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She had tongue and throat cancer. Operations were done, and then chemo was done, and then a clear MRI. The remission lasted six months, but then it came back.


She was offered all the newest and latest, but one day she was talking to her sister, and she just said she was ready to stop. She told her 12-year-old. She collaborated with her pastor on what to share at her eulogy.


Her parents and sister flew out. I talked to her dad at the service, and thought he'd be devastated, but his feeling was mostly relief. A sense that things would now go on.


I think this is the most heroic way to die. Prolonging it just makes other people suffer. I've already told SO that if this is the way I go, I just wanna go. And if it's dementia, then put me in a MC where perhaps I can form some ethereal connection with people in the same spot who won't remember anything, don't tell me about your dates then, but get on with your own life.


Thoughts?

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I, having been a nurse all my life as a career, so appreciate your reflections. I have seen this, and I have been so relieved for those ready and willing to go this route when death is a certainty.
To tell the truth, many treatments end as more a torture, a torment for patient and family to endure (many patients actually DIE of their treatment), and our doctors are all too seldom ready to level with a patient with the truth that death is imminent and inevitable.
My mother was in her late 90s when she and I together had to battle her doctor to put her in hospice program, and to allow only palliative care for her severe heart condition and pulmonary hypertension. We literally had to FIGHT him, my brother, my mother and I. And she died two weeks later. Most enter hospice too late.
For My brother a year ago I had to fight for hospice also. Literally had to fight for a decent peaceful end for this wonderful man, in his own home, his own room. His sepsis was unresponsive to treatment, and his care a torture for him in hospital. And yes, his death was a relief, and end to enormous suffering. I never thought to have to hear this brave man say "I am afraid" and he was NOT afraid of death, but of the doctors, the treatments.
Our country has a serious problem where it comes to recognizing that death does come to us. It comes earlier or later, more or less suddenly, more or less painfully. And so few have the courage, the grace, the peace to request what your cousin did.
Thank you for your story. You may help many. Please keep telling it. These are individual decisions; your story can provide support for those trying to make just this choice.
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ArtistDaughter Nov 2021
I feel that I caused a quicker death for my mom, though that was not my intention. I moved her on hospice from a large nursing home to a very very small end of life home - a house in our neighborhood, where a couple specialize in end of life care. Hospice was wonderful and the couple and another caregiver gave my mom one on one care for three weeks. They were sweet and wonderful. She passed peacefully in a quiet and lovely place. At the nursing home they got her up daily in order to sit her in front of the noisy hospital-like nursing station, asleep in her wheelchair, so they would notice if she was falling out of her chair. She had nothing to do, not that she could do anything, just sat there tipping to the side in her chair, not really able to comprehend what was going on. I visited her daily and tried to engage her in conversation or an activity. Nothing much came of it, even out in the courtyard to look at the flower garden. She barely responded to anything. She was not on much medication, so that wasn't making her sleepy. She was pretty much just gone with Alzheimer's. I thought maybe internally something was happening and let her stay with the program at the nursing home, where they assured me she belonged. Finally, I could not stand it any longer. Perhaps the move is what did her in, but I really don't feel guilt in moving her there. I think she finally felt comfortable to leave this world for her forever journey.
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Your cousin sounds both brave and wise. I’m not against treatments, but have seen times the treatment was harder on a person than facing the end. There are a good number here on AC forum who are in complete denial about the end coming for their loved one, no judgment, but it’s sad to seeing the futile desperation so many go through. I hope I’ll be brave and wise when my time nears
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Alva's right; we as a society fight death tooth & nail, yet it comes for us anyway. So the key is acceptance instead, imo. My mother is 95 in Jan with advanced dementia, CHF and pulmonary hypertension too..........plus advanced neuropathy to the point where she cries in pain every day. Yet she's been deemed 'not yet ready' for hospice! I'm livid at that decision b/c they can offer her comfort care in her situation that the regular MDs cannot, b/c she can't really tolerate pain pills other than Tramadol which is like putting a band-aid on a gaping wound. So, like my dad, she too will enter hospice 'too late' with days left to live, rendering hospice useless in the end.

