Alzheimer's blog

Caregiver label doesn't define you, but helps recognize what you do

By Angela Lunde November 13, 2012

Last week I reconnected with a lovely couple I met a while back, Nick and Marie. It's apparent they've been in a caring relationship with one another for many, many years. Yet, when their doctor recently addressed Marie as caregiver (Nick is living with early stage Alzheimer's), Marie was a bit rattled, stating, "I'm a wife."

So I wondered, when does the label caregiver replace wife? If your husband or wife receives a diagnosis of Alzheimer's, do you (the spouse) leave the doctor's office with a new label, title and role? When do spouses label themselves as caregiver?

To a great degree we rely on labels to define ourselves. Labels connect us to our identity and self-worth: I'm a wife, I'm a husband, I'm a father, I'm a daughter, I'm an artist, I'm a manager, I'm a vegetarian. Often these labels don't necessarily reflect who we are as much as what we do, what our social status is, or how we function in life.

In a society that puts so much emphasis on the desire to be something, each of us grapples with figuring out exactly who we are in relation to our world. Importantly, the language or words we use to describe ourselves largely influences the way we think. And the way we think drives our emotions, our expectations and our behaviors.

In the case of Marie, instead of "being" a caregiver, she chooses to see herself as a wife in a caring or supportive role. Perhaps then caregiving or caregiver is a verb and not a definition — one that describes your relationship to other people, not who you are nor your relationship with yourself.

The ability to see ourselves beyond our jobs, roles, labels and titles and as the real, genuine substance of who we are is defined as the authentic self. It's who you are at your absolute core, not defined by anything external. Authentic self is all of the things that are uniquely yours and need expression.

For those in a caregiving role, faced with never-ending tasks, a sense of true self is often diluted and quite possibly something that gets lost early on. The path to authentic self may be somewhere between who you are and the one you are caring for.

Maybe it's the "golden mean" (Aristotle anyone?) between the extremes of selfish and selfless — the balance that rises out of compassion and loving care, and ends well before neglecting your own needs. It's an inner sense that you matter, that you deserve to be healthy and whole just as much as the person you're caring for.

I think many of you would agree that you don't want caregiving to define who you are. However, identifying yourself in a caregiving role as Marie does is a good for you. By identifying yourself in a caregiving role or as a caregiver you begin to pay attention to information, resources and services that can help you.

Most importantly, you become part of a large group of a people with common issues, needs and concerns. You begin to build recognition not of who you are, but of what you do.

When we name and label a role that we have, we validate our experiences and can nurture our feelings. We say to the world: Here I am, acknowledge me, hear me, support me, I matter.

Today you are You,
that is truer than true.
There is no one alive
who is Youer than You.--Dr. Seuss

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Nov. 13, 2012