If You Could Choose …
An email exchange with Dr. Schwab a few weeks ago gave me some wonderful material for thought - and discussion. I’m quite grateful to him for allowing me to use different parts of our emails like this, because some of these ideas just beg to be explored more deeply.
In discussing the rather delicate question of whether suicide would be a personal option in order to avoid the anguish of Alzheimer’s, Dr. Schwab questioned:
“[...] would I rather drop dead in an instant, or have a terminal illness that would allow me time to make plans, make peace, say goodbyes. I’ve seen family members go in each way. What I know is that when an uncle dropped dead at age 65 with no warning, his family was devastated. When a brother in law died slowly, it was miserable, but somehow when the end came it was easier to deal with afterwards.”
Along with Dr. Schwab, I have to question which way would be better. My father died very suddenly of a massive stroke … we were not prepared to lose him. 19 years later, I still mourn him … I still miss him palpably. His death left so many things unsaid, so many loose ends. In contrast, my mother lingered with Alzheimer’s for a decade. I finished mourning her years before her body died. When she went, the anguish ended, rather than began … she was no longer trapped in the empty shell that had once been the woman who raised me, nurtured me, wiped my tears.
I don’t ever want to see someone die from Alzheimer’s again - it was agonizing, long, exhausting … emotionally draining. But … we were able to mourn her fully, to tie up our loose ends. My dad … he was there one day, laughing at our jokes, rubbing his big beautiful rough hands together in glee as he anticipated the fun he was going to have with us and his grandkids since he’d only moved to the area a week before … and then, suddenly, he was gone. The wonderful times we were all finally going to share — went with him.
And so, which is best? Dr. Schwab says he doesn’t know … and I certainly don’t know …
If you could choose the way you were going to die, would you have it be quick? Would you rather know ahead of time, and have the time to make your plans, tie up your loose ends? Get everything said?
What about the death of a loved one … do you think a sudden, unexpected death is better, easier? Or is it better to know that you’re losing someone, to have time to say your goodbyes?
Let the blogosphere know what you think - and why. And don’t forget to vote in the poll in the left sidebar … thank you!
August 19th, 2006 at 10:49 pm
Well, I think it would be more convenient to know ahead of time. But I guess that all depends on your current situation in life. I’m the kind of person that likes to plan everything and have control over as much of my life as humanly possible. If I could even know ahead of time when I was going to die, that would be great. But I’m sure many people disagree with this.
I would also want to know when a loved one was going to die as well. So I could plan my life around that. If I had known when my father was going to die, I would have spent more time with him in the weeks beforehand.
As for suicide being a personal option in order to avoid the long, drawn out process with Alzheimer’s, I am quite unsure about that. I personally don’t think suicide is “okay” under any circumstances, but I’m sure if I were in that position, I would think differently though.
August 19th, 2006 at 11:30 pm
Miss moof do you ever stop asking the hard ones? i mean the ones that there are no real good answers to?… cause no matter how you look at it it sucks.. in one case you almost feel guilty becasue you feel relieved that they are dead and no longer in pain and suffering.. and in the other it shocks the system….. do it like the country song that tim mcgraw sings.. live everyday like it were your last.. love to the fullest now… don’t worry about tommorow… it will come in it’s own time…((hugs))
August 19th, 2006 at 11:35 pm
Moof…First, I love these thinking posts you have been doing. They are making me really evaluate things.
Personally, I would much rather die very suddenly. I’m not afraid of dying, Im afraid of the process involved to becoming dead. But, just like you (we have had so many of the same experiences) My dad died very suddenly 16 years ago with no warning and we were devastated. Mother dies of Alz.(after more than a decade) and again I was devastated. I honestly don’t think it was any easier when she died than when dad died. EXCEPT, there was relief that she no longer had to live that way. We talked in another of your posts about ALZ. and I gave my opinion about it being harder on caregivers than on the patients themselves. But, we wern’t really talking about the end-stage of Alz.. You should do a post on that one day.
Even though “we” were devastated, I was happy that my dad died the way he did. He was not a man to be down. I really don’t think he would have adjusted to being dependant on other’s for care. He would have been mortified. He was a former DI in the military. No way would he have wanted his kids taking care of him.
Another good one Moof!!
August 20th, 2006 at 3:48 am
Having been a hospital regular, I don’t want to die there. I’d rather die in my sleep peacefully. It’s better for the the loved ones I’ll be leaving behind and for myself.
I would wish the same for my loved ones. We don’t want to see anyone suffer for years.
