This is Samantha Bolen in her bookstore in Victoria British Columbia. Bolen Books is a Victoria tradition.
My neurons have snapped for days. A cognitive and creative problem, an identity challenge, began last week when I met the owner of my favourite place to be in commercial Victoria, a bookstore named Bolen Books. Samantha Bolen had agreed to help me get started in my published writer’s life and I was excited to get her tips on how to put my best foot forward. I was all ears. After all, no one knows books like Samantha does. She’s been selling them and buying them since she was 11 years old and Bolen Books is one of the best indie bookstores in the country.
I passed her my printer's proof, bursting with pride about its look and feel. The cover is illustrated perfectly by my artist daughter Fiona, My story of caregiving is just the right length and has a font just the right size for a myopic boomer like me to read it without squinting. Samantha turned the book over thoughtfully and then startled me with her question, “how important is being a twin?”
I was frozen, not knowing how to respond. After all, Judi is one of the top five relationships in my life. We are clones. We were the twin team in this book. Sure, I held the pen. But there was no page that did not have her stamp somehow. My twin important? She’s very important.
“Why?” I asked.
“It’s your subtitle. Twin Daughters’ Caregiving Journey to the Edge of life.” She studied the author picture of the two of us gazing knowingly at each other, and smiled. She said that talking about twins would not do what I wanted it to do, not do the job of a subtitle, to convert browsers to buyers in the few seconds they take to decide if my story is their story too. Sure, there are twins everywhere. Samantha got that part. And the twin theme enriches the story of course. But there are just not enough readers interested in the twins angle to make the book title snag them. “You are narrowing your reader market if you lead with twins. I suggest you change the title.”
At first I was convinced that I must never do this. Judi is too important in my life and to this story. In fact, without her, there was no story, Still…Samantha’s thoughts nagged too. I had to listen to her expert advice. So by the time I was home, I knew that I would change the subtitle after all. But to what? And how would I decide? Then I had a brainwave. Why not ask my Facebook friends? I set out a post on my timeline and asked for their opinion. Which subtitle would get their vote?
Spoiler alert. The new title is: The Dwindling: A Daughter’s Caregiving Journey to the Edge of Life. Here’s how I got to that.
Only two people said to keep the title with the twins in it. One admitted her bias. “I’m a twin,” she said. Then there were nine others who were convinced it was a boomer book and said the title should say so. A whole lot of my friends refused to be confined to my options. Their theme was, “A Caregiving Journey to the Edge of Life.” They insisted it would be so much more inclusive to all different kinds of caregivers there are out there. I was almost persuaded. But there was a problem.
This is a book about unpaid family caregivers, not the ones who take home a pay check for their effort. There on Fiona’s cover were Judi and Janet, dressed the same red shirts as we loved to do all our lives as twins, looking at our dwindling parents, and clutching each other’s hand. Would some browsers think that we were the cleaners or the care aides at Acme Nursing Home in our red scrubs? Scratch that otherwise perfect idea.
Twenty two of my friends were sure that the daughter identity needed to be in the title. “It depends on your point of view,” my writer friend advised. “Are you writing as a daughter? If so, it is a no brainer.” She added that boomers are so full of themselves anyway that I didn’t need to add to that. And a young friend who just celebrated her 25th birthday on Facebook couldn’t agree more to kick the boomers out. That would cut her out of the caregiver tribe just by being a millennial. “And I expect to be caregiving for my mom eventually,” she added.
So there it is. Of course I’m a twin. And there’s no doubt I’m a boomer. But I lived the decade as a daughter and picked up my pen to write in that voice. So daughter it is.
I’ve not thought before of turning to my social media for help. But I’m glad I did. My Facebook friends are a pretty amazing bunch. And I hope many of them will be my readers too. They’ll know they had a part in the book.
The Dwindling: A Daughter’s Caregiving Journey to the Edge of Life is being released before the end of April. I can’t wait to start taking it to my readers and starting conversations about what quality looks like in end of life care. Caregivers sure know! And that’s a topic that concerns us all.
PS. Thanks, Samantha Bolen!
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.
John Hilmer cracked my stereotype. I believed that we women had the lock on that brand of empathy that turns a person steeped in their own life into a tender caregiver, usually on a dime!
Then I met John.
He tapped me on my rigid shoulder and proved I needed a serious rethink. So I'm grateful that my first formal chat about caregiving in my 100 conversation challenge was with a man.
John and I met over chilaquiles and excellent lattes decorated with hearts, in a sunny Mexican cafe. We started out as strangers, in our post caregiver lives that couldn't be more different, yet knowing that we were both in a community of practice called caregivers. Any distance evapourated like the morning mist when we began to talk about that.
