Saturday, April 03, 2010

Interview with the Caregiver, part 2

CY: You have been a caregiver for 20 years, is that normal?

Patrick: “How long will this take?” That inner child sitting in the back seat endlessly asking “are we there yet” never grows up. Inquiring minds do want to know.

Statistically the average time spent caregiving is 5 years. Yet statistics fail to capture the extraordinary range of caregiving situations. End of life care for a terminal illness is obviously shorter than care for a chronic disease or disability.

For what it’s worth only 15% of caregivers have been involved for 10 years, so at 20 years I guess you could say I’m “abnormal”.

CY: Have there been different stages or levels of caregiving over the years?

Patrick: Somewhere I wish there was written in stone “The X Stages of Caregiving”. Unfortunately, uniqueness makes this square peg round hole territory.

Caregiving ‘evolves’ of that there is no doubt. Obviously disease progression drives the pace. Caregiver metamorphosis defines the pace.

At genesis you are about SUPPORT. You basically help out.

With progression PERSONAL CARE becomes part of the equation, ‘hands on’ assistance with activities of daily living, dressing, feeding, personal hygiene, and toileting.

When personal and medical decisions can no longer be competently self-directed you enter ADVOCACY, almost becoming ‘one’ person.

CY: What do you mean by caregiver metamorphosis?

Your self identity transforms. In the beginning you identify yourself as “my wife has …”, or “my child has …” That is also how you see your role.

Later you begin to identify your self as a caregiver. You are not the person you were before just ‘adding on’ support for another to ‘your’ life. You accept your transformed self-identity.

As caregiving evolves fundamental changes occur in both of you.

CY: Ever consider walking away?

Patrick: Yes, the voices in my head argue about this all the time. Caregiving is a CHOICE; the person you are caring for has NO choice to be ill or disabled. You will always be both separated and joined by that reality.

to be continued …

Caregivingly Yours, Patrick Leer
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  1. This is an extraordinary series, Patrick. I am learning a lot. Thank you.

  2. The push-pull of loving the one you care for. It's like the Olympia Dukakis character says in Moonstruck -- "When you love them, they drive you crazy."


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