Thursday, December 3, 2015

The ongoing struggle with Alzheimer’s


As I hung up the phone, I regretted having not called sooner. Several times in the past few months I’d almost called Ed, but there always seemed something more pressing to do.

When I did call, I fully expected to hear Ed’s upbeat, energetic voice. “David Whitlock,” Ed would repeat my name when I told him who was calling. “I was just thinking of you,” he would often say, as if it were a magical moment that just as he was thinking of me, I called. You might suspect it to be some sort of Dale Carnegie tactic utilized to make me feel good, but I believed him.

Ed had been a constant source of encouragement to me in a church I pastored back in the mid- 1990s. Pastors need a few people on whom they can depend regardless of what happens. Ed was one of those who would be in my corner, no matter what.

Sometimes, usually just before I preached, Ed would slip me a note: “I believe in you, and I’m with you.”

I’ve kept several of his notes, and every now and then, on a really rough day, I pull one out and read it.

But when I called Ed the other day, he wasn’t thinking of me or likely anyone else. “I’m Ed’s caregiver,” a friendly female voice told me when I asked to speak to Ed. “Ed has dementia, quite severe now.”

Learning that Ed has had dementia “for some time,” somewhat eased my conscience from the guilt of procrastination, but the pain of losing another friend to dementia cut deeply just the same.

November is Alzheimer’s Disease Awareness Month, and although dementia and Alzheimer’s are not the same, they are related, and since Alzheimer’s is the cause for about 50-70% of dementia cases, Ed’s situation, and thousands like his, provides a good opportunity to draw attention to the incurable condition that is Alzheimer’s, a disease that robs people of life as they knew it and affects their families as well.

Think of the difference between Alzheimer’s and dementia like that of someone who has a sore throat. It could be caused by allergies, strep, or a cold. They may know yet. Likewise, when someone has dementia, they have the symptoms---including impaired thinking and memory--- but may not know what’s causing them.

My father-in-law, Lori’s dad, was first diagnosed with dementia, and it wasn’t until months later that tests revealed what was causing his impaired thinking and memory problems: Alzheimer’s. One thing about Alzheimer’s: It’s not reversible. There is no known cure, and the cause remains a mystery.

When President Ronald Reagan designated November as National Alzheimer’s Disease Awareness Month in 1983, fewer than 2 million Americans had Alzheimer’s. That number has soared to nearly 5.4 million.

With Alzheimer’s, there can be brief moments of clarity.

On one of the occasions when Lori went back to Oklahoma to visit her father, the two of them were standing in the kitchen when he focused his attention directly on her, his eyes suddenly sparkling like they use to, and with that so familiar daddy-look-of-love that recognized her as his darlin’ daughter, he distinctly articulated the words with a deep sense of appreciation, “I’m so glad you’ve come to visit.”

Before Lori could grasp that moment and engage him in some conversation, the disease once again descended on him like a fog, engulfing the dad she once knew in a cloud of unknowing.

The blank stare had returned.

But the love remained.

Somehow.

In the movie, Still Alice, Julianne Moore depicts a highly successful college professor and family focused woman who is diagnosed with early-onset dementia. Having lost almost everything, the last word she can remember to say, as she struggles to express herself to her daughter, is the word, “love.”

“When Ed wakes up, would you give him a message for me?” I asked the caregiver.

“Tell Ed his friend, David Whitlock, called. If he doesn’t remember who I am, tell him not to worry about it, that I’m an old friend and I just called to say I believe in him and that I’m with him.”

“But most of all, tell him I love him.”




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