This story from Peggy of Colorado Springs, Colorado, is from September 19, 1997 . . .

Last December my eldest son died. He had had terminal cancer for 5 years. We were 1800 miles apart but I visited him and his family whenever I could afford to. I flew out to see him 3 days before he died, and watched (with the hospice woker and his wife) him die. He was at home and for the rest of the family life went on as usual. The only regret that I have is not understanding that the dying (even though in a coma) can be communicated with.

I had read Elizabeth Kubler Ross and knew that the sense of hearing is more acute before death, but did not know what I might have contributed to a comatose son. The hospice worker was very loud and seemingly insensitive. She was being paid for her vigil. I wanted to scream out at her to "Shut up".

It was after my son's death that I came across a book called "Coma" by Mindell, that I realised there is more that can be done for a comatose person, and as I said earlier I wish that I had read the book before he died.

I am now a caregiver to my husband who is quite sick and somehow the effort is resented (by me). My husband is 74 and my son was 44 and I just wish I could have done more for my son.

Love, Peg

    

    

This story sent by Kimberly Citro of Edison, New Jersey, June 20th, 1997

I have been both Care giver and Care receiver.

I spent a good part of a year helping assist a friend dying of breast cancer. The honesty level went way up. The sobering sense of the wonder of life was around us. Even when she had come to the acceptance that life as she knew it would be ending . . . the beauty and wonder of it, the love and desire for it did not cease.

One of the things that we would speak about was how the de-humanizing messages and treatment were so grievious. A number of times she would ask long-time friends to leave her alone with me because of the way I would acknowledge her humanity in all her weakness, frailty, inner power and faith in honesty. I would touch her frequently, embrace her and massage her. I ended up doing 'medical' procedures like cleaning shunts, starting IV's and even helping with a catheter. I surprised myself at the strength that rose up within me when the need arose. Thinking about it, I came to the conclusion it was because I didn't see tubes and medical paraphernalia but saw another human soul in need. I was blind to the 'stuff' and focused on the person I loved. Someone who really needed another's strength to draw upon. Physically, emotionally and spiritually she needed comfort and to be built up . . . have her strength mirrored back.

Another very important issue I noticed was that her sister helped a lot with advocacy. When you are in need it is a very difficult time to advocate on your own behalf. It was necessary for us to reflect the choices presented to her and empower her to make the decisions she was confronted with regularly. Then she needed others to be strong and undergird her to help express her decisions. She at times really needed an advocate to plead her case and aid her in taking charge of her own life. I even saw how often this would need to be done while the family was tired, drained and depleted—yet they did rise to the occasion and succor her.

As for my own care-receiving needs they occurred when as a homeschooling mother of three I contracted a debilitating long-term virus. I received a lot of help from my parents and friends. As a mom my primary concern would be for the care and nurturing of my children yet I could not be there the way I would desire. So primarily the biggest need was food and safety. Right back to the beginning—food and safety. My friends—and even acquaintances—delivered food. They would give the instructions to my pre-teen daughter who either followed the directions or passed them on to Nana when she arrived after work.

The most helpful thing I could say is think about what you would need in that situation—if you had no one—then offer to do it. One mom would go to the organic market for me. Many made easy-to-reheat meals and treats for the kids. A couple of moms would bring over their kids to play outside—another thing was that I couldn't be alone or I wouldn't be able to eat or drink. So . . . none of the normal picking up of the kids and going back to their own house for day. It is important to ask what the person needs and offer options. Honestly if some people didn't offer me options I probably wouldn't have thought of it myself and just said forget it.

Because I had a virus I understood the "lack" of touch. But one of the things that really impacted me was the loneliness. Especially from going from active to bedridden. It gets old quickly. I still wish some people would have been a little more sensitive and just stayed with me for companionship. The physical help was such a blessing but I really needed a comforter. I have heard it said that sickness and death make Americans very Un-comfort-able . . . unable to comfort well. This I have come to believe but hope that with more education and dialogs like your book this will become a more Comfort-Able place for all.

Peace . . . Kimberly Citro

    

    

B.A. Nelson, of Lancaster, Ohio, sent this story on May 26th, 1997

I am a caregiver for my husband and I am also a teacher of Psychology. I have nothing brilliant or even new to add to the growing lists of 'how-to's and 'what-for's. In the last years I have come to be amazed at the changes in me — I have become assertive (for both our rights), patient (and forgiving when I am not) tolerant (of what is important) and adaptable to life's changes (the only thing predictable in the last years has been change). I have learned that caregiving can be tiring, lonely, frustrating, costly and educational. I didn't ask for this role and people often ask why I continue. I don't know — I simply cannot think what it would be like to stop.

–What is so sweet as to awake from a troubled dream and behold a beloved face smiling upon you? I like to believe that such will be our awakening from earth to heaven.” —Helen Keller

    

    

Elliot Brodsky of Vestal, New York sent this story on May 22nd, 1997

Many years ago, 1970 or thereabout, when portable video systems were first available (black & white), I felt it would be wonderful to offer to record the feelings of terminally ill people, especially a parent or grandparent. It was difficult to get permission to do so. So many people didn't understand video. Many family members thought it was morbid. I thought—and still think—what a wonderful way to leave something of yourself to a small child, who when they grow up will have no recollection of you, your spirit, your values.

Over time I was fortunate to do many videos. In those days there wasn't any structure . . . I just went ahead and made it happen. I haven't done anything like that in many years . . . but if I knew I was going to die, I would want someone to tape conversations with me to show to my grandchildren.

Thank you for allowing me to share this with you.

"To relieve another's pain is to relieve one's own, and to relieve the pain of God, who shares in all the pain of the universe.” -Matthew Fox

    

    

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