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“Learning to Speak Alzheimer’s”—Book review

I am not here anymore.
Somewhere else is where I am.
A place so hard to find,
you cannot see me here
or visit me there
or wish me out of this anywhere.
If this is where I am supposed to be,
why can’t I find me?

I was brought up to never tell a lie. Never. About anything.

When I was about 10 years old, Daddy’s good mechanical pencil came up “missing.” Who had seen it? Nobody. Not me.

Well, maybe me? Maybe it was in my closet? Because I had used it? But even after guilt set in, I was too scared to admit I had told a lie. So I didn’t.

And I still remember how yucky I felt.

I don’t want to feel yucky again. I don’t want to lie to my mother when she asks how much longer until she moves back home. Or how the work is progressing on her house. Or how long it takes to drive from my house to see her (she’s happiest when I say only about 5 minutes).

So I squirm around questions, and redefine words in my mind (what exactly is “home” anyway?), and do my best to be honest, while still looking out for her best interest in her perceived reality.   Learning to speak Alzheimer's by Joanne Koenig Coste

Learning to Speak Alzheimer’s is a great book for people like me, who want to maintain the dignity of their loved one with dementia, but need to maintain their own dignity, too.

Author Joanne Koenig Coste learned the hard way when she took care of her husband with Alzheimer’s. She’s since ironed out five ways to help, and teaches these to others.

Five Tenets of Caregiving

  1. Make the physical environment work
  2. Know that communication remains possible
  3. Focus on remaining skills
  4. Live in the patient’s world: behavioral changes
  5. Enrich the patient’s life

She gives specific bites of advice, like:

  • Place the toothpaste on her toothbrush before she goes into the bathroom for morning grooming.
  • Eliminate meaningless utensils and condiments from the table; several choices are overstimulating.
  • Learn to communicate with pictures instead of always with words.
  • If she fails to recognize you as a friend or acquaintance, simply reintroduce yourself.
  • Go into her world for the necessary moment to reassure her, then change the subject and turn it into a pleasant experience.

And this biggie:

  • Never attempt to reason with someone who has lost her reason.

Like The 36-Hour Day, this is painful reading, to be sure. Alzheimer’s is downhill road, and who wants to be reminded of how bad it typically gets?

But for me, preparedness is protection. For me. For her.

The more I know now, the more patient and helpful I can be later. Hopefully, prayerfully. I wish I had already known more.

I want to be straightforward with my mom. But that doesn’t usually make sense to her. So I have to speak with her in ways she will understand. Books like this help me know how to live in her reality. To bring her joy she can feel. To treat her with the respect and dignity she deserves.

She’s still my mother, after all. And I will always love her.

And that’s the God-honest truth.   


Lisa Spence said...

So glad there are resources to help you better care for your mom and to help you fight your own sense of helplessness and frustration.

Joyce said...

This post brought me to tears as it reminded me of my daddy and his final journey. My thoughts and prayers are with you. xo


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