I’m lying in bed, it’s dark, and I hear my phone silently vibrating on the bedside dresser next to me. Adrenaline shoots through me as I grab it, quickly looking at the screen for a call, a text, anything to indicate a communication about my parents. It’s 3 AM and I see that it’s someone sending me a Facebook message. I must have inadvertently left the application open last night. I shut the screen off, take a few deep breaths and even though I’m relieved, I have a difficult time falling back to sleep. Eventually I doze and wake up at 7 AM, feeling a bit sleep deprived.
This is a typical experience for me. I have my phone with me all the time. If I’m going into a meeting, I make it clear that I am on “watch” and could receive a phone call at any time. These calls are my #1 priority and I put them before anything else I am doing, no matter how important it is. If I’m at lunch with a friend, the phone sits on the tabletop next to me so that I can hear if a call or message comes in. My community is used to it by now, I’m not so sure that I am.
My mother is currently in hospice, suffering from a debilitating dementia that has left her unable to communicate or do anything for herself. She lives in an assisted living facility on a floor dedicated to dementia care. My father lives in the same facility, on a different floor, suffering from a host of other age-related issues including a heart-breaking case of depression as he’s watched the love of his life slip away, barely able to recognize him.
A few months ago I wrote an article for Feminine Collective entitled Creating My Father’s Legacy about my experience of making a documentary about my father’s photography and his life. In that article, I described the process of working on this documentary while my parents went through their decline that eventually led them to move into assisted living. What I didn’t describe was the impact this decline has had on me.
I am basically their manager, interfacing between them and their caregivers, nurses and doctors, financial planner and others on pretty much every aspect of their lives. If they are running low on supplies I order them. If they get sick, I coordinate their care with doctors, hospitals, etc. If a bill needs to be paid, I’m the one that pays it. I also provide emotional support to my father, spending between 10 minutes to an hour on the phone with him at least once a day.
And I live 1600 miles away.
I fly out to Los Angeles every 6-8 weeks and those trips are spent doing the tasks I have been unable to accomplish from afar. I smile when people ask me how my vacation to LA was.
While in many ways I am very lucky to still have my parents with me, I am also aware that I am intensely grieving for two relationships I lost a very long time ago. When the balance shifted from being their daughter to being their caregiver, the emotional loss was huge. And over time, as they continue to decline, I seesaw back and forth between feeling blessed and feeling wiped out.
Our culture recognizes our grief when someone dies but there’s not a concrete paradigm for the ongoing grief of watching a parent age, seeing them lose their independence, their physical strength and eventually their mental capacities.
Part of my mother’s hospice program provides emotional support for her family. When speaking with the social worker recently, and sharing with her my complex feelings, her advice to me was “save yourself.”
This seems to be germane counsel. I often think back to the metaphor of what flight attendants say when preparing for a flight. “Please put your oxygen mask on first before assisting others.” I realize that if I don’t take care of myself, I will be useless to others. So I go to yoga, try to eat right and get plenty of rest. It’s hard to share with friends as I’m sure they tire of hearing about what I”m going through. I’m typically the person that gives the pep talk. I write articles like this that help me put my conflicting emotions into concrete logical thoughts that make sense to me. Sometimes it works. And sometimes, it doesn’t.
I think the one invaluable recommendation the social worker gave me was to not try to figure out how all this is going to end but to take small chunks of time and focus on that. She suggested I try to forecast and plan my parents’ future in three-month blocks of time. The anxiety of looking out over the next year, two or three can be overwhelming as I worry about every possible combination of events that could happen.
And for me, I try to take one day at a time.