more stories of Caregiving & Caregetting . . .

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.


Dayna of Dallas, Texas, sent the following to us on March 13th, 1997

I can't believe I found this place.

Our story is not unique, yet, it is indeed unique. Our beautiful, adorable, precious children are perfect! They may be called "handicapped" but they are perfect to us.

Our sweethearts are named Barak and Zechariah. They have physical and mental impairments which require much care from us. They have both been hospitalized numerous times for a variety of problems. As you can see their daily lives are not necessarily routine. We experience many ups and downs as we go along.

I said that our story is not unique: it is not unique when compared to other family's of special needs kids. I also said it IS unique: we have a pocketful of experiences that most of our friends know nothing about, cannot even imagine.

I find my words, thoughts and feelings being expressed so similarly when I listen to other parents of handicapped children. I hear people telling of the loving ways their children relate to them—our boys always have smiles and hugs for us and many other acquaintances also. My heart melts when my sweet little boy giggles at me for no reason other than the fact I walked into the room. Barak's eyes twinkle like Christmas tree lights when he smiles at you and you feel like you are the most wonderful person in the world to him at that moment. His animated way of wiggling his arms and legs when he greets me is endearing and joyous. I am always giggling back at him because he is overflowing with laughter and joy. Zechariah has a typically shaped mouth for the particular syndrome he has. It looks like to me that he is always on the verge of giving me a kiss. What better way to begin a day than with a sweet little kiss? When he cuddles with me I feel like I am in love in a brand new way every day.

So our story has begun to be shared. I could write many more pages of happiness overwhelmingly outweighing the hardships as we live our lives. I sometimes feel like I am receiving more from our children than I am giving. Isn't that interesting how that works out?

–We must be willing to accept . . . the bitter truth that, in the end, we may have to become a burden to those who love us . . . It takes heroic charity and humility to let others sustain us when we are absolutely incapable of sustaining ourselves.”
No Man Is An Island, Thomas Merton

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this story came from F.S.C., of Vancouver, British Columbia, March 1st, 1997

About care-giving (a stream-of-consciousness sketch of events and feelings; my apologies for a less than coherent 'story').

My oldest and dearest friend has been diagnosed as HIV+. He didn't want anyone to know so for more than a year only his partner and I knew. Last year he became very ill — passing out (blood pressure too low); unable to sleep; very high fevers. Three weeks of long and painful tests provided no information re: cause. Because he lives in a small town far from large hospitals and because he needed to stay near one awhile, he came to stay with me. (Now I should say I also had another friend in need staying with me. I have one bedroom, an office from which I run my business, and two newly arrived feline companions as well.) I had no idea what 24 hour care would mean.

The struggle began early. I am an action-oriented person devoted to life and to "doing what it takes." I am also someone who believes that each of us has the need, ability and the right to be in charge of their own life. I watched as my friend refused assistance. I spoke with love, concern and logic to persuade him. I could see how a simple thing like driving (which he kept insisting he would do) was a way for him to feel in control but it wasn't safe for him or for others. I recognized that his resistance to taking his prescriptions (some requiring adminstration every 3 hours) and herbs was another way for him to feel 'in control'. Still, I wanted so much for him to take a different kind of 'control' so I cajoled him to eat, to take his pills, to rest.

He didn't seem to know what he wanted — to live or to die (which makes it very hard to cajole!). He didn't seem able or willing to make a choice/commitment to one or the other. He wouldn't let go but he wouldn't take action to help himself either. This was perhaps the hardest and most frightening — I couldn't find his spirit; he'd just shut down. No matter what I did, nothing seemed to help. It was like pouring energy into a black hole.

And one night I cried myself to sleep curled up on the floor under my desk. There was no where else for me to find 'space' for my own care. It had become too much. I just couldn't continue to take on this responsibility alone.

I had people I could call but none that were close at hand. One or two people came by to visit my friend but they would just arrive, expect to have tea and perhaps some food, and then leave. One visitor arrived as I was heading out to get groceries and pick up more herbs and such. She was very offended when I asked if she would mind cleaning up the dishes after her visit!

And perhaps this is my message to other caregivers whose hearts may at times be too big for their bodies. It is absolutely essential that a caregiver has their own support system in place to help with the caregiving!

