LIVE BY DESIGN | My father taught me how to live and then he taught me how to die

I visited my good friend who is in post-op recovery. She told me of her pre-op preparation, of her instructions to her daughter, her clarity about her Do Not Resuscitate order in the event of things going badly.

Then she asked me, “Do you remember that sentence from Abraham Verghese’s novel, Cutting for Stone?” it goes something like: “My father taught me how to live and then he taught me how to die.”

We then talked about her father, “Pa”, and how indeed in practice, on three occasions, he guided his family to accepting that death is part of life – that there is a time for acceptance and letting go. This is part of the legacy that was his gift to his family.

The first occasion was during my friend’s childhood. Her family took care of an elderly aunt. At a certain point of poor health and declining quality of life, her father asked the doctor for no more medical interventions.

Later when his wife was diagnosed with dementia he was a loving caregiver, assisted ably by daughters, two of whom are medical professionals. He watched his wife’s physical health decline over the years.

When kidney dialysis was proposed he sat with his family and drew the line. Let nature take its course.

Then it was his time. He had only one lung. One Cape Town winter, in his early eighties, he struggled to breathe. He accepted to go to the hospital and spent time in ICU. When he rallied, he asked to be transferred to a normal ward which would allow him visitors.

He spent a couple of days there during which, in retrospect, he said his goodbyes to all he loved, either as visitors or telephonically. He also instructed his daughters not to interfere in the event of his breathing failing, telling them: “I am ready to meet my maker”.

And that is what happened. When his breathing failed again, the two of his four daughters – the two medical professionals who were sitting with at his bedside, courageously restrained their impulse to intervene. They respected his wishes.

I think of Pa as (a) wise, (b) courageous, (c) spiritual, (d) philosophical, and e) fortunate. It was a privilege to know him and appreciate his influence.

The first four of those attributes are the outcome of personal agency, how he chose to shape his life over decades. What is the why of the fifth descriptor, “fortunate”?

I think he was fortunate in that his end-of-life trajectory was relatively short – that he did not spend weeks declining. For those who die more slowly it can be such a harrowing experience both for the person dying and for those who witness. I remember Mapi sharing with me that her last image of her mother is one of her mother’s face wracked with pain.

My late husband was restless in his last days. Now I have become familiar with the term “terminal agitation” and have learnt so much more about how hard it can be for everyone concerned when death comes slowly.

I want to die at home surrounded by my loved ones. But when I seriously consider what that might mean for them, I have doubts about my request. 

We cannot predict our dying days, but these are some of the things that may happen:

• I may need people to turn me so that I do not get bed sores.
• If it is cancer that is bringing me to my end, then I might have mouth ulcers as one of the possible consequences of chemotherapy.
• My muscles may relax, and it is possible that I will lose control over my bladder and bowels, and someone will have to change my soiled bedlinen or my adult nappy.
• If I have been given pain medications these can increase the possibility I will become delirious especially if they are opioid based.
• I am informed that as my organs begin to fail, such as my kidneys and liver, the organ failure can also impair brain function and result in delirium, restlessness, and agitation.
• Additionally, as my heart and lungs begin to fail and my brain receives less oxygen, this can make restlessness more pronounced.

This is scary. This is hard for all concerned. I feel sobered by my learning. But the hospice and other care-giver training insist that you must arm yourself with practical knowledge as the first step forward to engaging with the fear.

It is emotionally devastating to watch someone you love being in distress and pain, agitated and delirious. I will be forever grateful to the Johannesburg hospice nurse, who came to my mother’s home, supported us psychologically and made sure that we had some calming tablets, on hand, to give to my mum as needed.

Causes of terminal restlessness https://cdn.24.co.za/files/Cms/General/d/11024/b6728543345a432284a3e22adca7c0da.png

Eighty percent of people say they would like to die at home. I am in that cohort. I even have a drawing of the exact spot where I would like my dying bed to be, what I can see from the window, which paintings are on the walls, the digital photo frame within eyesight, the music system etc.

BUT, when I consider the details of the dying slowly possible indignities, I have to ask myself if I’m not assuming too much? Are my nearest and dearest truly ready to say yes to my request. And if so, do they fully understand what that may entail? It is a big ask, the biggest I will ever have made in my life. I must be ready to understand if indeed those that I love to tell me that this request is not possible for them to say yes to.

I need to have these more explicit conversations.

Pa’s death was blessed by his family all being on the same page. That’s a legacy I aspire to achieve.

Here’s wishing you well with your hypothetical conversations about your last days.