What do you do when the person you’ve loved for a lifetime just isn’t there any more? But they’re still alive …

Posted: April 1, 2012 in Political musings, Religion
Tags: , , , , , , , ,

I was deeply saddened to read news reports of a mercy killing/suicide of a man and his wife: a man who had recently written in The New York Times about his love for his Alzheimer’s-stricken wife, who has killed her and himself in what their family called an act of “deep devotion”.

Having nursed my mother through Alzheimers, with the endlessly patient and loving help of my family and professional carers, I feel I now have some insight into this awful illness. In the early days, the progressive loss of memory and resulting confusion is manageable, can even have its funny moments, and the sufferer is still able to enjoy some quality of life, to take pleasure in company and family, exercise and eating.

There is never a time when you stop loving your parent and grand-parent. But there is a time when the greatest love a family can give is to let them go peacefully. Betty Yolland, 1916-2008

In its late stages, though, there is truly nothing – nothing – about life with this illness which makes the prolonging of existence worthwhile. In my mother’s case, mercifully still corpus mentis into her nineties, (pretty much), this final complete decline into dementia lasted at least eighteen months. Although she had a number of near misses with falls and fits, in all but one case (when she was revived by a well-meaning doctor with no other instructions, and therefore subjected to another six months of misery) she remained stubbornly alive, her body fighting on long after her mind had left.

I have since spoken to many people who have experienced the same thing. Universally, they report having no idea how awful it could be until they experienced it, and again, almost to a person, they argue now in favour of being able to deliberately end someone’s life when it becomes a meaningless, painful and incredibly unhappy experience.

Many, but not all, medical practitioners and nurses will agree.

And the great unspoken truth, of course, is that pain medication in the form of morphine is often given to people who have no hope of survival and recovery, in increasing doses, with a “by-product” of the process being death. But whether for cancer, or Alzheimers, or any other degenerative disease, our medical professionals, and the families of those concerned, should not have to rely on such subterfuge in a civilised society.

In my opinion, this endless prolongation of life is hypocrisy, and it is wicked. Those who argue for the primacy of palliative aged care and a refusal to contemplate the deliberate ending of a life clearly have not spent long in the company of someone with advanced Alzheimers.

Until, and if, we manage to make caring for the brain as effective as we have now made caring for the body, prolonging physical life well beyond “three score years and ten” in many cases, we simply should not subject sufferers to the indignity and misery of final stage dementia, when these once worthwhile and intelligent people lie in bed, unable to feed themselves, incontinent, screaming, crying, frequently in pain, unaware of their surroundings, and unable to recognise family and friends, or even to know where they are.

Imagine – irreversibly – untreatably – being awake, aware of yourself as a person, but unaware of who you are, who anyone else is, or where you are.

Imagine the terror. Why do we sentence our beloved old people to that?

I hasten to add, I am talking about people with advanced, late stage dementia. There is much great work being done with people in the early stages of this illness. I am arguing for dignity in dying for those who have passed into the nether region of late stage dementia and who have no quality of life left, whatsoever. In my opinion, we need a three stage plan.

We need to continue the fight to find a cure and effective treatment/maintenance for people with Alzheimers, as we indeed are, but as our population grows and ages, it becomes an ever-increasing priority. Part of that fight should be to continue the effort to advise us all on the best ways to keep our brains as healthy as possible, for as long as possible.

Second, we need to pass dying with dignity laws so that people with living wills that have stated they do not want their life unreasonably prolonged when they have lost control of them are not forced to stay alive against their express wishes. And so that brave spouses or children do not have to break the law to render them mercy, or be forced to take their own lives, in part, perhaps, to escape prosecution for a final, incredibly courageous act of love.

And third, we need to respect those who raise legitimate concerns about protecting the interests of the elderly and infirm, but to reject – out of hand – the right of those of a particular religious persuasion to allow their personal beliefs – especially when expressed in alarmist or coercive manner – to overwhelm the democratic process of offering people stricken with this illness a quiet, gentle passing.

I am a Christian. In my opinion, those who demand that our elderly continue to suffer until their hearts or lungs give out on autopilot will likely spend eternity in Hell for their thoughtless dogmatism.

A Hell that will be just as awful as the one they blindly sentence millions of other people to, right here on earth, despite the best efforts of our wonderful aged care professionals.

A short story on the events surrounding my mother’s death is in my recently published book, 71 Poems & One Story. A share of any profits go to the Bali Children’s Foundation and Alzheimer’s Australia.

The story of Mr Snelling and his wife follows (from Yahoo):

Charles Snelling and his wife Adrienne in happier times

The bodies of Charles Snelling and his wife, Adrienne, both 81, were found Thursday in their home in Trexlertown, eastern Pennsylvania.

“Our father ended our mother’s life and then took his own life as well,” the family said in a statement.

“This is a total shock to everyone in the family, but we know he acted out of deep devotion and profound love.”

The coroner said Charles Snelling shot himself; autopsy results on his wife were pending.

Charles Snelling, prominent in local political circles, responded late last year to a call from Times columnist David Brooks for people older than 70 to evaluate accomplishments and lessons in their lives.

In an essay published online in December, Snelling looked back on the turn his prosperous and happy life had taken, mixing memories of the young woman he fell in love with at first sight with the challenge of caring for someone with dementia.

They had five children in a life he describes as “charmed,” partly because he was from a wealthy, well-connected family.

But six years ago, Alzheimer’s disease arrived.

