This page last updated on 9/17/12

maggie davis presents stories of Caregiving and Caregetting

Read excerpts from maggie's book, Caring in Remembered Ways.

Says maggie:

"I dedicate Caring . . . to healing professionals and volunteers—all caregivers and caregetters, in whatever setting—who long to be more present and tender, who young or older, joyful or sorrowing, and regardless of world (or personal) predicament, aspire to live purposeful, nurturing lives. In essence, Caring . . . celebrates compassion as a way of life."

Read about maggie's other books

What follows is a growing collection of stories of caregiving and caregetting sent to us by friends and visitors to this site. In order to have these pages load more quickly, we have added additional pages of stories.

This page features:

  maggie's (and others') Bell's palsy stories
  maggie's panic attacks story
  maggie davis' granddaughter's Asperger Syndrome Story
  Stories of Trigeminal Neuralgia
Stories from July, 1998 to the present.
  Please read additional pages:

Stories from May, 1997 to June, 1998

Stories from January, 1997 to March, 1997

Read about NEIGHBORCARE, an all-volunteer joyful band of neighbors offering free-of-charge, health-related service in thirteen towns on the Blue Hill, Maine peninsula—and beyond.

  Visit the Neighborcare Newsletters archives.

Please visit this link:

The End of Life
telling others the story of how a loved one died


Also, this link to a story about

Cushing's Syndrome



Inez Russell, 83-years-old, cares for her 80-year-old husband, who currently resides in the secured unit of a care center. She lives the tragedy of Alzheimer's disease, but wants to share some of her thoughts through her writings. Don't miss this story . . .


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Brenda, of Beatrice, Nebraska, sent this story on November 22, 2002....

I began my career in the healthcare field at the age of seventeen. Today, I am forty-eight years old. I was born in Indianapolis, Indiana and lived on a busy street. Two houses away lived an elderly woman.....all alone. She would seldom retreat from the safety of her home, but once in awhile, she would poke her head out the door if to make sure that no-one was trying to intrude upon the wall she had built around herself. All the neigborhood children were afraid of her and there were never any visitors that I, as a child can remember. Her house sat back from the sidewalk, with a long walkway leading to the front door of the old green house. One day, after much thought, I decided to visit her. It was the longest and most fearful journey, as a child that I had ever taken. It took forever, it seemed, to reach the doorway. Upon arriving at the door, my first thought was that I had made a terrible mistake and was about to turn and run for safety.....when I heard the door slowly creak open.... revealing a very thin, frail and sad looking woman. Her face wore an expression of delight, but at the same time, her fists were tightly clenched upon the doorknob, ready to slam the door if needed. She became the best friend any little girl could have ever had and she remains in my heart today. That was the foundation that I have built upon for the last thirty-one years. I have kept the memory of that very first meeting alive in my heart and always promised myself, from that day forward, that I would do all that was possible to keep others from being as lonely as one little girl's best friend was, before the long journey toward a stranger's front door.

Through the years I have worked in hospitals, nursing homes, rehabilitation facilities, did Home Health and Hospice work, and am presently working in an Assisted Living facility in Nebraska. The hours are long at times and the money is barely enough to keep this single mom (will explain further) ahead, but I would choose no other path in life. The rewards have far exceeded any monetary gain. If I can make a difference to just one person each day, if I can hold a timeworn hand in comfort or celebrate, if i can give to one person the gift of a thousand trumpets blowing....with the sound of their name and sincerity, love, compassion and caring present in all that I say, if I can hold just one person in my arms....comforting them for all the losses that they have endured in a lifetime, if I can turn a tear into a smile.....then I have been given back the one true thing that matters in this world....the love that resides in each of us....that at times gets lost, because of the losses that we have suffered, illness, aging alone, or simply life itself.

At the age of forty-one, I woke up at two in the morning to find my husband, lying beside me, unresponsive with no sign of life. I ran to awaken my then eleven year old son, Eric, if this was the end I wanted him to be able to, if possible, say good-bye to his father. I did not want him to have his father whisked away without that moment that he could remember, holding him or speaking with him. The rescue unit arrived and took over my attempts at CPR. The ambulance drove away and Eric and I followed. Keith's life had ended at the hospital during the early morning hours of March 19, 1996. I was alone, with an eleven year old child....our child....who wiould never see his father again. I was devastated by the loss and my heart ached so for my child, to have experienced, such a loss, at such a tender age. My husband, Eric's daddy, had suffered from a massive heart attack. Our lives would be changed forever.

Eric is now eighteen years old and will graduate from high school in May 2003. He has suffered the losses of nine friends, since the death of his dad. All of them, with the exception of three, have died in car accidents. The remaining three took their own lives. He has experienced such great tragedy in his young life, but remains a very loving and kindred spirit. He has such a loving heart and never fails to tell me he loves me and kisses me good-bye....even in front of his friends.

