What do you do when you/sibs don't agree re: parent care?

[StaceyinLA]

We care for my 87yo mom. She lives on my property, but all of the siblings (6, including myself) make an effort to help with her care. She has Alzheimer's, acute leukemia and other health issues (diabetes, high bp, etc. - controlled with medicine).

 

She takes mild chemo every 4 weeks. Most of us wouldn't have chosen this, but only my oldest sister was with her at the dr the day he told her her options and she basically gave her the "if you wanna live you'll have to do this," which was bs because it will only slow the progression of the cancer not stop it.

 

Anyway, the chemo really takes a toll on her. Five of us would like to stop the chemo. We really don't feel that mom has the mental capacity to understand the long-term implications, and we are watching her decline rapidly. The one lone sister (who basically does the least actual care for her) does not want to stop it.

 

What would you do if in this situation?

[Pippen]

Which sibling has power of attorney for healthcare?  IMO that's the person your mom trusted to make decisions if there ever came a time when she couldn't make them for herself. POW makes the call, even if one or more sibs don't agree.

Edited December 14, 2015 by Pippen

[TeenagerMom]

Does anyone have a Power of Attorney? If not, that needs to be done yesterday. Then stop the chemo against the sister's wishes since all 5 other siblings are on board. Be prepared for backlash, but remember, this isn't about your sister's feelings, it is about your mother's well-being. I would also start looking into hospice care options amd give your sister literature to read up on.

[G5052]

Yes, this is a legal issue. For someone to make the medical decisions, a doctor will have to declare your mother incapacitated and then the medical power of attorney takes over.

 

If the doctor felt like your mother was clear enough to make the chemo decision herself, that comes first. Most doctors err on the side of caution this way. A lawyer once told me that incompetent in that state basically means they're bedridden and have to be changed, dressed, and fed. That's pretty much the stance my parent's doctors took. Even when my mother was accepting rides from anyone and writing checks to anyone who claimed to be owed money, she was considered competent.

 

If you don't have the medical power of attorney done, most medical facilities have forms. You don't have to go to a lawyer.

[Bluegoat]

Have you sat down all together with the doctors?  It sounds like your sister isn't looking at things clearly.  I would make a point of saying to the doctor - if you were in my mom's position, would you get the chemo?  I'd bet dollars to doughnuts they would say "no way."

[TechWife]

Does anyone have a Power of Attorney? If not, that needs to be done yesterday. Then stop the chemo against the sister's wishes since all 5 other siblings are on board. Be prepared for backlash, but remember, this isn't about your sister's feelings, it is about your mother's well-being. I would also start looking into hospice care options amd give your sister literature to read up on.

 

Just an FYI, a power of attorney must be in place before a person looses their mental capacity to make decisions. If there isn't one already in place, then one of her children can seek guardianship through the courts. 

[FaithManor]

I have backed away. Research and sound statistics indicate my dad doesn't have a snowball's chance in you know where to even get a short term remission much less a cure so the chemo is nothing more than a pipe dream that is making the last six months to year of his life unbearably miserable. My brother and his wife - she is 100% anti science, anti allopathic medicine - have concocted the most outrageous diet, supplement, virtual voodoo scheme you can possibly imagine and have him starving on nothing more than vegetable juice and green tea, while diffusing hundreds of dollars of oils into the air to fure him of stage four lung cancer (the odors of the oils cause him to cough until he retches and gets very dizzy). He is wretchedly miserable, even more than when he was on chemo alone and following doctor's orders, and now is turning into a skeleton, but believes what they tell him - that he will be cured. I am the very bad, very horrible negative energy source because I do not believe in this and am so sad about his misery. But my mom, my dad, my brother and sil, and my sister are all grasping at crazy straws and determined to keep me from intruding reality into their rainbow dreams. Sigh...so I have given up.

 

I do not have power of attorney. My mom does and next in line is my brother which is how they all wanted it so I would have no chance to intervene or ask questions of the medical pros in his life. They do not want me to mention the starvation diet to his doctors and nurses so I am not welcome at any of his appointments. So I have disengaged. I also take no more responsibility either. I had been the primary care giver up until almost Thanksgiving so for three months. Since I am horrified by the decisions that are being made and in good conscience cannot be party to them, I no longer participate. We live two blocks away so I do go visit my parents three to four times per week and since all of these supplements and teas cost them $400 a month which they cannot afford, I do pay their utility bills to help out.

 

It is all very aad, but often when family does not agree, one side or party is completely cut out by the other. Hospice counselors told me this is common. So I guess I should be grateful I am allowed to see my parents.

