What’s Causing the Caregiving Crisis? Part 1: Survival

Despite being a nearly universal human experience, caregiving is a seldom-discussed topic — one that has only recently entered the public dialogue as a developing crisis. I believe, perhaps controversially, that this is because the caregiving role was not only less prevalent for previous generations, but also less difficult. To understand why this shift has occurred, we must look at the forces that are exacerbating the problem today. In this three-part series, I’ll discuss what I believe to be the three core drivers of this crisis, namely: increased survival, the modern career, and shifts in cultural norms. Today, I’d like to start with survival.

My Connection

Longevity is a core trait on both sides of my dad’s family. His mother lived to the age of 97, while his father made it to 82. It seems my grandfather wasn’t the only Masterson man who lived a long life: Check out this gravestone from his family line. John Masterson (JP) was born in Scotland in 1836 and died in 1920 at the age of 84. Accurate data from this period is scarce, but from what I can find, it seems that life expectancy at the time of his birth was somewhere between 30 and 50 years old!

What’s really interesting, however, is that my dad’s family has a history of remaining relatively healthy; even later in life, most of them do not tend to develop major medical conditions. My grandmother, who passed away when I was in business school, remained mentally sharp until the end. She was also self-sufficient for nearly her entire life, requiring only some nursing support and extra visits from my parents in her last couple of months. I never knew my grandfather, who was already 50 when my father was born, but I’ve been told that he also enjoyed good health most of his life.

Contrast this with my mom’s family. My maternal grandmother passed away from cancer when my mom was in her late 20s. My grandfather, the subject of an earlier post detailing how I discovered caregiving, survived to 92, but he was beset with health problems for much of his life. Decades of smoking likely led to his quadruple bypass surgery, and his dementia left him in need of care for the last decade of his life.

Our Shared Story

Stories of good health and longevity, like those in my dad’s family, remain rare. Experiences of chronic, age-related illness, like that of my maternal grandfather, are far more common. This type of decline — which many mistakenly think of as normal aging — is also what the majority of people associate with caregiving. Most people are familiar with the implications of aging, and as such, they have accepted that they will be responsible for their parents as they age. The net effect of more people reaching advanced age is an increased incidence of high-workload caregiving scenarios.

A less familiar story is survival of more acute problems. What if, for example, my maternal grandmother had been diagnosed with cancer today, in 2019? With today’s screening methods and therapies, she would have had a better chance of survival — and this survival would have had significant implications for her family. In short, they would have needed to find a way to step up. My grandfather, a busy entrepreneur at the time, would soon go on to develop a heart problem, and would later experience cognitive decline. Their children were already building careers and having families of their own. The reality is that more time with my grandmother — something we still dream of and wish for — would have created an awful lot of work, particularly during her treatment and the years of physical and emotional recovery that would have followed.

Thanks to modern medicine, this type of survival story is increasingly becoming the norm. Audacious surgeries, revolutionary therapies, and wonder drugs can prolong lives that would otherwise surely be lost. But in an overloaded medical system designed for acute care, we are forced to send chronic problems home. Our gargantuan advances in treatment are vastly outpacing our capacity to care for the beneficiaries of this progress, leaving the task of caregiving to fall squarely on the shoulders of loved ones.

This phenomenon is not restricted to the elderly. Many childhood illnesses have lost their terminal designation in recent years, and we’re just not used to it yet. Caring for sick children who are not only expected to survive, but also to live with related issues for years to come, is a new reality for many. While parents are certainly grateful, they are also confused and overwhelmed. Having little precedent to work from, most are forced to cope with each new challenge as it comes. Further, these caregivers may also have parents of their own who are still living, many of whom require care. The term “sandwich generation” is often used to describe those simultaneously providing care for children, whether healthy or ill, and aging parents.

Simply put, increased survival means that today’s caregivers are being asked to do more than any previous generation. It’s tempting to think of this purely as a result of the baby boomers living longer and burdening our system, but in reality, survival rates are improving across conditions and age groups. Children with developmental disabilities, injured soldiers, and a litany of other people are now surviving the acute stages of various medical problems, and these people need care that there was relatively no demand for decades ago.

So, in a cruel twist of fate, our newfound capacity to cheat death has come at a steep price. Right now, this price is proving difficult to pay, but I think we’ve done the hard part by advancing the science. Now, it’s up to us to work towards changing our social fabric to meet the increasingly intense needs of the ill and their caregivers.

Next in the series, we’ll discuss how careers are shifting the world of caregiving.

Part 2 is now available here!