I will share with you a brief story. For about a month before my husband died, he would return from work and eagerly take Eric and I to this country pond across from a church to see the geese that arrive there each year. It was a ritual that was rarely missed. It was also during this time that Eric began having nightmares, waking up crying, telling us that he had dreamt that one of us were going to die. On Sunday, March 17, 1996 we had our first family portrait done. On Monday, March 18, 1996, Keith arrived home from work and we were discussing the death of a friend whose obituary was in the paper....In the evening, I had this horrible feeling of dread come ovrer me and went into the bathroom and began to cry uncontrollbly, not knowing why. Later that evening Eric awakened after having one of the dreams and we assured him that all was okay and that nothing was going to happen to either of us. Keith insisted that I watch this special on television regarding Hospice and he retreated to the basement to work on his computer. I cried myself to sleep after watching the program and awakened to find Keith at 2am. Eric and I decided to bury Keith at the cemetary across from the pond, where he could always be with the geese....and in the calmness and serenity of that country setting. Everyone knew the story of the geese and our purpose for burying Keith there and on the morning of the funeral, guess what happened? Yes, the geese had started arriving at the pond before the service. When the service had ended and as we walked to the cemetary, hundreds of geese had gathered on the pond. Family and friends surrounded the burial plot as we said our last good-byes and after the pastor spoke the last prayer and the words AMEN were uttered......Every geese on the pond ascended the heavens in unison. It was at that moment that I knew Keith was safe with God and that we were truly blessed to have shared a lfe matter how brief. Each day when I arrive at work, I carry his memory and the memory of so many others with me. Because of them and a little girl's best friend, so many years ago, I continue to give all the love I have to a most wonderful generation of human beings.....who continue to teach me the true meaning of life.



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Dave sent this brief message on July 11, 2002....

People healed of Bell's Palsy, MS, AIDS, Cancer, Parkinson's Disease, Crohn's Disease and Fibromylgia at:

Baltimore Christian Faith Center
10308 Liberty Road
Randallstown, MD 21133
(410) 655-3777


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Gail Mitchell, of New York City, offered this story on April 13th, 2001....

Moving Beyond Appearance

One of the most difficult challenges I faced with my dad in particular was the deterioration from this tower of strength that used to be 6 feet tall and a broad 200 lbs. For two years his body slowly deteriorated, but the last six weeks was astounding.

One day I met my parents to go to a doctor's appointment for my father. I was walking to where they were waiting for me on the street to hail a cab. I saw this man... all I could see was a hat and ski jacket and the image of a human. The sun shown brightly onto him as he stood there. The face was unclear. It looked as if it were invisible and as I neared closer, it appeared almost skeleton like. As I walked even closer, I realized this was my father. In disbelief, I just embraced him, filling my hugs for him with all the love I had within myself.

As the days passed, I began lifting him in to my arms and cradling him. I just couldn't believe it. It was so difficult for me to just look at his body...and I would say to myself, "this is the end," but it would continue. I prayed and mustered up the courage to always stay focused on his mind and soul which were still alert and fully present until his last day when his body finally moved into the final stages of closing down. I seemed to have adapted the attitude that his body wasn't of importance any more.

I remember the night before he transitioned...he was happy with me knowing what my plans were in terms of publishing my journal which he knew I was keeping...he was excited that I was starting a new job the next day, and most of all, he knew in his heart that I was working diligently at moving on with my own life and sharing my gifts with others.

It was that night and only that night that he held my hand so tightly and in a low voice said, "help me Gail" and even now as I am writing this I cried as I did then when I responded to him and said, " You are in the hands of God, Daddy." I have tried everything I could do within me to assist you in love, providing the right care etc.

After, I quickly sought the assistance of Barbara, who was the Hospice Nurse and an "Angel?. We both sat on the bed embracing and supporting my father sharing that it would be safe to let go when it was his time. After about a half hour, he drifted into a peaceful sleep. I went home that night and just cried myself to sleep sending thoughts to my father that it was okay to let go...that he was complete with all of us and that we knew he loved us and he knew how much we loved him.

He was leaving this plane yet his soul knew what was transpiring.

The next day I started my new job and was called by Hospice to come immediately to him as his pressure was dropping quickly. I remember talking out loud to him during the taxi ride, thinking I might not have the opportunity to be with him as he slipped from the earthly plane to the next dimension...

When I arrived, Bob, our Hospice Social Worker was sitting on the bed talking to him.... My father's eyes were closed, his arms and legs flailing about rapidly.... and I sat down on the other side of my father's bed and touched him gently saying that I was here for him. In an instant the flailing ceased and there was a peace that pervaded his body and soul. Bob welled with tears, shared that he knew my father's soul was so fully present in these final stages he was going through. He was amazed how my father had responded to my touch and voice.