 

I do not recommend getting into a war over this. It generally only ends in heart ache. You just have to accept it.

 

Oh and my sister's latest crazy plan is she is going to do a go fund me page to get the money to move to a state where cannibis oil is legal because she believes this will cure his cancer - cancer that is destroying his lungs, brain, liver, pancreas, and bones quite rapidly. Essentially, she is so unwilling to embrace reality that she would spirit him away and he would likely die without any of the rest of his family getting to spend any time with him at the end. So if you see some crazy mid thirties red headed woman out there wanting to move her dad to Denver for cannabis oil amd begging money for this, please do not donate.

[Luckymama]

Oh FM :grouphug: my heart breaks for you.

 

My mother was competent at the end of her life (plus my dad had her PoA). I then held my dad's PoA in case anything happened---but then he died suddenly so that was unnecessary.

 

Stacey, you need to find out who holds her Power of Attorney. Does she currently have a lawyer?

Edited December 14, 2015 by Luckymama

[Guest]

We argue. That's what we do.

 

This is where it seems handy to have no siblings.

[Laurie4b]

I have backed away. Research and sound statistics indicate my dad doesn't have a snowball's chance in you know where to even get a short term remission much less a cure so the chemo is nothing more than a pipe dream that is making the last six months to year of his life unbearably miserable. My brother and his wife - she is 100% anti science, anti allopathic medicine - have concocted the most outrageous diet, supplement, virtual voodoo scheme you can possibly imagine and have him starving on nothing more than vegetable juice and green tea, while diffusing hundreds of dollars of oils into the air to fure him of stage four lung cancer (the odors of the oils cause him to cough until he retches and gets very dizzy). He is wretchedly miserable, even more than when he was on chemo alone and following doctor's orders, and now is turning into a skeleton, but believes what they tell him - that he will be cured. I am the very bad, very horrible negative energy source because I do not believe in this and am so sad about his misery. But my mom, my dad, my brother and sil, and my sister are all grasping at crazy straws and determined to keep me from intruding reality into their rainbow dreams. Sigh...so I have given up.

 

I do not have power of attorney. My mom does and next in line is my brother which is how they all wanted it so I would have no chance to intervene or ask questions of the medical pros in his life. They do not want me to mention the starvation diet to his doctors and nurses so I am not welcome at any of his appointments. So I have disengaged. I also take no more responsibility either. I had been the primary care giver up until almost Thanksgiving so for three months. Since I am horrified by the decisions that are being made and in good conscience cannot be party to them, I no longer participate. We live two blocks away so I do go visit my parents three to four times per week and since all of these supplements and teas cost them $400 a month which they cannot afford, I do pay their utility bills to help out.

 

It is all very aad, but often when family does not agree, one side or party is completely cut out by the other. Hospice counselors told me this is common. So I guess I should be grateful I am allowed to see my parents.

 

I do not recommend getting into a war over this. It generally only ends in heart ache. You just have to accept it.

 

Oh and my sister's latest crazy plan is she is going to do a go fund me page to get the money to move to a state where cannibis oil is legal because she believes this will cure his cancer - cancer that is destroying his lungs, brain, liver, pancreas, and bones quite rapidly. Essentially, she is so unwilling to embrace reality that she would spirit him away and he would likely die without any of the rest of his family getting to spend any time with him at the end. So if you see some crazy mid thirties red headed woman out there wanting to move her dad to Denver for cannabis oil amd begging money for this, please do not donate.

 

This is so sad. Sorry!

[Laurie4b]

Have you sat down all together with the doctors?  It sounds like your sister isn't looking at things clearly.  I would make a point of saying to the doctor - if you were in my mom's position, would you get the chemo?  I'd bet dollars to doughnuts they would say "no way."

 

 

I think this is a good idea. You can make the appointment now if your mother is still making medical decisions for herself and you can take her in. Ideally the other sibling could come, too, but I'd make sure it was at least 3 siblings. Then just report to the doctor the effects, ask the doctor in front of your mother if this is curing or slowing down (not that you don't know) and whether continuing could be harmful. If she has other health issues, it could exacerbate those. Ask about pain control. Most patients are worried about pain issues and don't realize that pain can be controlled. Anyway, asking the questions open-endedly without advocating for one thing and getting all the info on the table seems very reasonable. If your sister is not reasonable, then you can't help that, but the doctor can see the dynamics. More importantly, the relevant info will get on the table for your mother if she can still process it once she hears it. 

[SparklyUnicorn]

That's a tough one.  Sis is being pretty selfish (but probably not in the sense she has ill intentions). 

