Writing My Own Story

“Ideas shape the course of history”

— John Maynard Keynes

This was a quotation I learned in high school, as Keynes espoused the idea of the government’s role in the economy which remains prevalent to this day. However, a separate broad idea in healthcare is also having dramatic effects on our current history. Today, the healthcare establishment has this idea of extending lifespan without extending healthspan. In other words, we are allowing people to live for more years, but those extra years may not be healthy ones.

This flawed idea shaped the end of my dad’s life and ultimately prevented him from writing his own story all the way to the end.

In last Sunday’s post, I wrote about the end of my dad’s life, and I referred to a set of conversations in the hospital after a heart attack, 7 years before his death, in which he advocated against having life-extending treatment bypass surgery. Over several hours-long discussions, my dad shared some pretty interesting insights and feelings about not believing that his whole system could be corrected by simply addressing the blockage in discrete locations. He was also concerned about the effects of the surgery on his lymphatic system. I don’t think he really anticipated the vascular dementia that would ensue after he ultimately agreed to treatment, but he believed intuitively that something would go wrong. He didn’t have the exact words to convey that we’d be extending his life but not extending his health. He was in many ways just ahead of others and the healthcare establishment in rejecting a flawed idea of our time.

Since then, I’ve been asked the question whether I would have altered the course of history by honoring his request to forgo treatment and trying to bring my mom on board with that concept. It’s an idea that I’ve considered often.

After all, had we honored his request, his heart would have likely failed before his brain. If that were the case, he likely would not have experienced the worst of his dementia or spent time in a memory care facility. He likely would not have lost all his money on failed business ventures. Our final memories would probably have been much different. I wrote last week about my discomfort that my first Substack post about him was about the end of his life with dementia rather than all the ways he influenced me before dementia took over. And now, this is my second one. The dementia played the leading role in his story, not his own thoughts and actions. In hindsight, it’s hard to think if I got a “do over,” that I would make the same call to honor my mom’s wishes and convince my dad to pursue treatment in light of all this.

Still, the conclusion I keep coming back to is that I don’t think I could have made a different decision at that moment. My dad had decided to stop seeing his cardiologist years before his heart attack and had years to silently consider his future. The problem is that he never shared these thoughts about his own mortality and end-of-life concerns with us. The hospital room was just not the place to have these conversations for the very first time. We were overwhelmed with a set of emotions and (quite honestly a very non-Buddhist) attachment. Considering the flaws in the concept of extending his life without extending his health would have needed time to soak in before we all agreed to a (literal) life-altering decision.

So what do I take away from this?

I am facing my own health situation, with progressing type 2 diabetes and stage 4 chronic kidney disease. I also face a family history of dementia. In some sense, my body and my brain are in a race to the bottom. Much of the motivation for me and Marsha to have me retire early was so we could maximize the time while my body and brain still allow us to experience life together to the fullest! 

Like my dad, I have had many years to think about this. I’ve known about my diagnosis of Type 2 diabetes since my thirties, and I knew that my body wasn’t responding to the drugs well. All the things that I’ve been warned early on about have basically come true, down to kidney disease and eye problems (diabetic macular edema). Right now, I am being told that with virtual certainty I will hit end stage renal disease, as I am just too young to have such an advanced decline in kidney function. The good news in all of this is that my medical team sees that I can accept these facts, and we stay focused on what we can do, which is to keep my blood sugar and blood pressure under control as best we can.

However, looking forward, it’s also hard for me to make mental plans to grow old in a healthy way. The research shows that patients with progressive chronic kidney disease spend a median of 4.2 years in stage 4, and <1 year in stage 5 or ESKD (end stage kidney disease). This would put me at the end stage by around age 62. Of course, there are options there, including dialysis where there’s an average life expectancy of 5-10 years. There are also kidney transplants as an option. There may be other options by the time I get there, but I want to be careful to keep in mind healthspan as we make these decisions as a family.

It’s important to remember that even if I do make it to an older age with kidney health, I am also more likely to get dementia than most, as I have one APOE-4 allele, which puts me at an Alzheimer’s risk of 2-3 times higher than baseline. We never did this genetic testing on my dad, but I wonder if he had this fear.

I can watch for changes in technology, and some of these have come (Ozempic is a miracle diabetes drug that my body has responded to without apparent side effects. I didn’t even lose weight!) However, even casual conversation about growing old together brings skepticism for me. I’m not really afraid of dying, but I feel bad to leave Marsha by herself or to care for me when my body fails. Worse yet, I really don’t want to leave her with a dementia patient if my brain fails.

Of course, none of this timing is certain, as Marsha correctly points out that she might get hit by a car crossing the street one day. (The actual statistic is a 1 in 468 chance of dying in a pedestrian incident, so the chances of this are still pretty low.) 

What I know is that Marsha’s mom lived for 23 years without her dad. My mom has already lived 11 years without my dad, and she’s still healthy! (She, with the help of my sister, is a TikTok and Instagram influencer as a 90-year old!) As such, I have many thoughts about how realistic it will be for Marsha and the kids to be living life without me, as I believe my dad must have internally thought as he evaluated his own health situation. I know it’s difficult to talk about end-of-life. 

Still, even if it makes my family uncomfortable to talk about end-of-life, I have been trying to make my own inner thoughts known. I don’t want my kids to be organ transplant donors for me. Why should I take chances away from their futures? I also don’t want to bankrupt the family to keep myself alive. I don’t even want money spent on expensive grave sites or fancy caskets to burn me in. A couple years ago, I attended a webinar on the Oregon Death with Dignity Act (DWDA). I now know that while DWDA can’t help me if I become a dementia patient because of a competency requirement, I do have the option of simply not starting or terminating dialysis if my kidneys fail.

In the end, I don’t believe I would alter my dad’s history, but I can honor it by learning from it.  I agree with my dad’s belief that there wasn’t much point to extending lifespan without extending healthspan. I also reflect about how my dad’s dementia robbed him of his ability to write his own story. Therein lies the purpose behind my Substack. I want to be able to talk about end-of-life and tell my own story while I still can! 

I also want to be able to encourage others who might be having similar thoughts to share them with their loved ones. The intention is not to be fatalistic or even a downer but rather to celebrate life and to use what time we have in the best way possible! Marsha, for her part, has done a lot to support me in writing all of this down, so I can tell this story. Hopefully, together we can all battle the current idea at this point in history of extending lifespan without increasing healthspan.

Thank you for reading this and supporting me in this journey!