Thoughts/experiences about extending end-of-life

In My Humble Opinion
21

I have nursed someone to their death, and I came to believe, that while she was in that suspended state before death that you’ve described, that there are things going on that, we the living, possibly just can’t recognize.

As she lay in her bed the Dr kept saying, “It won’t be long now.” For weeks and weeks! All of her loved ones came to the house to say their farewells. And more weeks went by. And they began to look to me for any explanation of why she lingered, as if I had some insight! All I could think to tell them was, “I suppose it’s just not the right time yet. Perhaps she’s awaiting the perfect moment.” I said it so many times, as you can imagine.

As if perhaps our moment of death needs to happen in it’s own time and ought not be rushed. Like our moment of birth, not meant to be scheduled. Maybe the very last moments of one’s life, regardless of outward appearances, are THE most lucid of your existence. Perhaps your life comes into complete context and you experience a heretofore unseen overview of the life you’ve experienced that brings it all together and gives it deeper meaning or significance. And perhaps when they lay dying, they are really doing the emotional work they need to before they can reach that place!

In the heartbreaking days after her passing my own words rung in my ears! It must have finally been her time, her perfect moment even!!!

And the words she so often said to me, “You mustn’t be afraid of death. It’s just another part of living!” (I loved her very much and still miss her terribly!)

22

This is one situation in which everyone seems to feel that his or her personal belief is the right one and that everyone else should share it. The most important thing is to respect the wishes of your loved ones, even if they differ from your own wishes, and to that end, to express them clearly and firmly while you are still capable.

After years of arguing over this issue, my mother and I have come to an understanding – I will not take extraordinary measures to extend her life, and she will do whatever is necessary to extend mine. Neither of us understands the position of the other, and there are arguments to be made on both sides. But it’s not about getting the other person to come around to your way of thinking; it’s about respecting their wishes and doing what they think is best, even if it is painful and requires sacrifice.

It sounds like you believe that SIL’s position goes against your MIL’s wishes, at least those she expressed prior to her current condition. But I still think it would be helpful to have some compassion for your SIL, and not to judge her only by what you would do, or what you believe is right under these circumstances. Do you know what her end-of-life wishes are? Would she want everything to be done under similar circumstances? Would she think it was selfish and cruel to let her mother go? Just because you don’t see any benefit, doesn’t mean it doesn’t exist, at least for SIL and possibly for MIL as well.

I’m sorry that you’re going through this, and can only hope that all of you are able to find some peace.

23

Thanks for the input and kind thoughts all.

Given that MIL doesn’t know her daughters’ names or the day of the week, I seriously question the extent to which one ought to rely upon her most recent utterings.

Personally, I’d probably advocate anaesthetizing half the people in my MIL’s facility. But - of course - that is impossible. More realistically, everyone has to decide where they stand on an extremely finely graduated continuum. SIL does not want morphine b/c her opinion/impression is that every old person she heard of getting morphine died soon after. She fears it will hasten the end. Based on 50+ years of knowing her, my wife knows that any effort to discuss with SIL will be interpreted poorly.

SIL also doesn’t believe MIL is in pain. I suspect MIL may be putting on best face for SIL, or simply incapable of accurately expressing her perceptions. When my wife held a cup for her to drink, MIL said the straw hurt her tongue. When she reached through the bars to pet my dog’s head, she said he hurt her - even though he didn’t move. The facility staff and hospice workers advise morphine. But SIL knows better.

Meanwhile, MIL is on various maintenance meds - which she really oughtn’t be on if she is on hospice. Like I said, SIL is not fully committed to hospice - I don’t think she acknowledges that he mother is actually approaching the final stages of dying. MIL is also on O2.

Realistically, I would stop any efforts to make MIL eat - maybe bring a healthy shake and offer it when she was awake. Or maybe just bring it if asked. I’d stop all maintenance meds other than palliative, and would probably discontinue the O2. But my opinion means nothing.

Having an old relative in this situation is taking a toll on my wife’s emotions. Just a nasty cloud to have hanging around you all the time.