 

I'd try to have a long talk with her to convince her this is not the best course of action.  Just going ahead and making that decision without at least trying to talk to her might get ugly at some point.  So maybe try to make it seem like you are at least considering her feelings on this.  She is outnumbered here though, and I think that should matter too.  I like Bluegoat's idea. 

 

And then if she isn't the one taking care of mom very often, she probably doesn't have the same sense for the situation as you and your siblings do.  So she isn't being very fair here. 

 

But yeah this is really hard.

 

 

[Anne in CA]

Honestly, this is not going to be pretty no matter what. IME the person with the least amount of effort invested is usually the unreasonable one. GRR. You and your other siblings may not be able to reason with her. If she is not seeing how things are going first hand she is going to want to go with what she wants to believe. I am sorry. Really.

[Farrar]

This is close to home for me right now. I don't know what the right thing to do is in terms of siblings and legalities, but I do know that if you're elderly with multiple health problems and a terminal cancer that going on chemo and/or radiation is cruel in most cases. Why don't people see this?

[Ottakee]

Sorry you are going through this.

 

This is one reason that dh and I have appointed medical POA already, just in case.  I want all the pain medication possible but don't want heroics in situations that are almost certain terminal.

 

A close friend of mine is a doctor and has the same thoughts.  While it is her job to help and heal, she did say that sometimes heroics, esp, with the elderly cause more pain and suffering for them.  

[Guest]

Strong recommendation that people read this book:

 

http://www.amazon.com/Being-Mortal-Medicine-What-Matters/dp/0805095152

 

It is probably not a solution for people in the thick of things right now, but it might help if your sister read it. The author, a surgeon, talks abouthow medical practitioners and families need to think about end-of-life and geriatric care.

 

The question that GETS asked is "How can we fix this?" And modern medicine springs into action without much concern for the answer to the question we SHOULD ask: "What are your goals?" It's a readable book and a bit of a bummer--no duh, given the subject matter.

 

Maybe the siblings should all read the book at this time.

[Farrar]

Strong recommendation that people read this book:

 

http://www.amazon.com/Being-Mortal-Medicine-What-Matters/dp/0805095152

 

It should be required reading for doctors.

 

There should be posters on their walls that say, "What would Atul Gawande do?" that they have to pass before going in to counsel gravely ill patients.

Edited December 14, 2015 by Farrar

[goldberry]

I agree the whole thing is very sad.  When my dad's mother was dying, she was 94.  One of the siblings kept trying to force her to eat all the time and got mad when she wouldn't.  Then wanted her on a feeding tube when she went into a coma.  There were three brothers who wanted to just let her go and make sure she wasn't in any pain.  But this one sister bullied them all into compliance.  Did I mention the woman was 94 ??

[Loowit]

Seeing this for my parents the last few years it has been eye opening.  My mom and her siblings didn't get a lot of say because when grandma was ill, my grandfather was making all the decisions.  He was not making great ones, in my opinion, but it was his wife  I am hoping that he has designed a power of attorney and a living will, because I know from that experience that my mom's siblings will have a hard time agreeing.

 

My dad and his brothers and sister recently went through having to decide on what to do for their mom.  There was a huge fight in the waiting room one night.  Grandma had dementia and was septic from an infection.  She was not going to recover, but two siblings wanted to prolong by doing some invasive procedures, and others wanted to let her go without putting her through that.  It came down to power of attorney, but it was so sad that people were staying at the hospital at all hours to make sure another sibling didn't got behind back and have procedures done while they were gone.  Now that grandma has passed, they are getting along better.

 

Right now I am watching my MIL going through end of life decisions with her dad.  Fortunately even at the age of 93 he is capable of making clear choices for himself.  He has chosen at this point to only have palliative care.  He does not want to go back to the hospital ever again.  He is now in hospice care at his own home, and we know that the end is not far away.  But MIL doesn't have to fight siblings because they all know it was grandpa's choice and they respect that.

 

I am really hoping that my parent make clear living wills and give power of attorney to someone who can make the final call.  It will likely be my sister or my brother.  I really would hope we could find a way to agree on what is best, right now we seem on the same page, but it is different when actually faced with making a choice.

 

I feel for anyone going through these hard times.  I hope that you are all able to find some reasonable resolution.

 

 

[Tsuga]

I don't know. My mom made my sister POA and I support them both in this*. I don't know what I'd do if we disagreed--I'd have to defer to her. I am sorry you are facing this.

 

*My sister is a nurse and lives closer to my mom.

Edited December 15, 2015 by Tsuga

[Bluegoat]

This is close to home for me right now. I don't know what the right thing to do is in terms of siblings and legalities, but I do know that if you're elderly with multiple health problems and a terminal cancer that going on chemo and/or radiation is cruel in most cases. Why don't people see this?