"How are you doing, now that it's over?"
John admitted he was still grieving the loss of his mother. We sipped in a silence and brooded. Um hum, Juan made the best coffee in San Miguel. And how about that wall of bougainvillea blazing pink? I twisted my napkin around my finger. "Me too." I said, surprising myself. "I think about both my parents every day." And then we were off. His memory triggered one in me, and something I said got him going on a different track of grief transformed into tenderness and laughter and creative expression.
"How did you become the family caregiver?"
As in my family, John’s knew that some grown child needed to be present in a day-to-day way because of his mother’s growing frailty. But which child? John acknowledged it was subtle and that each of his three siblings took on different roles than the one requiring physical presence. But he also knew that the job was his. He was an artist after all, and could work anywhere, including in his Mom’s home. He was a free agent. His relationship with his mother was already established as tender and deeply loving. So John moved in. He didn't know what he would face. He didn't know how long he would face it. He had no idea how big his commitment would grow. In my family, my twin Judi was the obvious choice to take over the care of Mom and Dad as they neared the edge of their lives. She lived in the same city as they did, after all, and she worked from home. Didn't that make her "available?" It was a no brainer to me that Judi needed help. In our twin team, I became daughter at a distance, supporting her role as daughter on deck. We called our pact the Parent Project and it went on for a decade, growing in intensity with every passing year. I was always a willing ear, letting her vent or sob or feel like a saviour. We strategized our way through every challenge. More and more, I was Judi's respite. Eventually it was hard for me to say where I really lived, my home with my husband on the Coast or in Calgary. So that jolt of joy with John was realizing we shared that stellar moment in both our lives called, “yes”.
"Did your Mom have visions?"
I was startled at first. What a strange question! But in no time we were laughing as we swapped vignettes of shrivelling bodies containing swelling imaginations. Our straight-laced parents both let their fantasies loose. John had a wonderful way to characterize it. "She was following her songline", he said.
John impressed me with his heartfelt gratitude to be his mother's witness and companion through all of this. I talked about how my mother was sure that lovers scaled the 17 stories to her bedside most nights, and narcos were hunting her in the shadows of her hall, and so many ghouls danced on the ceiling. It took me a long time to shed anxiety about my mother's suffering and begin to see her strange consciousness in another way than "crazy." As she sank deeper into her own world that was not conscious awareness, I saw her on a different kind of journey. There was no day or night, no sense of time or place, no recognition most days, and the biggest gift, there was no more pain. I rejoiced in that.
"And what about the shadow? "
John admitted that his family was both a strong support, and also brought him stress. “We all had our roles and also our opinions." Dealing with conflict was simply part of what he called ‘Mom’s Care Parade'. He wondered if I had dealt with family tension. Not so much, I said. But I told him about one sad conflict. Should we twins keep feeding Mom the puree that was her nutrition when she became paralyzed, unable to swallow? Did Mom appreciate being fed when she could no longer manage on her own? Or were we twins just being cruel? One line of reasoning in the family was that our mother just wanted to let herself fade away. But who knew? That led John and me to dally for a minute or two with the real cultural challenge, physician assisted death. But this was not that kind of conversation. So John changed the subject. “I’ve written some poems,” he said. “Do you want to hear them?”
"Has your grief made you more creative? "
John’s emotions about death and dying and his mother's love infused his poetry. Her breakfast prayer moved me deeply. “Please show us your way”, she would pray… “Help us make some sense—make some good!—out of all these strange things. Amen.” That was the hope that kept Judi and me faithful to our parent project. John called it, “the raw and real experience of caregiving.” I told him about my memoir. He told me about his painting. We had responded in art to what John called “the outrageous gift of being part of the process.”
"How do you remember?"
Both our feelings have mellowed now though for both of us caregiving remains our happy haunting. Both of us hold our parent's memory in metaphors. His is light. When it dances off his canvasses and through the natural world, he feels the warm presence of his mother, and says, "hi, Mom." Mine is far more earthly. My dad loved slopping ketchup on everything. Now I can never see a bottle of Heinz without a gentle memory of him wafting through my soul. And then there was that common flower my mother loved. I’ve filled my garden with daisies.
My first conversation with caregivers convinced me that we are better people by sharing our stories of that special journey we have all taken to the edge of life.
John would welcome you to his website www.johnhillmer.com.
And I welcome you to my blog. Post your comments and please share. What questions do you want me to ask in my hundred conversations? What spells quality for you in end of life care?
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!