How far would you go?

I read an article in The Atlantic recently about a mom whose son suffered a traumatic brain injury in a car accident. He was left in what was then called a vegetative state.

I say “then called” because in the years since, research has shown that in some cases there’s more awareness than medicine first believed.

This mother and her husband devoted the better part of their lives to helping their son get the best assessment and treatment possible. And in fact, in this case there was more awareness than first apparent. (It seems there often is.)

Love of a parent

But my mind wandered back to another case, in which a parent faced the traumatic brain injury of a grown child. An injury that changed the patient’s life forever. They were functional, but on a limited basis with many of the physical and emotional issues that accompany brain injury. This parent, however, did not go to the ends of the earth to help their child. It wasn’t that they didn’t care. It’s that they were mostly concerned with the impact on themselves. They lacked the empathy that would fuel actions to even attempt to find a better outcome. The reasons are too complicated to discuss here.

Perhaps you think I’m being unkind and judgmental. Perhaps you think I couldn’t possibly know.

Untrue. I was close up and personal.

These are extreme cases, but they do happen. I’d bet some of us know a family affected by this kind of injury.

About the aging parent

But I’d bet all of us know a family impacted by dealing with the deterioration of an elderly parent. In fact, many of us are IN these families, right now.

This was the case in my own family. My grandmother lived to her late 90s and reached a point where my mother felt she could no longer care for her at home. Soon after, my father faced the tragedy of cognitive decline due to Alzheimers. And a bit later, my mother’s own body failed her, but that brain was sharp all the way to the end.

I have thoughts about how all these situations were handled.

My mother simply could not face the consequences of her decision to place my grandmother in a nursing home. She was more focused on her own emotions–guilt? helplessness? all of it? –than on how my grandmother would adjust. Or even feel. Those considerations were just too painful so I believe she wanted to avoid them. I may not have approved but I empathized.

As a result, she did not do the things that would ease my grandmother’s transition to this new situation, where she was forced to leave the only environment she’d known for a strange place with people she didn’t know who did not even speak her language.

This tormented me, thousands of miles away. Yes, perhaps I suffer from an overabundance of empathy.

When we were faced with my.father’s dementia we did the best we could and I think that went as well as could be expected under the circumstances.

Extreme measures

With my mother, we all knew, including her doctors, that she wanted “extreme measures” and we all respected that until it was clear her time was up.  It bought her some time, for sure, although you could question its quality. Nonetheless, we all knew her wishes and we respected them. It was her life. Her decision. It was her right to make those decisions.

I’m not going to say it was easy. It was a burden on each of us in different ways. But it was what she wanted and we were united and committed to carrying out her wishes.

We simply managed our own lives so that her wishes could be fulfilled to the end. Which they were. We never once questioned that her wishes were the primary driver of all decisions about her life.

Would others do this? Maybe not.

In recent years I’ve seen a different situation. A family’s aging parent faced difficulties and living independently was not the best choice. The parent had some wishes of their own and was cognitively capable of stating them. All marbles were present. But the family rejected her wishes. Because this would’ve been too difficult on them.

Not on their mother. On THEM.

It’s about respect

As in the case of my grandmother, family empathy for this person’s situation was lacking. Her wishes were discounted and disrespected. They believed they knew best. They did not even attempt to find a solution that would’ve worked for all. They did not include her in plans for her life. And in the end, it killed her.

You may think I don’t know that for a fact. Well, I do know it.

And so when I read the Atlantic article this morning, I thought of all of these cases in my world, and then these parents whose child was so injured, and wondered, how far would I go for my loved ones now?

I think I’ve answered that question.

Have you? How far would you go? I’d love to hear your thoughts.