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A conundrum

6 Feb 2018 11:55

I am 57.  I have a number of debilitating conditions, none of which are diagnosed as "terminal", two which will eventually be terminal (COPD Emphesema and UC with complications), either resulting in severe surgery, Cancers, or death, likely a long slow death.
I am told I could live another 20 years with these conditions, but my quality of life has reduced so far already it hardly feels like life.  I have already had polups removed from my throat and Colon, which tested negative. My UC often manifests as an inflamatory response in my hands, which looks and feels like the arthritis a 90 year old might have.  On these days I am not able to dress myself, make a coffee, or wipe my own ass adequately, as my hands dont work.  My COPD is evidence that I quit smoking a day late and a dollar short.  I have daily meds but not O2 yet.
In other words, the road leads downhill and ends inevitably in death.

Death does not disturb me in and of itself, although no one desires the dying process.  However this long slow road of lessening abilities, lessening life and the ability to live life itself does.

As a young man I never expected to see 30. I was a hard charging young man, a soldier, and hiker, and I have lived a full life.  I have been places and done things a lot of people only dream of.  I have few regrets and many fond memories.  I am not depressed.  I never expected to see thirty, never mind near double that.

NOW my conundrum is as follows;  "Why does it make sense to stick around, fight like the devil for less ability to function, perhaps send my loved ones into debt, to simply preserve this heartbeat?"
A part of my mind says "Why not take up Heroin, or Crack, or Meth?"
A part of my mind says "Why not find a way, NOW, to  make my exit on my terms before things get so bad I cannot do so?"
A part of my mind says "Why should I burden my family and loved ones with final memories of me as a skeletal figure whithering away, a husk of the man they recall?"

THAT part of my mind wont be silenced, it wont STFU.  In fact it keeps me awake nights when my illnesses brings me down, it comes around, warning me, maybe next time will be the time I become so ill those options or others of similar ilk just vanish, and my family is stuck with my whithering husk.

Part of me sees myself as an old inuit, who needs an iceberg to set myself out on, as I have no function any longer, no value.  My family, due to emotions and Love, would never agree with such a notion and would become upset if I even shared such an idea.  A therapist might say I was depressed, but I have been depressed before, and I am not depressed.  I enjoiy the time I do have as best I can, but those times are whithering away, and my ability to enjoiy thongs, to do things is whithering on the vine.

SO I came here, to see if these thoughts are common; OR, as has been rather common in my life, if I am avent gaurde, outside the bubble of "Standard Issue".

SO, is this unusual?  I honestly cannot see any good reason why I should burden my loved ones with my declining health.  It seems to me the very same issue as the removal of a band aid, a slow peel, or the fast rip.  

Re: A conundrum

6 Feb 2018 22:37 in response to Redwooddave

Hi Redwooddave. Welcome to the forum. 

I'm not sure I'm up to a philosophical chat, so I'll suggest that we stay alive because our brains have evolved for us to want to stay alive. I'm not aware of any animal that commits suicide, and I think the reason for this is that such tendencies are counter to survival and are selected out of the gene pool. Of course humans are somewhat different in that we can overcome our evolutionary programming on occasions, but in the end the will to survive is buried deep inside everone's mind. Furthermore, as a social animal, we also want others within our social group to survive.

So, while it might appear sensible to make an early exit, you've got to overcome a billion years of evolution first. 

 

 

Re: A conundrum

7 Feb 2018 00:38 in response to telemando

I am not talking about suicide directly, although that too seems more tolerable that some long torture of my family simply because I dont want to die, when that is inevitable.  Not just overcoming the survival insinct as you mention.

It is really a question of Ethics.
How is my short term survival of more import than the memories they will hae to carry for decdes?  Of a debt they might have to pay down?  Of the emotional and Psychological burden they would have to bear if this plays out as a long slow death?

What right do I have to inflict that onto them by taking HUGE stride (medically) to give myself some short period of extra time?

I find myself feeling this GUILT over what they might have to bear, and I have no right to inflict that upon them, and I know they would never refuse it out of love no matter the cost.