August 20th, 2006 at 7:23 am
Wow! 50-50! I said sudden and unexpected. I wouldn’t want to drag the fleas through an agonizingly long illness, then lose me after they had stopped missing me.
As an aside, a family brought with them an 8-year old girl friend of the family as I took stitches out of my patient’s foot. As they were leaving, the mother of my patient took me aside and told me the little girl’s mother had died suddenly last week, after diving into a swimming pool.
So I would rather not know I’m gonna die, but not yet, thank you. The Terminator is 8 years old. Terminator 2 is 5.
best,
Flea
August 20th, 2006 at 11:30 am
The basic point here, dear Moof, is that we have no choice in this matter. It will happen the way it happens. I do know that when my adored grandmother died, when I was 14, it hit me terribly hard because she was in her late 60s, in good health, and was struck by a car when crossing the street. Very traumatizing because I assumed she would be around for years.
I think I would opt for the unexpected. I would for my dear wife, too, as traumatizing as that would be. But the thought of her lying in pain would be devastating.
On a more cheerful note. The sun is shining, it is a lovely day, and life is for the living.
cheers, Ian
August 20th, 2006 at 1:18 pm
I think the way we want to go depends on who we want it to be easier on: ourselves, or those we leave behind. I would prefer to go quickly myself, but it would probably be easier for my family to accept if they saw it coming.
August 20th, 2006 at 4:57 pm
I think if I was given a choice, I would want it to be sudden and unexpected. Honestly, I am a little afraid of the suffering that I would feel physically, and more importantly, the emotional suffering it would cause my family.
August 20th, 2006 at 6:01 pm
It’s an easy decision for me. The most dreadful death for friends and relatives, as well as for the dying person, is a lingering death. Most of the time it is painful physically and emotionally. If death is due to cerebral damage, whether from Alzheimer, a stroke or brain trauma, the victim may be unaware of his/her deterioration providing greatger and greater pain on the family.
A sudden death is more intense, but in my experience easier to sustain over the years. About the time my son died in an accident, a friend about his age developed leukemia which dragged out his death for almost two years. I pitied the family more than myself.
August 20th, 2006 at 8:46 pm
My mom had multiple myeloma. While she was having a stem cell transplant, my dad was diagnosed with acute leukemia (on a thursday) and died that following Monday. My mom hung on for two years after the transplant, then died. I hated not having the time with my dad to “say goodbye”. On the other hand, I hated having the time w/ my mom to watch her suffer. But I did get to truly say goodbye to her. I would give so much to have had that with my dad.
It is a double edged sword, but I voted for knowing ahead of time.
August 20th, 2006 at 8:48 pm
I do not want my family to suffer needlessly, financially, emotionally, or phsyically. I also would like them to have good memories of the final days of my life.
Take me quickly.
later…
August 21st, 2006 at 4:17 am
Great touching writings…
August 21st, 2006 at 8:27 am
I lost my father in May to a sudden heart attack. I had no time to say goodbye. All I got to see was his corpse, ashen. The shock of it is something that I experience each day. My mother, who attempted to resuscitate him while the paramedics were on the way, relives the ugly moment of his death every day, multiple times.
We had no time to prepare emotionally, financially, etc.
My family has also had to deal with watching a beloved grandfather die slowly of Alzheimer’s Disease. While it was difficult to see him wasting away, we all had time to prepare for his death in all ways.
Let’s face it–there is no better way to die. One way or the other someone will experience pain and suffering.
August 21st, 2006 at 8:59 pm
This is a great post, as usual. We had this same debate at the Alz talk that I did last week. Similar discussion to what has already been talked about here. I’ll share more later this week on my blog (didn’t you mention I knew about the ‘leave em hanging’ trick?).
August 22nd, 2006 at 12:59 pm
I cannot see helping an Alzheimer’s patient to die. It is too problematic. Alzheimer’s patients by definition are not rational, so how are you supposed to know when they are really suffering? Are you going to kill them as soon as the diagnosis is made, even when they still recognize family members and have clear memories? Or, are you going to wait until they cannot speak, by which time they can no longer make the decision? If the patient is too far gone to decide, then the family is deciding for them, and that makes it euthanasia, not assisted suicide.
I try not to be absolutist and pedantic about such matters, because I understand that it is painful for people on all sides, but usually when you look hard at the specifics of assisted suicide you find that the realities are much more complicated than they appear.
If the doctor and family are on the same page, it is possible to “do a patient in,” without crossing any ethical lines. How? By agreeing that if the patient gets very sick, the disease will be allowed to run its course, and the only treatment will be for pain relief. For example, people with Alzheimers get pneumonia all the time, and instead of treating them they could just be let go. William Osler once called pneumonia “the old man’s friend,” and this is what he meant.
