Culture of Respect vs. Culture of Burden
It is final presentation time in the Communications in Health Care class I teach. Throughout the 14 weeks, students complete parts of the project: Interview two people in their sphere about experiences seeking health care. Do simple qualitative analysis – reading data for two or three themes and helping peers do the same. Write an outline, paper draft, complete a peer review and then a final paper, and make a 15-minute presentation with five minutes of discussion.
One student interviewed an adult daughter and elderly parent in which the daughter served as translator and caregiver for her father. The student spoke about the culture of respect – the daughter so happy to care for her father’s aging and health needs, so grateful for all he had done for her, not at all burdened except for the hassles of working with the clinic to get paperwork completed.
The student’s case raised two personal issues for me: the brokenness and administrative burdened of our health care system and how I am a product of my culture with my own mother.
This summer, my mother approaches two years of living with a stroke that left her paralyzed on the left side, incontinent, and increasingly confused. At times she is lucid, but more often she is wondering when she can go home, worried about my father in the garage or basement, and most recently at a wedding worried about making the cake. Dad died 6+ years ago.
My sisters and I continually question the reason and purpose of her desire to live. Some primal life preservation instinct seems to have kicked in. We have all had this conversation multiple times: “We will miss you, but we hate to see you suffer like this, please go and join Dad.” Her usual response to us is that she is not ready. But she can’t articulate what more she needs to do.
She would have detested this existence in her more coherent days.
My dad saved well, and she is well cared for nursing wise in a nursing home, and staff remark on her lovely smile. She is on hospice, so we can and do refuse to treat infections or further investigations like xrays or blood work, and have stopped all medications that are not related to comfort. We all spend time with her trying to be present, find some joy to give her. One sister curls her hair and looks at catalogues, another helps her Facetime with her 60-year-old Down Syndrome daughter. Another rolled her in her wheelchair over to the restaurant on the campus one sunny afternoon for lunch. I spent Thanksgiving week and Christmas week, decorated her room and rolled her to Mass. For most of us it feels more duty, more burden, than joyful.
When my horse could no longer walk because of a neurological disease and my dog became painfully arthritic, I willingly but sadly, put them down. At this point that is not an option for my mother.
How will we as a culture deal with the expense, burden, and ethics of our aging population?
I never want to live like this. I ask myself what is the purpose? Who am I without my mind?
Raised with two younger Down Syndrome siblings I certainly understand the value of not having a brilliant mind. I appreciate their innocence, unconditional love, and unbridled joy at the simplest things. This is easier as an adult than as child, since as the oldest, I was busy helping out and often resented it. In the evenings when I FaceTime my sister Fran and ask her about her day, she says with a lilt in her husky voice, “It was wonderful.” And tells me about her routine of reading, art, exercises – the same routine day after day in the adult activity center.
I do appreciate the elderly and learned the gifts of three-generation households, as my family lived with my grandfather. I often think of him fondly as I garden and smile at my frustrations, at times, with his brain-teaser puzzles.
As I inch toward the final years of my 6th decade, I am well aware of the ageism in the US. I can feel some medical students judge my contribution to a conversation by my gray hair. I listen to the discussions about Biden’s presidential reelection bid
Alas, I have no answers here. There are no easy answers. As a culture we will continue to struggle and muddle forward.