Sunday, April 28, 2013

Alzheimer's and The Invisible Siblings

Many of us who are the One have experienced intense disappointment, hurt, and anger when we feel like we've been abandoned to our mission by those with an equal stake in our loved one’ s care.

By Pamela R. Kelley
Alzheimer's Reading Room


Alzheimer's and The Invisible Siblings

Buried in the comments to Bob’ s article, In the Bunkhouse, Random Thoughts Edition, and in reference to the growing number of Alzheimer's caregivers (almost 15 million), I noticed this exchange:
Carole: "What I'd really like stats on, are those who have a close relative with Alzheimer's ... and they refuse to help. I want a stat on the deadbeats so they can see themselves officially identified. Right now they are invisible".

Nancy: “ Hear, Hear!!! I totally agree!! If everyone who identified themselves as a primary caregiver also indicated how many siblings they have who do not help … well, my conservative estimate is another 15 million!!!”

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Many of us who are the One have experienced intense disappointment, hurt, and anger when we feel like we've been abandoned to our mission by those with an equal stake in our loved one’ s care.

Reading the above exchange made me wonder about those invisible siblings and adult children.

How can they blithely carry on without realizing how important and meaningful a small act in support of the caring mission would be? Then, I began to identify all of the assumptions I made when I formulated the question.

I assumed that they are untroubled by their abdication of support responsibilities. I assumed that they know what to do in support. I assumed that they are capable of empathy, for their afflicted parent as well as for their burdened sibling.

Is it reasonable to assume any of this?

Why should it matter whether the invisible sibling is troubled by their inaction? Perhaps because we want to believe that eventually their consciences will prod them to action. Perhaps we cling to this hope despite months and years of evidence to the contrary simply because hope is part of the gravitational force that pulls us forward and through every day.

Maybe they don’t know what to do after all.

The last thing the caregiver needs is another task -- that of educating the absent ones on how to help. No primary caregiver can manufacture compassion and empathy in a person unfamiliar with these states of mind and heart. That Herculean task need not be added to our abundant responsibilities.

Everything we choose signifies something about us. We who have chosen to be the One need only consider the invisible ones to realize that another choice existed, and it’s a choice we rejected.

Spending our emotional capital lamenting the incomprehensible choice made by those who have turned a blind eye or hardened their hearts will only deplete us. We can’t afford that.

When I’m troubled by matters like these, I look for a way to frame an invisible sibling’s behavior that explains it. I’m just looking for some sort of rational context so that I can steel myself against future disappointments.

What can feel punitive usually isn’t intended in that way. Contextualizing it lets me put this burden aside for a while, if I’ m lucky.

If you’re burdened by a family member who is missing-in-action, what do you do?

How do you keep those feelings from intruding in the positive and caring environment you work so hard at maintaining?

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Pamela R. Kelley is a caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. Ms. Kelley lives, works and writes in Anchorage, Alaska.

Original content the Alzheimer's Reading Room