A Conversation with Jay Newton-Small
In our search to understand the caregiver experience, we’ve interviewed hundreds of people. But today’s charge has a different gravity to her.
A dark haired woman walks into the zoom screen’s field of vision. You can tell she’s had a long day as she slumps into her chair and starts wolfing down bites of instant ramen. She’s shockingly quiet and unassuming, for an award winning journalist, best selling author, and founder and CEO of a company.
But today, the prolific Jay Newton-Small is not talking about how she’s interviewed every living president, covered the Obama and Bush administration, or reported on stories across 5 continents. Rather, she is sharing something far more personal — her story as a caregiver and a daughter dealing with her parents’ death.
And she has no intention of burying the lead.
“I always found it somewhat ironic that my mother died in the quickest possible way and my father died in the slowest possible way.”
Newton-Small has lost both of her parents, but her experience with their deaths could not have been more different.
A Mother's Passing
Her mother died unexpectedly at the age of 59 through a brain aneurysm, a bulge in one of her brain vessels led to severe hemorrhaging.
“My mother had a weirdly great death, even though I don’t think people at the dinner party thought it was as great. She died in the midst of hosting a dinner party for 14, holding the gravy boat in the kitchen.”
According to her surgeons, Newton-Small’s mother had an ideal death. She was living one moment and gone the next, with no pain and no warning signs. However, while the death might have been favorable for Newton-Small’s mother, the death was anything but ideal for Newton-Small.
When Newton-Small arrived at the hospital the next morning, her mom was brain dead, but she was still breathing. Doctors cautioned Newton-Small against keeping her mom on the ventilator in hopes of an impossible miracle. Newton-Small, who has always considered herself a pragmatic person, generally agreed with the doctors.
The more challenging choice arose when Newton-Small was forced to decide whether or not her mother’s organs should be donated (Newton-Small’s mother was an excellent candidate to be an organ donor). Because Newton-Small’s mother had not indicated her preferences regarding organ donation, the law required Newton-Small to watch as a doctor visualized the procedures required to extract organs on a doll prior to making a choice for her mother.
What was initially a simple choice became extremely complicated after 2-2.5 hours of doll descriptions.
“It was the most horrific experience I’ve ever had in my life. I thought for sure I would be very pragmatic in this. … I should help people. Of course I should give the organs to whoever needs them. But at the end of this 2.5 hour nightmare, I [needed to think about it] because I was so traumatized.”
After the visualization, Newton-Small felt completely unprepared to make a decision. Her mother had never expressed any preferences regarding either life support or organ donation. She knew that her mother had become more religious in the last few years of her life, but Newton-Small was unsure about how this affected situations like organ donation or life support.
“I needed to go home and talk to her brothers, and these are men I haven’t spoken to in decades! I needed to talk to her priest…I didn’t know her beliefs, we had never talked about this.”
The irony in this situation was that Newton-Small had intentionally had these conversations before — just not with her mom. Given her dad’s diagnosis, her father had made a will, advance medical directives, and other planning documents all signed years in advance.
“I [told my mom] that we should do this for [her] too, and she was like ‘why even bother- I’m younger than him, I’m healthy, I’m fine. no worries.’ So we never did it for her.”
Newton-Small ultimately chose to take her mother off of life support and donate her mothers’ organs, but she explains that this was one of the most difficult decisions she has ever had to make. Months after the donation, she still had nightmares about making the wrong choice and upsetting her mother.
Her first hand experience has shown her how difficult making such a decision can be for children or other decision makers.
“It’s really hard to look at this living breathing body that’s warm and feels like her, smells like her, seems like her, and do that. Even the coldest of souls finds that hard to do.”
Newton-Small’s mother’s death was not only emotionally difficult, but due to a lack of planning, it took years for Newton-Small to make the necessary financial and legal arrangements to wrap up her mother’s estate.
A Father's Passing
But when we asked Newton Small about her father, her entire demeanor changed instantly, as if the tension was corralled back into its pen.
“His passing was night and day from hers. His passing was super planned for and really easy. There were no decisions to be made by me; he had already planned it out when I talked to him in 2005, years ago.”
Because Newton-Small’s father had been diagnosed with Alzheimer’s relatively early in his life, he had reflected on, expressed, and documented how he wanted his death to be managed. He had specified what he deemed to be an acceptable quality of life. For example, he did not want to stay on treatment/medication if he could no longer speak, or if he could no longer recognize his daughter.
To help his daughter and family through these difficult conversations, Newton Small’s father did what all of our dads seem to do in uncomfortable situations. He fell back on self-deprecating humor and dad jokes. “He would always joke that he was going to become a zombie. He was funny about it … ‘don’t feed the zombie, don’t let the zombie live’ … He was good at being self deprecating and making it easier for me. That’s who he was.”
For the last two years of his life, Newton-Small’s father had deteriorated beyond what he thought was an acceptable quality of life. Newton-Small bluntly explains that she “had been actively trying to kill him for the last two years of his life.”
This was, of course, a concerning thing to hear from your interviewee. But, thankfully she elaborated!
“Ultimately, I said [to his care staff], he gets so little joy in life, let him eat whatever he wants to eat, let him do whatever he wants to do. Don’t make him do something he doesn’t want to do. Those were my instructions. I stripped him of all of his cancer meds, heart meds, etc.”
Despite stripping off his meds and respecting his healthcare plan wishes, Newton-Small’s father survived for several months longer than anticipated.
“He lived on 11 Klondike bars, 6 diet cokes, and like 3 bananas a day for like 2 years. It was impressive.”
As her father’s primary caregiver ever since her mother passed, Newton-Small did her best to ensure that her father was cared for and his pain was minimized. She also explains that while she did her best to respect the wishes he had laid out, there were some that she simply could not agree with.
“He made me promise that I would not be there at the end…But there are things that you promise people like your parents that they know and you know that you’re not going to fulfill those promises.”
She was there with him at the end after all – it was the one wish she couldn’t grant him.
While Newton-Small’s father’s death was well planned for, it did come with its own difficulties. As any advanced Alzheimer’s patient, her father was often difficult to deal with.
“He was a burden. I’m not even going to hedge that. He was an absolute burden. He’s one that I took on willingly and lovingly with an open heart. He had given me so much in life of course I would take care of him… But I think his death was a blessing for me. It freed me to think of him as the wonderful father he had been in his prime, as this amazing human, who was so happy, go lucky Australian. The kindest man I knew.”
“The conversation I had with my dad was much lighter and easier to have years before his death. We had that conversation a good 10-11 years before he died, so I knew his mind so much more easily. It made his process so much better for me. My mothers death was awful and traumatic and I had to spend years of my life dealing with it. It was like a part time job I had to do for years because she hadn’t planned for this. I know that wasn’t her intention at all, but functionally, that was the result.”
The moral to this story, if that hasn’t been made obvious by now. You can hear it in the way Newton-Small talks about her two experiences; by the tension in her shoulders as she remembers her mom and the brightness of her smile as she recalls her father’s Klondike bar obsession.
Planning for your future care, long before you get sick, affects your loved ones more than you know.
We all pass away eventually – will yours be remembered as a burden or as a blessing?
Tatiana Fofanova, PhD and Stuti Upadhyay