more stories of Caregiving & Caregetting . . .

caregiving stories

May, 1997 to June, 1998

(Also read stories from January, 1997 to March, 1997)


Read excerpts from maggie's new book, Caring in Remembered Ways, which celebrates compassion as a way of life. Order your copy.

    


This came to us from M. Mahan of Cayucas, California, on June 17th, 1998...

I cared for my husband's grandmother (95) who was of full mind but physically at the end of her time. Slowing down to care for her was so relevant to being in the present with her, all the way until she died. I was a busy woman before I cared for her, thinking I was contributing in great ways. I know now that it is in slowing down to the speed of nature, which is wonderfully slow, that I am the most content and most giving. I am so enriched by the experience of caring for her, she gave me so much more than I know I could have ever given her. When someone "passes," truly I am joyful to those who were there at the end to receive the last anointing.

    

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Journi, of San Antonio, Texas, shared the following with us on April 17th, 1998 . . .


I hope you won't mind the intrusion, but it is late, I have my father asleep (I care for my elderly father) and I am so enjoying the quiet that I don't want to go to sleep even though I know I will not be a happy camper in the morning. :-) I found your address surfing through the Caregivers' Ring and thought you might be interested in the following information.

I run an e-mail list for caregivers. If you, or anyone you know, might be interested, I would love to offer the information. I can be contacted personally for information, or subscription to the e-mail list can be made by sending an e-mail to:   sandwich@mylist.net.
In the body of the message type:   "subscribe sandwich".
That's all there is to it!

Again, I would like to apologize if my message to you is an intrusion. I just want to try and get the word out to as many caregivers as I can. I found the isolation in my caregiving role to be, in the beginning, almost intolerable, which is why I created the list!
Thanks for your time!

Journi in San Antonio, Texas
I have been caregiving for my 79 year old father for two years
journi@mylist.net
or
mikeelee@swbell.net

http://www.mylist.net/journi


    

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Terri, from Natrona Heights, PA gave us this story on April 6th, 1998

I am the wife of Vietnam Veteran. I became a caregiver in 1993 when we were told that my husband of 23 years had only ten years left to live. He is suffering from a number of illnesses due to his exposure to Agent Orange. We take one day at a time and try to live as normal as possible. I treasure each day that I have with him and pray that God will let me keep him with me. We have good days and bad but we try to look on the bright side of things. Each day together is just one more memory to cherish. Remember to smile and laugh, keep your spirits up. There are times when I would just like to crawl under a rock and hide but I know that I am needed so I just ask God for the strength to go on. I'm not a professional I'm just a wife who loves her husband. I would like to get in touch with other wives who are facing similar situations. We must stick together and offer support and understanding to one another.

You can contact Terri at: tmkc@usaor.net
ICQ: 2668117


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I received this from Chris Lemire (Boulder, Colorado) in January, in response to a letter I'd sent out to caregivers. Included in the letter were five questions:

1) Tell a story of care you've given—be it emotional, spiritual or physical—that helped a person in your professional or personal keeping feel particularly comforted.

2)What specific care did you, yourself, receive during a time of stress or illness, that made a better difference to you?

3)In general, what makes you feel most cared for? When you're well? When you're ill?

4)Include caregivers' and caregetters' comments and stories you feel might be of interest, or heart stirring.

5)Please tell me a little about yourself and what moved you to respond to this letter, also any other questions you can think of that might be good to add to this list..

Here are Chris' answers to these questions . . .


1) Tell a story of comforting:

As a home and private duty R.N., I found that I could best comfort my patients by sitting with them, by being fully present and attentive and sitting right by the bedside, quietly holding the space. Of course, if it was appropriate for the person, I would hold their hand or have some kind of gentle touch. It was very important to be focused and calm in my heart with my breath. Then I was more finitely sensitive to the needs of my patient. Our more verbal communication seemed to be heightened. I tried to show my patients I truly cared for them and loved them.

2) My own specific care:

I was once in the hospital with mononucleosis as a freshman in a new high shcool. I was under considerable social stress, meeting new friends at such an important developmental stage. I felt sick and uncomfortable. The greatest comfort I received during my hospitalization was from a nurse's aid who really connected with me. She treated me as if i was her only patient to bathe and care for, and she nurtured me with her caring and love. I wanter her to be at my side constantly. She made such a lasting impression on me that I have tired to comfort my own patients in that same manner, by showing them they are special, and that I really care to comfort them.

3) I feel most cared for:

both when I am sick and well, when someone close to me takes the time to be with me, fully present and attentive. When I am sick and they are there for me, I know that the love is unconditional.

4) My own heartstirring story:

My mother was dying of pancreatic cancer. I flew from my comfortable home in Hawaii to the cold Midwest of Wisconsin, to care for her. I wanted to give her the opportunity to stay at home during her dying process. This was my chance to return some of the love and nurturing that she had given me.

It was not easy. It seemed her personality and demands were exaggerated beyond my expectations. She did not receive my help easily, I believe, because her own inner struggles were overwhelming. I also found myself struggling with old childhood behavior patterns triggered when mother's and my personalities met. The stress brought out deep emotions on many levels of our family dynamics.

Mother and I took the opportunity to talk about deepseated feelings that were never shared before. It was the time for clearing misunderstanding and drawing closer to one another through the heart and loving. What was once an unconscious holding back of love through certain conditions that were not being me, we had moved to the place of loving without conditions—unconditionally. That is the pure essence of love. As mother and daughter we had reached a place of peace. As soul to soul, we were one. And my being with her through the last days of her life was truly a blessing and gift that she gave to me. In a symbolic way, I look at our sharing as almost a reverse of roles in the two most precious passages in life. Mother birthing child into life, and child birthing mother into death.

In the last week, Mother's consciousness left her present world and dropped into a deeper world as she seemed to review her life back to her beginning, to her childhood. I held the space, stitting next to her bed in quiet vigil, in prayer and mindful awareness. I could no longer carry on a conversation with her but I talked to her, wrote and read her poems, held her hand, and stayed with her as much as I could. She had said earlier that it was very comforting for someone to be with her in the room. My father and I were blessed to be with her when she breathed her last breath.

5) About myself:

I am presently the mother of three beautiful daughters. One is a young adult, one is coming into the age of reason at seven years and the youngest is a toddler. Before and during my childraising, I have had extensive experience as Home Health Care and Private Duty R.N. I love people and being a mother is my absolute favorite career. Both mothering and nursing give me a chance to give of myself in a nurturing and loving way. I am a gentle person, and kindness, love and compassion is my Tao, my spiritual path. God bless!


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It was my visit to the Human Service Alliance in North Carolina which sparked my co-founding of Neighborcare, a volunteer group on our Maine peninsula, offering free-of-charge services to our neighbors with health-related illness or injury. See my bio page for more information.

The Human Service Alliance work and purpose is to realize and unfold the idea that ordinary people, with jobs and families, can serve others in extraordinary ways. To give 3-D proof that, with Commitment and Love, the ideal of effective, efficient, impeccable group service can be a reality.



    

Recently I received a caregiver's story I wanted to include every word of for you. Because the story is longer than the other stories we've included so far, we're giving it a page of its own. Just click here to read this story written by Laura Smith. It was printed in The Forum, a newsletter of the Association for Death Education and Counseling in July 1996. We're honored to have it.

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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

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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



–It is one of the most beautiful compensations in this life that no man can sincerely try to help another without helping himself.”
-Ralph Waldo Emerson


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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


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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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maggie davis
207.266.7673
PO Box 370, Blue Hill, ME 04614-0370
e-mail: maggiesdavis@gmail.com

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