When these questions plauge me, daily, It think odd thoughts, like "Why not just take up heroin as a new habit?"  Junkies claim it is bliss, I never induldged because I understand how destructive it is, but if I am dying anyway, what is there to lose now?  And if I od, the problem resolves itself, no long term suffering for the family.

Then I am rationalizing all the reason that does not malke sense, and round and round and round my mind goes.

I am not asking if this is right or wrong, or if anyone agrees or disagrees.
I AM ASKING, does anyone else go through this, or is it a by product of my life time exploration of Philosophy and Ethics?

Is this a normal thought process people work through, or, as normal for me, am I contemplating thingsothers simply refuse to contemplate?

 

Re: A conundrum

7 Feb 2018 06:30 in response to Redwooddave

Every marriage ends, either in divorce or the death of one of the participants. Every child has to face the death of their parents, or else the parents have to face the death of the child.

But that doesn't stop couples from pairing up, getting married, and having children. When you get married, you both agree to look after each other. 

As that profound philosopher Shakira put it: "That's the deal, my dear".

Re: A conundrum

7 Feb 2018 09:36 in response to Redwooddave

Hi there ... just a little thought ... l wonder if Steven hawking felt /feels like that, and how sad the world would be without his knowledge ... l really like this room of ours with so many different thoughts and opinions ...

As someone with many ongonig health issues, thoughts do cross our minds .. but what works for me is reading a thread from a mum with a two year old starting chemo ... and l taped a t.v programme about a children's chemo ward .. where they all had a smile and there were some with no hair .. others tied to drips still walking around chatting to other kids ... a teenager just wanting to be a teenager not laying with no energy after months of chemo ...but they still carry on ...

I can so empathise with how you feel, I've sat there with a big black hole in front of me, and wishing it would swallow me up ,  when things seemed to overwhelm me .. but those things I said pull me back up and my wonderfull family and buddies on here, that nearly all have "meltdown days" ... I say to my self how dare I feel like this ... and l hope writing it all down an getting it off your chest helps a tad ... and remember pain relief has come a long way ... and there is help out there if we just reach out .. 

I hope you can find some piece and you could help others who feel lost and can see no hope,, and in helping others, you will get that strength your looking for , right back at ya ... hold on for one more day ❤

Re: A conundrum

7 Feb 2018 12:34 in response to telemando

They will face my death regaurdless.  Should I then say that the details of that are irrelevent, and only my intrests are of merit?

That is not ethical.

Re: A conundrum

7 Feb 2018 12:49 in response to Chriss

Thanks for that, at least I know I am not in utterly uncharted teritory in these random thoughts.

I do not think Mr. Hawking is an apt comparison, yes he has had a long difficult life.  Yes he has had to depend upon others and used his mind to create purpose and value in his life.  I am not Mr. Hawking, nor has my life been anything like his.  My children, NOW, recall a man who took them onto a frozen lake as children to see the Hale Bop Comet, who took them croos country camping, who has hiked the AT as a young man.

Vibrant.  The emotional weight of watching me, like I wattched my own mother, whither, become skeletal clinging to life by medical means, and then slowly dying, that is another issue.  I could shorten that entire process simply by NOT taking extreme medical interventions.

I can empathize with such children and teens as you mention, but they have their entire lives ahead of them, whereas I ONLY exist now due to the advancements of medical science.  If I had lived 100 years ago the chances are I would already be gone, gone back  further in history and the nubers keep dropping.

I am sorry you are having these "meltdown" days.  I am not, and this is not any sort of meltdown.  For me it is the raw Ethical Problem which irks me, which might be difficult for others who donot know me to grasp.  In my life I have always championed the underdog, stood up for the vitimized, and always based on Ethics.  This has placed me on the wrong side of firearms and in the face of violent men, it has placed me in dangerous positions where my own life was in danger, because I could not live with myself if I did not speak up, if I did not intervene.

