Young Adult Children in the Caregiving Role
How much can we ask?
My sons were ages 16, 19, and 23 when their father was diagnosed with ALS.
This was the summer following the great Ice Bucket Challenge, so they had some idea of what the disease was. But their dad’s iteration was fast-moving, and every week brought change. I did a lot of research. And I kept a lot of my research — most of it, in fact — to myself.
But I knew that, no matter how much I protected them, they were about to go through the hardest time of their young lives. I would have to be there — aware and present — to support them, as well as see my spouse through. And I would need their help. But how much could I ask?
The work piece
Within weeks of diagnosis, their dad was slowing. Not in ways that affected the boys yet, but in ways that prepared them for what was to come.
By the time a few months had passed, my spouse had to stop teaching guitar. My father, brothers, and nephew built ramps as needed, and renovated the downstairs bathroom.
Bit by bit, the boys took on fetching things to save their dad steps. (With ALS, one should avoid getting tired — unlike some diseases and disorders for which exercise is a positive.) Helping navigate technology with increasingly awkward…