I wish the government or medical community required end of life sessions - maybe every decade of a person’s adult life. Show real-life films of people at various stages of decrepitude, and ask which existence one prefers. Give interviews with caregivers and family members - including ones who find some value in wiping their parents’ asses. Identify potential caregivers in the family and ask how they feel about taking on what roles. A person’s expression of their preference would be afforded less weight as they lose mental competence. I really wonder how many folk would wish to continue existing in the state my MIL is if they knew ahead of time what it was really like. Instead, seemingly reasonable incremental decisions get made along the line, leading to IMO horrible long-lasting situations.

Final thing to give full context - their family was never terribly close. MIL was an alcoholic - never a loving, supportive mother/grandmother. SIL is a control freak who still feels she ought to tell my wife what to do as the older sister, even tho both are in the 50s. My impression is that SIL is attempting to re-write history and create a caring dynamic that never existed before. My wife - a lawyer - was the power of attorney and executor until some time a decade or 2 ago when it was changed. We have no idea of the exact dynamics of why it was done or at whose urging. MIL has always been very malleable, and MIL and SIL have always been closer than my wife was to her mother. Fine - SIL has the authority. She can make what decisions she wishes. But if she knows she is making decisions my wife disagrees with, she ought not continually ask my wife’s “blessing” of those decisions.

24

I think you have a point - I’d do it in high school health - high school kids are usually at a good place in their lives - fairly health parents getting older, older grandparents. And you have a trapped audience.

I also wish that doctors would get more training in dealing with end of life - and I understand that they do now than they used to, and that hospitals would start shuffling you straight into social workers/therapists schedules - people who would gentle take your hand and help you work through it - whether its the patient or the family or both.

Understanding prognosis and the likely path of the illness (or old age) is important as well.
(IME, nurses give you the best information and advice.

25

Yeah - what has been wearing is having drs tell us this is expected to be a short-term, terminal situation for the past 5 years. I know it is impossible to give an accurate prognosis in individual cases, but it gets old.

Re: nurses - the latest difficult point involved the hospice nurses. They KNOW my wife and SIL differ. They expressed their frustration w/ SIL to my wife, re: SIL’s wishing meds continued and refusing morphine. My wife told them she agreed with them, but that SIL had PoA. They agreed NOT to communicate that discussion to SIL. Well - you know what happened. BY THE NEXT FRIGGIN DAY SIL was on the phone demanding why my wife wanted to kill MIL.

26

Fair enough. If you are confident about what your MIL most likely wants right now, then you should consider advocating more strenuously for it. It may help the conversation to clearly state that you are not advocating for what you want, but instead for what you believe your MIL wants, and to ask your SIL whose interests she has in mind as she makes her decisions. In the end it’s up to you and your wife to decide which is the less unpleasant course of action - a showdown with your SIL, or another month (possibly more) of watching your MIL wither. That decision should consider longer-term consequences as well, i.e. how it will affect your future relationship with your SIL, and how you will feel years from now about what you did or did not do for your MIL

In her defense, there’s probably a significant correlation between morphine use and death, since terminally ill elderly patients who receive it are probably about to die anyway. But, famously, correlation does not equal causation. Medical personnel should probably be enlisted to explain the pros and cons of morphine for your MIL.

27

You hit the nail on the head. At this point, expected unpleasantness from SIL exceeds any satisfaction wife feels possible from trying to do what she thinks is right. Add in that MIL was always pretty selfish - never conducted herself in a manner to encourage my wife to go to unusual lengths right now. If she wanted my wife to advocate for her, she shouldn’t have changed her PoA. She made her fucking bed, and now she is welcome to lie in it. Given the family dynamics - AND societal pressure - we will not put ourselves in a position where we’ll be criticized rightly or wrongly for wanting to hasten death.

I really don’t know how uncomfortable MIL is, and don’t really care. She’s just lying in a bed, has people caring for all of her needs. SIL can do pretty much whatever she wants. Only thing that could get us to step in would be if she tries to rescind the DNRs - which I wouldn’t put past her.