When my brother called from Florida, I placed the phone by his ear so that my father could hear my brother speaking...ever so slightly we could see his head shift a fraction so that he could hear.... but my father was no longer on this plane...his soul was preparing him to leave and his bodily functions were closing down slowly and yet quickly. The rest of the day revealed many more experiences like this...

My Mother and I were with my father when he took his final breaths. While he never gained consciousness, his hands firmly held my mother's and he drifted out of his body. He was at peace. It was so incredible to experience this...Such bittersweet memories.... My Mother and I prayed out loud for his soul to lift to the light where his parents, relatives and friends would greet him.

To this day, I've never felt guilt over anything I could have done or didn't do. I knew in my heart and soul that I did everything I could to provide the quality of life, to nurture his soul, and to participate in the choices that my Dad had made as well.

© Copyrighted 04/09/2000 by Gail R. Mitchell



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This comes to us from Andrea, of Decatur, Alabama, on April 10, 2001 . . . .

I am a single 25 yr old woman who has had Bell's Palsy since I was 2 years old. I never really thought much of it until I got older and kids would make fun of me when I attended school. I never thought of it as a handicap or a disfuction of any sort. It was just something that happen and I have no knowledge of the time it happen. My mother seems to think that it happen when I was 2 and I became very sick. I had a really high fever (somewhere around 106). I don't recall that time and I'm not sure if I was taken to hospital or anything. However, I have dealt with this situation for 23 years. My case is not as severe as others. My eye does not droop, I haven't lost in taste, I don't have salivation problems. As a matter of fact everything is normal until I smile or laugh. I have some puffiness in my left cheek but other than that, nothing. When I was 14 (I think!), I went to visit a neurologist and he told me that it could be corrected. However, the consequences was not something I wanted to deal with. He told me that they could take a nerve out of my leg and put it in my face. I was not happy with this simply because I would have a huge scar on my leg from where they would remove the nerve. I have been through rehab treatments to facial exercises to electro-stimulation treatments and nothing has change. If anyone knows of a neurologist that specializes in this and could maybe help me in correcting my Bell's Palsy please contact me. I do not want to go through any painful treatments or drastic operations. If minor surgery could help, I would like to know. I am ready to see myself with a perfect smile instead of a slightly crooked smile. Thanks for any help!



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Sent to us by Zuzi, of Brisbane, Australia, on April 3rd, 2001....

I don't really have a story. I just wanted to say, I am caring for frail aged people and I love every minute of it. I like to give them company, care and love they need so much. And they love me back. And I found it very rewarding and I feel good about it. So that's it. I just wanted to share it with you.



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Scott Taylor sent this story of Ninushka the wolf on October 11th, 2000 . . .

says maggie: "I'm moved by this story each time I read it. Certainly caring between human beings and beloved animal friends flows in two directions."

A year ago, alone in the US, with my wife having already had to return to Australia, I was faced with a most difficult task. My wife had had a Wolf named Ninushka when I met her, a magnificent Being, who had been horribly abused in the early half of her life. My wife had rescued her, provided for surgery to repair her hips and back legs, which had been permanently damaged by her abuse. She had recovered, and remarkably, her spirit was as royal, and undeterred as can be imagined. She was the sweetest and most kind animal I have ever known....

Her health was failing. She had grown very stiff, and was not comfortable anymore. We did all we could, getting her various forms of treatment, but to no avail. I knew the day was coming when I would have to leave for Australia. She could not make the journey. And her loyalty to my wife, and to me, was absolute. No other person could satisfy her Purpose, which, as she knew it, was to guard and protect and accompany us.

When my wife had gone to Australia once before, for a 3 month visit, Ninushka had stayed at the end of the driveway the entire time, waiting. I got her inside once in 3 months.....

So, we knew she could not be given into the care of anyone else. I had to make the decision to help her, out of Love, toward her transition. From Love, to Love.... I asked a Vet to come, to put her to sleep.

Before he arrived, I took her on her last walk. We climbed, very slowly, to the top of the ridge behind our house. There, we stood for a long time. She looked in all directions, repeatedly coming to me and looking in my eyes, putting her wet nose in my hand. She would look into the wind, at the far mountains, or toward the river, wind streaking through her mane of golden fur, gazing into a future I could not see.

She was so calm, so caring as we returned to the house. She stayed beside me, and we laid down together on her bed, at the foot of mine. The Vet arrived, and he set to work immediately.

As Ninushka received the injection, she looked into my eyes, and I saw a Love that stays with me today. She licked my hand once, sighed, and put her head down on her paws. Closing her eyes, she went sweetly off to sleep.

