Tuesday, June 7, 2011

My history and goal for this work

I started my work in early 80s after asking (demanding) God give me a mission. In a few months I met Carlene with home care (in days when insurance paid for round the clock RN's in home). She asked me when "time comes will you talk me through it?" I didn't know what would be helpful or if I could be there as I lived an hour away. But when she die I was there and it very special time for all of us, her family, I and Carlene.
After she died I saw how important to be there with suppport and to help for so they have ideas what can be done to help when I seems hopeless. I went on to develop educational materials for families, giving ideas on what to say and do so people not be abandoned in last hours. Later I expanded my concept of what is "family"  to include all loved ones. Husbands and lovers of gay men living and, at the time, dying with AIDS, taught me a great deal about love and being at the bedside with tenderness and care.

The next step in this journey, I literally ran into Mother Theresa in the Miami Airport. She instructed me to open my heart and serve those who were alone and loosing the fight against AIDS.

In late 80s, Marianne Williamson took me under her wing, gave me a way to begin to serve in developing program for men and women living with AIDS . She supported us in so many ways, including bringing wonderful people to help. Volunteers learned what to do, then went to the bedside 24 hours a day to be there with love and support.

Michael Weinstein of AIDS HEALTH CARE FOUNDATION provided us an office, supplies and an opportunity to serve in the hospice. We formed non profit in early 90s, Project Nightlight, and continued our work. With the help of AIDS PROJECT LOS ANGELES, Danion Brinkley, author and speaker and Cherish Birch, Vice President of Paramount Studios, we were at the bedside, expanded to several areas around US and had an extensive website to teach and support. We called our organization Project Nightlight. Lucia Capacchione, Leslie Jordan and chaplain Michael Esalun joined our Board and guided our growth.

We no longer provide service but focus on inspiring, teaching and empowering others through educational materials, talks and workshops, and book simply written of ideas, hope and stories, called a Guidance Though Death.

We are working on getting a web site back on the Internet with an opportunity for conversations enabling people to share experiences, concerns and ideas. Would you like to be involved? I would love to have input on what I am writing. I would also like another book we all write together and share what can be done to care at this most important time of life. Would you like to help with your experiences and skills?

4 comments:

  1. Dear Cassandra, Just reading your aricle has helpe me already, but I lost my own mother at the age of 62 & I was here primary caregiver. Wish I had known some of these things, although I think some come natural if a family member is already close.What prompted my search tonight, is trying to find out, when is an appropriate time to call an extended family member when they are dying of cancer. (probly not ever)She has a loving husband & hospice.We are in another state.Any suggestions??

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  2. I need very simple steps to help my mother, esp when we had difficult feelings between us. I am too stressed to read a lot.

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  3. I am very sad to have missed your comment. Please let me know what happened for you both. Steps: come near, touch, hold, soothe, reassure. Look deeply to speak to her way inside. Know she hears. When it gets close say, "It is OK to go". "You did the very best you could do." If you can, tell her you love her. Just say the words. Tell her you are sorry you could not be more loving, but it was very difficult for you.

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  4. Dear Michelle, I see you have become a friend of this site. I am very happy you have reached out in support and interest. You may have read my recent comments that due to my unfamiliarity with this process I did discovered your friendship. If you wish it would mean a great deal to me to know a little of your interest. I was recently interviewed on Public Radio. Perhaps you would like to listen at http://www.scpr.org/programs/offramp/2012/06/06/26828/facing-death-the-story-of-project-nightlight/
    Cassandra

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