[Dialogue] Fred's Health

[Janice Ulangca]

Dear Nancy and Fred,

My thoughts are with you as you adjust to this new reality. I'm so glad you have a resident community there at Songaia that understands your context.  I remember well the gracious hosting that you  and the Crows did for Abe and me when we had the opportunity to visit Songaia.  Showed us around, then took us out to dinner.  Such a pleasure to be with colleagues, and to just be in your creative community!

Notes from an ex-caregiver:  Everyone's situation is different.  For myself, I would not allow that word in the relationship between Abe and me.  It was always a partnership, with him doing as much as he could and me doing what I could.  Once a year or so after he started kidney dialysis, the doctor in our monthly renal clinic referred to me as a caregiver.  I looked daggers at the doctor, and he never used that word again.  I don't think Abe heard him, because his hearing was not good.  This way of thinking went way beyond just the term - and worked for us.  We were partners up until two days before he died, after a third heart attack made it clear the end was near, dialysis was stopped in consultation with him, and that brought on a peaceful coma.  Had his mind not been clear, things might have taken a different turn, and I might have truly seen myself as a caregiver, or caretaker.  

For we do care!  You for him, and he for you, and many friends, family members, and colleagues in far-flung places, for both of you.  So perhaps caregiver - and care-receiver - is what we all are, and need to be.

In spite of the difficulties - may this be a truly good time for you both - sweetness in the midst of pain.

With love,
Janice Ulangca
  ----- Original Message ----- 
  From: Fred Lanphear 
  To: 'Colleague Dialogue' 
  Sent: Monday, February 04, 2008 12:06 PM
  Subject: [Dialogue] Fred's Health


  Dear Friends,

  Our lives continue to be full of adventure and and wonderful  
  relationships.  We want to share a new part of our Journey together  
  which began when Fred received a medical diagnosis  about a month ago  
  for the symptoms he was experiencing, one we had never imagined.

  After seeming to "grow old" too soon and too quickly, Fred has been  
  medically diagnosed with ALS or "Lou Gehrig's" disease.  Since being  
  given this "new assignment", he is deciding what he wants to do in  
  the next months or years that he is still functional.  We do not know  
  just how this condition will play out but we do have lots of support  
  from family and community.  The best of all worlds, he will be able  
  to be at home with lots of medical and "machine" support.  We will  
  still be traveling; Mexico this coming Wednesday through 2/26,  
  Cincinnati and New Mexico in May/June, and RI soon after that.  We  
  would also like to be present at Fred's 55th high school reunion but  
  we will take life as it comes.  His breathing capabilities may be a  
  determining factor.

  Bruce came out for a week 1/24-1/31 to spend time with us and the  
  rest of the family.  He and Nancy are quite sure they will be moving  
  to Vancouver, B.C. Canada sometime this coming summer.  It couldn't   
  be a better time for them to be close.  Our family had good  
  conversations with many tears and lots of laughter as we try to take  
  in what this will mean for us.  Although there are a few research  
  studies being done, this condition is very "mysterious" with no clear  
  picture of its cause and no treatment except one drug, its effect is  
  still limited. The book and video, "Tuesdays with Morrie" is an  
  excellent story of a man with ALS.  After watching it the other  
  night, we felt it could even be shown to children 9+.

  I am ready to take on the role of primary caretaker and realize that  
  it will be a huge undertaking.  The emotional and physical energy  
  required is enormous.  Fred has been my life's partner for 50 years  
  and the thought of not having him with me is scary, this disease as  
  well.  However, he is seeing the rest of his life as very much a part  
  of his spiritual path and we will travel it with respect and  
  acceptance.  We hope to be able to celebrate our 50th "jubilee"  
  anniversary together, but are planning to begin that celebration  
  now.  It has been an unbelievably wonderful life we have had together  
  and with our children.   Our lives are very good just as they are -  
  we are loved and blessed.

  You are all loved,

  Nancy and Fred



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