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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.

Friday, December 14, 2012

God's Humor

On the train to Napa
I sent an email yesterday to the budget committee and the Leadership Team about the mistake I’d made, suggesting that I give over the duties of bookkeeper.  I got the following response from Fred that he copied to all the others:
[I] reckon the dilemma you describe as a piece of God's humor (I mean this seriously) and move along trusting that things will work out in a way we can handle either by 8th Day receiving more than we have anticipated or by our needing to make cuts in the fourth quarter which we have to do any year income is short of projections. I think we have done our job—both as finance committee and [church] members—on this budget and we should let things proceed and not worry about it … definitely not worry about it! In doing so I think we will honor our dual grounding as faith-based and responsible. Most of all it is critical that you or you and Marja not take this on as your responsibility. Stuff happens! And sometimes it gives and sometimes it takes. That's my piece of wisdom.
I’ll probably go with my original plan since it’s only modestly inconvenient, but Fred’s response certainly helps me recognize how much support he is offering me. 

As I write this, Marja and I are on the train to Napa, CA, to visit our family.  Coincidentally, Fred is on the same train with us as far as Chicago.  As Fred and I talked, our conversation turned to my decision to give up the Eighth Day bookkeeping job.  He pointed to the difference between accepting the limitations that come with the disease and “dropping out” of community by giving up too soon on a task that keeps me connected to the community.  It’s a fine line and I’ve faced it before, for instance in trying to decide whether to continue my professional writing about political/economic matters.

I told him that it would make me feel that I was contributing less to the community.  The bookkeeping itself is not that difficult, and I think I can do it well for a while, but I’m afraid that it wouldn’t be acceptable to the community.  On the other hand I could ask the community and not assume I know what they want.  The best might be to talk it over with leadership team.  I will decide then about informing the covenant members and getting their feedback.

In trying to write this blog entry this morning, I’ve had to go back and forth between my journal entries and my letter to my spiritual director to get clear what I’ve already written about in previous posts.  This should be a relatively simple task but I found myself getting confused.  After more than an hour, I had to stop and come back to it later.  When I came back to it, I was able to complete the task but it was still not easy.

As I look over these blog posts, so much of it is a simple recounting of all the symptoms of the Alzheimer’s I’ve experienced and not so much reflections on what’s happening.  On the one hand, I want to talk about them, to process them.  On the other hand I’m not sure that this kind of cataloging is helpful to my readers.

12 comments:

  1. Yes it is.... I'm a reader...

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    1. Thanks, Clancy. The feedback is welcome.

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  2. Ditto. Carry on for as long as you can. I'm starting from the beginning and working my way toward the present.

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    1. The blog, of course, lists posts most recent first. If you want to read past blog posts in chronological order, you can go to my website (www.davidhilfiker.com) where I've entered them all in date order, one month to a "page." You can also easily print things out from there. (And, who knows, you might find some of the the other stuff I've written interesting, too.)

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  3. Yes please post your reflections. It gives a more complete picture of you and your circumstance. I'm reading from the beginning too.

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  4. I too am reading from the beginning and I'm finding your blog both fascinating and profound. My mother died of ALS at the tender age of 66. She would not allow anyone but my father and her children (not grandchildren and none of her dearest friends) to see her in the final four months. It was devastating to her friends. Your posts on embarrassment have helped me understand what might have been at work in her decisions. Anyway, thank you for sharing all that you are experiencing.

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    1. A similar thing happened with my father-in-law as you'll see when you get to "Martti" on April 25. He was such a proud man and Finnish culture is more concerned with propriety than we are, so his decision not to see many people may have been best for him. (And he did allow his closest friends to visit.)

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  5. Gayle T.9/21/2013

    Hearing about your symptoms is helpful to me as I am on the lookout for this illness in me and my sisters.

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  6. I am reading from the beginning too. I have already identified with some of the things that you have experienced. It was not until I cared for my Mother-in-law that I recognized some of the things my Dad did were Alzheimer's not his personality. When things started to change, he withdrew and gave up on life. I think maybe this may have made things worse, but I don't really know. I find myself not wanting to do difficult things but I force myself because I think it is important to learn new things and keep up. I am almost 60. My husband and I are very aware that Alzheimer's could be our future because of our parents. We are trying to do things to stay mentally active more than we used to.

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    1. (I'm astounded -- and grateful -- that you and a few others actually read from the beginning. thank you.)
      We understand so little about this disease. Why does you father change and give up on life while others have very opposite responses. Such a mystery.

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  7. Lily Tinkle10/29/2013

    So grateful that you take the time to share your experiences and thoughts with us all. I have been reading the blog in random order due to limited time at the present, but plan on reading everything past and future. It is so inspirational since it gives light, guidance, and hope to the many of us who will undoubtedly follow along your path in our own way. As a doctor, I've tended to look at these illnesses only as a taking away, but your ability to grow and live through this process is eye opening. Also, the personal generosity and kindnesses of others that you write about are inspiring as well, helping me figure out how to treat those who have dementia with the same respect, dignity, and openness that all persons deserve. Thank you and my best wishes to you and your family on your journey.

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    1. One of the delightful aspects of this journey has been the community of people who have congregated. Sometimes they make comments or email me; other times I just hear about them some way. But it's wonderful to experience the "personal generosity and kindness of others. That is, in my opinion, our "true" nature anyway and many of us jump at the chance to express it.

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