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Serious Conversation, I hope the family is starting to get sorted out after all that. I recall your other threads. Hopefully your parents will also make wills after going through this but it may be too fresh for them to sort out in their minds.
Even I had trouble making an estate plan and there was no trauma event involved. It is just sort of hard to do.
That's rather unfortunate and sad, IMO, that one person's wishes about their own life, and when it should end, is overruled by someone else who has a different point of view. The fact that it's a close relative and that the relative is "religious" should have nothing to do with it.
My grandmother was a lot more open-minded than the aunt who took over the funeral. While I don't know if my grandmother would have wanted "the plug pulled," the last year or so of her life was terrible. The embarrassing running around outside nude. Constantly talking about people who had been dead for decades. Multiple rounds of COVID. A stroke in April or so that basically left her paralyzed on one side and unable to eat.
If we know that this level of impairment and suffering was going to be out fate, we might make different decisions.
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Originally Posted by ihatetodust
Serious Conversation, I hope the family is starting to get sorted out after all that. I recall your other threads. Hopefully your parents will also make wills after going through this but it may be too fresh for them to sort out in their minds.
Even I had trouble making an estate plan and there was no trauma event involved. It is just sort of hard to do.
My mom said their goal was to have a will within the next six months or so.
I don't think the family is going to "come back" after this. My dad and (I think) the other siblings are very bitter over the way my uncle handled things with my grandfather. Once the grandfather had the fluid drained off of his heart, he was relatively lucid, and the other brother recorded a conversation with him where grandfather said he wanted to keep getting the fluid drained off, and wanted to live.
I was very close to this uncle - I'd usually see him at least once a week for years. Other than the funerals, I've seen him once since last Thanksgiving. He's going back overseas for the next six months. Personally, I think he wanted to get the parents "dead and gone" to get back to his life overseas. I was close to one of his sisters as well, but that's been years.
I don't see them working this out. It's one of those things where opinions are dug in, it's a really bitter situation, and my uncle looks very callous in pulling the plug, then leaving the country for who knows how long. His daughters have basically written him off, and I wouldn't be surprised if he ends up leaving the country.
This all got started when the aunt over my grandmother's affairs decided to go behind my dad's back and not include him on the discussions about grandfather. The uncle sort of weaseled his way in there, then decided on the "no more hospital" thing.
I doubt he would have lived much longer anyway, but he would have been more comfortable than essentially suffocating from the fluid restricting his breathing.
Last edited by Serious Conversation; 10-27-2023 at 06:48 AM..
I'm really sorry your family had to go through all this SC. I'm sorry for the loss of your grandparents. It is so hard to make these choices even with an advance directive. You think you are making yourself as clear as possible when you fill that paperwork out, but then a medical situation comes up that wasn't addressed in the advance directive, like the draining of the fluid in your grandpa's case.
With my MIL it was similar. She had a DNR, and she said that she didn't want any extreme measures to prolong her life. She had mild to moderate dementia when she filled out the paperwork, but she was fully lucid 90+% of the time. She just had a terrible short-term memory and no ability to manage her finances or track what day/month etc it was. She was prone to getting lost, losing things, wandering, etc. Her hubby was deceased, and she was in her late 80s and was ready in her mind to meet her maker whenever that came to pass. She was doing fine in AL until she came down with pneumonia and was hospitalized. They said antibiotics would help and return to her prior state "probably". So we were stuck... antibiotics are hardly extreme measures, but she wasn't lucid really at the point they took her to the hospital. We opted for the antibiotics, she improved, was discharged to rehab with the intention she would return to her AL facility. She was lucid to a lesser degree, but still knew who we were and that she was getting better. Then she stopped eating, her mental state declined, her physical state declined, no amount of cajoling or soup and milkshakes would get her to eat. She started failing again, the pneumonia came back, she was re-admitted to the hospital 2 weeks after her discharge and this time we decided the opposite way. No more antibiotics. She was on oxygen, but the nurse asked if we wanted to continue the supplemental oxygen and we said no. She never awoke and passed peacefully the next morning. We had no doubt this is what she would've wanted. I don't think we made the wrong decision the first time either. If something simple could cure her we thought it was right, yes it prolonged her time, but at that point she wasn't racked with pain, she was just sick with a respiratory illness, and it was believed by all she could be cured with such a simple thing like antibiotics. I think after her discharge to the rehab she had given up, and to prolong her life after the second trip to hospital would've been cruel.