I received a lesson in the size and nature of the Love we are responsible for carrying during this experience. I saw and still feel, the freedom we are responsible for, the decisions we make each day, that affect the entire field of life, and the love that must accompany each act.

If we had seen ourselves as ending Ninushka's life for our convenience, we would have carried a scar, and damaged conscience. Instead, as we came to know it, we had provided the same level of loyalty and care for her that she had shared with us, by rising in Love to another understanding, a higher Truth, of her passage from Love to Love.

It would have been unkind to have left her in the care of others to whom she felt no bond. As it was done, she left us feeling the Immense love we always shared.

Her gifts are with me and my wife today.


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Dee, from Riverhead, NY, sent the following on September 27th, 2000 . . . .

I just wanted to share with others, do not be afraid to get involved, it is much easier to walk away so you will not hurt, but you will miss one of the greatest, enlightening, satisfying times of your life.



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The following story arrived May 13th, 2000 from Verlee of Graceville, Minnesota.

My dear friend of 26 years passed away three weeks ago today from ovarian cancer. She was only 49 years old. Sharon and I have been teachers together at the same school and became very close friends. We traveled together, I was the maid of honor at her wedding and attended the adoption of their daughter. I have been a part of the family for a long time. Last June Sharon's ovarian cancer returned in her liver. I began taking care of her, fixing meals for her and her family, cleaning, being there for her until the last day of her life. I spent as much time as I could making sure she was comfortable and getting her medication, liquids and food. She was a very special person and loved by so many people. She was kind and giving. The children loved her as a teacher because of her gentle way of teaching. I am like a lost sheep right now because I was unable to pull her through this terrible disease. I didn't want her to suffer any longer, but that doesn't stop me from wanting to be able to be with her to talk about old times and the things we were planning to do during summer vacation. I miss her and really wish the pain would go away.



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The following is a story from Bev Stark, of Bono, Arkansas, sent to us on April 9, 2000

We just recently placed our mother in a nursing home in Missouri after being in the hospital due to Dementia at age 88. She had been a nurse at one time, very sharp, on top of everything, and in the last 5-6 years has gradually gone down in memory, hearing, and reasoning. She was in total denial to any of these ailments and refused to listen when anyone tried to talk to her about the, always finding justification in why she did something odd or not just right. She was not taking her blood pressure medicines right and was on the verge of having a stroke when she was hospitalized this last time suffering headaches and lethargy and confusion.

The doctor did a CatScan and diagnosed her with Senile Dementia and recommended she not live alone anymore and to be placed in the nursing home. My sister takes care of her husband who had a stroke 2 years ago, my brother has had several heart attacks and bypass surgery and is on disability himself, and I, myself, work fulltime as an RN in an intensive care unit 5 nights a week. So, as you can see, it was not feasable for any of us to look after her 24 hrs a day. The problem is that she is blaming us for her being in the home, says she is better, and wants to go home everytime we talk to her and gets furious at us saying we have taken all her money and lost her house. She tells us that the nurses tell her she can go home but when we question them they say no one has told her that.

This woman has never told lies in her life that I know of and always told us before that if she got to this point to just be sure we put her in the nursing home where she worked so many years and to just come see her often. But when this time has arrived, she doesn't think she needs to be there. In her mind, we're all crazy and just being selfish and dumping her. We've all run ourselves ragged trying to make it a nice experience for her to no avail. She is mad one minute and sad the next. I feel so guilty about this, I have grieved and grieved over it, but the doctor says it is all part of the disease.

Would love some feedback on this and some help as to how to handle her when we go to see her and if there's anything we could try.

E-mail address:


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Diana Marie Barger of South Charleston, West Virginia gave us this story on March 14, 2000 . . . .

With nearly twenty years of experience under my belt, I set out to write a book about caregiving for both the givers and receivers of such care. Because of what I learned and experienced while being both a professional and personal caregiver, my desire was to offer comfort and practical assistance. I wanted others to understand that caregiving, like most experiences in life can be difficult and even challenging. Yet, for those who approach it with the right tools and attitude, it can even be a beneficial and rewarding life altering expereince. For whenever we extend our hand to offer the bread of human kindness, such compassion is often returned to us in so many small ways. Thereby enriching our lives and coloring our world in shades of hope instead of apathy and despair. When I became a caregiver, most of the books on the market were of the technical type. And there was nothing which encouraged one to view caregiving as an opportunity for growth and enrichment!

There is so much that I learned as a human being on this planet just by being privileged enough to be part of the dignity of dying, rather than the commericalism and politics of mainstream medicine. My book offers something unique, the voice of one who has traveled this journey many times with family and patients. I added many comforting and thought provoking quotes as well as humorous antidotes and receipes. I poored my heart and soul into it as if by doing this I could somehow honor the memory of those I cared for and learned to love. There was so much information that could have been included but my goal was to support and comfort, not overwhelm. I couldn't believe it when I found this site and discovered there were others like me. Ones who desired to make the world a better place for others as well as themselves. How sweet is that! Well, if my words never see the light of publication at least I know, I'm not alone on the planet. By the way, this is a beautiful site! in its construction. I have recently been diagnosed with an eye disease which makes it difficult for me to read in bright light. Love the background here!



