Stories from listeners

By MPR Producer Annie Feidt

Mary Quigley Feidt camping in the Boundary Waters Canoe Area in the late 1990s

Feidt with her twin daughters Daisy and Annie in Longboat Key, Florida circa 1982 photos courtesy of Annie Feidt

I've heard stories of terminal cancer patients who bravely embrace death. I picture these people smiling peacefully in a comfortable chair while they receive friends and family during their last days. It all sounds so enlightened and beautiful and perfect.

With my mom, it was different. The day the first hospice nurse visited the house to set up her care, mom met every question with short answers and an expression of pure disdain.

It was an important turning point for all of us.

In the months since her diagnosis, mom had devoted an incredible amount of energy to beating the tumor that was spreading spider-leg strings of new cells through her brain. She had bravely endured two long surgeries, radiation and chemotherapy. But her prognosis kept getting worse and worse. She was just 54.

When the tumor advanced beyond the grasp of standard treatment, mom, dad, my twin sister and I flew to Duke University, where an experimental surgery was showing some signs of success. We wore buttons that read, "at Duke there is hope," and kept them on even after the treatment failed. Back at home, I thought about throwing the button away, but couldn't bring myself to actually do it.

I was starting to consider the inevitable, but mom was still completely focused on beating the tumor. I couldn't help marveling a bit when she asked my dad to make sure he scheduled a dentist appointment for her - nothing out of the ordinary, just a routine check up.

That first hospice nurse who arrived at the house finally made it okay for us to give up on "hope" and focus on mom's last days, even if she wasn't ready to do that herself. The nurse sat down beside us and talked so reassuringly about what was to come. She brought a kind of order to our situation that made it seem, if not okay, then at least bearable.

The hospice agency set up a hospital bed right in the living room and during the next few weeks, a team of nurses, physical therapists and assistants rotated through the house. They took care of all of the hard tasks, and trained us to handle her routine care. Mom never really warmed to any of the hospice staff, but she did look forward to visits from a nurse assistant who lovingly doled out sponge baths and full body massages.

Released from the cold white walls and annoying routines of the hospital, we could focus on being a family for the last time. We talked a lot, and read aloud. We had the chance to tell her how much we loved her a million different ways. At night, we often pulled up mattresses beside mom's bed so we could be next to her even while she slept.

During the days, mom entertained a steady stream of the considerable number of friends she had made over the years. She wasn't religious, but she had a Buddhist monk come to the house to help her make some sense of what she was about to go through. From the next room, we could hear her crying as they talked. She brought up death with us occasionally, but would always quickly change the subject. Dad would say something like, "this is tough stuff, isn't it honey?" and press her to continue but he never had much luck.

After one and a half years of slow deterioration since her diagnosis, it was shocking to see mom decline so quickly. The tumor had already taken most of the feeling on the left side of her body and it started to swallow up her personality as well. When we talked, I would look hard into her eyes, searching out the last traces of the loving, opinionated and energetic person I knew.

The morning before mom died, I woke up early and pulled up a chair beside her bed. She had a lot of fluid in her lungs and mouth and every labored breath came out gurgled. She was trying to talk but it was difficult to make out the words. Then I heard her say, "I'm afraid," and my heart sank. I told her not to be afraid, that she was prepared for what was about to happen, but she was still upset. She asked if my sister and I would be okay. I said yes and told her again how much we loved her. She said, "Okay. I have to go," and slipped into unconsciousness.

She died early the next morning. I wasn't with her, but her two sisters who were at her side, said she calmly took one last slow breath. They said it was unexpectedly peaceful.

It's been more than two years since that morning. I've spent nearly every day since trying to forget mom's last days - to replace the image of her so sick and afraid with all the good memories I have. But when I do look back on that time, I'm so thankful we were able to pass those few weeks in our own home, on our own terms. What a gift. I can't imagine saying goodbye any other way.

By A.R. from Raleigh, NC

Thank you for your fine broadcast today. I just hope that some of the physicians at Duke University Medical Center heard it. In 1995, my husband entered the last stages of a long and hard-fought battle with melanoma. He had had an experimental surgery that failed, partly because he was contaminated with meningitis during the surgery. When they finally released him to my care, shortly before Christmas, they told me that there was nothing else that they could do for him.

