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Member Experiences . . .

Our Founders PDF Print E-mail

We Found a Thrill at Pendle Hill

by Maggie Strong, adapted from the Winter 1989 newsletter and Maggie's archives

Ten self-selected delegates met at Pendle Hill, a Quaker study center in Wallingford, PA, on the last weekend in October 1988, to bring our organization into being.  The hesitancy and curiosity we all felt before actually meeting each other turned into a shared poignancy about life with a husband or wife who is chronically ill, a life after innocence. The diseases that affect our spouses were multiple sclerosis, diabetes, heart and vessel troubles, degeneration of the brain, and cancer.  Eight of us were parents and we ranged in age from 30 to 57 - an average of 45 years old. 

We met, we laughed, we wept, we stayed awake all night.  Jan's booklet on board process told us that we couldn't keep National Well Spouses as our name because that combination lacked any of the dozen or so allowable code words.  From the allowable list, we chose "foundation" because it sounded best with that awkward word "spouse". Unpleasing to the ear as "well spouse" may be, it does something no other phrase does:  it draws attention to our role in two quick words.  "What's that?" most people respond on first hearing it.  So then we tell them who we are and raise their conciousness at the same time. We've given this phrase to the world.  

In our house called "Waysmeet", we resolved upon a three-part statement of our mission:

  • to provide emotional support to the husbands and wives of the chronically ill through local groups
  • to raise the consciousness of professionals and the public as to our actual role
  • to give strenth to the labor against a spousal impoverishment and for long term custodial care and other innovative, relevant services

We want a base-strong and non-hierarchial democratic organization.  We are you.  You are the Well Spouse Foundation.  We volunteered for the following positions:

Board Of Directors
President - Molly Lazar
Secretary - Dianne Negri
Treasurer - Jan Beaty
Advocacy - Warren LaRoche

Staff
Executive Director - Marilyn Kamp
Support Groups East - Debbie Hawke
Support Groups West - Pam Long
New Member Mail - Elaine Lepkowski & Joanne Watral
Transitional Support for Bereaved- Ellen Phillips
Newsletter - Maggie Strong

We left Pendle Hill with a couple of acorns collected by Marilyn Kamp in hand: connecting wih hundreds and maybe thousands of well spouses was going to be hard work and hard work was the last thing any of us needed.  But the instantaneous bond we felt that autumn weekend bouyed us up - - and being bouyed up was such an uncommon and welcome feeling that we pledged to do what we could to spread that bond to as many well spouses as we could reach.

Pendle Hill- WSA founders

 

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Did You Know . . .

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Note: For 21 years an annual supporting membership, including a subscription to Mainstay and other benefits was $25.  Recently, the WSA Board voted to raise that cost by $5 to $30 in the U.S. and $35 elsewhere in North America. Overseas, Mainstay will only be available elecronically, in the members' area. Had we kept up to inflation the cost today would be $43.50. 

is the only national organization focusing exclusively on the needs of all spouses caring for a chronically ill and/or disabled husband, wife, or partner.  Let others in the Well Spouse Association who have “been there and done that” help you face the challenges of long-term caregiving.

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Playing the Canada Card: an American Caregiver's Experience

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an American Caregiver's Experience

  By CEIL SINNEX Copyright © 2009 Ceil Sinnex             

 My husband John’s disease erupted like fireworks in the afternoon of my New Year’s Eve birthday seven years ago. I went out for the afternoon and returned home to find a stranger who only looked like John, talking gibberish and tearing our house apart at the seams. The siege lasted 16 hours.I thought of survival, not of Canada. As it turned out, survival and Canada would become one and the same.
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