My DH & I have had talks about our own futures and what to do if dementia hits us. Cancer we can control the outcome of a bit easier; we can refuse treatment ourselves if the prognosis is bad, etc. If dementia hits, and we're not cognizant enough to make a decision, then what? So we're coming up with a plan that involves pain pills & whiskey that we can administer ourselves, if the need arises, and put an end to things. Why extend our lives if there's no quality left? I see my mother suffer daily and I hear HER ask why God isn't taking her already? It's too much, really, for all involved.

We also don't want to drag our 7 children through the muck & the mire of watching a long, drawn out death process for either of us. We know firsthand the torture such a thing brings to children & how hard it is to recover from the trauma of it. No matter when & how my mother finally passes, it will take me a very VERY long time to get over the years leading up to it, and what she put me through, I can tell you that with 100% certainty.

My SIL has been seriously ill for years now, and what it's doing to her son (the only child) is mind-boggling. Yet she continues to do all the things that CAUSED her extreme illness in the first place; and her son is powerless to stop her. Meaning he's watching her die daily & is quite angry about the whole scene. She's now on a ventilator in the ICU with Covid (after being 'fully vaxxed') and required CPR, so we don't know how this will turn out. Before she was vented, she made sure to tell him she REFUSED to go into AL or a SNF, so he needed to put that thought out of his mind. She's 65 and goes into a diabetic coma weekly (Literally) due to her love of cinnamon buns & McDonalds. #Selfish

The way I look at things, death isn't an 'end' but a new beginning, a rebirth of sorts, to a whole new phase of life in a different realm. While I don't 'want' to die, I'm also not afraid to, so that helps me process death in a healthier way. I'm petrified to lose my DH, don't get me wrong b/c I'd miss him terribly, but I also know I'll see him again when it's my turn to pass. How things turn out with my SIL is anybody's guess, but even if she recovers from the ICU now, her other diseases will kill her shortly.

So I agree with you that your cousin chose a heroic way to die, sparing everyone's suffering along the way. God bless her and I'm sorry for your loss, PeggySue.
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PeggySue2020 Nov 2021
How terrible is it that your nephew was told that by his mom, there will be no AL or SNF. So what is the prospect for this nephew? He's supposed to just do all the SNFing himself because Mom won't look at a rehab? #selfish is right.

Our cousin was only 45. She didn't require her parents or sister come out to be her SNF or AL. Once she decided she did not want any treatment, then this made it more possible for them to come out. It is hard to see the demanding that goes on here, that goes on every day in my own life, because a senior is upset that they're not the focus of attention 24/7 or are in the hospital and aren't getting visits every day.
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I really feel that all the ways to die really come as one of 2 ways.

The way you want to die - suddenly. No prolonged pain, no downhill slide of chronic illness or dementia. One day you are fine and then you drop over dead. Of course, family and friends are devastated by this type of death of others.

The way you don't want to die - slowly and usually painfully. You have pain, disability, failing health and maybe failing memory. You are dependent on others. Nobody really wants this type of death because they suffer. This type of death is actually easier for others to recover from. They are happy your suffering has ended and were ready for your death when it did come.

This is not a "ding" on those caring for others. Thank you for caring and helping others to live with dignity and as much comfort as possible. This is written from the perspective of the most dying persons.
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PeggySue2020 Nov 2021
My parents accepted death 20 years ago. They have purchased their plots. They are now near 90. My dad no longer drives, but my mother does. They are no burden to me, or to my sisters, because there is no gaslighting.

In fact, I gaslight them more by asking why I can't come up while they are entertaining the children of their relatives. LOL, but I understand, and it is fine.

With SO's parents, I am sorry, but it is the complete opposite. A pushy IL got involved, she hates me already, and the feeling is mutual. Like even if I tried to make this work, I probably would not
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I agree - it is certainly easier if the person wants to talk about what they want and if relatives are willing to listen - but I completely agree with you that it should be up to the person who is "dying" to choose the treatment they want and to be supported by family, and this leave the best memories for those left behind.
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rovana Nov 2021
There is an issue when public monies are involved in futile treatment. Because there are limits to these monies. And spending them in this way will mean not being able to spend them more realistically. However, there are then considerations of fairness, to individuals, to groups, etc. It is a very difficult subject.
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About halfway through my TX for Lymphoma---I was so sick and depressed I decided to quit and let go. My kids freaked out, my DH had no opinion and in the end I went through all of it, plus 8 months of FU care. I DID quit that as soon as my oncologist said I could. What's the point of keeping me sick for 2 years to only possibly GAIN 2 years? Made no sense.

