Previously I’ve written about my own disconnection to the term caregiver. In addition to that label not accurately describing the type of care I was offering at any given moment in time, I was also reluctant to add yet another hat to the many I was already wearing.
Executive Director/Mom/Employee/Daughter/ Mentor/Wife/Volunteer/etc... etc...etc.
The reality is that the act of caregiving requires those involved to wear many different hats, leveraging different skill sets, and sometimes adopting different personas to facilitate communication.
The hat, skill set and persona associated with caregiving, from my perspective, is medical in nature. Navigating the health and medical system alongside a loved-one is only one element of caregiving.
It’s for this reason that I advocate for using the term care partner. 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 support and enable care partners by helping them adjust their lives and schedules so that they can be available to their loved-one.
But that’s a definition, what does it really mean? And surely one aspect of the definition is more valuable than another, right?
Physical care partners - may be that nurse-type persona, making sure medications are managed, meals are healthy, blankets are tucked in…or not. In my case, my Dad didn’t need any help managing himself physically, but he did need my help painting the barn. “I’m getting old” he’d say as a way of asking for help with something he’d easily been able to do in his pre-cancer days.
Being physically available to support a loved-one is sometimes all that an individual can offer, they have more time to give than other types of resources. Sometimes, by nature of their proximity to their care recipient, individuals find themselves offering more physical support than others in the Care Circle. Either way, for those who can not physically be an in-person care partner, those who can are a luxury.
Financial care partners - write checks and pay bills. They offer monetary support to offset the expenses associated with age or illness. Growing old and being unwell are expensive; a 2019 research study shows that “half of older Americans living on their own lacked the income needed to pay for their basic needs, as did 23 percent of couples. Taken together, we estimate that more than 10 million people aged 65 or older and living independently have incomes below the Elder Index. In short, it is a big problem.”
Financial care partners often have the uncomfortable role of talking to their loved-one about money (and whether there is enough of it), take over responsibility for the finances or find themselves trying to manage the providers and other support they’ve hired. No one can argue the pressure of this role but...no doubt…there can be resentment by those who are physical or emotional care partners that a financial care partner just isn’t the same.
Emotional care partners - are often overlooked or taken for granted if they don’t remain invisible. Perhaps that’s just my own personal remorse showing. I hadn’t recognized just how much emotional support my husband provided my children and I while I was focused on losing my Dad. Less than a month ago, while helping my Mom with her computer, I found my Dad’s email folder had messages in it, including one with this attachment:
I had no idea my husband had given this gift to my father...how could I not know? So when I write that care partners include those supporting care partners I do so with my hat in hand, humbled that I didn’t see this at the time
Within my care journey with my Dad, I was primarily an emotional care partner. My focus was on collecting the family stories, understanding the family tree, making sure that my Dad knew his life had meaning - that he was forgiven - and that he would be remembered. It was later that my brother pointed out that I was able to be this for my Dad because of the special relationship he and I had.
Because of this comment the Caregiven app encourages every care partner to have these conversations, and to record them along with the family stories in order to share them throughout the Care Circle so everyone can hear and reflect on them with their loved-one.
Social care partners - show up, they check-in, they send notes and ensure loved-ones continue to keep living, even when they may be dying. Social care partners might be a neighbor, a golf-buddy, a friend from the old days or even a hat you wear with the purpose of simply spending time with their loved-one. They are also adept at keeping the Care Circle and broader friends and family network updated.
This was one of my roles and where I truly saw the importance of the term partner. There were things my father wanted others to be aware of, and many things that he did not; I was able to be that voice for him. There were times when he wanted visitors and stretches where he just needed to be alone with his thoughts; I was able to be that gatekeeper, often without him knowing. Along those lines, I also took many of the things he shared with me during our conversations and used that information to better his end-of-life journey including calling his Hospice Nurse before her visit to let her know what to expect that day.
As those giving care know, you never truly know what to expect any given day, or what will be expected of you. But by separating out these different roles from the single label of caregiver I hope that I’ve answered, at least on some level, who a care partner is.
There is a need and a role for everyone in any care journey. Perhaps by separating out the opportunities we leave more room for others to come in; and find ourselves with fewer hats to wear.
We're in this together...