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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Tuesday, February 12, 2013


Washington DC
Many of the responses to this blog and to my email to friends and acquaintances have referred to my “courage” in making it all public.  I certainly don’t mind my friends thinking me courageous, but my making things public is not an act of courage.  To call me courageous because I acknowledge my actual physical and mental condition implies that there would be reason to fear other people’s knowing.

Why is it courageous to invite my immediate and wider community to share in my pain, to give them the opportunity to support and comfort me and my wife Marja, to lessen their fear over and embarrassment over the disease, to prepare themselves for a similar pain?  Really, what’s to fear?  Mockery?  Rejection?  Abandonment?  What?

Certainly people may reject me (although that’s not at all my experience so far), but wouldn’t those people abandon me later, anyway, when my symptoms became more obvious and there was more to fear or be embarrassed about?  And wouldn’t they be even more likely to do so if they didn’t know that I knew I was impaired?  Inviting people into my reality, it seems to me, makes it considerably less likely that they will ultimately abandon me.  And inviting them in now when I’m still pretty competent at least gives them and me a chance to learn from each other and become more comfortable with each other before my condition deteriorates.

Refusing the label of courageous is not false modesty on my part.  In fact the emails and comments I’ve been getting since letting people know have been full of love, admiration and respect, making my disease considerably easier to live with.  And, to tell the truth, I’m not above reveling in all the good things people have said about me in their emails.  It’s been a little like being able to listen in on your own memorial service.

Before the diagnosis, my embarrassment over praise and fear of appearing conceited would have made it difficult to accept their compliments.  Now I say to myself: Yes, my life has been good; I’ve accomplished important things; I’ve made the world a better place.  Making the diagnosis public is much less courageous than it is confidence in what will give me the greatest joy and satisfaction.


  1. Anonymous7/02/2013

    This is grace. Would that we all could accept compliments and praise gracefully, all our days, instead of feeling like we didn't deserve them or needed to deflect them for some silly reason.

    Thank you so much for writing and sharing your journey. My mother was diagnosed with "mild dementia" in January, though since a serious car accident 6.5 years ago, her judgment has been much diminished, in my view. She's more along the lines of the 'mean drunk' model than the 'happy drunk' as this progresses, and it is not easy to be around her.

    1. I don't know about after her car accident, but certainly AD includes reduced inhibitions that can sometimes result in very unpleasant behavior. This is one of the reasons that Alzheimer's is oftem most difficult for the caregivers.

      A number of people have commented that as the disease progresses, the person become nicer and more fun to be with. I hope that it happens for you.


  2. Gayle T9/21/2013

    My mother certainly became more pleasant as the disease progressed and cuter by the moment. I enjoyed my time with her.


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