Monday, June 21, 2010

What is it like being an Alzheimer's caregiver? -- Marty


By Marty

Long before Mom came under our care, I cared for her mother. Grandma had normal aging dementia of the ultra-paranoid kind, and that little stint was mostly a hellish one. Grandma often accused me of stealing and trying to kill her. She was physically healthy, so I tried to stay out of her way as much as possible.



During this time I was unfortunately immature enough to focus entirely on correcting her misrepresentations of me rather than validating her. Once I even drove her two hours to confirm from the bank’s staff that I was not cashing her checks.

Selfish of me to put my tiny reputation above her self-respect. I hope I learned from that time with grandma to “forgive, for they know not what they’re doing.”

Now my sister and I are caring for Mom, suffering from late-stages Alzheimer’s. Mom is on the opposite end of the difficulty spectrum. She came into our care after years of semi-conscious decline, so we didn’t see the worst of the disease’s cruelty.

At first, agitation and wandering were the two main difficulties in dealing with Mom. But as her strength waned, the wandering stopped. And as adjustments were made to her meds, the agitation decreased as well. Taking care of Mom earns us no stars.

The thing that kills me about Mom right now is the fact that even in the thick fog of Alzheimer’s, she knows how to validate others. Every morning Mom wakes up bubbling with laughter. Rested and calmed by a good dose of Seroquel, she reaches out to her caregivers ready to hug and kiss and offer her wordless adoration. She knows almost nothing and no one. She is compliant and pleasant when not outright cheerful.

I think what I’m learning from Mom is that you can lose your brain and retain your mind. All her life Mom had a servant attitude. She lived for others. Sure, Seroquel helps, but mainly Mom developed an attitude, and that attitude has outlasted her rational skills.

If there is ever a validation breakthrough, I see it proven in Mom: develop the ability to put others first while you still have a brain, and it will outlive and outweigh the fog of Alzheimer’s.

Marty D is a stay-at-home daughter caring for her aging parents. Her mother suffers from late-stages Alzheimer’s and her father from Parkinson’s. Marty is learning that patience and grace are essential toward those suffering from a disease as well as toward those weighed down by their care. She is the author of The Amazing Aging Mind blog.


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