i just read a very poignant story in the latest issue of the atlantic – letting go of my father, by jonathan rauch. rauch’s father was a sometimes stubborn man, a graduate of yale law school, and fiercely independent. he had parkinson’s disease, and moved from phoenix to washington, dc, to be nearer to his son. rauch writes that when he and his partner got to phoenix to pick him up, they were stunned at what they found. rauch’s father’s shaky hands made dealing with silverware or a writing with pen frustrating at best, he had trouble dressing himself; he was a man in a much more weakened state than they had expected. they managed to get him to washington, and installed him in an apartment.
this story – how a son becomes a not unwilling, but uncomfortable, caregiver to a parent who found it increasingly difficult to live alone – struck a very deep chord in me. while multiple sclerosis and parkinson’s are different diseases, they share at least a few aspects in common, not the least of which is the inevitable decline in the ability to do certain simple tasks. they both often end with the person afflicted becoming more and more dependant on the everyday assistance of others.
like rauch’s father, i have always placed a very high value on independence. i have told my wife, with tongue firmly in cheek, that when i can no longer wipe my own butt, it’s time to take me out behind the barn, and…you know. personal care, for me, is a standard against which i measure my independence. thankfully, i have not reached that stage yet, (and even more thankfully we don’t have a barn) but ms has forced me to give up a few big hunks of my independence. i no longer drive, which has a huge impact in my ability to pursue photography, which has been a part of life since i was a boy. while my wife tells me she is ready and willing to drive me places to do photography, it has always been a very personal activity, and i don’t know how, or even if, i could adapt my practice to include dependence on another person. i am at the moment relegated to a small, make-shift basement studio, and, if it ever dries out and warms up around here, the environment right around my house.
rauch ends by discovering his need to tell people about the trials and tribulations of caring for his father. and, perhaps more revealing, discovering how many people he encountered who had the same need. he wonders how many middle aged people are out there, desperately trying to keep the same boat afloat.
where i ended up was wondering how it would be for me, if my disease progresses to the point where i was no longer able to take care of myself. if it is not yet, at some point driving me around, doing all the housework, and managing the family finances will wear thin for my wife. rauch’s father tells his son, “i’m sorry for what you must be going through.” i try not to feel guilty for imposing on my wife as much as i do, or for telling friends that if they want to have dinner or go to a movie with me, they have to pick me and my wheelchair up, or for fading out so early in the evening at social gatherings. but it is difficult at best, and not something that seems to get talked about much. while i know it’s not my fault i have ms, i still have trouble with the notion that “trying harder,” will not significantly improve my symptoms. i try not to feel guilty when my wife is buzzing around the house, spending her weekend vacuuming and doing laundry, while i rest in a comfy chair and read.
being thrust into the role of caregiver cannot be an easy thing, and carries it own baggage. it is equally as difficult to be the one needing the care, and, for me, having to depend on someone else and to ask for help borders on humiliation. in the end, diseases like parkinson’s and multiple sclerosis bring with them issues that don’t show up on an mri. rauch likens them to what betty friedan called, “the problem that has no name,” and laments that there is not more institutionalized awareness of that problem. but what we need, he says, is for “our nameless problem to be plucked out of the realm of the personal and brought into full public view,where help can find us.”