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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.

Thursday, October 10, 2013

Confusion … Again

Washington DC
Marja and I visited friends the other night.  They’re a small group of twenty-somethings who live near-by in community, and each volunteers at an anti-poverty ministry in the city.  Our conversation turned to the role of the Millennials in the politics of the next generation.  I mentioned The Fourth Turning, a book quite relevant to the conversation and tried to give them a synopsis.  But I got lost in my own words.  When I realized I couldn’t find my way through to an adequate description, I said to the volunteers, “I can’t do this!  I’ll just have to stop.”  I’d told them earlier this year about my Alzheimer’s, so I acknowledged my confusion, and we went on with the conversation.

I noticed three things.  First, I believe this is the first time I’ve gotten confused enough that I had to give up half-way through a conversation. It feels like a further step down the ladder.

Second, I was gratified not to feel embarrassed by the episode.  The conversation just continued on as if it were normal for someone to get confused by his own thoughts.  Nobody seemed weirded out.

Third, I wonder how this will affect my willingness engage in complex conversations.  Will I be comfortable with trying to explain The Fourth Turning again?  But the reminder is: “Use it or lose it!”  If a person with moderate Alzheimer’s, for instance, has trouble buttoning her blouse and her husband jumps in to help and then proceeds to take over every time a blouse needs buttoning, his wife will quickly lose the skill altogether.  Better to let her struggle for awhile until it’s clear that she can’t do it.

Mine, of course, is a cognitive, not a muscle-coordination problem.  But the principle is the same.  It will be better for me to continue engaging in such discussions, even of The Fourth Turning, until I’m sure that the capacity is really gone.  That will probably result in a few more potentially uncomfortable times before it becomes clear that I can no longer do it, but I also don’t want to shut down any earlier than I have to.

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In my previous post I described my confusion washing dishes at Joseph's House.  I wondered whether it would cause the interns’ “opinion of and respect for me [to] change.”  I received several comments and emails from readers who thought it unlikely I’d lose the interns’ respect as I worsened.  They’re probably right.  Actually, even as I wrote the post, I struggled to find an appropriate word and used “respect” because I couldn’t find just the right one.

One reader suggested that what others might lose is not respect for but interest in me.  That feels accurate.  Even as people continue to feel respect for me, it’s only natural that some will feel little interest in spending time with me.  I had exactly that reaction to Robert Greenleaf, an author I greatly admire, when he visited us here in Washington.  Once it became clear that he was cognitively impaired and that it would keep him from meaningful discussion, I saw no purpose in remaining and left as soon as I could without being grossly impolite.  I don’t feel proud of that, but it certainly seems a normal reaction and I can’t see any reason it should be different in my case.

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In case any of you is wondering, I won’t be getting the results of my neuropsych evaluation until after the government shutdown is over, and the National Institutes of Health can reopen.  Given that the latest suggestion from the Republicans to extend the debt ceiling debate for another six weeks or so while keeping the government shuttered, my results may be a while.  Other people’s problems with the shutdown are certainly greater than mine, but I’m still frustrated.

9 comments:

  1. David,

    I want to say Thank You for writing about your journey. It is courageous and admirable what you are doing here.

    Keep being awesome.

    Ben

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  2. At a very young age, my son taught me that no matter the age, no matter the inability to do certain things, we can all connect in some way and lift another person in light. I visit several people regularly who have lost much of their capacity for conversation, but I think we don't lose our ability to connect on some level. When they light up as I enter a room, I know they recognize I'm someone who brings them some happiness. Likewise, David, your blog readers gain insight from you and our own blessings from you sharing your perspectives. Thank you!

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    1. I hear from many people the truth of your words: Even as we lose capacity for conversation, we don't lose our ability to connect. That is enormously reassuring. What, after all, can be more important than human connection.
      Thank you.

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  3. Sir,
    I have been reading your journal ever since I learned about it in the Washington Post. However, I have never commented here before now.

    My interest in cognitive disorders is due, in part, to my mother-in-law's long, slow decline because of AD.

