Young Adult Children in the Caregiving Role
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 fingers, cutting up food, turning on the electric blanket and making comfortable… They eased themselves into the roles and the duties, bit by bit. Seemingly small pieces grew.
They learned to be observant and anticipate needs. At first, I would find myself pointing out things that needed to be done, or how to do them, but I realized that — quite quickly — they were figuring it out. Out of care and love, they came to know.
And the flip-side of that, of course, was their need to meet needs with dignity. And in this, I learned from them! I watched how they were with their dad. There was the same light-handedness that I’ve often observed in men as fathers: caregiving is simply another job, not something to fuss over. And in that lack of “fuss” — that easier acceptance of this being just “the dailies” — there is a nonchalance that translates to creating a “norm” and, yes, dignity. I needed to witness that, and add to my way of moving through my day.
And then just weird
In the middle of the night, I remember, my youngest son was wakeful and up, and asked what needed to be done. I was “napping” in the bed alongside my spouse’s chair — he slept sitting up for comfort and ease. “Your dad needs morphine.” And as my son prepared the syringe for the feeding tube, he said, in wonder, “This is so weird, giving my dad morphine.” But at the time it felt quite normal and necessary.
Sometimes I so needed another set of hands, and in the last two weeks, when my spouse’s brain was no longer connected at all with his muscles, I needed help in lifting him on and off the toilet.
One night, in the middle of the night, he decided to move around in his giant medical chair, and he raised the thing so high that he actually slipped out. I had to call one of my sons to help me lift him up and put him back in.
But there were pieces I made certain to not include them. Showering and personal care was off the table. While I needed assistance with lifting, I did not want help with bathing, or bottom cleaning.
There were emotional moments that they did not need to be part of, too. Family hugs were good; talking about finances, not.
Of course, with hospital care, they would have seen a lot less. But both the misery and the silver-lining of ALS is that often the person living with it can stay home. It became a goal of our family to make this happen, and we all took part in it.
There are no hard-and-fast guidelines for this. As a parent, I was developing a sense of where the zigzagging line was for what was acceptable, and what was too much. And it is a zigzag.
My youngest son had been homeschooling for a number of years at that point; to return to school that year, in what would have been grade eleven, would have been very strange, and no doubt added more stress… although I could see that for any young person, school would shorten the hours at home. And that would not be a bad thing at all! As it was, others in our homeschool community frequently picked him up and took him to events, or he would meet up in their homes, and take a break — this was critical.
I made an effort not to ask him more than I asked of my other sons; I did not want to be asking simply because he was “there.” At times, I had to, yes, but I kept it to a minimum, to emergency-type moments.
It became a piece of my caregiving to be aware of who I was asking for help, how much, why… This, I factored in when reaching outside of the family for care, when I found a man to come into our home several times a week to shower their dad, for instance. This was critical, too.
My oldest son, at the time, bought a vintage Lexus, leather seats and all, and it was his decision to let his father drive it for the last while he could drive. “Dad’s never really owned a nice car,” he said. “This is it.” And so his dad took great pleasure in those weeks with it. (After years of being a musician needing to haul equipment, and then a dad-with-a-minivan.)
I was touched by the thought, and the sharing.
Making certain not to miss key sports games and highlights such as Canada’s annual hockey day, with a pro game played on outdoor ice — things I would have missed — they took care of. My youngest son often took care to put favorite music on, so calming.
And a little levity
This was where the boys shone. Each day I sought out some piece of humor, even if it meant resorting to potty humor (and when dealing with illness and the body, there can be many opportunities for such — I was quite happy to drag out my inner fourth grade boy — yes, we all have this! — and grasp every one of these moments!)
But the boys found moments to crack up their dad. This really went far to normalize — as much as possible.
As my spouse slowly pushed his walker across the floor, one of them would make sounds of squealing tires and screeching brakes… and the sounds never failed to bring a grin.
Now that he is gone, those are the moments we remember, and still find laughter.
And then one day…
After my spouse passed, months later I was driving down a main street in our town heading home, and a couple blocks away I saw the familiar red hair of my youngest son, walking home from his job at McDonald’s. As I neared, I could see that he was standing with an elderly person, helping the man with his walker to navigate the lumpy edge of sidewalk curb.
I could see in my son his patience and care with the man; the way he handled the walker was the way of the familiar.
I kept driving home, just around the corner, and I felt rather verklempt. As a family, we’d paid a steep price for our knowledge. But I was seeing the positives of my boys’ experience. That capacity for observation, for slowing, for meeting needs, for being willing to take on.
They were becoming good men; they are enriched human beings.
This post was previously published on medium.com.
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