In this situation I am begining to see myself as the issue, my health as the violent domestic abuser, and MY SELF as the only person who can intervene before it takes an axe handle to my family.  As in similar situations where I risked myself, for Ethics, For Others, I am rather stuck on why I should not Risk my self for my family in this.

Re: A conundrum

7 Feb 2018 12:51 in response to Chriss

I do think you raise a valid point about purpose Chriss, with Mr. Hawking and myself.  I see some purpose in sparing my family and little purpose in simple survival for survival's sake alone.

Re: A conundrum

7 Feb 2018 22:01 in response to Redwooddave

Hi Dave,

No advice, just some thoughts.

I have COPD, emphysema, multiple myeloma, peripheral neuropathy, mild cognitive impairment and have two permanent colostomy bags. Although I'm in remission with the myeloma, it will come back. I've virtually no memory, long or short term. I've been very ill and close to death twice in the last 18 months and disabled to varying degrees for 30 years.

Although you say you're not depressed and indeed you may not be, you also may be or at least teetering on the edge of it. Evidence for this is the constant pondering, stuff going round and round in your head. I used to have that but for years I've been on duloxetine. Although prescribed for chronic pain, it's an anti-depressant and doesn't allow me to hold a negative thought in my head for more than a couple of seconds. Just something worth thinking about.

You say you don't want your family to go through the torture of seeing you decline and you want to be remembered as you were or are rather than as a terminally ill man, possibly skeletal and unable to do anything.

Your alternative idea is suicide, while able to accomplish it. I suggest you wouldn't be remembered as anything other than a suicide and your family might hate your memory for it. You'd deprive them of you. A different matter if you became so ill that you couldn't cope any more; they might understand then, just a case of increasing your morphine such that you're at peace and pain-free rather than suicide.

When you're actually terminally ill, with death on the horizon, yyour family will already be in the grieving process. Caring for you may give them succour, rather than horrifying them.

I'm very restricted in what I do or what I'm able to do at the moment. After being in bed, restricted to sleeping in a reclined sitting position and awake every 90 minutes to urinate, I get up and sit in a chair until it's time to go to bed again. There are times when I get out while my Mrs does shopping or maybe a short visit to a relative but basically, I do nothing but go on this computer, visiting the same half dozen sites.

I take my pleasure in the small things - a smile, a conversation, do I feel good at this moment, what my adult kids are doing, the fact that they're continuing to live their lives with their own families and most of all, my beautiful grandchildren, one of whom seems to have an affinity for me and my nonsense songs and stories. Seeing a younger one as he's trying to start walking. Having him pull my beard or grab my glasses. At the sheer intelligence of the other on, so obviously far advanced than her peers. It's the little things, the minutiae of the day. Alll I crave is normality. The not the old normality but today's normality.

So I don't have thoughts like you. I think I may have thought them for a few seconds or minutes before discounting and forgetting them. I can empathise but my motto, if I had such a thing, is 'be sufficient to the moment'. Because I've little memory and cannot ponder the future, I literally have no choice but to live in the moment. That's not a complaint, it's tremendously freeing. I have no worries. I'm not able to worry. I'd recommend it to anybody.

Don't know if this is the sort of answer you wanted but it's the only one I've got.

 

Best Regards

Taff

 

Re: A conundrum

7 Feb 2018 22:24 in response to Taff

Hi Taff ... just wanted to say, what a lovely, heartfelt reply ... I'm truly in ore of your outlook and your love for your grandkids ..( which we share) ..... you are a real star ... l hope your words are read and taken on board ...and help ... bless ya Chrissie x

Re: A conundrum

7 Feb 2018 23:30 in response to Taff

You bring up points I have also thought of, like being thought of as a suicide.
With no understanding that is very hard, less hard if people grasp and support compassionate death.
Also not what I am talking about directly.  I am not talking about suicide.
I am pondering why I, or ANYONE thinks it is ethical to spend enourmous funds, and have your family and loved ones endure enourmous emotional pain watching us slowly die, when it could be otherwise
SIMPLY
by not taking advantage of all those medical props by which we survive.
 

