Today I reached max capacity. After over three months of my Dad being in some or other sort of medical crisis, I wept on the kitchen floor, no longer able to hold it in, as my two sons played and laughed right beside me, looking at me like I was some sort of zoo exhibit, uncertain what to do with Mom losing her cool. Poor kiddos.
The doing and the busywork of caregiving was no longer enough to keep the feelings at bay. I knew they would come out eventually and today was that day. What finally got to me was seeing my Dad work so hard to get out of bed — really focusing and using every bit of muscle and reserve in him just to stand up and get out of bed, and in the midst of that, having a CNA, just going about her business, trying to remove his IV while he was in the middle of this struggle.
I wanted to jump across the bed and throttle that girl. I didn’t, but I wanted to. Instead, I took a deep breath and calmly asked the CNA if she could wait a few minutes so my Dad could focus on his much needed therapy. If I could see that he needed to focus and that too much stimulation from too many directions might be just enough to send him back to bed, why couldn’t she?
On the drive home, I was a mess. My nine years as a social worker in a retirement community came splashing back to me. Specifically, the monthly caregiver support groups I facilitated. God. How very little I knew then. I would sit at a table with eight to twelve caregivers, typically spouses or adult children, of someone living in our nursing home section.
They had so many complaints, these caregivers.
I remember the push-pull of wanting to address their service complaints, but also encouraging them to cope with the emotional impact of caring for someone they love, seeing someone they love weaken and diminish despite their best efforts. Pffft. My guess is they might have wanted to jump across the table and throttle me. If I could reach back in time, I would throttle myself.
The truth is, sometimes care sucks.
Sometimes a hospital is going to sit on test results for twelve days, while your Dad worsens each of those days, losing the ability to walk and talk before they act. Sometimes (this has happened twice in two months now), a med tech will shave off your father’s moustache and goatee without his permission, so that he doesn’t recognize himself the next time he looks in the mirror. Sometimes a nurse will ask why your father doesn’t go to karaoke just days after losing his home, identity, and independence.
It’s enough to make you want to scream. And if it’s hard for me, I truly cannot begin to imagine how much this hurts my father. My lion of a father, my force of nature dad, is becoming invisible. It’s as if the great eraser in the sky has started the work of removing him, bit by bit.
The hardest part — the thing that had me reeling on the kitchen floor this afternoon — was knowing how aware my Dad is of his decline. He feels his growing invisibility, he knows it is happening, and he believes there is nothing he can do to stop it.
My Dad is not invisible. I see him so clearly. I wish everyone did.
Mary Tyler Mom 