Wednesday, June 26, 2013

Beyond blueberries

Every morning Mom reminds Dad to eat his blueberries. She gives him a handful of walnuts with his lunch. She chooses fish high in omega 3's for his dinner. "Make sure you eat a serving, Don," she advises, "to help your brain."

But Dad's brain is a twisted knot of cords with mismatched and fading signals: berries, walnuts and salmon cannot coax it out of its haze.

So, this week, my siblings, my mom, and I visited the Alzheimer's Association to learn what to expect from this disease, how to care for Dad, what to do.

The care coordinator took us into an awkwardly decorated conference room.  Someone tried to make it feel like home: a bookcase stood against one wall, shelves proudly displayed red glass vases and rustic baskets. A painting brightened the space. 

But the bookcase was filled with books about dementia. A box of tissues signaled the sorrow of previous gatherings. We sat around a bare table, save the phone my brother had conferenced in on, and the styrofoam cups of water and bad coffee my mother and I  sipped from. There we spoke of the decline of health, caregiver stress, incontinence, nursing homes, home health aids. 

As we spoke, I looked at my mom. She sat, unflinching, as we discussed the evil disease ravaging her husband's brain, the disease that would ultimately rob the man she loves of his independence and dignity. The disease that would surely kill him.

Though I felt tears well up in my eyes, eager to spill out over the rims, I saw no such emotion on her face. Mom guards her sorrow closely, so she won't burden her children. She does not realize that her tendency to do so causes a burden.

I worry. We all do.

Because we do not know what will happen. All we know is that today's misery will balloon, becoming much worse than it is today.

We left our meeting with an action plan. Research to do. People to contact. I suppose it should make us feel better, but disease has a way of containing the human spirit, weighing it down. With heavy hearts, we move on.


  1. You have my sympathy. My family recently completed the same journey with my mother. Best of luck to you all.

  2. My thoughts are with you as well. If nothing else, I hope my sharing my experiences will help others, and raise awareness about a deeply underfunded, and heartbreaking disease.


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