My mom always, always, always points to her insulin and says "If I quit taking this I will die". Well, eventually, she's barely taking 1 cc a day and I don't see it's really keeping her alive. I think she wants me to beg her to 'hang in there' but at 92 with double incontinence and losing the ability to walk, I don't know what she's hanging in there FOR.

I just tell her I'll support whatever decision she makes and that's NOT what she wants to hear.

I know she wants to think we'll all fall to pieces when she dies. We won't. I haven't had a 'mom' in my life for over 50 years. I don't want my kids to 'fall apart' when I die. I expect a day or two of mourning then a total return to their lives.
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PeggySue2020 Nov 2021
Thank you for your post, Midkid58.

MIL has non-hodgkins' double hit S4 lymphoma, relapsed and now in her brain. Insulin became required due to the mega-dose steroids she is on. She ODed on it and was hospitalized. Just one of probably six times she has been admitted for a treatment side effect. Let alone to administrate the chemo. Now her onc is lobbying a hospital board to give her Car-T again. They had denied her prior but then scheduled an stem-cell (bone marrow) transplant.

I'm gonna sound like a real a-hole here and I'm sorry but where are the gatekeepers, the skeptical docs who surely have read that Car-T for double-hit relapsed has a 16.7 month median survival rate? Or the ACS study that concluded that the stem-cell treatment for that same population was "medically futile"? The government doesn't want to shell out a few hundred a month for this Purewick device but they'll spend $500K just on one drug let alone the hundreds of thousands just in the hospitalizations around it?

Medicare can't pay for everything, and this "you're KILLING grandma" rhetoric really pisses me off. They give grandma a million dollars, it doesn't work, ok give her another half mil. But that's gotta be it. What is next, a 2 million thing that can possibly save her?
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Alva, this is so insightful, true, and realistic:

"Our country has a serious problem where it comes to recognizing that death does come to us. It comes earlier or later, more or less suddenly, more or less painfully."
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Thank you for sharing this story; cancer is such a 'random' thing and rightfully terrifying, but we all hear that for many people it's the treatments themselves that kill the person. Your cousin was very wise; and your ideas on bonding with others with dementia if that becomes your fate is touching and wise as well. Part of why I participate in this forum is to gain wisdom and insight from all the stories and situations to consider how I will face my own aging and demise. Death IS part of life, and the more we realize it is a transition worthy of respect, kindness, and thoughtful acceptance the more we can all find peace.
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I watched a cousin die of brain tumors. Like yours, she opted to stop treatment after a recurance. She was only 60 but we all accepted that it was her choice, only she knew what toll the treatment took on her.

I have also seen several relative, including my parents, go through a slow decline in physical and mental health. It was difficult and each death was a true relief. I never want someone I love see me go through that. Just make sure I am safe and cared for and dont worry about me. That part of me you knew is gone. I would rather be remembered at my prime.

I have never understood the lengths some people go through to keep a loved one alive what ever the cost, no matter the misery that person is experiencing.

My condolences on your loss.
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I am 100% in agreement with you and your cousin
One of the things I discussed with our PCP about my husband's diagnosis of a lucent lesion in his brain a couple of years after the dementia symptoms showed up.
There is very little that can be done for the malignancy in his brain as chemo drugs are not very effective, and his heart isn't strong enough for him to undergo surgery even if they could. The same with the dementia. PCP said he would refer to a neurologist if I wanted, but why? Any drugs to slow the progress would just prolong his life, not cure him. As I have read fairly extensively about dementia and how it will end, I can't in good conscience do something that will prolong the agony. If what I'm doing is wrong, then God can send me down to hell, and I'm good with.
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My godmother will be dying this Saturday. She has chosen Medical Assistance in Dying (MAiD) which is legal in Canada.

A celebration of life will be held with her present, then she will move into a private space with a doctor after she has said her goodbyes. She is at peace with her decision. She started the planning process several years ago, but this summer she deteriorated to the point she was ready to say goodbye.
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