“It never occurred to me for a moment that it would not be my duty and my pleasure to take care of my sweetie,” he wrote. “After all, she took care of me in every possible way she could for 55 years.”

He and Adrienne Snelling “were wonderful parents and grandparents”, the family said. “And the love they shared during their 61-year marriage was total and complete.”

Snelling was a pilot and served for four years as president of the city council of Allentown. He also chaired the authority that manages Reagan and Dulles airports in the Washington DC area.who had recently written in The New York Times about his love for his Alzheimer’s-stricken wife killed her and himself in what their family called an act of “deep devotion”.

The bodies of Charles Snelling and his wife, Adrienne, both 81, were found Thursday in their home in Trexlertown, eastern Pennsylvania.

“Our father ended our mother’s life and then took his own life as well,” the family said in a statement.

“This is a total shock to everyone in the family, but we know he acted out of deep devotion and profound love.”

The coroner said Charles Snelling shot himself; autopsy results on his wife were pending.

Charles Snelling, prominent in local political circles, responded late last year to a call from Times columnist David Brooks for people older than 70 to evaluate accomplishments and lessons in their lives.

In an essay published online in December, Snelling looked back on the turn his prosperous and happy life had taken, mixing memories of the young woman he fell in love with at first sight with the challenge of caring for someone with dementia.

They had five children in a life he describes as “charmed,” partly because he was from a wealthy, well-connected family.

But six years ago, Alzheimer’s disease arrived.

“It never occurred to me for a moment that it would not be my duty and my pleasure to take care of my sweetie,” he wrote. “After all, she took care of me in every possible way she could for 55 years.”

He and Adrienne Snelling “were wonderful parents and grandparents”, the family said. “And the love they shared during their 61-year marriage was total and complete.”

Snelling was a pilot and served for four years as president of the city council of Allentown. He also chaired the authority that manages Reagan and Dulles airports in the Washington DC area.

Australians seeking information and support on Alzheimers should start here: http://www.fightdementia.org.au/ Alzheimer’s Australia have not been approached to lend support for this article, and may not support it or the opinions I have expressed.

Comments
  1. Paul Brixey says:

    Very moving Steve and I’m with you on this one.

    Like

  2. My father passed in 2010, his battle with Alzheimer’s was lengthy but after my mother passed 10 months earlier he had no cause to continue. New drugs had been able to prolong his cognitive skills for nearly 8 years, my mom had been his caretaker and the love of his life. At her funeral he leaned over to me and whispered “I am done”. I understood. He stopped taking his medications (all of them). I let him. My siblings were furious.

    At the time he made that decision he, he could. His passing was actually a medical mistake, a doctor perforated his bowel during an exam, he got sepsis and passed within 3 days. I spent most of the last 10 months of his life with him and was grateful I was able to do so though toward the end he most days did not know who I was. The only thing I can say, on good days he did not remember the love of his life was gone, he was peaceful. On bad days he knew and he mostly cried, he was lonely and knew what was happening to him; it was horrifying to watch.

    Your piece was well done. I have always supported the right to make these choices about end of life. I have both a DNR and a Living Will, have had for many years.

    Like

    • Thank you for sharing your story too Val. I think the more of us who tell these stories, then the more the world will listen to voices of sanity on this subject. I am very touched that you wrote about your family’s experiences. I know it is never easy, and I am sure your Dad is proud of you.

      Like

  3. Reblogged this on state of mania and commented:
    This was on to me by a reader of my short blog about my Mother. I watched my Grandmother go through this to the end, and now my Mother, and this article is indeed a hard note on the “End of Life” issue.

    Like

  4. A very good article you wrote. What you’re advocating is factually the laws and situation in the Netherlands and to some extend in Belgium too. Being Belgian living in Amsterdam doesn’t make me feel proud or better but happy that both countries have a lot of legislation on life and quality of life. Both countries have had same sex living together legislation for nearly 20 years and now 11 years of same sex marriage. This is just like euthanasia a matter of people’s own wishes about their own lives only. Nothing changes the lives of straight people when 2 people of the same sex get married, nothing changes the lives of heathy people when someone doesn’t want to carry on anymore for what ever reason. Having said that, it is still illegal to commit suicide or assist someone with suicide over here. We have a strong voice to change those laws too, but it won’t get a majority yet. Self determination on the quality and equality of your own life is something the vast majority over here agrees on. Therefore we have after registration, also a donor codicile in our wallet stating your wish on organe transplantation (in NL yes or no, in B only an explicit no.) Many of us have also a will attached, to not extend medical treatment for an uncurable life in coma. I have my registered codicile with the explicit yes on donation and the donation of my body for scientific research as wel a my will to no extend medical treatment for an uncurable life. The latter is still not common and not arranged in every detail, but it makes it easier when my organs are needed for transplantation. The reason I also donated my body for scientific research is directly related to Alzheimer’s disease too. They need brains not for transplantation but for research and I have donated them to the Dutch Alzheimer’s research foundation in advance. I’m mentioning these factual things because some GOP candidate recently said publicly that “many people in the Netherlands have a note in their wallet with the words : Please don’t kill me with euthanasia!”

    Like

  5. Hema mate says:

    God will bless you all very soon. . ! Keep smiling . . .

    Like

  6. […] What do you do when the person you’ve loved for a lifetime just isn’t there any more? […]

    Like

Leave a Reply to Alzheimer’s: get involved. Before you can’t. « Well, This Is What I Think Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s