It used to be that we died at home

It used to be that we died at home

In the days before medicine advanced enough to fix organs and enable us live ever longer, it would’ve been considered a betrayal of family to let a loved one live out their lives in the company of strangers.

Never was the word ‘burden’ spoken when caring for and putting at the center, their loved one. It was a given that the immediate and extended family would help – would ‘give back’ – to that person who’d given so much during the course of their lives.

Dying was a family affair

Each family member would take part in the care and tending as functions diminished – whether it be washing, cleaning, feeding or keeping company. This doesn’t mean it was a welcomed experience for all, but it made the closing of circle of life less scary, daunting and unfamiliar. The spirit of that loved one lived on by their consistent presence in the family home.

How many have seen dying and death?

These days, most of us know dying and death from the media – whether through constructed drama (ER, Scrubs, CSI) or real-life (pick a war-torn country). These are but fleeting moments that don’t reflect the reality of the emotions and exhaustion that come with the crises of a prolonged period of dying.

For we who have no medical training to cope with those crises – however small – it can be terrifying. Coupled with the (often false) promise of the hospital as a place of restoring health.

Answers require questions

As I come to learn more of what to expect, I realize that’s what’s missing: we don’t know what to expect any more.

A bladder infection or pneumonia – common in the elderly or in a compromised immune system – can be treated with antibiotics, but that often comes with its own unintended consequences: a further weakened immune system.

In the words of two women I recently interviewed – who are determined to understand what we need to support dying at home: “The core of being at home is that it enables autonomous decision: if I want to have a dog, I can”.

There may not be any easy answers, but if –as all the surveys indicate – we all want to die at home, isn’t it essential to ask the questions?

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Kathy Kastner

In 2008, Kathy Kastner launched Ability4Life.com for adult children caring for aging parents. Her journey, and the resources curated along the way, is called BestEndings.com (for those who want to talk about the end of life, and those who don’t).

Note: This Perspectives Blog post is written by a guest blogger of DrGreene.com. The opinions expressed on this post do not necessarily reflect the opinions of Dr. Greene or DrGreene.com, and as such we are not responsible for the accuracy of the information supplied. View the license for this post.

  1. I sat at my dad’s bedside – in a nursing home, so it was “home,” of a sort – for the last 40 hours of his life, as Parkinson’s finally shut him down. It was one of the toughest things I ever did, but it’s a memory I treasure. When he died, early on a crisp, clear November morning, it felt like the old Navy fighter pilot finally had the right flying weather to lift off one last time. There were no beeping monitors. There were no alarms. There were no codes. There were those that loved him, including his wife of 53 years, at his side.

    I sat with my almost-ex, now late, 2nd husband this past February, in a hospital ICU, as he left this life. It was a very different setting, but a similar experience. His beloved son, my stepson, was at his side, as were two of his cousins. As hospital deaths go, it was a good one: caring clinical staff, a minimum of machinery, respect for the man in the bed.

    It’s critical for each of us to help those we love die in a way that honors them, and ourselves. The medicalization of death has given us the mistaken impression that death can somehow be prevented. Best we can do is postponement … but at what price? Life is 100% fatal. Only by admitting that can we see our way to dying at peace, or at home.

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    • Alan Greene

      Beautifully put, Casey. Thank you.

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  2. Mary Alward

    Not much information here.

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    • Alan Greene

      To me, the disconnect between most of us wanting to die at home (or in a home-like setting) and most of us actually dying in a medical death is huge. Information to be acted upon.

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      • Alan Greene

        Thanks, Casey. I agree!

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  3. Alan Greene

    I know for me my first learning about death came when our dog died when I was in second grade. Going though that as a family helped prepare me for when I lost my grandparents. If “we all want to die at home” (and I do) we do indeed need to talk about end of life and ask questions. Thanks, Kathy!

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    • Sherry

      I was there for the my father 3 years ago and my older brother 2.5 years ago. Neither were easy. My brother we were only able to get there hours befor death but he knew we were there. His was very unexpected. My dads was more expected and we tended him round the clock for just over a week of the actual process. Personally, being there at that moment, I have a certain level of PTSD from it and have many sleepless nights as a result… But while its not my first choice of how to spend my time, It was the right thing to do. As for myself.. I honestly don’t want my family to feel obligated to do anything or be anywhere, so if it is best for their welfare in the long run.. they can be with me, or not. I don’t want to be the cause of anyone elses sleepless nights and triggers.

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      • Alan Greene

        How hard, Sherry! I certainly agree with “it’s not my first choice of how to spend my time,” and also that sometimes it’s the best of the available choices. I think it’s great that your experiences have led you to think about – and communicate – what you want for yourself.

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