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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.

Saturday, July 20, 2013


Washington DC
Earlier this week, the covenant members of our small faith community met for our monthly members' meeting.  I’ve been part of the four-person leadership team for a number of years.  In our community, commitment to membership in anything—the church, a mission group, the leadership team—is made for a year at a time, after which each one of us re-evaluates to discern whether we’re called to continue that commitment. 

Sunday, I shared with the community some of my ambivalence about renewing my commitment.  I said I was concerned that my cognitive impairment wouldn’t allow me to continue to participate meaningfully, especially for a full year. 

But it’s complicated.

At this point in my illness, I’m aware of cognitive losses that have led me to give up, for instance, the bookkeeping at church or the writing of complex articles and commentary that was my vocation prior to this disease.  But I haven’t yet noticed a decline in my ability to be actively and helpfully present in small groups or in mentoring relationships with individuals.  Perhaps I can call that capacity “wisdom,” which, surprisingly, doesn’t yet seem compromised.

So, at this point, I still have a role on the team that’s important to me.  But I’m concerned about the losses that might be just around the corner, disabling me more quickly than I’d anticipated and making me a burden to the team.  I may or may not recognize my need to relinquish responsibilities before others do.  My community has reassured me that they’ll speak up if my abilities are compromised, and they encouraged me on Sunday not to allow that concern to keep me off the team.  We’ve talked enough as a community about my Alzheimer’s that I do have some confidence that they’ll be able to tell me if I am not contributing. 

And that may be the problem.

As I’ve reflected on it since Sunday, my ambivalence actually rests on my fear that they will have to tell me it’s time to leave before I recognize it myself.  It’s been a value inculcated since childhood: Do not think too much of yourself; never allow your self-assessment to outrun others’ assessment your capacity.  If I don’t leave on my own initiative, I fear, I will be humiliated by their request to leave.  So the real issue is not my concern about being a burden but about my pride. 

I want to be on the team.  I have an important role there. My capacities in that area are not yet impaired.  Most importantly, perhaps, my presence there connects me tightly to our community, which is central to my sense of meaning and my happiness.  This is a community that knows my illness, that loves me, and which I trust.  Yet I am contemplating giving all that up, not because it may be time to do so, but out of pride that fears the humiliation of being told I must. 

As our pastor lay dying a few months ago, he told me he was learning about the supreme value of weakness and vulnerability.  In our weakness is our strength, wrote the apostle Paul.  Yet my pastor said he could only accept that fundamental truth as he was dying.  I’m not sure I believe Paul yet, but I can see that my weakness from Alzheimer’s disease is helping me confront issues I could not have otherwise confronted and given me a deep gratitude and a heightened capacity for relationship.  It’s giving me permission to allow my community to gather around me without my humiliation.  My weakness has given me new life. 


  1. So much harder to receive than to give. And you are right that it is pride that holds us back. Maybe a survival mechanism when we are uncertain of others' love. I seem to need to hear this message over and over!

  2. don't try to die too early. You have an illness, you do not have a character flaw. Its not your fault. When and if you get to the point where you are not helping, it still will not be your fault. Its nothing personal, its an illness. And since you want to live until you die, enjoy your life, your travels, your connection to others. If, someday, you lose some of that connection, at least you will have done what you can in this world to make it a better place for everyone. When you get to the point where you are more work for them than you are a help, only then give it up. But live until then, do what you can, love as much as you can. We may all die before you ever need a home. So live and laugh and love.

  3. Lee An is right. Actually you may be keeping the AD at bay by your involvement in your group. I wouldn't concern myself with committing the sin of pride, since just by acknowledging that you are afraid of it, you have kept that from happening.

    I would never have believed that someone could continue to put a new spin on the disease, week after week, as you have Dr....your mind is much sharper than mine!

    My read on your situation is that you not only may be helping yourself, but you may be increasing the group cohesiveness and allowing each of the members to do a good deed, if need be, by telling you if you are slipping. I know that none of them would consider you a "burden." I certainly wouldn't, given the circumstances. Put yourself in their shoes and I'm sure you would be honored to help another member out in this way.

    That said, I know that you are worried about the humiliation involved. My guess is that a) it won't be necessary at all and b) you will volunteer when you know the time is right. But if your worst fears come true and they ask you to retire, then you will give them the opportunity to be loving and supportive and that will enhance THEIR lives.

    1. Both you, Cathy, and Lee Ann are absolutely right. To make matters more complicated, it's difficult for me to convert my head knowledge into heart knowledge. Intellectually I "know" much of what you've said, but it needs to be converted into heart knowledge. Once I was able to recognize the pride involved, than I could open myself up more deeply to the community's support.
      A number of people have indicated, Cathy, that the community is drawing closer to each other because of my illness and Marja's and my need for support. Amazing what gifts tragedy can bring!

    2. What a wise and wonderful stream of comments.

  4. I'm struck by your level of introspection. I've never really 'gotten' Paul's statements about weakness but you are helping me see it. I feel blessed to have found your blog and to learn from you on your journey, and I think it's an enormous gift you are giving us all, to share your thoughts so completely. That fact of your open sharing with all of us leads me to believe thatif they have to tell you it's time to step down, you'll be able to take it with the love with which they offer it.

  5. Thank you for your suggestion last week that I add my thoughts on dealing with this while living alone and w/o children, near or far. I'm thinking and reflecting and will write when I might have something of interest to others and/or greatly clarifying to myself.

    1. Anonymous8/27/2013

      I just found this blog tonight and have no idea if I will find your posts as I read on. I hope so. I'm in similar circumstances to yours (female, 70, living alone, no kids) and uneasy about my own cognitive status. I'd welcome your thoughts and wish you well.


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