After a few weeks with me, my friend returned home to where a host of friends and family could help to care for him. Today he is feeling better with the help of some new combination of drugs and herbs. He is not the person he was before (I still have trouble finding his spirit beneath the drugs) but he has rediscovered a zest for life and is happily exploring things he has wanted to explore for many years. I am grateful for this and for my own learning about caregiving and caregetting. Perhaps there is something from this story that can contribute to your evolving story.

"We are night ocean filled with glints of light. We are the space between the fish and the moon, while we sit here together."

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from lesslie of Maui, Hawai'i, February 17, 1997
The following is an excerpt lesslie gave me permission to use—it's from an e-mail she sent me when we discovered each other online.

For eleven years I have had a type of "connective tissue disease" and have spent many months in hospitals and at one time almost had to go into a nursing home (where I would have never thrived) all because there was no 'home care' service on Maui, where I live.

Raising my children alone was my biggest job and I worked very hard to support them working for the State and also running my own business. Until I came to Hawai'i in 1986 I was blessed with good health.

In 1986 I became ill and the doctors thought I had Myasenia gravis. At times I was unable to turn over on my own in bed. Both older children were on their own (also living on Maui) and I raised my youngest son alone with this disease. Many times I was alone unable to get out of bed from morning until night with no one to come in and get me water or help me bathe. What I am trying to emphasize is that I understand the value of what having a helping hand is on the receiving end.

Finally in 1988 the state started a paid program for people with disabilities giving us in-home homemaker and nursing services. It has worked well here and freed the hospitals for more important cases.

I got into programming html's when a friend connected me to the internet 3 years ago. It opened up my world tremendously! I started communicating with people again and was able to give back to the world community through my page. This has been my salvation (funny word for a Buddhist to use) but people who are receiving care need to feel needed as well. The internet and computerized community brings us closer to community and has in many cases created new communities for those of us who had previously been so isolated. I am hopeful for the future of the world and the returning of peace and subsistance living to the other 3/4th of the world who have never known the benefits we have.

Have you read the book, "How Can I Help?" by Ram Dass and Paul Gorman? It is a must read for those who want to help the disabled maintain their selfhood—or one might say dignity. The single most important line from his book to me was this, "Ask, 'What can I do?' instead of doing what you think the person you are helping needs." Many times I have found that when people ask me, What can I do?, they are surprised by what I think is important and I too have asked the question and the same has happened to me.

At times my children have cared for me. My eldest son twice has lived with me and supported myself and my younger son, and my younger son and I lived alone all throughout his high school years when he took care of me and still managed to do wonderful in High School. My daughter has always been there to talk to and to understand me even though she is busy with her own family. My youngest son, to bring the story full circle, is grown and attending Seattle University. SU is a Jesuit College aimed at educating the whole person. My son hopes to be a teacher and maintains a dean's list GPA. I am very proud of him and my other children.

May we all be blessed with good health, great happiness and loving community.

Be sure to visit lesslie's extraordinary website that embodies her hope for the world's future.
Engaged Buddhist ~Dharma Page

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from Jean Hylan of Brooklin, Maine, February 6th, 1997

Three years ago, I brought my brother here from New York City to care for him in his last stages of AIDS. Not sure how I could take care of him, I relied on intuition that this would all just work out, and it did. One friend called another and another, until I had 32 people working in shifts around the clock to help us. A house was found, food was delivered, shopping was done, doctors and dentists made house calls, bills were paid, laundry and cleaning were accomplished, flowers appeared, musicians entertained, massage therapists were found. I acted as the coordinator as well as caretaker. The six weeks that he lived here were compassionate and full of love and caring by total strangers willing to serve. I know he touched their lives deeply, and they certainly touched his and mine.

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from Linda Wilk of Orfordville, Wisconsin, January 20th, 1997

In the past 1 1/2 years, I was caring for my mother, who passed away in October of 1996. She had suffered from multiple illnesses (lupus, diabetes, heart disease, kidney failure, to name a few) and was living in New Jersey until it became apparent that she could not get the care there that we could offer her if she were in closer proximity to us.

We helped her move to Wisconsin in January of '96. To do this required a lot of letting go for me: of statements I had made like "I'll never have her live here" or "she never took care of me, why should I care for her"; of fears, that caring for my mom would take over my life, that I would be inadequate to the task, of her dying; of any predesigned notions of what caring for my mom would look like. Finally, after a lot of prayer and meditation, I found a still place in myself that whispered to me. It asked me why I didn't have the compassion for my mother that I would have for a stranger. It said, how long will it your life so short and self-centered that you have no time to stop and care for others? I found the place of compassion in myself and made a conscious decision to put aside my inner turmoils in favor of offering care to another human on this turbulent path of life.