As for future relations w/ SIL - I expect those to be NONE. One of the most stressful aspects of this process has been the need for my wife to regularly coordinate and communicate w/ SIL - a selfish, inefficient, fickle individual. SIL wanted PoA, and she got it. So now my wife wishes she’d just make whatever decisions she wants to, instead of debating them endlessly with my wife, and rejecting anything my wife says short of complete agreement. SIL will predictably reject out of hand anything my wife suggests. So instead, wife is in the BS situation where, in order to effect change, she has to subtly suggest it in a way that will allow SIL to present it days or weeks later as HER idea. Fucking exhausting!

Down the line, I have every expectation that SIL will distribute the estate unfairly as executor. Like I said, good thing we don’t need the $. Should that occur, we’ll have to decide how significant the misfeasance will be before we’ll take what actions.

Fun times! Can’t wait for them to end! :wink: (Seriously - my wife and I find it impressive how much this drains us. I think this personal aspect of the cost of prolonging life is quite significant - and will only increase as we boomers enter our dotage. I’m SO happy both of my parents died in their sleep, and were fully sentient the day before.)

28

I visited my aunt in hospice. Everyone knew she was within a couple of days of dying, but every time she came awake, one of my cousins was there telling her she was getting better and would be back home in just another couple of weeks. For some reason this really angered me, though I didn’t say anything about it at the time. I just left in disgust.

29

We just went through this with my MIL. Hospice just means they’re providing end of life care. People do enter hospice and get better and leave it.

The hospice nurses were great. We were able to call with questions and they stopped by weekly to check on Mum. She was getting her normal medication (until she wasn’t able to swallow, then we used the liquid.)

People have asked that loved ones be put on feeding tubes and such, but toward the end, the body is not physically able to digest food. The brain is so busy keeping the heart and lungs going it doesn’t matter if the belly is full.

I think your wife and the professional caregivers need to have a serious sit-down with SIL. She may be prolonging her mother’s distress. I’m hoping she just doesn’t understand the situation or is not ready to deal with the impending loss. If so, someone more objective should be put in charge.

30

I think that’s more to do with the people being very near death before being given morphine rather than morphine hastening death.

If someone is in agony and the only means to deal with it is to give such a high dose of morphine it starts to depress respiration it might hasten death… but the aim is to end pain, not cause death, and that would be a very dire, very near death circumstances as well.

From what you say that sounds like it to me, too - of course, I’m only hearing your side but it’s far from an unheard-of reaction.

While not eating or drinking near the end usually doesn’t cause distress, difficulty breathing, “oxygen starvation”, and so forth might cause distress. Oxygen may be a comfort treatment under such circumstances. It’s one of those things that should be talked about with a medical professional on-scene.

31

Particularly if the doctors have spent five years say “the end is nigh!” I have a pragmatic outlook on death, and I might be rolling my eyes and saying “really? this time fur sure?”

32

The truth is that no one has an expiration date on them. Some people are told they have six months and die in two days. Some people are told they have six months and live five years. Truth is, any such prediction given by a doctor is a guess. It may be an educated guess, but it’s not a certain thing.

Yes, I understand hearing “the end is nigh” for years leads to skepticism.

33

That kind of reasoning is common, but it’s like my grandma complaining that going to a doctor makes you sick. The idea that you were sick already and the doctor just dares to point out how is deemed Unacceptable.
If and when my mother takes any length of time to die, I expect there to be trouble from one of my brothers. His wife’s family are of the “never leave the sick person alone” type; Mom will put on a show any time there is a person around. They always go for “heroic measures”; we don’t. Makes it 2 votes to 1, but unless one of the other two has PoA it’s going to be a horror story.

34

It’s exactly like people who refuse insulin, because everyone they know who went on insulin had a foot amputated afterwards. Ergo, insulin makes you need amputations.

I can see their logic, but that’s just not how it works…

35

Wanted to add one more thing. One service hospice provides is counseling for family members. When wife and SIL met w/ the providers when they were initiating hospice, they mentioned counseling. SIL immediately said, “No, we don’t need that!” To which my wife said, “Wait a minute - I’ll take some!”

