Both the giving and receiving ends of care can sometimes feel like a burden, but these experiences can also be a source of great inspiration and important life lessons.
They had been married for 60 years. Nearly seven times the average life expectancy of a marriage by today’s standards. And now she lay dying in a hospital bed.
She didn’t want to go home. “I don’t want to be a burden,” she said, glancing over at her partner.
With this, her husband broke down and wept. All he wanted was for her to make it back home, even if it was just for a few days. He grabbed her hands in his, both sets wrinkled and crooked with arthritis.
Through gasps and sobs, like a mantra, he repeated:
“Love is no burden. Love is no burden. Love is no burden.”
He was desperate. Desperate to change her mind. Desperate to save her. If love could save her, it would have.
Burden – A Heavy Load
Becoming a “burden” is a common fear for people nearing the end of their lives.
We tend to equate a loss of independence with a loss of value and dignity. There’s a worry that our reliance on others will foster resentment in those left to care for us.
In fact, these are such concerns that “perceived burden on family, friends or caregivers” is listed on Canada’s Medical Assistance in Dying (MAiD) assessment record as a common source of intolerable suffering. In other words, the fear of becoming a burden is a reason people choose to end their lives prematurely.
The State of Caregiving
In case you haven’t heard, the mortality rate for being human is 100%. Most of us will die from chronic disease or cancer. We will experience extreme fatigue and weakness near the end of our lives. We will become dependent on others to meet even our most basic needs.
Carrying ourselves to the toilet will become impossible. Showering alone, an insurmountable feat. Even feeding ourselves will be a challenge. Most of us will require intensive caregiving in our lives. Usually near the end of it.
If death is considered a great equalizer, then so too is caregiving.
According to a 2012 Statistics Canada survey, over 8 million Canadians provide care to seriously ill friends and family members. With nearly a quarter of the population projected to be over the age of 65 by the year 2031, the number of people acting as informal caregivers will only continue to rise.
The growing need for care will soon extend beyond the capacity of the already buckling healthcare system. It’s an issue that will call on the compassion and engagement of individuals and communities like never before.
Beauty in Caring
Dr. BJ Miller, a well-known palliative care physician out of San Francisco, said before in a talk that to receive care is not a debt incurred.
As he puts it, “it’s not tit-for-tat.” The receiver of the care does not owe something to the individual offering it.
As a caregiver you give, but you also get something back. You grow through the experience of caring for someone you love.
There’s something to be gained from the intimate experience of offering ourselves to support important people in our lives when they need it most.
That’s not to suggest caregiving is easy or entirely free of burden. This is especially true for the sector of the population sandwiched between growing children and aging parents. A group required to care for two generations. A group largely represented by women, who tend to receive little thanks for their hugely important, unpaid and undervalued work as informal caregivers.
I see you. I don’t pretend to know what your experience is like, but I’m sure I will one day… if I’m lucky.
If you’re on the burnt-out edge of caregiving you may find that last statement, “If I’m lucky,” strange. Perhaps even infuriating. You may be thinking, “What does this foolish woman mean? ‘if I’m lucky’… Clearly she doesn’t know how hard this job is.”
Let me explain.
I believe that important lessons lie in the complicated space between feeling overwhelming love and overwhelming fatigue.
Caregiving is hard work, but it’s worthwhile work. To simply see it as a burden fails to acknowledge the complexity of the job. It devalues the intricate layers of positive and negative emotions that, when woven together, create value and meaning in our lives.
Recently, my partner of 8 years asked me to marry him. He is a true love of mine. Sometimes, when I’m lying in bed next to him, I imagine the day that death do us part. I imagine what it would be like for his breath to be irregular and unreliable. For his eyes to sink. For his lips to chap. For his chest to be still. For his body to turn cold. I imagine the time leading up to that moment. The incontinence. The anorexia. The weakness. The fatigue. Our hands, crooked with arthritis (if we’re lucky), knotted together.
You’re probably thinking, “Holy shit, this turned dark real quick.”
Before you run away, consider that I witness stories like this every day in my work - Stories of loved ones gathered at the death beds of loved ones. Stories of husbands and wives and children offering their whole hearts, their full presence, their unconditional love, and with that, unconditional care.
Of course, contemplating my partner’s death breaks my heart. But it doesn’t take a doctor to know that broken things swell. While these thoughts may cause an aching in my chest, they also create a heavy fullness that reminds me of the love in my life.
To be cared for during serious illness means you’re in the beautiful position of being loved. To perceive yourself as a “burden” near the end of life is to be special enough to someone, that there’s an unspoken commitment to look after each other in vulnerable times.
This state of being cared for is not a guarantee in life.
A lot of people in this country die alone. Probably more than you think. People die without the privilege to ask for help from someone other than a paid stranger. They die without “their person,” be it spouse, sibling, child, friend or neighbour. They die without someone willing to show up and care, no questions asked, zero conditions.
So, when your time comes and you’re lying in a hospital bed, soon to turn cold, with chapped lips, unable to swallow, unable to toilet… Remember love.
When you’re surrounded by family who are missing work and finding babysitters and having sleepless nights on your account… Remember love.
When you’re feeling overwhelmed by all of the attention drawn to your inability… Remember love.
To receive care is not a debt incurred.
Love is no burden.
Until next time,
PS. Don’t forget! One day you will die.