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Denise Popp of Janesville, Wisconsin offered this story on January 21st, 1999 . . .

In August of 94, my husband Dan had a stroke, which took the whole right side of his brain. In the blink of an eye, from high blood pressure, our family went from having a husband, and father . . . to a son and brother. We have two girls; our lives changed so dramatically.

Now, here I am in January of '99, being a caregiver to the man I married. His heart went bad, and surgery to fix it is not an option. We live second to second, wondering when his last breath will be, whether a stroke or heart attack will take him from us—either of which will be a major blessing in our lives.

The day of his stroke, all those years ago, I made the decision to take care of him—no matter what—and let me tell you . . . I have learned, yearned, and suffered, but would go back and do it again. I am now a woman who can take care of my family, and the house, and the yard, the maintainence . . . and still work 50 hours a week in a factory making Sport Utility vehicles. I have become stronger, wiser, more loving, and more understanding. I have learned what it means to be self sufficient, and I have learned that selfishness is OK—necessary in fact—to make it through this.

Hospice became involved in our lives 2 months ago, and I have to say, since then . . . they are the Angels that make our lives bearable. Dan is in so much pain, from lack of circulation to his body—the pain meds are literally making him exist in this world nearly pain free.

Our time together is limited, and I pray every day that he will go Home, to be with God, and our loved ones who are there now.

I have come to realize . . . life is so short . . . and death is not to be feared. We have an angel with us, named Andrew, that Dan sees all the time. We walk not alone. I will rejoice when Dan dies . . . for then, and only then, will I know that he will live.



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Sent to us by J.P. of Modesto, California, on January 3rd, 1999 . . .

I am 17 years old. It is January 3 and in a few days I will be 18. Just 3 days ago, my face started to feel numb. I was in San Francisco with my mother and her boyfriend as well as my boyfreind. When we first arrived there I felt a numbing sensation in the left side of my face. I didn't really think much of it until I tried to apply some make-up to my face and couldn't quite put on my lipstick. I am very self conscious about the way I appear so it bothered me a bit. But still I didn't pay much attention. When I woke up the next day and tried to talk it seemed irregularly difficult. I also noticed I couldn't move my eye or mouth. I started to panic and called for mother. When she looked at my face she thought I was trying to kid around with her. She then told me she thought I might have Bell's Palsy. Then she started to tell me how she had also had Bell's palsy when she was 5 months pregnant with me. We then went to the nearby hospital and they confirmed that I had Facial palsy and that there was really no cure for it. I started to cry when they told me it could take anywhere from 2 weeks to 6 months to recover and that some patients never recover completely. I am a very active teenager and have many friends. I was so worried that they may look down on me for this but then I realized that if they are my true friends that they would be supportive of me and try to help in anyway possible. I was right when they found out and saw me for the first time everything went fine. They tried to reassure me that I looked normal and they couldn't tell. Even though I knew they could, it made me feel a lot better knowing they were trying to help. We then started laughing about how silly the whole thing was to get upset. They told me that getting upset could only make things worse. So we carried on like nothing had happened. My family has also been helpful; I am reminded to take my steroid pills which I think have been very helpful. I also give myself facial massages with vitamin enriched lotions. I have also been applying a warm moist towel to my face at night to help with tension. The part I take care of most of all is my eye. I make sure to keep it patched up when I am at home and if I go out and am too embarrassed wear a patch I wear sun glasses that fit snugly. Also, I am doing facial exercises manually to my left side while I do the same with the right normally. I feel this will help me with sequencing and muscle upkeep until my palsy bout is over. I am just thankful that my friends and family are there for me to help me through the ordeal. I feel that support is the best chance I have at a speedy recovery. Thank you for giving me a chance to speak about this.



Also read maggie's Bell's palsy story


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a story from a anonymous Neighborcare volunteer, from early November, 1998 . . .

He came to Maine, to his loving sister for care in the last months of his life. She set him up in an apartment and did a heroic job finding round-the -clock care for him—mostly volunteers. I spent Saturday nights with him, though sleep we rarely did. We talked for hours, napped for minutes, listened to his classical music collection. He revisited his days as a dancer and as a chef, his loves and his church, and many in his tribe of gay men who had gone this path of AIDS before him. We'd lie together. I offered what I could—only the warmth of my healthy body curled against his bony spine; what he offered me was far greater still.