She has gotten considerable benefit from meeting with and speaking over the phone with someone who is familiar with such situations and the family dynamics that surround them. I think SIL could benefit from it as well, but she isn’t interested. Really nice to be able to openly express what she truly feels, and have someone affirm that such thoughts are common and valid. Recommended a number of books which reaffirm our thoughts about how our society and the medical and care communities deal with end of life. We perceive it is very socially unacceptable to outwardly state that you do not wish to prolong life; it is nice to read that at least some folk share your beliefs.

One thing that was obvious to the counselor was that while SIL and wife processed the MIL situation very differently, there also were longstanding issues between the 2 that contributed to the dynamic. And the death of a mother is so stressful in itself that that is not the time to expect any meaningful resolution of such issues.

36

When my aunt refused not-yet-insulin pills because “I don’t trust Pharma”, the doctors directly asked her to fill up her End of Life directive: no pills, no medication, no drips except for hydration (no blood, no meds, no parentheral food), no surgery at all (including no amputations), nothing that she doesn’t control directly. The doctor asked if she’d allow an autopsy, she refused because she doesn’t want to help “the medical establishment”. Ok then, at least she’s internally coherent.

37

Here is a looong article, but a good read, IMO, about parent health care. Summed in one bite: “We’re living longer, but we’re also dying longer, and that has its own set of complications.”

38

I’m sorry you all are going through this. My dad died a month ago. Being with him in his final moments the hardest thing I’ve ever done, and wouldn’t change it for anything. In sorry, especially, that SIL is being so unreasonable about the quality of life her mother is allowed during her final days. If pain management is available, it should be given. I hope that someone can get SIL to face what is really going on and what the most compassionate steps would be.

39

In the thread on Drs’ opinions I posted that yesterday the hospice nurse said 1-2 weeks tops.

I think my wife has been getting more emotional as the end nears. And I have not helped as much as I could, because I remain the same compassionless jerk I’ve always been. Even tho my wife has said for years that she wishes her mom would simply not awake the next morning, she is now stepping up her visits. And even tho her SIL has been a complete PITA, wife is thinking how she will be able to support her making funeral arrangements, and whatever else is needed.

So I need to decide what I can do to support my wife. No need - at least at this particular time - for me to express my strong opinions as to what various people or institutions have done well or not…

Personally, I’m feeling more and more strongly that starvation is the way to go. Especially if I am ever in a situation where I am incapable of asking for food. No feeding tubes, and unless I’m asking for it, I don’t even want someone spooning food into my mouth or holding a protein shake up to my lips. Seems like a test I can live/die with. If I’m so far gone physically or mentally that I can’t even ask for food, if I don’t even KNOW that I’m hungry, just relieve any pain, hydrate me, and let me starve.

40

My grandmother died just over a year ago, and every time I read a story like this, I am SO glad we were all on the same page about how to deal with her rapid decline and last days. Her mind had been going for years, and although she tried to put a brave face on things whenever anyone went to see her, you could tell that most of the time, she was just…existing. The family had a party for her 98th birthday, and just about everyone was there. The next morning, she told one of the nurses “I’m FINISHED!” By nightfall, she was in critical care hospice, and within 24 hours, she wasn’t really conscious anymore (and never regained consciousness). I don’t know what documents Grandmom had as far as medical directives, but she was given no food once she could no longer swallow, and just morphine/oxygen to deal with distress.

I got there just about as soon as I could (1300 miles away), and we all spent the next several days just being with her, taking turns at her bedside, talking to each other and reminiscing about the good times we had had with her and the adventures my grandparents had together, and telling her that it was OK for her to let go, that she would be with my grandfather again and that he had missed her terribly in the 9 years since he died.

By Wednesday night (I arrived Sunday afternoon), I realized that whatever was there in her bed, it wasn’t her anymore, and I started the journey home on Thursday, getting home late that night. She died Friday morning. We basically had Grandmom’s shiva while she was still alive.

Except for a few awkward moments when my sister told an arguably off-color story to one of the hospice nurses, and when one aunt thought that laughter was inappropriate, we all got along, and we were all on the same page about the best way to make Grandmom’s passing as humane as possible. I wouldn’t have had it any other way.

Which reminds me, I vowed when I got home to do a will, power of attorney for healthcare, etc. and I haven’t done it yet…

Also, hospice nurses are saints.