In 2008, my twin sister and I kidnapped our mother from her long term care centre (LTC). We’d been just barely coping with the place for months, but when she became palliative, things fell apart. We found the systems and staffing levels to be so inadequate that we felt taking her home to die, with all its challenges was a better option. “Kidnapping” was our twin tongue in cheek way of talking about that significant decision.
This week I got an opportunity to observe how another LTC manages palliative care. Has anything changed in almost a decade? I was a babysitting an infant while his mom was with her dying father. So for a week I walked the baby around the LTC between feedings, and observed it up close and personal Of course a sample of two is no more than an anecdote. Still, what is even more evident to me now is that the goal of “a good death” has a lot to do with luck.
James (not his real name) is dying in a facility that has both a LTC wing and a hospice. No one denied that James was at the very end of his life and he was receiving palliative care. But there is a rule in this province that there can be no transfers from an LTC setting to a hospice because, it is assumed, LTC’s can do the job of palliative care. Poor James, his wife and daughter too, had been bounced around the lower mainland in the month following his arrival in LTC, when home care was no longer feasible. When forms were being filled, his GP had deemed him not quite ready for palliative care, but things changed very fast for James at the end. But too few doctors have palliative care training to see the early signs of the end, and some simply don’t know what they don’t know. So James wound up as a new arrival in LTC, bottom of the senior seniority heap and in a double room as he stopped eating and drinking and began that long sleep leading to the end. No one thought this was ideal. But everyone felt disempowered to change the situation. There was a policy, that had been first delivered in guidelines perhaps, but quickly became rigid rules. It is a fact that patient centered care ideals struggle against resource limits. As my mother always said, “it is what it is.”
James does not appear to be suffering. He is in a semi coma. He gets regular anti nausea drugs to deal with his body’s reaction to shutting down. He has no apparent pain but if there is a change, doctors standing orders allow for whatever medication is needed to manage that or any other symptom. His daughter and his wife crowd in beside him in the tiny space he is allocated, trying to make the best of a difficult physical situation.
The sign on the hospice door warns everyone to keep their voices low. Palliative specialists know that people hovering at the end of life are bothered by noise. Fiercely protective of my infant charge, I advocate for this child and I to be allowed to use the hospice’s family room. The infant needs quiet to nap as much as his grandfather does. The best part of this room is its door that offers privacy. There is no such luxury for family visitors upstairs. Whether it is crying babies or discussions about the tender topic of the funeral, the only place upstairs is a lounge with a loud TV with people coming and going. I’m jealous on behalf of James when I peek into the hospice rooms. They are single rooms and spacious, and have tip-back lounge chairs that allow loved ones to grab a catnap during their long vigils.
Upstairs, the wife and daughter squirm in waiting room chairs by day, and by night James’s wife squeezes into a camp cot beside James’s bed. She brings a light from home. There is no place to shower or brush her teeth. Over several days, we are all worn down. I plead with the Director of Care for James to be transferred downstairs to the hospice. The answer is no. “The system is broken,” she says by way of explanation. Growling in my mind, I think, “but you are part of the system, lady!” but I say, “thank you anyway for your effort.”
As frustrated as I am, I also admit that this LTC is far superior to the one I encountered with my mother a decade ago. I note activities offered morning and afternoon, and know a recreation therapist must be on staff. Quality of life, not just preserving life, seems important here. In the eating area, residents can choose to be social or eat alone. The food looks fresh and smells good. The area stops smelling once meal time is over. There are no call bells clanging, clutters of diaper carts in the halls, or lingering smells ooze from the walls. It isn’t perfect though.
The LTC mixes the cognitively healthy with the residents whose brains are tangled and this creates challenges for everyone. Codes on doors and elevators make sure that no resident goes AWOL, and mug shots of the most insistent wanderers are hang in a line like Wanted Posters. But I like the purpose-built design of the facility, arranged in circles to that the bewildered can pace all day and never come to a wall. Yellow tapes across many doors are not meant to keep residents confined inside, as I first thought, but to ensure that wanderers do not stray into resident’s rooms uninvited.
For those near death though, there are serious deficits. James strains to hear his own soft music over the zumba beats pounding from the nearby common room as elders bend and stretch. The music is cranked up loud of course, along with every TV in the place, because everyone is assumed to be hard of hearing. In the afternoon, visitors crowd James’s room to hang out with his deaf roomie. They shout to be heard above each other and James becomes distressed. The aides shrug and wince. There is nothing they can do.
If the care team were trained to deliver palliative care, then perhaps the physical failings would feel less troublesome. But there seems to be a gap here. “It is in the care plan,” means an aide will still be obligated to haul James from his bed for a weekly shower, or shove puree into his mouth that stopped chewing or swallowing days before. There seems to be a critical disconnect that lasts too long. Pain meds are prescribed, but when James does indicate that he has pain, the nurse says that they must wait for half an hour to reassess before taking any action. “Just call if you need anything!” James’s daughter is told. But when James begins to gasp and she desperately calls for help, there is no response to the bell. Both mother and daughter feel like James has become low priority, and are afraid to leave even to get a cup of coffee.
Information is lacking. A pamphlet is offered but it has no answers to the questions that the daughter and wife now have. What is normal? How much longer? Are we doing the right thing? Staff who have no time to talk say, “We don’t know. We can’t predict.” I push the stroller through the rain to a cafe a mile away where there is wifi that allows me to google for answers not offered by LTC staff. Reassurance is the biggest need that family has, and it is a need not being met.
Dying is hard. Slow death is particularly difficult. James’s journey to the end took more than a week.There is anticipatory grief but also unnecessary suffering related to the clash between expectations of what palliative care should be like, and what actually happens in this LTC.
I conclude there is plenty of work to do to reach the goal of excellent palliative care, delivered anywhere. To make progress, I think, the gaps must be identified and acknowledged. It is not acceptable to conclude, like the Director of Care told me, “The system is broken,” or like my mother said, “it is what it is.”
As each of my sundowns walking the baby around facility approached, several residents with dementia began their especially tumultuous confusion. One screamed over and over, with growing desperation. “Police! Call the police. Someone call the police.” The staff and other residents ignored her. Obviously, she was making no sense.
But was she actually making even a little bit of sense? After all, calling for help from a higher authority when something needs attention is what people should do, even those with a tangled brain.
Maybe we all need to raise a ruckus.
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!
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
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