Compassionate, informed advice about healthcare decision making

published by Hank Dunn - April 5th, 2013
Alzheimer’s and Hope

I never thought I would see those two words together. Alzheimer’s and hope. Well, maybe, “I hope I never get Alzheimer’s.” Okay…I’ve heard that a lot.

I have been reading some really hopeful stuff from someone with Alzheimer’s Disease. David Hilfiker, a physician, is on a mission to make this eventually fatal disease less scary. Last September he was diagnosed with mild progressive dementia, probably Alzheimer’s. The Washington Post ran a story about David’s life now and his new vocation as one who is losing his mind.

Dr. Hilfiker has spent his life excelling. High School valedictorian. Standout at Yale. Med school grad and rural physician. Inner city physician for the poor. Founder of Joseph’s House, a hospice for homeless people with fatal diseases. Author of three books. Husband of 44 years, father and grandfather.

Our paths have actually crossed. We were members of the same faith community and in a mission group together for a while in the early 80s. I sent him a draft of my first book, Hard Choices for Loving People, and he was so kind to offer significant suggestions for improvement. That’s a whole other story. I had lost touch with him and then saw the piece about him in the Post.

Watching the lights go out

David is writing a blog about his experience, “Watching the Lights Go Out.” It begins last September with the diagnosis which confirmed his suspicions that he was losing his cognitive capabilities. He chronicles the mental mistakes he has made, the forgetfulness, preparing for a future in a nursing home, telling his family, friends, and church.

In February he gave a sermon to the congregation where he is a member, the Eighth Day Faith Community (part of Church of the Saviour). Titled “A Theology Out of My Life with Alzheimer Disease,” he tells of the lessons he has learned. He has learned to let go of shame and guilt for mistakes (whether caused by his disease or not). In other words, to be more forgiving of himself. He has become more emotionally available to his wife, family, and friends.

Live in the present

For me, the greatest lesson is one for all of us. Live in the present. He told the Post reporter the same thing, “’If I live in the future, it’s a very painful disease,’ Hilfiker said one recent afternoon as he sat at his kitchen table in Northwest Washington. ‘If I live in the present, it’s not.’”

Do yourself a favor. Go to his blog and sermon. I’ll stop with just a few quotes from his blog. Thank you David!

Perhaps this Alzheimer’s is allowing me to enjoy my life for the first time, not because things are any better, but because I’m more emotionally in touch with the goodness. I feel rooted, grounded.  I’m where I’m supposed to be.  I’m not looking for something else, something better.  And this gift comes through my disease.

So when I discovered I had Alzheimer’s, I could look back at my life without regret that I didn’t choose to do this or dare to do that.  Marja and I have had a good life.  And far from preventing me from doing things, so far this disease and its process have given me a richer life.  I now have a well-defined call and a fulfilling vocation (writing and speaking about this illness).  Sure, I’m younger than I hoped I would be when I contracted my last disease.  Certainly I would like to live longer, see my grandchildren grow up.  But we all have to die, and I’ve been given much more than most people.

And now I’ve been given this adventure!

[2016 UPDATE: Turned out he did NOT have Alzheimer’s and he wrote a final blog post to update his readers.]

Photo credit Nikki Kahn/The Washington Post

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