Thanks to Canadian author C.D. Gallant-King for this image.
I really want to go to that conference! Hot diggity, I am SO ready to contribute! I’m needy too, I admit it. I want to grow a network that will help me raise my voice about what excellence in dying really means. I would love to be in Ottawa in September. The Canadian Hospice Palliative Care Association has hit the nail on the head with its vision for the event. How can we all expand all our horizons about a palliative approach to end of life care? Hey, I wrote a book on that! It’s called The Dwindling: Twin Daughters’ Caregiving Journey to the Edge of Life and it will be published this spring. It’s about my challenges finding and then keeping an ‘excellent dying’ approach for my mother. (That’s what some palliative care folks call their way of doing things.) But she was hounded by medical systems that insisted she didn’t deserve such care once she had passed her expected expiry date without expiring. Like yogurt to be tossed out. Mine is just one story. If I tell it boldly though, I’m hoping to encourage other caregivers to share theirs too. It’s the power of ten. Just 10% of us demanding our right to dwindle in comfort and dignity can expand that new horizon of exceptional dying.
Actually, we caregivers are way more than 10%. About 28% of Canadians are doing that job at any given time. We tend not to talk about what we have learned. But we should. No one else in the circle of care is as close to the end of life reality as the family caregiver. Everyone else finishes their shift and goes home. Our 24/7 perspective is not just hard won, it is precious.
But there’s a big financial barrier to this event. Ottawa is a huge air fare away from where I live. Then there is the hefty registration cost, hotel, food, futzing around in taxis…no way I can do that without help! There is no tax loophole I can crawl through, or supportive boss calling it “continuing education” like I’m guessing the health care professionals have to help them along. There is no announced program yet, though the website banners have calls to action like “Speak up—Start the Conversation about end of life care!” Sadly, my efforts to be a presenter or panellist have gone nowhere. The “no way” came in a brisk one liner to my pitch. Looks like I’m blocked by that financial wall.
Another conference looks great too. The Canadian Society of Palliative Care Physicians is meeting in June, closer to home. Its program makes my heart beat faster. The keynote, for example, is “Respect: Earning our place at the table. Towards a cultural change in medicine.” Yes! I would give my eye teeth to soak up those ideas. And contribute my two bits. One workshop asks how physicians can find out about the needs of families and individuals within the “phobic lens” we have of palliative care systems. Another will get to the heart of tricky yet common end of life situations that physicians call “advanced frailty” in public but “dwindling” when they are on their own. My lived experience must be gold to them! Best of all, I can hobnob with the new generation of palliative physicians, who I’m sure will welcome my perspective on the need for broader conversations. One of them actually has a research project about building compassionate cities. Hell ya!
Alas, this conference is off limits too. I’m not smart enough in the right ways. Though it will “educate medical colleagues…patients, families and the general public about palliative care,” only docs are invited. Why? Well, it seems the rest of us just won’t be able to understand the “advanced medical content.” Busted again, this time because I’m considered too dumb to engage.
There’s a problem here. I see a multi tiered system deciding who gets to talk to who about what, and the family caregiver isn’t even on the ladder. If considered at all, it is “care for the caregiver” stuff. It’s seeing my tribe as victims. But I never wanted care. All I’ve ever needed has been to be heard.
There’s a metaphor for that. We have to avoid the trap of drinking our own bathwater. I get it that doctors have to talk to other doctors sometimes without pesky family folks around. And family folks might be more ready to share their truth if they are not afraid of physicians condescending to them. But if we can’t find a way to welcome all the stakeholders to the face to face palliative care conversations, we’ll all lose.
If we are not to gag on our own bathwater, we need to find ways to talk to each other, not about each other.
My twin Judi sent me a link to a blog last week. It’s theme was Best Lent Ever. Though I’m not the fervent Catholic she is, I appreciated it because it is a reflection on happiness. Not the “great steak dinner” kind of hedonistic happiness, but the kind of contentment that emerges from doing the right thing. Best selling author and articulate Aussie, Matthew Kelly, called resistance the slayer of dreams. I was intrigued, and it got me thinking.
Millions of family caregivers carry the hod of support to what we all assume are “their loved ones.” But hey, there must be more than a few resisters in the crowd. For those reluctant caregivers, the job never stops feeling like drudgery, an obligation they fulfill out of duty rather than love. And for them, everything must be harder. “Your mother is so lucky to have you!” sticks in the craw, I bet.
The first blog post of The Best Lent ever surprised me because comments poured in from all over the world and all sorts of family caregivers and all twisting in knots with their resistance and stewing in their feelings of guilt.
A guy named Darren said he was giving up negative responses for lent and instead would feast in the joy of the moment. Susan admitted she was jealous of the time she had to spend with her dwindling mother. But she was going to be happy, darn it! After all, hadn’t mom cared for her once? Then there was a twist. A mom being cared for wrote in. She felt worse because she felt so guilty for being so needy. So she was going to pray for patience, but also do drop her resistance to the help her daughter offered. Her being bitchy about being needy made everything harder. Hmmm….
Guilt affects us all, caregivers and cared for, at at one time or another. We didn’t do it. We didn’t do it right. We didn’t do it enough. We were impatient on the giving or receiving end. We were snarky. In our heart of hearts we wanted to offer less or wish for more than we are getting.
This was all about the guilt trap. So the comment I liked the best was the one that summed it up by saying the biggest thief of happiness is regret.
My conclusion? We need to allow people to be reluctant caregivers. We have to honour them because, feeling as they do, they still don’t walk away. Loyalty and duty count for a whole lot in this caregiving conundrum. A sadly now defunct blog in the New York Times called The New Old Age, written by Paula Span hit the nail on the head. “Elder care can be a wonderful experience, satisfying and meaningful, but guilt and resentment are also standard parts of the job description, at least occasionally.” The New Old Age is now a twice monthly column at the New York Times.
So lets clear out the guilt by naming our resistance. Let’s talk about our real feelings when we can. Let’s seek support for ourselves whether we are eager or reluctant caregivers, or somewhere in between, depending on the task or the day or what we’ve had to give up to do that be the designated provider.
“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!