I am so sorry for your loss. I need you to know that your words moved me deeply. Particularly
> People often asked me, if she still recognized me. I often explained that that was a meaningless question. For me, it was far more important, whether I still recognized her. And I did.
One of the hardest parts on me was seeing my father suffer a similar decline, but it was the moments of lucidity or idle chat or little things that showed me he was still there to some extent. Thank you so much for saying what I have long felt in my heart.
The thing is there are no decisions to make. She'll be kept alive as long as possible as law and religious morality requires. All the previous decisions that were made were the most reasonable we could take and there were barely any alternatives along the way.
The hard thing for us is just experiencing it all the way and beyond.
Although I live in a rather liberal country, the choices are still rather limited. The general approach for people with dementia who are accepted in a care home is palliative care: focus on their well-being, not on extending or shortening life. But there is some room for movement, although the final decision is always in the hands of the responsible physician. For example, as family (or personal representatives) you may indicate that you wish that the administration of antibiotics should start as soon as an infection is suspected or delay it as long as possible, instead of it being administered only to relieve discomfort. We decided for palliative care. But still I felt that there were moments, when choice were made to extend her life. Not with respect to medical treatment, but with respect to feeding her. She was given special high-energy drinks and especially in the last half year, a lot of effort was made to feed her. For example, when she was too tired during a meal time, they would try to give it at another moment. Yet, I felt that I did not have the moral right to interfere or to even bring up the issue. I have respect for the manner in which the decisions were made by her physician and the people who took care for her. Although it was hard to go through the experience, in the end I was at peace with my decision to not to interfere and basically let the professionals make the decisions. But maybe my situation was much easier than yours, because my wife long ago had lost the faculty to know that there were any decisions to be made.
I know what you are both going through. I know what myson & wife is going through, seeing me on my bad days during treatment. Knowing that one day I will leave them sooner than we had originally planned.
No matter how bad things are or appear to be I'm a firm believer that there's more after this life and unfortunately we have trek through the good and bad of this one to get to the end. Besides, where did we come from before we were born?
I only live for today, because this is all I have.
Be strong if you can. It's tough and hard. What we are experiencing is apart of life
Peace
I think only one thing really matters: QUALITY of life.
Life is not intrinsically sacred. QUALITY of life is to me.
However this belief of mine is currentlly being viscerally challenged.
From someone who's been on the other side of the story (albeit nowhere close in severity) I can tell you that this is a philosophical debate that you might have with yourself for years and not really reach a solid and stable conclusion. Because it will change depending on your state. Like promising never to drink again during the worst drunkenness or hangover.
On one hand that low quality of life may be the worst thing you ever experienced and there's the distinct risk of going even lower. On the other hand we have no idea what lies on the other side - nothing or something that may be better or worse. And of course there's always the sliver of hope that all goes well and giving up on life too soon is a waste.
I can clearly see with myself how my mood affects my train of thought. And how my mood comes from the state of my body. I think I can stay grounded pretty well even when my mind is in terrible physical condition and goes to the darkest places as a result of that. I can somewhat filter out the influence of mood on my thinking.
> On the other hand we have no idea what lies on the other side - nothing or something that may be better or worse.
We can be pretty sure that there's no other side. All of neuroscience, medicine, biology and what we know about neural networks point to it being that way. The only thing that points to there being some other side is uneducated* people's fantasies and wishful thinking.
* (at least in neuroscience and medicine)
Perhaps it's just like torture, given enough time and suffering things change. Every person has a breaking point. I can't imagine anyone taking torture as "keep doing it because it's still better than dying".
> We can be pretty sure that there's no other side.
Pretty sure. I'm not a spiritual person so this isn't about religion. I was just being thorough so until I get to see nothing on the other side I will at least give the option a passing mention.
And I don't think your mind hangs on to life just because once it's over there's only nothingness. The human mind probably can't even conceive what "nothing" means. You might hang on for more "practical" reasons, like "I spent years building this life, I can't waste it especially if there's a slim chance it gets better".
You can ponder eternal torture and not existing but I'm talking about more down to earth thing. Your single life. You will never have anything besides it. It's not eternal torture, it's not even all torture. It is everything you own and the only thing you own. How could you give up any future piece of it that you didn't have to?
In cases where we have to make hard decisions like this, I find some solace that they have made their decisions ahead of time so that we only complete their requests.
I don't envy you at all in this. The same thing happened to my dad, except the life-saving measures failed, and the doctors said there was nothing else they could do. They gave my mom an 'out', since it was not her choice.
To me this proves there exists a threshold at which no life is better
This is why it's desperately important to be honest with your loved ones about what your wishes are, and to respect and help them with theirs.
Personally, I want to live now, and I suspect from watching other people at the end of life, I'll know when I'm ready to go.
If you do find a way out, the idea that life itself is sacred (regardless of quality of life) can help keep things in perspective for next time.
I think it might be helpful to have distance to your feelings. To understand that unlike your thoughts, your feelings have direct purely biological source. You might find it easier to suffer through them, like you can suffer through limping.
I hope I'll never get depressed so I won't have to find out whether that makes any difference.
Distancing yourself from your feelings may help temporarily, drugs do that.
Occupying your mind with activities that provide a positive reward loop and positive feeling (hobbies, exercise, social activities) likely makes the most difference.
I find this to not be self consistent. you would trade two boring work days for one awesome day right? Two bad weeks for a happy one? There has to be some long tail of uncomfortable days that you would rather enjoy on a shorter time frame, even if the long tail is unknown length. Might a warm send off not be preferable to difficult times ahead?
Sorry for your situation.
In principle you are correct, but in practice you rarely can make such choices because you can't possibly know the future.
You can think you are choosing better life by foregoing the treatment, but it turns out that severe symptoms set in sooner than expected and your life's bad anyways. Or you can think you are choosing longer but worse life but the side effects of the treatment don't seem to affect you much, therapy works way better than expected and you get to experience some joy you couldn't wish for, like holding your newborn grandchild.
What people usually do is balance probabilities and go for longer non-horrible life and hope for the best, and when everything becomes horrible there's usually not much left to make decisions about, which are inherently flawed even then.
I mean I get that people make their own choices. I just am confused that more people aren’t interested in having a death of their choosing. Or even consider it. Like, I have a song that I would like to hear as I’m dying. I want to think and reflect on things and feel safe in spite of the incoming end. I am convinced that with a better cultural mindset we could make death a happy, celebrated, communal event that people look forward to in a bittersweet way. The way most people die to me sound sad for all involved, including the dying.
If you like to make decissions you can make and implement them now.
The thing is decissions are tiresome. You might want to forgo some avoidable decissions and focus more on pleasures of living.
Is this built on anything, or is this your axiom?
Now she's lying in hospice bed with only minor control of her eyes and even less of her mouth. Barely concious. At most minimally responsive. Feeding tube, oxygen, urinary catheterer, central venous catheter. She's kept alive and somewhat sedated.
First reccurence she had after 5 years after initial treatment and diagnosis. Last recurrence happend in two months. It's already a month past last operation.
I'm a bit torn because I'm firm realist and I believe no matter how bad life is, it is the only thing that has a value for you because it's the only thing you have. When your life ends, there's nothing else, no new game, not even admiring your high score. Your life has an ultimate value to you and you have to try to make the best of it even if it consists of sleeping on morphine all the time till your body just falls apart.
On the other hand... she wished to die on an operating table under general anesthesia. Unfortunately she had too good surgeon for that to happen. If she were to spend 5 years like that I think she'd wish for her cancer to grow faster.