I wonder if anyone is studying springtime caregiver burnout this year? I am. At least I’m mulling over two stories from caregivers I’ve heard recently. The same story.
“I’m just not able to manage any longer.” these caregivers tell me. Why, I wondered, would both be tearfully admitting they are at the edge of their tethers all of a sudden, when they’d been managing the care for years? It was a mystery.
It took me a while to deconstruct the events leading up to these caregiver collapse stories. But both offered the same key to the mystery. “Oh by the way” both said, “the personal care aides didn’t come as regularly as usual this winter.” Was there a connection between the support not showing up and the system unravelling?
On a West Coast known for its winter precipitation falling as rain…lots…all winter long…the winter of 2017 was different. Snow, not rain. Lots of snow and ice. Whereas in most families, the inconvenience of the weather events piling up meant forgoing the healthy walk for a day or two, or put off getting the groceries, or even a snow day for the kids, it was a different story for the caregivers. In their homes, a frail elderly person can’t just put life on hold. Family caregivers organize their day around the arrival of the home help to get the husband mom or dad out of bed, or into the bath or onto the toilet. This winter, far too often, the helpers desperately needed for the caregiver’s day to work, just didn’t show up.
“Roads are too icy. The staff didn’t come in today. Can you manage alone?”
“Tut tut, all that snow. Streets are not plowed. Can you manage alone?”
“Storm coming. Staff is being sent home early. We’re short handed. Can you manage alone?”
Caregivers just don’t like to create a fuss. There are reasons for that I think. One is that their self regard has been so ossified by years of their needs being second fiddle to the needs of the cared for “loved one,” that they just don’t have the insight into how dragged down they are feeling. Guilt plays a role too. Most caregivers just can’t bear the thought of not living up to the expectations all around them. But the biggest reason, I think, is fear. Making a stink about anything is risky in the caregiver’s world view. Being demanding can lead to a reputation no caregiver wants to have.
“That one is difficult to please.”
“She’s a complainer.”
“What a whiner that one!.”
Those all-important health authority staff are so powerful in the isolated and dependant world of the caregiver. If a frustrated caregiver ruffles feathers, it’s easy for the powers that be to just hold back the help that a little stretching would deliver. Or simply revert to the harsher side of the rules about who gets what. The way my mother put it was, “you catch more flies with honey,” but the opposite is true. If caregivers make too much of a stink, the flies fly.
Both of the caregivers admitted that they didn’t make a fuss when home help didn’t arrive. They cut the system slack. They said they could manage alone. They thought they were up to managing without help. They had to manage.
Mary’s back went out after 16 years of coping with one proviso, she would not lift her heavy husband. The daily routine revolved around the arrival of the hefty male care aide. Lyn’s 7 years of successfully managing a demented and sometimes aggressive husband has unravelled now, she thinks. Though still physically able, her quivering lip and glistening eyes as say it all.
These stories make me gnash my teeth. Would the fireman call in sick or say he couldn’t make it because it was snowing? Would the policeman say tough luck, the squad cars couldn’t manage on the ice? How about the ambulance paramedics? No. These fine folks would find a way to get to where they were needed. And why? Does it have to do with the pay grade? Or is it also the esprit de corps of the first responder, an assumption that they will find a way to get the job done. And home care workers? Why would they do the difficult job of getting to the job in the foul weather. It’s not in their pay scale to struggle this way. I get that. Most home care workers take home about the same money as the guy who cleans the swimming pool or cuts the grass.
These are just two stories. There is no conclusion to be drawn. There’s not even a trend to be found. But if we can suspect that all that snow this winter might have been climate change coming, something out of our control, can we also admit that changing the climate around caregivers, never taking them for granted or trivializing the challenge of their work, is something within our span of control?
