An end-of-life care question...

[Peach Wookiee]

As some of you may already know, my mother is suffering from vascular dementia. In addition, she also suffers from neuropathy. One of her doctors is suggesting amputation of her feet to rid her of an infection that we truly began battling in October of last year. Also, the circulation in Mom's legs is next to nothing. My dad is, on some level, wondering if we should go through with the surgery. However, both of us know Mom wouldn't want that. She isn't even verbal anymore.
What would you do, if it were your parent?

 

[Squiggy]

She'd be fine with an infection spreading?

It sounds like you have an option to keep her feet or to keep her for a little longer. Did she sign a DNR at some point?

 

[Mr. Laser Beam]

I think I would go with what the doctor says, unless there's a DNR.

 

[Miss Chicken]

If you believe that your mother wouldn't want it, I think you have to respect that.

My mother refused cancer treatment and it was her decision. She also had told us that she was not to be resuscitated. On the final day of her life my brother wanted her resuscitated but my sister had documentation showing Mum didn't want it. My brother and sister argued about it but in the end my mother's wishes prevailed.

I think we all need to make our wishes known before we are no longer capable of voicing it.

 

[cultcross]

I would say that good palliative care is not about if or even when, but how. The end has been decided already, and now it is about reaching it in the most dignified and comfortable way possible given the limitations of medicine, and the limitations of what the law allows doctors to do. It is my personal feeling that measures intended to extend life at such a stage have to be very carefully examined for the actual benefits likely to emerge even from a best case scenario.

The key question to ask, in my opinion, is exactly the one you have posed, 'what would they want?'. This is often difficult to answer, but it seems you know the answer already which shows you know your mother well and were sensible enough to discuss her wishes before it was too late.

I am very sorry to hear you are in this situation; such decisions are among the hardest you ever make.

 

[Peach Wookiee]

^I didn't expect to make decisions like this now. I'm telling my dad we both know what Mom would want, were she in clear control of her faculties. He knows it and yet... I think he's wresting with... guilt, I guess?

 

[TEACAKE'S PLEATHER DOME]

Your poor dad, he just wants to save her. It's a healthy and loving reaction to a horrible place to be

Maybe it would be helpful to him if he talked to another doctor, a specialist etc.. so he can hear the medical facts from a few places. You know, immerse yourselves in the medicine so that what decision you make feels well bolstered. He may feel like there is too much life and death upon his shoulders right now, that's what doctors can be helpful with because they can stand with you.

 

[auntiehill]

Peach Wookie, do you have a hospice organization in your area? They are very helpful with all kinds of senior care issues, not just end-of-life issues, and their services are FREE. Their social workers know all the ins and outs of end of life care. They can help with all the paperwork ; it's very important to get all the paperwork "ducks in a row," as it were. There are legal issues with medical care that must be sorted out, so having a serious one-on-talk with her doctors about the family's concerns is of the utmost importance. If she has no DNR, the hospital is legally obligated to do everything required to save her, unless she is already terminal or not likely to survive the procedure. I'm assuming that your dad has power of attorney?

When my dad died this August, Mom was still taken by surprise, even though we'd been told several months before that he wouldn't make it more than a year or two. Mom only had his internal defibrillator turned off just a couple of months before he died and it was an extremely hard decision for her, even though he had terminal heart-disease, advanced Alzheimer's and terminal cancer.

HospiceAustin sent a social worker to help Mom learn about all the options, helped her find a good nursing home for him, helped her with all the DNR paperwork and even mailed us a packet on funeral costs and how to avoid being over-charged.

 

[Peach Wookiee]

Your poor dad, he just wants to save her. It's a healthy and loving reaction to a horrible place to be

Maybe it would be helpful to him if he talked to another doctor, a specialist etc.. so he can hear the medical facts from a few places. You know, immerse yourselves in the medicine so that what decision you make feels well bolstered. He may feel like there is too much life and death upon his shoulders right now, that's what doctors can be helpful with because they can stand with you.

Dad's been at an odd place with doctors. Because Mom was so adamant about not going to the doctor until 2011 when she was forced, it's been hard to get a diagnosis. Mom had a phobia of going because of her mother who died of cancer when I was two. My first two years were her mother's last.

Peach Wookie, do you have a hospice organization in your area? They are very helpful with all kinds of senior care issues, not just end-of-life issues, and their services are FREE. Their social workers know all the ins and outs of end of life care. They can help with all the paperwork ; it's very important to get all the paperwork "ducks in a row," as it were. There are legal issues with medical care that must be sorted out, so having a serious one-on-talk with her doctors about the family's concerns is of the utmost importance. If she has no DNR, the hospital is legally obligated to do everything required to save her, unless she is already terminal or not likely to survive the procedure. I'm assuming that your dad has power of attorney?

When my dad died this August, Mom was still taken by surprise, even though we'd been told several months before that he wouldn't make it more than a year or two. Mom only had his internal defibrillator turned off just a couple of months before he died and it was an extremely hard decision for her, even though he had terminal heart-disease, advanced Alzheimer's and terminal cancer.

HospiceAustin sent a social worker to help Mom learn about all the options, helped her find a good nursing home for him, helped her with all the DNR paperwork and even mailed us a packet on funeral costs and how to avoid being over-charged.