So, the message I think is we need to be VERY specific about exactly under what circumstances you would no longer want treatment, and what treatments are okay, or not okay. Don't just check yes or no on the boxes on a standard form. State it if you want NO standard medical treatment, not just a vague term like "no extreme measures". What's extreme to you may be routine medical care to the doctors or family members. Nothing could be less extreme than antibiotics, or a supplemental oxygen tube in your nose, but state specifically if you want to be exempt from all medical treatment if you become ill with anything remotely life-threatening and cannot express yourself. I think this will make it easier on family. Include a list of conditions under which you want to be allowed to die naturally, and be specific if you want no feeding tubes, no IV fluids, no intubation, no heart/lung machines, transplants, dialysis, etc. If you want just palliative care, or just hospice after some point in your life, state that.
Another thing people need to do is be honest with themselves about the current abilities of the person with dementia.
For years, everyone dealt with my grandmother's obvious issues by saying "she's just crazy" or "mom's slipping a bit." "Slipping a bit" is becoming occasionally more forgetful, etc., not talking to dead people. No one was honest about what was happening. In particular, the two daughters continued on as normal for years after there was obvious impairment. She wasn't examined for years.
I also agree that things have to be specified basically to a line-item level.
I think the family is not usually objective and when you see someone every day you become used to them even in a bad state.
It is very stressful to make the choices and to see loved ones suffering as well. It isn't as though they can be "cured" at that point.
I wish doctors were more honest as well in saying "this might buy you 2 months". . . I don't think they come right out with it very often - even if you straight out ask them - which most people don't.
I think the family is not usually objective and when you see someone every day you become used to them even in a bad state.
It is very stressful to make the choices and to see loved ones suffering as well. It isn't as though they can be "cured" at that point.
I wish doctors were more honest as well in saying "this might buy you 2 months". . . I don't think they come right out with it very often - even if you straight out ask them - which most people don't.
Well I think most experienced doctors don't want to make this estimate because they have had too many experiences where their "internal guess" was wide of the mark. My wife died of Huntington's disease recently, and I never could get a good estimate of how much time she had left, even from medical professionals with experience on this rare disease. That includes when she in fact had less than 48 hours of life left.
To be intellectually honest, they have to say "I don't know".
I have a relative (85) who has always said not want to be on any artificial things but who is approaching the need for dialysis and he is all for it. . . IDK if people change their minds when it is them or it just seems okay to him as it isn't like 24/7 stuck in a bed type thing. I suppose it counts for something he is "sort of healthy" otherwise as in mobile, etc.
I think the family is not usually objective and when you see someone every day you become used to them even in a bad state.
It is very stressful to make the choices and to see loved ones suffering as well. It isn't as though they can be "cured" at that point.
I wish doctors were more honest as well in saying "this might buy you 2 months". . . I don't think they come right out with it very often - even if you straight out ask them - which most people don't.
When I worked as an RN on an oncology floor back in the 80s doctors were more honest about the outcome. They would tell the family that nothing more could be done and " we are going to make him comfortable ".
The patient would be put on a morphine drip and quietly slip away. No one spoke about the fact that the drug would build up in the patient's system until respiration was depressed to the point where death occurred.
I saw this scenario in hospitals in 3 different states so that was the culture at the time...to prevent prolonged suffering when there was no possibility of a good outcome.
Over time the culture changed and working in an ICU in later years I saw some horrific situations. Many such situations caused by either the doctor or the family overriding the patient's Advanced Directive.
I have a relative (85) who has always said not want to be on any artificial things but who is approaching the need for dialysis and he is all for it. . . IDK if people change their minds when it is them or it just seems okay to him as it isn't like 24/7 stuck in a bed type thing. I suppose it counts for something he is "sort of healthy" otherwise as in mobile, etc.
My mother always said she did not think she would go on dialysis when the time came because she saw her brother suffer terribly before he died at about 75. But when the time did come, at nearly 87, she found "it isn't as bad as I thought it would be" and even drove herself to and from the dialysis center for most of the next four years. Her kidney doctor, who had also been her brother's, explained to her that my uncle's body and overall structural condition varied widely from hers, so he'd had factors that made his experience different.
My sister, who has the family kidney disease, estimates that hers is progressing faster than our mother's did and she will likely start dialysis in her 70s.
I think the family is not usually objective and when you see someone every day you become used to them even in a bad state.
It is very stressful to make the choices and to see loved ones suffering as well. It isn't as though they can be "cured" at that point.
I wish doctors were more honest as well in saying "this might buy you 2 months". . . I don't think they come right out with it very often - even if you straight out ask them - which most people don't.
Some people just can’t make the decisions. My mother was the power of attorney for my grandmother, but when she went into the hospital in an emergency capacity, and they asked my mom if she wanted my grandmother to be put on a ventilator or feeding tube if it was needed, she panicked and kept saying “I don’t know, I don’t know!!!”
Luckily, neither was needed. Afterward we had my grandmom do a Living Will and I took over power of attorney.
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