After reading Uncertain Inheritance, An: Writers on Caring for Family
it’s clear there are a few things we should probably all have lined up, just in case, to make it easier to deal with serious illness:
1. Lots of money.
2. Lots of competent, loving family members and/or friends.
The recently published book, edited by Nell Casey, is a collection of beautifully written essays on a not-so-pretty subject. Writers talk about all sorts of scenarios of caring for the ill – caring for sick parents or partners or siblings or children, or being cared for themselves.
Oh yes, of course I went through the boxes of tissues reading this one. The pieces make a strong emotional connection; which ones strike you most might depend on your circumstances or imagination. I had to read Ann Hood’s essay about her daughter’s death through squinched-up eyes. Susan Lehman’s piece about her mother’s sickness and death, and what it meant for her kids, allowed for a welcome surfacing for air with its, yes, at times humorous, tone.
The writers convey the emotional chaos that hits when people are sick, and there’s not a lot we can do about it. We are mortal and sickness strikes our bodies; number three on that list just isn’t happening any time soon.
So what about the money and supportive loved ones? Well line them up. Or hope that your loved ones have their resources in place. Because what’s noticeable in many of the stories is the importance of arranging the details – the heavy dailyness of life when you’re caring for someone sick, much like caring for an infant, although with a completely different emotional overlay. Food and sleep and going out and using the bathroom, and the very confusing details of medicine and treatment, all need to be thought out and taken into account every day.
This is tough even if you have a lot of what are currently considered the best resources, of insurance and money; but if they’re lacking at all, caring for the sick person sounds an even more overwhelming task. Caregivers get depressed and poor and sick themselves, and it’s no wonder.
Obviously there should be a better way. Sickness shouldn’t be a path to bankruptcy, nor should money or luck dictate the level of humane and appropriate caring you receive when you’re sick. Even with decent insurance for the sick person, it seems as if caretakers have to step in as patient advocates and organizers of the different services – finding home care, for example, or making sure medicines don’t conflict or just making sure the sick person gets what medical attention is needed.
It’s the same problem as with caring for a child; our current system relies on a mythical, anachronistic view – there’s a big happy family living all together, with mom in the kitchen running the home front all day. Sure there are day care and after-school programs, but are they affordable and any good? And does it make life easier or are you constantly cobbling together a solution? With illness, there’s help – chores and caring – the sick person needs beyond what the medical system is generally set up to provide; if the person is lucky a relative or friend steps in. But really, mom’s out at work these days, just like dad, so who can take care of grandma, especially when she lives on the other side of the country? Getting everyone covered access to health care is just a first step. We also need to support the family caretaker who fills in the gaps in what a sick person needs, or create an ideal system with well-trained professionals to cover those needs.
The book though, is about individual’s personal stories, not the system overall. The writers are sharing their thoughts and feelings about what it’s like to help family through a sickness – insights that are shared relatively little in writing compared with the degree to which many of us go through the same thing, as helper or helped.