health as possible as long as possible.  Apparently people were sweet, but food was awful, and vitamins, trip into fresh air and sunshine, etc weren’t allowed.   

[Laura Corin]

9 hours 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.

Yes, it wasn't until my mother's living situation was a risk to the 80yo next-door neighbour (attached house; fire risk due to dodgy wiring and unattended gas leak which my mum couldn't smell) that i was able to intervene.  Best wishes to you, Quill.

[Carrie12345]

I wish I knew the detailed process to share, but I can only reiterate that hospital social workers are e v e r y t h i n g. Our relative had all of his care needs addressed. He didn’t take every single one offered, but they were made available.

Saying “This is what I can do” is MILES from washing your hands of someone, for what it’s worth. Not being able to provide direct and constant care isn’t a failing. It’s a common human limitation.  I’m just saying that as someone who has a grandmother who’s been in a care facility for... I don’t know now... close to a decade? And she has 3 children and their families who adore her. But they each have unintentional limitations. (My mom handles POA from 900 miles away.)

Talk to the social worker. And be kind to yourself!

[klmama]

3 hours ago, Carrie12345 said:

(My mom handles POA from 900 miles away.)

How does she do that?  

[HS Mom in NC]

15 hours ago, regentrude said:

 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.

I'm in complete agreement on this, and I'll add the other side of the coin to give the full picture because most people want to only focus on one side or the other.

-Adult children have the right not to spend the weeks and months required to cull through all that stuff and keep it, track down relatives who might want it, or sell it just because the elders say it's "valuable"  and want to "keep it in the family" or "get money for it" and variations on those themes. If ordering in a huge dumpster and a cleaning crew to throw it all away is all the adult children can afford to spend time on to get the house on the market, so be it. If there are no adult children willing or able to handle that, then so be it. It will fall apart eventually and become derelict. Whatever mechanisms in place for those situations will kick in. 

-Adult children have the right to say they can only do so much when it comes to prepping and selling the elder's house. If the only time they can invest is to sell it as is as a fixer upper at a low rate, so be it.  Home renovations are time consuming, so the burden of doing them is on the elder while they're still functioning.  They aren't the burden of the adult children to spend the time and energy needed to make the house as marketable as possible.
 
-The adult child has the right to not take the parent to the adult child's house and care for them while they're working, raising children, and/or dealing with their own or another elder relative's elder care issues and other reasons.  It's not usual for adult children to deal with more than one wing of their extended family in elder care situations. If some form of assisted living (private or taxpayer funded) is all the adult child can manage for whatever reason, so be it.

-It's not the adult child's responsibility to make up for the elder's financial decisions.  If the elder doesn't have funds for more expensive care, then low cost it is.  For elders who spent money on vacations, eating out, more house than they needed, more car than they could really afford, stuff, etc. when they could have put it into retirement, then state funded care is the natural consequence. Same with situations where life happened and through not fault of their own- if finances only allow for lower cost care then that's what they'll be.  What they can afford is what they can afford.

-It is not the adult child's responsibility to make up for the consequences of the elder's end stage of life choices.  If an elder has decided to continue with all kinds of intervention to prolong their lives, it's their right, but the elder will have to bear the consequences. If choices result in prolonging needing to be intensively cared for, then the elder will have to make do with whatever care is in their price range. The adult child doesn't have to spend time, money, and energy they don't have doing the caring.

So that's what people should have in mind when they establish what they will and won't do in elder care.  It may be that the most realistic thing is to put the elder in a care facility so the adult child has the bandwidth to visit and handle putting the house on the market. Or maybe the adult child who can't do the hands on care can run errands and provide some funds for a sibling who is wiling and able to do so.

And we should all look at our lives right now and ask, "Are any of my current and projected lifestyle choices going to create unnecessary burdens for someone else? What can I do now and in the future  to minimize those burdens? What are the inevitable, predictable outcomes of the path I'm currently on? How should I adjust my route?" 

[Guest]

Thanks everybody, for contributing your thoughts, even if I haven’t responded or liked your post specifically.

Quick update: I think they are releasing her today, to home, with a PT and nurse coming to the house. I instructed her that if they ask if she drives, the answer to that question is NO, because they will not cover those services if someone says they drive. She can’t drive at present in any case; she is on medication that precludes it. 

