It wasn’t until I was on the phone with my Dad’s chosen hospice provider that I realized that I was a “care partner”. Fifteen months after diagnosis and it never occurred to me that this was my role. Only when I described myself as “his daughter calling to provide background to inform their first visit” did they enlighten me; “You’re his family care partner.”
My unspoken response was “No!”
My reaction was so visceral because my father didn’t need “caregiving”, he was physically and mentally independent; to look at him you would never know he was ill, much less dying. He wasn’t that old man hunched over in a wheelchair with a blanket covering his legs. I wasn’t that gray-pallor middle-aged woman so overwhelmed with sorrow pushing him toward the end.
Neither were we that smiling family taking a rest from our stroll in the park. Seated on a spotless bench under a light-filtered canopy of trees. My children playing in the background and the joy of the moment so overwhelming, prompting me to rest my hand on Dad’s shoulder; ‘thank God we’d found this perfect state of grace to enjoy in Dad’s last days.’
In all the months that passed since receiving my Dad’s diagnosis not once had I been referred to as a care partner or seen myself in that role. With certainty, I would not have self-identified as one because I never saw myself in the imagery used in all the caregiving, estate planning, and end-of-life materials. Unless you are living with your loved one, I would suspect that you don’t readily self-identify as their care partner, either.
If you care, you are a care partner.
It does not matter if you are giving that care from another continent or under the same roof. It is not important if your loved one continues to live independently or if they are in a facility that addresses all their needs for them. There are no “duties” or responsibilities that you have to assume to qualify as a care partner. If you care, you are a care partner.
As a care partner, I assure you that no additional responsibility will be forced on you. By considering yourself a care partner you are not automatically signing up for that role of the sorrow-filled, wheelchair pusher or the family pillar who smiles through their pain, spreading joy to the end.
Still, it’s important to try on the role. It can bring with it added support. More resources may be available to you through your employee benefits program or the health system caring for your loved one, should you desire it. It may also give you the permission you might need to step more confidently into caregiving and to seek out resources.
The Caregiven app focuses our support on family care partners whether they self-identify with that role or are simply caring for someone. We know that by empowering you, you are better able to provide the quality of care you wish to give to your loved one.
Research has found, as Dr. Atul Gawande reports in his book Being Mortal, that the involvement of family care partners, particularly in discussing end-of-life wishes and care resulted in care recipients who “suffered less, were physically more capable, and were better able, for a longer period, to interact with others.”
He substantiated this by referencing a 2010 Massachusetts General Hospital study which found that patients who engaged in palliative care experienced less suffering at the end of their lives and lived 25% longer. Dr. Gawande wrote that these engaged family care partners:
“were markedly less likely to experience persistent major depression,” and that “…people who had substantive discussions…about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”
In hindsight, I might have had better results finding the support and guidance I longed for when caring for my Dad had I self-identified as a care partner.
If you care, you are a care partner. This statement applies to others, as well, which becomes important as you build a caring team.
We're in this together...