In later weeks, the talk was more disjointed and hallucinations often his reality, so vividly did he describe them. He said we should get married, he, a gay man on the brink, and I, a wife-mother already. But I knew what he meant for I've never been more intimate with anyone than I was with him. He glowed near the end, and I swear with all humility that I saw God through him.

When he died, I raised my cry over the water—mourning, yes, but more in unbounded thankfulness for having had him that short time.

I was just one of many volunteers—I hope they were all so touched. So poignant are the gifts of the dying.


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Here is a story from Lee Espada of Deltona, Florida, from September 23rd, 1998...

I remember like it was yesterday... my Godmother came to visit me. I have not seen her in about 13 years even though we talked on the phone and she almost raised me since I was 5. I remember her giving me the best vegetable soup I have ever had. Well, they told me she was sick with cancer but nobody prepared me to what I encounter. She was waisting away she couldn't walk stuck to a wheelchair. I could not do anything but cry because she used to be so alive and because I knew I was going to loose her soon, she moved next to me and I would cook for her, take her out and read her stories like she used to read me before sleeping. I put my head on her chest and I could hardly hear her heart it was so weak her hair had fallen and she was too skinny. I did everything I could to make her feel good, she then said she needed to go see a friend and I knew that my sweet Godmother was ready to die she knew it thats why she spent the time with me. I could not let her go but I had to. I hugged her and kissed her and she whispered in my ear you will always be my baby girl. And I will see you in heaven and right there I knew I was not going to see her again. I had to take a trip overseas and 2 weeks later I received that phone call from my mom. I can still hear those words. Your godmother passed away. I felt like someone shot me in the heart and I started to cry and I could not stop then suddenly I felt something gently tap my shoulder. I looked but there was nothing there and then I felt an inner peace and I knew that she was in heaven in a better place with God, angels and her friends and with my dear Godfather and then my sadness went away and I felt her near. I knew she was going to take care of me from heaven like she did when she was here and I felt happy. Loosing someone hurts but knowing that they are in a better place with people they love gives you a sense of peace and I know that she is always here for me. She may not be in a body but she is here as my gurdian angel. I can feel her precense when I need to make a decisition and I don't know wich way to go. I can feel her precense helping me to make the right decition and I have comfort to know that she is still with me. The only difference now is that she finally got her wings.



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D. Creeksong sent this story to us on September 11th, 1998, from Blue Hill, ME

I had yet to find a job, and thought perhaps I could take my mind off my own worries by assisting people in worse circumstances than my own. Barely able to pay rent and buy food for myself and two children, I became quite aware of a homeless shelter in our town that was coursing with people from all walks of life, but especially the most beaten.

If not for a child support check that I could count on each month (even though it arrived later each month), what made me that much different? It was a frightening thought I rarely allowed myself, and with it came lessons on what caregiving could be when coming only from caring—not from fear, or a need to be "better than" so as to create a separation from that fear, or even a need to feel better about myself.

I visited twice-weekly, after making the rounds of supermarkets and health food stores, gathering vegetables and fruits not pretty enough to be sold (but great for soups and fruit salads) and day-old breads. Arriving with the back-end of my wagon packed and brimming, a few workers from the shelter grabbed helpers for unloading.

Many of these folks I would have normally been afraid to meet anywhere, at first appearance they were so mean and frightening to look at. Indeed, I was a bit scared to be bringing my young son along. But my repeated drop-offs began shifting their guise, or was it also that I began to really look at them, really see them?

Now when I pulled up to unload, I received no scowling because of the football tossing I'd interrupted by backing around. Once frightening faces melted and warmed as they caught my eye, carefully parting as if in choreograph to allow a place for my turn-around, football held in check. They stumbled over each other trying to help me unload, the workers from the shelter not needed anymore. For me, fear of "scary" faces dissolved: for I realized some of the softest (also frightened) hearts hid behind them, and to recognize the softness—and not respond to the face—shifted our connection at once.

But is was "Old Man Mike" who was to teach me the biggest lesson of all. It took weeks before he even spoke or acknowledged my "Hello". Sitting in the same chair each time I pulled up, he was a study in internalized depression; his eyes looking right through you or stopping somewhere in front of you.

When he did begin to speak, it was the same sentence each time: "Just bring me chicken soup with dumplings." I'd never made a dumpling in my life and I told him so, but I did make a pretty mean chicken soup. His response? "Just bring me chicken soup with dumplings. I promised him I would. Next week.

Well, I practiced those dumplings. I was known for my cooking and couldn't take the chance of bringing him a batch of dumplings that, I'd heard, could sink like bricks in your gut. One practice run did it, and on the next delivery day I made a fresh pot of chicken soup and dumplings and took them to Old Man Mike before the delivery run, so he could eat it before lunch was put out for everyone else.

