Friday 12 September 2014

After Caregiving: A Tribute to A Dear Friend

Today I hugged one of my oldest and dearest friends.  I hugged her for a long time, because this was the day of her husband's funeral.  Kathleen Campbell Jordan married Bill Jordan 47 years ago, ten years before Jim and I tied the knot.  Kathleen and Bill have three grown children - Christopher, Geoff and Suzanne.  Chris has disabilities.  Suzanne came to the cottage with us one summer to help us look after Nick and Natalie.  Our two family experiences are intertwined in many ways.

Twenty-six years ago and the day after we received Nicholas' diagnosis of severe brain damage, Kathleen arrived at our door.  Here's how I wrote about that day in my book, The Four Walls of My Freedom:

At that time, my husband Jim was on loan from Foreign Affairs to the Prime Minister’s office and would come home near bedtime to feed Nicholas, still suited, watching the news.  Word spread in our family about the “condition”.  A cousin came over with a friend to give advice.  The friend’s business card read “Volunteer Consultant to Families with a Child with a Disability”.  Her name was Kathleen Jordan and she had a son of sixteen with incomprehensible difficulties.  He was blind, had cerebral palsy, Tourettes syndrome and epilepsy.  I started to examine this blonde woman in my living room.  Her nails were beautiful; they were glossy red and perfectly rounded.  I asked, “How is it you have time to do your nails?”  I really wanted to know. 

Kathleen had a huge pile of papers with her.  She patted me and said “I have some information here, but I completely understand if you want to look at it some other time”.  “No!” I cried, “Give them to me now!  All of it.”  Years later, I heard the expression “cognitive lifeboat”.  In that moment, I found mine, and, gasping, climbed aboard.

 Kathleen Jordan would become my mentor in parenting and advocacy.  With Kath at the helm, together we toiled night and day to put "Lifetime Networks Ottawa", or LNO, on the map in our city.  LNO was (and still is!) a family-driven social enterprise designed to help parents plan a safe and secure future for their adult child with disabilities.  (It is an affiliate of Planned Lifetime Advocacy Networks in Vancouver.) Part of our family's future planning always included a retirement for Jim and me.  I knew that we would crumple under the weight of Nick's dependency needs as we aged, so transitioning out of a primary caregiver role was for us, do or die.  But Kathleen has always been a caregiver - first to her own mother and mother in law, to her dear family friend Doris, then to her husband Bill until he died this week.  And until recently, Christopher.  Two days before Bill passed away, Chris celebrated his 40th birthday.  Nowadays, he lives with a helper in his own apartment

 Kathleen created those arrangements for Chris after years of trials and errors.  Christopher has good days and bad days - on good days, he can direct his own care, tell his helpers which medications he needs, call friends and carry out many activities of daily living without assistance.  On bad days, Chris needs almost total care.  Kathleen always wanted supportive housing arrangements that would allow Chris the flexibility to be in charge of himself on good days, but give him intensive care when he needed it at other times.  Arrangements like that don't exist in our system, hence the failures that occurred in the past.  But Kathleen and Bill persevered and now Chris has a good life.  

Bill Jordan was a rather old fashioned man of values.  A larger-than-life man of great wit, Bill only ever had eyes for one girl; Kathleen.  He was a deeply loyal and loving family man of faith and character.  Today at Bill's funeral, the church was filled with legions of Chris' former caregivers.  Some of them refer to Bill as "Dad" - all are extended family.  
With Christopher settled in to his apartment and Bill gone, what will Kathleen do?  Who are any of us if we are not caregivers?  This was the question I asked myself as I hugged Kath.  Over the coming months, once again, I will learn from watching my friend.  As Kathleen begins her new journey of self-discovery, I will be there for her as she has always been there for me.  Rest in Peace, Bill.

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