For instance you and I share a number of conditions.  If I simply did not take that surgery, its all over, instead of being prolonged.

While I hear what your saying about depression, I am not depressed, I have always been contemplative like this, always had odd bits of ethical matters go round and round till I come down on one side or another.

This one is new for me, and I was just wondering if it was common, or if it was just me being me.

Re: A conundrum

7 Feb 2018 23:36 in response to Chriss

I am jealous of both of you in that, I have lost all four of my grandchildren.  If they were about I am not sure if that would make it better or worse.  I would love to spend time with them, but also be desirous to spare them extended grief.

A time to every season, right?
If it is my time to die, why should I clog up thier time to grow with my refusal to accept that by hanging on through modern medicine?

Is there not a lesson to be taught here?  A lesson on how to accept your own end with grace, rather than bankrupting, or dragging them down so I can cling to life?

I do think that Taff has a strong mindset, and I am glad he can see the good in life, even as it is.
I think perhaps I fear I cannot.

Re: A conundrum

8 Feb 2018 00:01 in response to Redwooddave

Hi Dave,

Wow, those are big questions! I'll just answer one of them "SO I came here, to see if these thoughts are common; OR, as has been rather common in my life, if I am avent gaurde, outside the bubble of "Standard Issue".

Everything you post strikes a chord with me, so you are definitely not alone in that mindset. I don't have a military background but I was in the Merchant Navy for 14 years in a largely male environment complete with risk taking, volunteering to work in war zones (at 30 you think youre invincible), heavy drinking, deliberately winding up violent guys with short tempers just to break the monotony between ports and a belief that it is better to live hard and die young than conform and fade away. Having children changed that, a little, but it never quite disappeared Happy Not so much a death wish but a disrespect and disregard of death. All combined with a love of a life lived to the full Happy

As a child, I watched my Grandmother die a long and slow death following a series of strokes, each one taking away another part of her ability to enjoy life as she lost her senses, her mobility and her cognition. in one her lucid moments she said to me "if I were a horse, they'd have shot me months ago". That childhood experience certainly influenced my view of the World. 

In the UK we take free medical care so much for granted that we forget that in many countries a cancer diagnosis is a short cut to debt and bankruptcy and an additional major source of stress. 

The surprise to me is that more people with cancer or degenerative diseases don't end their lives prematurely, but anyone who has witnessed the devastation to friends and family caused by a suicide really wouldn't want to inflict that on their own. 

The Inuit tradition of old people selflessly sitting on an iceberg to die may have made sense when starvation threatened their families but doesn't really apply when food is cheap and plentiful. 

Thanks for starting off this interesting thread Wink

Dave

 

Re: A conundrum

8 Feb 2018 01:52 in response to Redwooddave

Aha, I think I understand a bit better now.

Not having treatment is a valid option, nature taking its course and indeed, many people choose to go down that route. I think the decision to do so rests on a prognosis. A reasoned prognosis. Doesn't have to be exact but the medico's best guess. Maybe 20 possible years left is too soon to make the decision. How long then? Don't know and probably depends on today's quality of life, as seen by the decision-maker.

There is no absolute right or wrong. Right and wrong are personal opinions and can change due to circumstance. Morality is just one person's definition of their right and wrong.Ethics is a codified system of what might be considered a society's overall view of right and wrong but doesn't change a person's own morality.

I think a decision to go down the route of no treatment may well save a family's feelings (I think torture's too strong a word). The feelings will still happen but for a shorter time period. So that route can have merit.

Involved as well will be the person's own feelings. We are guardians of our own life but I see nothing wrong with valuing our close 'others' more than ourselves.

In conclusion then, the going early route is ethically/morally/personally valid. It has merit. The choices are, at what point do you make the decision and what will be the decision. Remembering that the decision can be changed at any time. In my opinion, whatever the decision, it will always be the right one.

 

Regards

Taff

Re: A conundrum

8 Feb 2018 02:07 in response to Chriss

Thank you Chrissy,

Your words, as ever, are a kindness.

 

Taff