As a child I was taught that “sticks and stones may break my bones but words will never hurt me.” As an adult, I’ve learned that the reality of word choice or a role label can bring pain or comfort.
Over a year into my Dad’s illness, on a call with a potential hospice provider, after I introduced myself he asked if I was my Dad’s caregiver. My response was strong…my Dad was dying, not incapacitated! He certainly didn’t need a caregiver, nor would he accept being cared for. That was, after all, his worst fear.
In the four years since he died, I’ve come to recognize the power of the term’ caregiver’. This term evokes varied feelings and new roles and responsibilities. If you become a “caregiver” or a “care recipient” it shifts your personal identity and changes the dynamics of a family; all of this happens at a time when holding on to what you’ve known is so important.
My label was daughter, not caregiver. My care recipient’s name was Dad. My job was to listen to him, hear his wishes and fears, and work with him to achieve the end-of-life that he’d imagined. There was no giving or taking. There was a collaboration, a partnership based on trust.
Isn’t that fundamentally what caregivers are trying to achieve for their loved-one? To be their eyes and ears, strength and judgement when their body or mind fails them? To be the trusted person who says “Mom has said she wants…” or, in my case ‘Dad, are you sure you want to continue these treatments?’
Of course, I wanted him to try continuing treatments that could possibly give me 3 more months with him. But he trusted me to advise him when his words weren’t in alignment with his wishes.
In this case, and many others throughout the last 18 months of his life I realized that he needed me to be his partner because I was the only one he trusted to do so. It is a role, a name, a label-care partner- that I treasure.
Care partners are different than caregivers. I think of caregivers as giving care to a child, too young to actively participate in decision making. Care partners manifest what’s needed for their loved-one who has communicated their own decisions or shared their wishes and values with regard to how they want to be cared for, when they are unable to do so as they used to.
When care partners give it’s not transactional as the name caregiver suggests. If I give you care, then you need to be taking what I give you. I’m not sure about your loved-ones, but my father would loathe to ask for help of any kind, but acutely so when it came to himself and his abilities to be the man that he’d been for over 60 years. He wouldn’t take my help, even if he knew it came from my heart. But he would accept my care if it was in alignment with how he wanted to be cared for
The nature of my Dad’s illness, neither affecting his brain or his physical abilities, meant that he needed no nursing-type care which I equated to caregiving. In fact, when that hospice professional labeled me “caregiver” I responded that I was ‘Most certainly not! He can cut his own food and toenails without anyone’s help!’ The label of caregiver continues to broadly suggest this type of assistance.
The reality is that giving care looks very different for every single person. There are those who have time to give, but can’t financially support a loved-one. There are others who have no time but can offer financial support. And there are a million versions in between.
A broader label to giving care, a nuanced name, is appropriate.
You are a care partner if you provide any type of physical, financial, social, or emotional support to an individual. Let’s go further to include those individuals who provide support for care partners and enable care partners by helping them adjust their lives and schedules to that they can be available to their loved-one.
When I think back to all those individuals who participated in my Dad’s care journey not one of us would have every said they were his caregiver. But I’m certain that my brother, his wife, my husband and our children, my Mom, Dad’s friends, Mom’s friends, my own friends…all of us would have felt welcomed as his care partner.
And my Dad…I know my Dad would have been alright with it. After all, he was an equal partner; and I suspect that had he known that others were open to hearing his wishes and fears and working alongside him to ensure he achieved the end-of-life that he wanted for himself, he would have felt more supported and more open.
It has taken me four years to better understand and accept my role caring for my Dad. When I think of the term care partner I instantly identify with it. It protects my identity as a daughter, reinforced my Dad’s right to participate in his own care, and didn’t shift our family dynamic.
Words can do so much more than sticks and stones, while they can hurt you, they can also help you grow and step confidently into a role that no one ever wants, but we become honored to fill.
Your beliefs become your thoughts,
Your thoughts become your words,
Your words become your actions,
Your actions become your habits,
Your habits become your values,
Your values become your destiny.”
― Mahatma Gandhi
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