Ironically, the universe had cleared the way for this, with the preceding events around us moving to Wisconsin, my giving up my counseling practice, not having the general busy-ness of my life back east.

The resulting time has been one filled with pain, beauty, love, turmoil, and most of all the greatest spiritual lesson I could ever have received about living in the moment. For the next 10 months after my mom moved here, until she crossed over, there was not one predictable second in any one day. For myself and my family, this necessitated living in the present to the fullest extent we had ever been called.

I found that this was easy at first, while the call to compassion was still fresh. Then I grew to resent the inability to plan, and got to see how much of a controlling person I really am. I did finally settle into an acceptance of what was, just as my mom was losing her mental faculties. This allowed me to simply be with her wherever she was, and help my kids to be there too. We learned to joke with her about her 2-second memory and take flowers, herbs, and foods that triggered her memory through smell.

I felt good as we approached the time of making decisions about how much more medical intervention would be allowed. It became apparent that she would not "recover." Again I had to let go of some fears and negative thinking to contact my brother to be a part of this decision.

We were fortunate to have a doctor who is very spiritual centered and was able to admit to us that he was having a hard time facing my mom's death because he had his own struggle with facing that there is nothing more humans can do but pray. But he clearly laid out for all us what all the options were, including what my mom's life would look like in the future if we kept on medical paths, and what her death would most likely be like at different levels of stopping intervention.

My mom and I had talked extensively about "no machines" meaning no new tubes, breathing apparatus. But she was on kidney dialysis for the entire year before, so it was difficult to discern where that fit.

In the end, the fortuitous universe stepped in and let me hear the under-his-breath comments of one of the specialists, "It wouldn't be a bad way to go, really..."

"What!" I said, as he looked up to see me. He proceeded to explain that patients taken off dialysis and medication for infection will just slowly drift off and finally go to sleep, with out much awareness of what is happening or pain. So we decided to continue insulin, food, fluids, but discontinue dialysis and antibiotics. If we did not, she would be facing an amputation of her leg from which there was still no guarantee she would recover. She had always said, "If they try to take my legs, put a bullet in my head." I couldn't have done that, but somehow compassion spoke that it was time to admit that the end was here.

It took another week for her to cross over to being freespirit. In that time, she forgot about the wound on her leg and the infection in her body. It was confusing to her why she was in the hospital and then a care facility, but she was too weak to get up and go. She remembered her grand-children's names and who they were to the end, but confused the rest of us with people from her past. She saw and had conversations with people who had already passed over, and kept asking me who that man was standing at the end of the bed in the white robes, motioning to her.

At this point my 10 year old son made the decision that he did not want his grandma to be alone in her last few days and asked me if he could take off from school to be with her. My 8 year old decided that she wanted to keep the good memories she had and said good-bye to grandma at that point. Stefan came with me to the nursing home for the next two days, holding his grandma's hand and talking to her, and asking questions as they came to him...I have never seen such power and clarity in such a young person.

At about 5 o'clock the second day we were sitting with her, Stefan said, "Mom, I have the feeling that grandma doesn't want me to be here when she dies." (At this point she had not spoken or opened her eyes for a day.) I said, "I don't know, we should probably ask her." We did this, holding her hands, and the resulting was a powerful squeeze to both of us and a resounding "Uh-uh" Based on this, we went home to rest and Stef said his good-byes. Three hours later we were called at home to say she had died.

During this time, all of what I believed was called to use and at time to question. The year was not without its toll on me physically. At Christmas, having still not given myself time to let down and grieve, I got the flu, and have been sick off and on since (over 1 month)..I had kept saying through all of this, "I just feel like I can't get my breath..." Now I developed asthmatic bronchitis, and literally couldn't get my breath unless I laid down and rested. Still it was hard to let myself stop moving. Louise Hay talks about asthmatic problems as "stifled tears." That is where I body wants to keep running, but I can't. When I finally stop, I cry — not just tears for my loss of my mom, but tears that feel age old, very deep, about resting and accepting what is. Finally, in this third week of January, I have surrendered once again to what is in my life.

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maggie s davis
324 Grant Street, Ellsworth, ME 04605

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