    I know from my interactions with my mother-in-law that you are so correct when you say “Use it or lose it!” I saw that the more that we let her do what she could do -- albeit with a struggle -- the less dramatic her decline. For quite a time, she managed to "fake" conversations and to the point that if people didn't already know that she had AD, they'd never have guessed that she did.

    She remained contented with her life and condition for many years -- and brought joy to all of us.

    When my mother-in-law reached the point of catatonia and stayed in that condition for several weeks. we slacked off. By that time, she was in a facility.

    Sir, you are doing a great service by maintaining this journal.

    Take care -- and keep on keeping on. Those are the best things that any of us can do in this life!

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    Replies
    1. Thank you for writings. Stories like yours give me (and I suspect) others hope and courage.

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    2. Anonymous10/11/2013

      Bravo!

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  4. Beatrice10/12/2013

    Your site was pointed out to me barely a week ago, and since then I have read through ALL your posts chronologically. What journey you have traveled in the last thirteen months!

    Thank you for sharing your very personal experience with the wider public. Your posts are truly inspiring. I have had lots of thoughts going through my mind while reading the entries, but since I was usually lying in bed using my pad before going to sleep, I did not comment immediately on individual posts.

    I do remember, however, some of them and want to refer to just a couple of ideas.

    When you wrote about what image of you your grandchildren might carry into their adulthood, I thought that the images you conjured will eventually be balanced by those emerging in them while they will be reading your blog posts as they mature. I believe that the love, hope, joy, and gratitude expressed in them will far outweigh the images you worried about.

    The other thought I recall is that of you talking about slowly losing your current self and where that might lead. That reminded me of what one of my favorite spiritual authors, Father Thomas Keating is writing about the self. (He distinguishes between the True and the False Self.)

    I have read many of his books and have been practicing Centering Prayer (CP) for almost two years. FK writes about the five different levels of consciousness, which we all to a greater or lesser extent are in contact with. CP sets in motion a process, a journey from the outermost level our our consciousness to the inmost core of our being.

    This outermost layer of consciousness consists of ordinary, everyday consciousness, where all our thoughts and emotional reactions lie. Through CP the next level of consciousness, spiritual awareness, is awakened, from which intuition, among other things, derives. From here, yet another deeper layer can slowly be opened; first, the True Self, the image of God in which we are created; and thereafter, the Ground of our Being, which is our rootedness in God and his creative powers; and finally, our inmost center, where we meet the presence of God.

    FK says that the psychological and spiritual processes that are set in motion through the practice of CP gradually affect healing. He calls it Divine Therapy. He views the spiritual journey as a spiral towards the presence of the Divine in our inner selves. As we descend, gradually old traumas are unearthed. This can be experienced as phases, which St. John of the Cross identifies as the 'dark nights,' but at the same time, an upward spiritual movement occurs in which the "Gifts and Fruits of the Spirit" begin to manifest themselves and bring about feelings of great peace, joy, gratitude and freedom. The individual undergoes a purification process in which, according to Keating, "one partakes in the Paschal Mystery and follows Jesus Christ through his death and resurrection."

    David, I believe that in your writing there is much testimony to the "Gifts and Fruits of the Spirit" manifesting themselves in your life.

    I wish you well and hope that you can relate to some of these words. I know you prefer to read more novels now (as opposed to intellectually challenging texts). But perhaps some of FK's writing will interest you.

    May you continue to experience peace in your heart.


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  5. (I am always astounded that someone would read through all of the posts. Thank you.)
    Thank you for the paragraph on my grandkids. (I've been reassured by others that my grandkids will remember many other things about me, so I'm no longer so worried about their memories, but it hadn't occurred to me that this blog will be available to them, too.
    Father Keating's centering prayer was something I practiced for a while although I've had much more experience with the Buddhist tradition. While I think that meditation has been good for me in the long run (making me a bit more peaceful and giving me a better sense of myself), it's never led to the deeper experience so many others (Christian and Buddhist) experience. We are each so different.
    Thank you for your good wishes.

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    1. Beatrice10/15/2013

      Thank you for your thoughtful words. Not only will your grandkids read your posts, I predict that your reflections - with your or your family's permission - will be published one day :-)
      Re CP, I have by no means arrived at deep level, but I do enjoy the benefits it has brought to my life. We are indeed each so different.

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