It takes all kinds, but I am astonished at the range of opinions on this issue. Some people want to be put down at the first hint of forgetfulness and others want everything done until the bitter, bitter end. Just last week I saw a patient in the hospital who was in a peristent vegetative state and still getting radiation treatments for cancer.
There has got to be a sensible middle ground. Do everything you can for people who can be helped, but switch to a comfort care only approach to those who cannot. This eliminates most of the problem.
August 22nd, 2006 at 10:03 pm
. . .tough one, but I’m against suicide regardless of the circumstances.
August 23rd, 2006 at 5:44 am
Moof, did grand Rounds link to your right post? I was reading here and it looked like the last couple commenters were answering your questions and post about suicide and alz. Then I realized that your entry at grand rounds was linked to this post instaed of that one.
August 23rd, 2006 at 8:08 am
Cathy, yes, this is the post I submitted. I think that Dr. Charles got confused … since the Alzheimer’s and Suicide was last week’s submission. I know that the subject is similar … perhaps he thought it was more of the same …
August 23rd, 2006 at 7:43 pm
ok, now I can see what happened. Thanks for your explanation.
August 24th, 2006 at 11:36 am
Very thoughtful comments. I’ve seen it both ways: miserable as it is either way, my observation (not a long series) is that having some warning makes it easier for those left behind to accept and adjust. I can’t generalize. I feel like I’d prefer to know what’s coming and allow people to be prepared. And maybe even — apropos a previous thread — have the opportunity to pick the time.
It is, of course highly theoretical. We can’t choose in advance. But if the fates give us warning, it does allow the possibility of at least a small range of choices.
August 24th, 2006 at 12:22 pm
Just linked on in here. Very interesting discussion. In all seriousness, and meaning no disrespect, I ask;
What does it matter ‘how’ a person dies?
I reserve the right to make the ‘big’ decision for myself, should I ever feel that need. I wonder why our society fusses so much on the cause of a death. People still shake their heads when it’s ‘cancer’, the big C! Anyone who dies of cancer of course either brought it on themselves by not living right or were ‘cursed’ with it at a young age before they could make the ‘wrong moves’.
Sorry. Not trying to be obtuse or hijack the thread. Death and dieing in the west is so jacked up!!
Have a good day!
August 24th, 2006 at 12:51 pm
i know this is a hard one to ponder. i would like to think that the slower the death the easier the goodbyes. an instant death is almost too much. reading a book called “year of magical thinking” and the author’s husband died suddenly at dinner one night. her book is about that year after the horrible surprise death.
August 24th, 2006 at 5:23 pm
My Mother died slowly of cancer. It is terrible to look at your Mother’s corpse and be glad that she is dead.
My husband’s Aunt (who brought him up) died slowly of Alzheimers. I mourned all the losses — as we became strangers to her, as she lost herself — and to my surprise I mourned yet again when she died.
An Uncle died suddenly (at 89), after cooking lunch for his son — when my cousin checked on him that evening, he was sitting in his chair . . . way to go!
Tell me I have Alzheimers, and I’ll set a date to kill myself.
August 25th, 2006 at 7:33 am
Moof, I linked this on my site
August 25th, 2006 at 2:53 pm
I would like just enough time to make arrangements for myself while not traumatizing my family with a long lingering illness. Ideally I would be warned in time to withdraw my life insurance, make arrangements and pay for them, distribute the remains to my kids and then make my departure
August 27th, 2006 at 12:37 am
This is my first time reading your blog…I just HAVE to add my two cents.
For those who think “the long goodbye” is best–I wonder whose interests they are looking out for? Yes, dropping dead is a shock to loved ones. But being diagnosed with Alzheimers, cancer, or Lou Gehrig’s is just as big a shock…and then you get to watch the death occur day by day. You see the fear in their eyes, you feel the dread each morning you wake up and remember what is happening. You see their pain, you see their abilities and their personality being taken away. The morphine shots, the bedpans, the hands so bruised, veins collapsed and unable to receive another IV. Do you REALLY think it is that important that you have a chance to say goodbye? If so, I don’t think you’ve had to experience the sights, sounds, smells of living-in-death. I wish my sister had instantaneously been taken, rather than watch her being eaten alive by cancer, dying at age 19. Sorry to be so “dire” but when people complain that they didn’t have a chance to say goodbye, I don’t think they understand what the alternative could have been. You know who in your life really loves you–and those who have passed on know that you love them, a few parting words don’t matter.