One of my favorite books, favorite insofar as its story is one that stayed with me long after I had turned the last page, is Love in the Time of Cholera by Gabriel Garcia Marquez. It is a sweeping saga of love and loss, colored by the age in which it unfolds. Environments shape how we experience life, each other, and ourselves.
In this current environment, we struggle with Covd-19, both the illness itself and its psycho-social impositions. Nowhere is this more evident in my life than in the relationship between my father and I.
My dad has advanced lewy body dementia. For those unfamiliar, it is a disease that ravages the mind and body, leaving its human host devoid of memory and mental faculties and unable to perform even the simplest act of self care. Dad has always been my hero, a pillar of his community and his family. I have always felt a kinship with him beyond the fact that we share a bloodline. The absolute last thing I ever want to do is abandon him in his hour of need. So I do what I can, 3000 miles away from the home I grew up in where Dad is slowly letting go.
There are still pangs of emotion…not quite shame, not quite regret, but the feelings that lurk in their shadow. My sister and her family are back at the family homestead taking on the lion’s share of caretaking. It is brutal and grotesque at times. It is draining on every level you can imagine. Yet here I sit in my comfortable Southern California ranch home, seemingly not burdened by the all encompassing task of helping a loved one complete their earth journey.
I sometimes wonder what will happen if Dad passes during the pandemic; will I travel by plane with my young children to attend the funeral? Will I elect to see him, alone, in the small window after a doctor says it’s time? Not being able to safely and routinely visit with him the past six months has been difficult. Then a lightbulb flashes and I get it: I am the keeper of Dad’s identity. That is -my- new identity in the time of Covid.
Sitting in his recliner, hooked up to tubes, his needs being serviced by his wife and daughter and son-in-law, I imagine the identity Dad carried for 76 years has flown away from him like a puff of dandelion seeds blown into the sky. Elusive, but still within view. When I call to chat, it’s not after spoon feeding him or helping him through a night terror at 1am….it is, for both of us, like picking a piece of dandelion off the wind and holding it for a precious moment.
My identity, in the context of the father-daughter relationship, is to be the person who lets Dad be himself, without his own shame, without the knowledge that I may see him suddenly as less than. We talk of old times and new; my children, our plans, my work, treading lightly through politics, laughing because we can. Dad doesn’t have to be anything other than my respected hero, and I don’t have to be anything other than his loving daughter – and in this way, our souls complete perhaps their last agreement this go-round. I cannot see my father in person right now, but that might be just the thing he needs. As hard as that sounds given the bond between us, that might be what is keeping part of his spirit still alive.
It has not been easy living with new rules and restraint, but one thing I now know is that in order not to lose ourselves in Covid’s web we must learn to cope and carry on with new identities. Identity forged by a combination of fear, love, and intellect. Identity that recognizes we will be forever changed by the time we are living through, but we can still hold fast to our truths, figuring out how to express that truth, that love, in a new and perhaps more needed way.
When this is all over, I can be found doing bodywork in Topanga Canyon, helping all those who find their way to my table reconnect with themselves. Reconnect, and carry on.
#caregivers #adultchildrenofparentswithdementia #covidselfcare #emotionalhealing