 

I really think that it is not seeing.  I've wondered if there is, for many people, no comfortable language to talk about acceptance of dying.  We have a lot of language about fighting and being heroic, that sees illness or end of life as something to be resisted.  I suspect that on this issue, our language and cultural tropes are significantly forming people's thinking.

[Farrar]

I really think that it is not seeing.  I've wondered if there is, for many people, no comfortable language to talk about acceptance of dying.  We have a lot of language about fighting and being heroic, that sees illness or end of life as something to be resisted.  I suspect that on this issue, our language and cultural tropes are significantly forming people's thinking.

 

Totally agreed.

 

Any time I talked about suffering and being willing to let go if it was time, according to step mom it was "giving up" on my dad. "He's a fighter. Don't count him out! Don't give up on him yet!" It was just relentless. But when that's the only approach, then you lose control of your death. And that's exactly what happened.

 

They also didn't plan the funeral at all. According to my mother, "Planning your funeral is a gift you give your children or spouse." So, of course, now the funeral is also out of his control. Which is okay, but it didn't have to be. It could have been in his control if only that was the sort of language we used.

[Annie G]

How we did it: child closest in geography had POA and made the decisions. So, we had my pil, my sis had my dad, my stepsibs had their mom, and my bro had/has his pil. When I was informed that I "wasn't doing it right" for mil, I stepped away and cut ties. Don't like our decisions, move to CO and make your own. But btw, we're not paying for stupidity for fighting a non-existent disease. Whoever has the POA makes the calls. 

 

This totally makes sense- the closest one gets to make the decisions. But it's not working in our case. Dh's sister lives close to his folks so she makes the decisions. Unfortunately, her method is to avoid anything uncomfortable. So MIL has dementia and her doc set her up with a specialist to help figure out if drugs might be warranted. SIL cancelled the appointment because MIL was upset that she was scheduled to see a psychologist. Instead of encouraging her that it's a brain issue and to at least see what the guy says, SIL found a different doc who said the dementia isn't an issue. Um, it really, really is. 

That's just one of many examples.   The closest sibling is the logical choice but it's not always the best choice.  It's not always easy to uproot and move to be near the parent- 1200 miles and them living where there's no equal job prospect for dh just makes it hard. 

 

You have people wanting to treat diseases that aren't even present? Gee, don't old people have enough REAL issues to deal with??? Sheesh. 

[readwithem]

Strong recommendation that people read this book:

 

http://www.amazon.com/Being-Mortal-Medicine-What-Matters/dp/0805095152

 

It is probably not a solution for people in the thick of things right now, but it might help if your sister read it. The author, a surgeon, talks abouthow medical practitioners and families need to think about end-of-life and geriatric care.

 

The question that GETS asked is "How can we fix this?" And modern medicine springs into action without much concern for the answer to the question we SHOULD ask: "What are your goals?" It's a readable book and a bit of a bummer--no duh, given the subject matter.

 

Maybe the siblings should all read the book at this time.

 

I liked your post Patty, but it deserves to be quoted as well.  Such a reasonable approach to the twilight years.  

 

One of the main points I got was he recommended talking to the person going through end of life, and finding out what THEIR priorities are - how do they want to spend their last days and months, and THEN going about instilling ways in their life to make that happen.

[Annie G]

She finally died of the non-existent disease. She was a pain pill addict and had been bulimic for 70 years. 

 

SIL has been anorexic for as long as I've known her- decades. She has a doctor who ignores the situation. That's the doc she chose to take MIL to when MIL's regular doc started talking about dementia issues. 

 

At least we don't have to deal with a pain pill addiction...ugh.  But when we visit the inlaws and I cook a meal, I'm always required to wait until SIL arrives before we eat. The only thing I have seen her eat in many years is a granola bar that she carries with her. (Come to think of it, maybe it's the same granola bar every time. I never see her actually eat it, but she holds it in her hand while we eat)  So I hold a meal until she decides to arrive...and she won't eat what I serve. But I'll take that over a pain pill addiction. 

[Annie G]

Strong recommendation that people read this book:

 

http://www.amazon.com/Being-Mortal-Medicine-What-Matters/dp/0805095152

 

It is probably not a solution for people in the thick of things right now, but it might help if your sister read it. The author, a surgeon, talks abouthow medical practitioners and families need to think about end-of-life and geriatric care.

 

The question that GETS asked is "How can we fix this?" And modern medicine springs into action without much concern for the answer to the question we SHOULD ask: "What are your goals?" It's a readable book and a bit of a bummer--no duh, given the subject matter.