We Canadians got some awful news this week. Or was it good news? No one is quite sure yet. The news comes from Statistics Canada, (our favourite institution for counting us that was darn near torpedoed by that cheapskate Prime Minister, Stephen Harper a few years ago. It told us that in 2016 we had more folks in that category that teens call “the greys” than those teens in the age category 14 and under. Yes, our country has tipped the balance from its self image of “young and vibrant…” to “old and wise…”
Yup. It’s true. The ranks of seniors grew 20 percent in just five years. In numbers I can get my head around, that’s 1000 new senior citizens a day starting to collect their pension, and able to put their feet up. Thats in comparison to the growth in the number of working people wishing they could head for their hammocks. That's a measly 5.4%. Of course at 65, a horde of Canadians start zipping around the world to find themselves in the third age. Most are on cruise ships now or in protected tour groups, not hitting the hostels in Hamburg, or wherever our newly adult noses pointed us way back when. What is the fastest growing demographic? Canadians needing lots of help to hold them up while they blow out 100 candles.
When I lose my comfortable dwindling plot in which I'm sure frail aging is for others but not me, I just have to look at my mother. As she lived her dream, working with Mother Teresa at about the same age I am now, she had no inkling of what lay just around the next bend of her journey. It wasn’t long after she put away her fanny pack and the secret wallet in her bra, that she started to dwindle. That's the thing. Dwindling happens whether we want it or not and before we know it.
Lucky Mom. She had her twins, who she called “Mommy’s little helpers” when we were seven and eventually, “nurse, nurse” as she pleaded for us to come to her aid at the brink. My identical twin Judi and I pinky swore that we would work together to keep both parents comfortable in their homes. And we did. For a decade in fact. Dad was less work. His tangled brain crushed his cognitive capacity, but he'd been smart. In his zoomer days he married a caregiver with privileges who was much younger, and knew the score.
With all that family caregiving, me as Daughter at a Distance but Judi on the front line as Daughter on Deck, we accepted that we had a part time gig that brought our family together and that was good. .Eventually though, it was a full time job for both of us and finally we couldn't handle it alone any more. I wrote a book about that, The Dwindling; A Daughter’s Caregiving Journey to the Edge of Life. But now, with this new data about greying Canada, I am starting to think of me.
I’m wondering who will take care of me as I swish down my slippery slope. An on-line life expectancy calculator assures me I’ll check out at 89, in 2038 to be precise, and that’s with even my generous admission of my red wine consumption. Mom died at 88. My youngest grandson will be turning 21 at my funeral. He might still be living at home. For sure, he’ll still be a big expense to his mom and dad. Of course, while he’s a toddler, preschooler, tween, and even insufferable teen, I’ll be there to read stories and explore Disneyland or help patch together a resume for his first job. But then the tables will turn, big time. The last thing my sandwich son’s marital dyad will need or be able to cope with will be me fading fast in their face. My husband, who hopes to be long gone, will be part of the problem too. The same widget as told me my fate says he’ll still be breathing at 88. My husband shudders at the thought.
Like it or not, my two grown kids will have to do something about me. Stick me in their basement? Get me in the line up for one of those Orwellian long term care centres that make me weep, advocating for me to win the lottery and score one within an hours drive and with a bathtub please? Careland is not a pretty place to visit in 2017, and the grey tsunami is still offshore.
Will I be able to take matters into my own hands without negating my life insurance or shaming my heirs? It’s my right now as a Canadians to seek Medical Assistance in Dying if I fit the still tight (so far) criteria. That will change and I will be facing a new duty, "Duty to die". That's why it is galling that It is still not my right to get palliative care. That’s the kind that doesn’t try to cure me any more but comforts me in every way medically possible, and makes sure my family gets support on their journey to my end and beyond. Sure, we’re better off than most in the world. Canada is 9th out of 40 mostly first world countries for its “quality of death”. We beat Uganda hands down. But the real deal palliative care that happens in a hospice? Well not a chance for 7 out of 10 of us who will just have to make do somehow and somewhere else when we dwindle.
Maybe our Minster of Health, Dr. Jane Phillpot is right. Let’s not panic, she says. We still have a few yards of runway to figure things out. But maybe it’s time for all of us to stop being squeamish about the fact of our coming dwindling and be active in forcing the change we want to see.
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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