A strange light turned on in his eyes when his hands took the container. I had to wonder when the last time was that he had been given something he really wanted. We followed him inside to the lunch room, but instead of sitting to eat it, he looked for a place to store it for later. "Please try it so that we know you like it," I pleaded. He seemed a bit upset, still wanting to put it up. "Just one bite?" I asked again. He sat down to a table, pulled off the lid and took one bite. But the light had gone out in his eyes.

It would be a while before I could admit who I had really made that soup for.



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This story came to us on August 27, 1998, from Kelly & Annie St. Jean of Okotoks, Alberta, Canada . . .

On July 19, 1995 my family's life was changed forever. Our almost 15 year old daughter Lonie was diagnosed with Hodgkins disease. She had an adult size tumor on her right lung. She went through the normal protocol of 8 months of chemo. We were so proud of her. Even through her struggles with this awful disease she was an honor student. When (she was) done (with) her treatment in March of 1996 we thought it was licked but a CT scan in May showed that the tumor had grown again. That summer Lonie went through vigorous treatment—a stem cell transplant and radiation treatment until the middle of October. She was feeling great. Our family, which includes my husband, myself, our son and daughter Lonie went on her wish trip to Disneyland. It was the best of all times. In December 1996, we received more bad news: the tumor had grown again but also had spread to Lonie's left lung. All that was left for us was experimental treatment. Lonie decided to go ahead with it—three courses of it treatment within 9 weeks. After the second treatment we were told it didn't work. My whole heart went out to her. She was so brave. Lonie came home in March and stayed at home. Her dad and I were her caregivers throughout this difficult time. It was Lonie's and our decision to keep her at home. We eventually had to ask my husbands sister to come and help us (she is a R.N.), and also another mom whose son went through treatment also, was an R.N. Our daughter Lonie passed away on April 16, 1997. We are still trying to cope with her death. I wouldn't have wanted her death to be anywhere but at home with all of our family.



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Susie Thompson, of Santa Rosa, California, sent this story on July 18th, 1998 . . .

My mother began having symptoms of a disease called Creutzfeldt-Jacob Disease, or CJD, in the summer of '96. In the beginning she had pain in her extremities and a dry cough. This progressed to include balance problems and later dementia, finally resulting in her death in March of this year. She was at home during her whole illness.

We tried to take care of her by ourselves at first. It was very difficult because although she was my mother, at times I had to treat her like a child because of her dementia. She would lash out at people and I would actually have to give her choices as you would a child. This was one of the most difficult aspects of caregiving.

My father and I also learned the importance of taking care of ourselves. It is very easy to run yourself ragged and not think about yourself. But you can only do this for so long. Thus, we had to hire help, in the end.

One of the most important things we learned was to be very selective about the help we employed. We were given advice about not keeping someone who wasn't working out for too long. We didn't have enough time with my mother to have her have care that was not the best. Therefore, if we didn't feel like someone was loving or efficient, we would not keep them on. This resulted in our having an incredible team of caregivers. I would definitely pass on this advice to anyone caring for their dying loved one. It made all the difference in the world.

We also had meetings about every two weeks with the family, the caregivers, hospice employees and a facilitator. These meetings were invaluable. We discussed Mom's changing condition and needs. We also solved personel problems and created much more of a team environment. I believe that these constant meetings raised the quality of my mother's care a great deal.

I know that my mother felt well cared for and loved in her last days. That was our goal. We worked very hard to acheive it.

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This story, submitted on July 12th, 1998, is from Linda Lesher of Fort Wayne, Indiana . . .

Mom, why are you following me so closely? I was thinking this rather irritably as my mom, my friend and I were shopping. As the day wore on she walked too carefully. When we stopped to eat she got lost in the restaurant. On the way home she told me she could not see. New glasses a few days later did not help. My sister called me the next weekend to say something was wrong. A second eye doctor said nothing was wrong with her eyes. A stroke was suspected but the tests were negative. Within three weeks she did not know her family. A trip to I.U. Med Center confirmed Creutzfeldt-Jakob Disease. Mom died 5 weeks after the day we were shopping and she followed me so closely. We were looking for fabric so she could make curtains for my kitchen. I don't beat myself up for the irritation I felt that day after almost stepping on Mom a few times but I wish she was following me closely again.

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The following came to us on July 3rd, 1998, from Rob, of the upper Sacramento Valley in California . . .

Fifteen years ago, we lost our daughter Debbie to cancer, Wilms' tumor. Here's what happened. We belonged to a church that said "don't go to doctors." So we delayed. Finally, after taking Debbie to the doctor, (we listened to extended family, rather than the church), we still lost Debbie. I want people to learn from our experience, so they won't have to repeat it....

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The following story was sent to us anonymously. . .