 

Maybe the siblings should all read the book at this time.

 

Thanks so much for the book recommendation! It was on the shelf at our library and I'm looking forward to reading it. 

[StaceyinLA]

Sorry I am just now getting back to this, but thank all of you for the responses.

 

The doctor felt like my mom was capable of making decisions at the time the chemo began. It does seem to be keeping the cancer from progressing, although he can't say for how long. We are moving to every 6 week chemo shots instead of 4 to give her more recoup time in between.

 

At this point, my mom says she wants to live, and I certainly don't want to take that from her; I don't think she can comprehend (with the Alzheimer's) what it means to her quality of life to do the chemo, but since it IS keeping the leukemia under control at present, we are going to continue with what we have been doing. At the point we see her take a turn, we will reevaluate, and the difficult sister now knows she is really the only one who is willing to push this thing too far, so I think we will be able to have the majority deciding.

 

One of my sisters (who shares my feelings on the matter) and I have POA for her medical; it just really doesn't matter much as long as my mom is still able to make decisions, even if we don't believe she can fully comprehend them. My mom lives on my property as well, so I am also the closest to her (although two other siblings, including the difficult one, are on the same street).

 

I love my mother, and these are difficult decisions all the way around. I just cannot stand to see her life just fading away like this.

Edited December 17, 2015 by StaceyinLA

[Catwoman]

I'm so sorry about your mom, Stacey. :(

[StaceyinLA]

I'm so sorry about your mom, Stacey. :(

 

Thank you.  I know many people struggling with these same issues. It's very difficult. My dad's case was so cut and dried as he was very vocal about his wishes, had told my mom exactly what he did and didn't want, and was totally in his right mind up until the moment he passed (congestive heart failure). He knew he didn't want to live like that, and I don't think he really had a fear of death.

 

I think a huge issue with my mother is her fear of dying and/or knowing when it is coming. We are hoping to get her some spiritual help with that just to see if it eases her fears.

[RKWAcademy]

:grouphug: :grouphug:  I'm so sorry.  It's very heartbreaking.  Have you others sat your sister down to tell her your concerns?  Maybe she's in denial and is being a bit selfish in an attempt to hold on to mom longer.  I think a lot of people are selfish in their desire to hold onto loved ones who are dying, thinking only of their loss and not the suffering of the sick.  I think several of you need to talk to her doctor.  Surely a doctor would see if the chemo is needlessly harmful to your mom?  If one of you were to apply for gaurdianship of her with the support of the others and a doctor declaring her incompetent, perhaps a court would grant it with a doctor's input that the chemo is best stopped.  There are lawyers who specialize in these types of cases, so it might be worth an appointment.  My husband recently went through getting gaurdianship of his mother (uncontested).  It was a bit of a court burden but not too bad.

[StephanieZ]

Just an FYI, a power of attorney must be in place before a person looses their mental capacity to make decisions. If there isn't one already in place, then one of her children can seek guardianship through the courts. 

 

However, IME, mental capacity to execute legal documents goes a LONG way into ALZ/dementia DX.

 

(My now-deceased mom had ALZ, she was a lawyer, she had great lawyers who were personal friends as well as estate/family lawyers . . . They all confirmed that she could still update/change her POAs well into her DX. Legal capacity, scarily, seems to progress far into dementia . . . Of course, that COULD be fought afterwards if your sister is adamant, has deep pockets and plenty of time . . . but if you and your other siblings are in agreement, it is unlikely she'd win, and your combined pockets would likely be deeper than the one disagreeing sister . . .)

 

My advice would be to HURRY to an estate/family lawyer, ideally one you already have a relationship with (so they'll trust you) and have them draw up and immediately execute appropriate POAs, etc with you as the POA/proxy/etc. DO IT NOW.

 

There is a good chance you can get a lawyer to draw up and execute these documents. It is much, much cheaper and easier than doing guardianship. If you do guardianship, the process will be longer, uglier, and much more costly and much more of a head ache for you.

 

 

Presumably you've already learned not to let that one sister take Mom to medical appointments. You go from now on, and you guide/advise that the chemo is too hard on her and it needs to stop. 

 

DO NOT DELAY in getting the legal stuff straightened out.

 

If you don't get it straight now, you are in for a world of hurt if your sister fights you. 

 

Get a DNR/POST form completed ASAP, too. You can execute this without a POA, because as long as it isn't in place, your mom can sign it. Her DR can help you do the form. Or search for a local "end of life" organization and/or hospice who can help you do this.

 

HURRY.

[StephanieZ]

ps. Consider hospice. Talk to her Drs about it. They can be SO helpful.