Dad has power of attorney, something we got somewhat late in the game, as it was pretty clear she was losing her faculties. I'm looking into hospice care on our respective health plans. I think he, Mom and I now have very similar health plans. I think there's a part of him that just doesn't want to face this. But the fact is, according to what I've read, Mom is at Stage 7 on the Alzheimer's scale which means this could end very quickly. And that's why I'm pushing him to look into hospice care. And I'm worried about him too. He's tired. His elder granddaughter is very aware of her grandpa... she says he doesn't smile anymore.
ETA: It's funny (not in a ha ha way, mind you) he's agonizing a little over this. I remember how he talked about his mother and aunt agonizing over putting their father through a heart procedure when he was 96 and in frail health.

 

[Tora Ziyal]

I think it's important to get second and possibly third expert opinions whenever a medical problem and/or treatment is particularly serious or complicated. Listen to their opinions, and then go with what you think your mother would really want. My heart goes out to all of you.

 

[DimesDan]

We had a conversation with my dad back in May regarding his palliative care as his cancer had turned terminal. Six days later he was dead. I don't envy anyone needing that conversation and end of life care.

And in April, I sat with my dying Grandmother until she passed as she didn't have a DNR when in hospital.

 

[C. Cole-Chakotay]

Thankfully, Mom was lucid and able to let the hospital know she wanted DNR. I went to see her and saw the letters on one of her bracelets. She had always told me she didn't want to be on machines. She passed in the hospital on January 2, 2007, with lots of family around her.

 

[Non Sync]

It's always tough. I remember by grandfather had failing circulation in his legs and one had developed gangrene to the point where it was impacting other systems. He improved briefly after they amputated, but died a week or so later.

The longer they are under medical care, the harder it is to remember them before.

 

[Peach Wookiee]

I think it's important to get second and possibly third expert opinions whenever a medical problem and/or treatment is particularly serious or complicated. Listen to their opinions, and then go with what you think your mother would really want. My heart goes out to all of you.

We have a few doctors, Tora Ziyal. It's the infectious diseases specialist suggesting the amputation. The vascular specialist, however, strongly disagrees. And he wasn't willing to attempt an angioplasty procedure with my mom on the grounds that the risks outweighed the benefit. She had to be sedated last year just for a basic scan.

It's always tough. I remember by grandfather had failing circulation in his legs and one had developed gangrene to the point where it was impacting other systems. He improved briefly after they amputated, but died a week or so later.

The longer they are under medical care, the harder it is to remember them before.

Thanks, Non Sync.

I think some research last night has my dad convinced that not going through with it is ultimately the better course. Mom is, according to the Alzheimer's/dementia scale, at the final stage of her disease. She can no longer talk, eat, bathe, walk or dress herself. She lost a lot of her vision due to diabetic retinopathy... this is no life for her. She's a shell...

 

[auntiehill]

^My condolences, Peach Wookie.

 

[MANT!]

Good thoughts and prayers your way during this difficult time, it's good to weigh the costs vs. benefits, and I do think it's best that you remembered what she wanted while she still had full control of herself.

You and yours are in my thoughts..

 

[DimesDan]

I think it's important to get second and possibly third expert opinions whenever a medical problem and/or treatment is particularly serious or complicated. Listen to their opinions, and then go with what you think your mother would really want. My heart goes out to all of you.

We have a few doctors, Tora Ziyal. It's the infectious diseases specialist suggesting the amputation. The vascular specialist, however, strongly disagrees. And he wasn't willing to attempt an angioplasty procedure with my mom on the grounds that the risks outweighed the benefit. She had to be sedated last year just for a basic scan.

It's always tough. I remember by grandfather had failing circulation in his legs and one had developed gangrene to the point where it was impacting other systems. He improved briefly after they amputated, but died a week or so later.

The longer they are under medical care, the harder it is to remember them before.

Thanks, Non Sync.

I think some research last night has my dad convinced that not going through with it is ultimately the better course. Mom is, according to the Alzheimer's/dementia scale, at the final stage of her disease. She can no longer talk, eat, bathe, walk or dress herself. She lost a lot of her vision due to diabetic retinopathy... this is no life for her. She's a shell...

As I said previously, I've been through two similar experiences this year and I don't envy anyone who needs to have that kind of conversation regarding a loved one.

 

[Pondwater]

Sorry to hear this Peachy.

 

[RJDiogenes]

Peach, I'm very sorry for you and your dad and your mom.

We had to go through something similar when my Father was hospitalized for the final time. My Mother was agonizing over whether or not to resuscitate if it came to that, and I had to get her to think about quality of life. The overwhelming impulse, of course, is to save someone, and that's a good thing. But what happens when you do? Will they be all better and go back to being the person that you remember? Or will they just lay there in distress until they need to be resuscitated again and again until they can't anymore? You're right to think about your mom's wishes and you're right to think about what her life actually means right now. Sometimes there is no good outcome and providing comfort is all that you can do. I hope that there will also be some comfort to you and your dad that you both did everything superhumanly possible for your mom and gave her all the love you could.

 

[KimMH]

I'm sorry for the situation in which you find yourself, Peach, hugs to you.