When my father was in his mid-fifties, his health began to fail. He had always be hale and hearty, but now he was constantly sick. He was eventually diagnosed with cancer. He had a long and protracted illness, becoming completely bedridden for the last four months. My mother was forced to continue working, both for the income and the health insurance, so she needed help giving him round-the-clock care. At first, my sister (a stay-at-home mom) and I would alternate shifts. But when he could no longer get out of bed, it took both of us at once to care for him. So we both moved back in with my parents. Since her home was only ten minutes away, she could zip home for a few minutes every day and see her kids and husband and they dropped by to visit every day. My home was about an hour away, so I did not have that luxury. I "visited" my husband and (then) five-year-old son on the weekends when my mom and aunt could take care of my dad. We took good care of him, making him as confortable as possible. But I constantly felt that there was something more I could or should do, but for the life of me, I didn't know what. My dad and I spent hours holding hands, talking, and remembering. In some way, this was a very special and important time, because for the first time in our lives we actually talked. I think he finally began to understand some of my actions and even start to like me as a person, not just love me as a daughter. We had always been close, but as I reached adulthood, I wanted to travel and go to graduate school, he wanted me to marry, settle down and have a family. I felt there was plenty of time for those things later, I wanted to have fun! Our vastly different visions for my future resulted in very hurt feelings on both sides and an ever widening gulf that became impossible to bridge. The worst thing imaginable (to my southern born-and-bred father) happened when I finally decided to marry a transplanted yankee. During the later part of his illness, as we spent long evenings talking, we finally made our peace with each other.

You wanted to know about the emotions of caregivers: I think I felt almost every emotion possible. Hate, for the cancer ravaging my strong father. The man who had been my rock in life was now too weak to hold a full glass. So I felt despair and helpless as well. I felt concern for my mother (more than my father, because he was getting great care). I felt gratitude for many things: for our close and caring nuclear and extended family (my father's cousins and other distant relatives came from hundred of miles away to see him and give my mom help and money, some Saturdays 20 or more relatives came; my mom's extended family did the same); for my understanding, devoted, and accommodating husband; for my dad's oncologist — who called almost every day and made frequent house calls the last few months when dad was unable to get out of bed; for hospice — for everything; for my parent's many friends, who didn't abandon them in their time of need and are still there for my mom. I also felt revulsion and fear. I saw the large tumors forcing my father's skin to bulge out, and was revolted to think that could happen to anyone (and if it could happen to a strong healthy, vibrant man like my dad, it could happen to anyone). Deep inside, even though I knew it was foolish to feel this was, I was afraid to touch him. However, he needed to be washed and massaged, so I had to bite back my fear and revulsion and do it anyway. I don't really remember feeling resentment, confusion or contempt, but I did feel a lot of anger because my mom and dad were being cheated out of enjoying their retirement years together after having worked so hard all their lives. I also felt anger that my son would not be able to grow up knowing his grandpa, because I knew how important my relationship with my grandparents was to me, especially as an adolescent.

Now for the care "getting" part. I have MS and other autoimmune diseases. Due to the nerve damage, I have lost a good deal of my visual field in my left eye, so I can no longer pass the eye exam for renewing my driver's license. Also, when I have a fever, I become completely paralyzed until it abates; this also happens when I get overheated by being outside in warm weather, when I have a warm shower or bath, or when I am exposed to heat as I cook. When I have an exacerbation, I have to have complete bed rest for a week or more, and need someone to make meals, clean house, and tend to my needs. When in this position, I feel angry and very resentful. I'm angry that, as a 38 year old woman, I have to have someone wait on me. I resent not being able to do for myself. I resent that I spent years getting a great education, and building a career, and now I can't concentrate or focus my mind on the technical aspects of my training long enough to have a meaningful discussion, not to mention a career. (I have a Master's in biochemistry and worked for about 10 years as an environmental research chemist and college chemistry professor — teaching freshman chemistry and organic chemistry; I have published over a dozen peer-reviewed journal articles about the research I did, as well as several newspaper articles).

But I am also grateful that I do not only identify myself by my job, as so many people do. I have always had many diverse interests and hobbies. I learned from my grandmothers that life is not a destination, but a journey and what matters is not where you go but how you get there. So even though I never know what to expect from my body on each new day, (and who really does?), I try to find something that I can do. This serves at least two functions: it keeps me busy (a busy person is more content than an idle person); and it keeps my mind off my physical limitations. Like my grandmother told me, "You can only truly be happy if instead of counting your troubles, you count you blessings." I try to do this every day, and it keeps the resentment and anger at bay.

One other note:

My neighbor, a retired first grade teacher, now over 80, told me that I needed to learn how to accept a gift graciously. I realized that this is very true for most everyone. Whether the gift is material or one of time, love or care, it is often difficult to accept with grace. This is what I'm working on.


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Stories from May, 1997 to June, 1998

Stories from January, 1997 to March, 1997

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