I did not see a doctor today, which is not ideal, because I wanted clarity on the “chronic” vs. “Terminal” designations, though I *think* she is classified as “chronic,” based on words the case manager used. Her ultrasounds were fine, no blood clots. It sounds like the cause of the episode was a met from cancer on her spine compressing the nerve. I wish I had more info about this but I’m going to have to go with that for the time being. 

I talked to my dad and asked more questions directly than probably ever in my life. I didn’t get to everything, but I asked him about how he feels about caring for her and does he feel adequate/able. He said the only thing he can’t manage really is if she falls, he cannot pick her up. Fortunately this has only happened once. But for regular daily living, he (thinks, anyway) the care he provides is adequate. I talked about the house, specifically plumbing issues and the problem of a freezer (empty but functional) which blocks access to the plumbing needing repairs. The electric company has an old appliance recycling program, which IMO, is the idea way to address that freezer in the way. I found the thing online and showed my dad, “Look! You can schedule a pick up directly from the website.” I think he may actually do it, but even if he doesn’t, this is now an open line of communication so I think this will happen. He will even get $50 for the freezer through the program, so that is most likely a motivator. My dh is going to see what he can do to address their immediate plumbing problems. 

I thought a lot about “just decide what you can do” said here. I think one thing I am going to do going forward is come to their house regularly, like once every week or two. Guys, you can’t imagine the anxiety it brings forth to do so, but I’m going to have to “be brave” and do it. Not going to their house makes it worse because I don’t know how bad problems might be. In some cases, they may not even be as bad as I think. 

[Tiberia]

Sorry you're going through this, Quill. I've been through something similar with my FIL and dad, but they were both more flexible and easy to communicate with.

They both hated to give up their independence, and were also in a bit if denial, so I learned to initiate difficult conversations with "When the time comes, how do you want to handle _______?" In their mind, when the time comes... was very far off in the future, but I knew it could be sooner than later. If your mom is in denial about all of it, this may not work. But it might help your dad. And it might help you know their wishes and get a game plan.

Also, you might try to help them realize that they have some say in decisions now, but if they put off decisions for too long, they will have limited choices in the future. Eg. My dad wanted to move across the country to be near us when the time comes... but he had to understand that if he waited too long, he would not be physically able to make the move. Fortunately, he made the move before he deteriorated too far.  

I think you are a good daughter and should "do what you can do", but I agree with PPs who warn you that you can't fix their decades of life choices with your life's blood, sweat, and tears. They don't get to ruin your life because of their poor choices/non-decisions. And you get to honor their life choices, even if it means watching them struggle with poor decisions. 

I'm so sorry. I know how very stressful this is.

[fairfarmhand]

1 hour ago, Tiberia said:

S

Also, you might try to help them realize that they have some say in decisions now, but if they put off decisions for too long, they will have limited choices in the future. Eg. My dad wanted to move across the country to be near us when the time comes... but he had to understand that if he waited too long, he would not be physically able to make the move. Fortunately, he made the move before he deteriorated too far.  

I

This is so true. Also, older people don't usually want to leave their friends/connections. If they move before they get too frail, they can make NEW connections in the new place. If they wait until they're very bad off, they won't be as easily able to meet those new people.

[Valley Girl]

19 hours ago, Quill said:

I thought a lot about “just decide what you can do” said here. I think one thing I am going to do going forward is come to their house regularly, like once every week or two. Guys, you can’t imagine the anxiety it brings forth to do so, but I’m going to have to “be brave” and do it. Not going to their house makes it worse because I don’t know how bad problems might be. In some cases, they may not even be as bad as I think. 

Hugs, Quill.

May I make a suggesetion with regard the above part of your post? My widowed grandmother was...difficult.. when she got older. It was stressful for whichever person was scheduled to do her shopping, errands, etc.  for her that week. One rule we had was that nobody went over to her house alone. So when my mom went over, one of us kids went along. (I was a single adult living on my own, but I was usually the one who went with her.) It REALLY helped to have someone else who could contribute to conversation, provide a distraction, etc. Maybe one of your kids (or a really dear friend) would go with you. To help YOU.