24-Death panels part 3

Death panels, advanced directives, a dream, and a miracle

by Jaxon Cohen

Part 3: Begin a Caregiver

Care-giving is difficult for many reasons but being the sole caregiver for a family member is infinitely more challenging. The boundaries present in a professional setting do not exist at home. Old arguments, resentments, positions, idiosyncrasies, and issues of every kind bubble up from time to time, making it all but impossible to maintain the cooperation necessary to safely and effectively perform the many mundane tasks necessary to make it through the day. All relationships have unique stresses but as a caregiver, you can't simply walk away and deal with that person the next day or even the next hour, especially when you have no structural support, no one to take over for even a second. The concept of convenience is tossed out the window.

A choice presents itself: neglect your duties and essentially torture them by leaving them alone, wallowing in their filth and physical weakness, or suppress your ego and ignore your self-righteous indignation in order to do what it takes to do what is right by them. There is nothing quite like the paradox of lovingly preparing your father for bed while suffering the hot pain of hurtful words and dull anger of dealing with absolutes. I eventually accepted the fact that there are times I will never get my point across. Humility and endurance become a single teacher.

The best a caregiver can do is constantly asses and react to the subtle changes in the deterioration of their ward. Then put those observations into perspective and prioritize. Taking things too seriously creates as many obstacles as letting things slide too easily. As one ages, the complexities and dexterity of youth are increasingly replaced by those core attributes and memories from development (childhood) the way a tree's dynamic, fluttering leaves turn color and fall away in autumn, exposing the underlying rigidity of winter branches. The more delicate, complex neuro-architecture of a healthy adult brain dissolves and the mind reverts to a basic configuration.

For example, my father grew up in the Great Depression and was scarred by the experience. In his last years, I would find uneaten food, wrapped in napkins and squirreled away in his pant's pockets. He couldn't explain why he did it and would often not remember doing it. I eventually saw this as ancient muscle memory reemerging – no different than the unconscious act of securing your car-keys when you exit the vehicle.

In the fifteen years I cared for him, not once did he ever thank me for any single act of care. We often said we loved each other and a warm hug or kiss on the cheek was commonplace. It wasn't until the last years of his life I even realized this. I didn't feel he wasn't thankful for my efforts but he never actually said the words. There were, however, a number of professionals who recounted his glowing review of me as a caregiver. In their eyes, we were that 'adorable couple.' So, I was perplexed. Why was this fact so stark, so absolute?

I had an idea. The reason he'd never said 'thank you' was simple: in his position, where do you start and how do you ever stop? If he'd thanked me every time for everything, he would rarely say anything else. Then, consider the overwhelming totality of the sacrifices all caregivers make. Consider how he processed this. He's in a constant deficit of 'thank you's,' while at the same time he's becoming a child in reverse, except that he's conscious of this degrading, embarrassing reality as it unfolds without recourse. In light of his fatal handicap (age), how could I expect him to have the space to step back, accurately assess the stark truths of his situation, and simply thank me everyday for every little thing I ever did? Sounds complicated. Seems impossible. My answer was clear: why didn't he thank me, because he was human.

When I shared this with him, he agreed with me and then promptly thanked me for everything. Of course, he still never thanked me for anything specific. But you know, I always hoped that conversation had a lot to do with making him feeling less guilty for this simply reality. And now, I cherish the way he did thank me. As I said, my father went on and on about every little thing I did for him, only through the ears, hearts, and minds of others.

Being a caregiver means you have to be willing to reconfigure the norms of life in order to create a set of expectations that fit reality. Sometimes you have to accept the fact that you have to be the adult in the room, even when the only other person in that room is your father, the man who embodies the very concept of maturity and rationality. Whether ready or not, the caregiver makes tough choices everyday that are the difference between life and death because that is the nature of the calling: give care so another might continue.