I brought him home, as I had promised I would. From that point, I kept trying to get the doctors to grant permission to put him on Hospice, to no avail. He was in such poor condition by the first of the year that I couldn't take him to see the doctors there. They refused to visit him here, but still would not sign off on Hospice. Finally, the health insurer called me and said that they would no longer pay for the only relief I had - a home health aide who came to bathe my husband. They suggested to me, illegally, I think, that he should be on Hospice. I asked that they call the doctor but they refused. Finally, after days of begging and pleading, the doctor gave approval on January 17. The home health nurse came by in the afternoon and signed my husband out of their care.

She said that Hospice would come in the morning. My husband passed away during the night, never having had the chance to benefit from Hospice. I have always felt that all of us - my husband, my children, and I were cheated of an experience that would have helped us all in a time when we needed support and encouragement. It has been 8 years since his death. I still support my local Hospice as often as I can. I also still find it very painful to visit Duke University Medical Center. I know that they are as skilled as any hospital in our area, but some of their physicians are still in great need of education as to what Hospice can do for their patients and their patients' families. Thank you for letting me speak about this.

By Amy L. from Fayetteville, NC

I am a registered nurse at a local hospital, but I had the great privilege of working with a hospice agency in order to earn clinical hours towards a B.S. in nursing. My experience with hospice has made me a better nurse, and a better advocate for my patients, dying or not. I learned that patients and their families appreciate gentle honesty. That doesn't just mean answering questions, but also volunteering information that people should know. I urge every patient I care for to complete a living will and discuss death and dying with their loved ones, whether they're in the hospital for a knee replacement or gastric bypass surgery or colon cancer. I also learned from hospice that death doesn't need to be ugly or depressing. It can be as special and sacred as a birth. It is unfortunate that liability issues, egos, reimbursement concerns, etc. make it difficult for so many M.D.s to discuss death and propose hospice care. But I know the tide is turning.

by G.S. from Chapel Hill, NC

My mother had lung cancer which spread throughout her back. She was scheduled for numerous "treatments". When the extent of the cancer was known, hospice was recommended, a group I had not known.

These terrific people gave us the strength to be home together, to deny painful blood drawings, to plan small gatherings of old friends, to take little trips, and to reunite with far away family. In so doing, we spent marvelous time together, used our caring hospice folks to help assuage pain and refocus on important memories, relationships and even our few triumphs.

Today, ten years later, I can still recall their counsel, use it to help me plan as I age, and can think of no other single organization who has so selflessly cared about my world during that slow passage to death, and who was able to take the fear out of the process.

by Peg Cummings from Mankato, MN

I have been a hospice volunteer since 1991. And the reporter had it right, it is a privilege. The clients I have served have welcomed me into their homes and made ME comfortable.

When I mention to others that I volunteer with hospice, people sigh and shake their heads saying, "I could never do that." But it isn't hard. It may be sitting by their side while they rest, it may be holding their hand, it may be sharing memories or stories, or getting to know the other members of their family. Every dying person is different with a different life story. Each experience is unique. As a volunteer, we are there for them, to make sure they are comfortable and have what they need. But at the same time, we are there for the care-giver, to give them respite from their daily duties. Maybe to let them enjoy a few hours away from the space where death lingers.

Finally, it has helped me learn how I want to live my life now and how I want to treat my loved ones while we are active and alive. It has made me a more compassionate person and a better listener.

Hospice work allows us into the most private time of any person. It is fulfilling and worthwhile.

by Cynthia Dean from Battle Lake, MN

I found your show to be so informative. We lost our mother to Alzheimer's last February and we don't know what we would have done without hospice. Having used hospice when our father died of cancer three years ago, we were very aware of the program and knew they would assist us also when mom's time came. Mother was in a nursing home and when we had our intake conference, we asked about hospice and being it was a Catholic home, would there be any conflicts? We were told there would be none and we had just the opposite. They fought us in bringing in hospice in February, that we were giving up too soon (we had hospice last summer for mom, but she had rallied). We were told on a Thursday that we could start Monday, came Monday and they had not notified hospice, and felt they could handle it and that again we were jumping the gun. We disagreed with them and the doctor concurred with us that we could start the morphine and hospice, but it was a constant conflict and our hospice nurse fought for us every step of the way. Our nurse was a very good friend of mom and knew how she felt and how we felt. Our family is so grateful to hospice and some of us are considering being volunteers for the program.

by Tennessee Watson, former Production Assistant for American RadioWorks

5:26

The time is seared into my memory, as if the red glow of the clock at the end of my bed were a hot branding iron marking me forever. