“Did your Granny Rebecca go to an old folks home when she dwindled?”
That was my innocent question. It unleashed a storm. I saw it right away. My mother’s rheumy eyes grew steely and her gravelly voice took on that cold slow motion cadence that I remembered so well as a child when I’d said the wrong thing, the really wrong thing. “Dwindling?” she bristled, “That is not a very nice word!" Though I shrivelled inside, I didn’t back away. We talked about what to call that last phase of life when everything gets really tenuous. We agreed that though the word didn’t feel warm and fuzzy it "called a spade a spade," as mom put it in her always colourful way. We went on to talk about how Granny Rebecca was looked after in her home until the end of her long life.
The thing is, though, dwindling is an accurate word. It describes perfectly what will be the end game for four in ten of us, according to research done by Washington DC’s Altarum Institute, Perhaps Mom bridled at it because she foresaw that dwindling would be her fate and she hated to think of her demise this way, helpless and a burden. And that's exactly what happened. When I finally wrote a memoir about my decade of caregiving I called the book The Dwindling.
In this post, I want to deconstruct this uncomfortable label. As Dr. Joanne Lynn of the Altarum Center for Elder Care and Advanced Illness has pointed out, "we need to get people familiar with the language and experiences at the end of life."
The word dwindling has its origin in old English as ‘dwine’, meaning to fade away. We know it in modern usage as anything shrinking gradually, as our dwindling bank account. But there is also a medical definition. The dwindles is “a condition of physical deterioration including several body symptoms, usually in an elderly person.” (Medical Dictionary, c. 2009 Farlex and Partners).
It’s a colloquial word, of course. Doctors use it frequently among themselves. It is part of a secret language, according to the Canadian doctor and broadcaster Brian Goldman. It's slang that helps them cope with the patients they might wish they didn’t have to deal with. In front of the family, they prefer weasel words like “failure to thrive” or “frail and fragile”. The doctor secret lingo is richer, though unkind. The dying might be “circling the drain,” and geriatric wards might be called “the departure lounge.” The Emergency Room is full of it. My mother was in and out of ER several times a month in her last years of fighting for more life because there was no other place for the kind of help she needed. I’m sure she was called a “frequent flier.” I hope she was never called a gomer, but I know that is how many of the doctors reacted to her crises. Get Out Of My Emergency Room. Years later, those memories still punch me in the gut with a mix of sad and angry.
This clip from the prologue of The Dwindling explains it well I think.
The thing is, we North Americans are living a new medical reality that was rare in Granny Rebecca’s time. Our modern health care systems have been successful in cleverly supplementing the body’s shortcomings, and made it possible for many of us who would have been quickly dead short generations ago to live now for years “in the valley of the shadow of death.” Acute causes of death have become chronic illnesses. There is a longevity revolution. Few think to ask whether there is really quality in those extra years.
Most of us have fantasies about our personal death. Perhaps a lightening bolt will do us in on the 18th green. Maybe we will die in our sleep at 100 after a perfect day with the grandkids. Or we might be fit and active until some disease swiftly takes us to our reward long before we get to that point of being “a bloody nuisance,” as my mother sometimes put it. We are a death denying culture.
But research reveals another reality. We die differently now.
A scant 5% of us will succumb to an accident or a gunfight or some weird infection like SARS or ebola. Approximately 20% of us will contract some sort of fatal illness, like cancer or other villains of the cancer ilk. Chances are, even with that illness, we will maintain good function for weeks, months or even years between bad patches that kick us off the well being cliff, thanks to all the medical interventions made on our behalf. But the time comes when we go into rapid decline as the illness overwhelms us, and we die.
Another 25% of us will have diagnoses like chronic heart failure or emphysema. We will have slow decline in function, with scary episodes that we look back on as being close to death, but as often as not, we survive at least a few of them. At some point though our luck runs out, rescue fails, and we die.
The rest of us, 40% to be more precise, will have nothing in particular going wrong. There will be a long term fading of function, with one loss succeeding another in a “when will it ever end?” reality that takes over our family as we need more and more care. That will drag on, most likely, for years and get harder and harder for everybody involved to find that elusive quality of life. Half of this group will get the dreaded Alzheimers or other dementia, but the rest will remain what the doctors call, “cognitively intact.” At the end of this trajectory to death will be some minor physiological challenge that would have been no more than an annoyance earlier in life—the flu perhaps, or a urinary infection, pneumonia, or a broken bone. In short, 4 in 10 of us will be dwindlers. We’ll live three or four years, or longer, with an illness that will eventually end in death, but many of us would say under our breath perhaps, not soon enough. The death certificate might just say, "old age" was the cause.
So what’s my point? It is this. Our longevity revolution has profound implications for public policy at the dwindling end. A whole new system of care is going to be needed, and lots of it because we boomers are a silver tsunami. Most of that care is assumed by health systems and budget builders to be coming from the family, just as it is now. Yet smaller families and grown kids living far from mom and dad is the critical shift between past and future. The pressure on families will grow exponentially. On women. More than 60% of family caregiving is done by daughters or wives. Yet our system of health care of the old-old stays stuck in the mental closet. Decisions are built on the hopes and fears of the 50 year old men in suits who are still mostly in charge, making most of the policy decisions. And they are scared silly by the thought of heart attacks, strokes and prostate cancer.
That’s why Conversations with Caregivers are important. Those of us who know the cost of dwindling on our lives need to start talking and find ways to challenge the paradigm. I'm thinking all our stories together, coming from the presently silent majority of caregivers, just might begin to pave the way for meaningful change.
So let's all get talking about The Dwindling Time.
it's about the journey
Caregiving was my first and finest journey. Writing this book about it was the next. It lends support to other caregivers who say, "that happened to me too." I'm on another journey now, advocating for caregiving and an activist to bring on better ways of thriving as we age. It's all brought me purpose and meaning, Come along and get some of that too! I'd love to share your stories. Boldly speaking out about our experiences makes us all part of the change we want to see. So
Join me! Let's talk!