“Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained?”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End
Among the pile of books on my bedside table, here in the guest room of my mother’s house, is Atul Gawande’s masterwork, Being Mortal. I recognize it as the copy my husband was reading when we came to visit her some years ago. At the time, Scott’s father was facing some health related issues, as were the parents of many of our friends. Gawande’s wise and compassionate book was much in the news, and Scott felt it necessary, if uncomfortable, reading.
My mother and step father were in their 80’s at that point, and although they appeared to be as alert and spry as ever, there were signs of future trouble: my mother was rapidly losing her eyesight due to macular degeneration, they were increasingly fretful and forgetful, driving with either of them at the wheel (especially in busy London) was getting riskier by the day. The cautions and advice we were reading about in “Being Mortal” seemed perilously apropos. We were keenly aware that both of them were on the precipice of what could be a steep decline, even though both of them refused to admit that anything was in any way different, or any change needed to be taken into account.
My step father died two years ago, his intestinal issues made unbearable partly due to the fact that my mother continued to cook their meals, even though she could not see, and each new meal brought with it the possibility of the house burning down and that the food was probably contaminated by poor hygiene and improper preparation. His death precipitated the need for a full time carer for my mother – someone to live in the house, and tend to her needs. The pretense of independence is gone.
Due to Covid and distance (I live a continent and a timezone away), my visits are infrequent, and each one carries the possibility that it will be the last. The care my mother now needs is substantial, she now needs assistance for every task. Still, she has the luxury of living in her own home, surrounded by a lifetime of things she has collected, arranged, and enjoyed. The scope of her day is limited to essential tasks, very restricted movement, and (it must be admitted) monotony. She cannot see to read or watch television; and advancing dementia has robbed her of remembering what was said or done five minutes ago.
Every once in a while there is a great flash of frustration, a raging against what she has become and a sorrow at all she’s lost. And, in those moments, difficult as they are, I see my mother again: independent, fiery, strong willed, and impatient. And, in a strange way, I am glad for that.
One thought on “A question of “independence”…”
“Still, she has the luxury of living in her own home, surrounded by a lifetime of things she has collected, arranged, and enjoyed. . . . Every once in a while there is a great flash of frustration, a raging against what she has become and a sorrow at all she’s lost.” That’s me, since my cerebral event a year ago, not called an actual stroke. I’ll take a look at Gawande’s book.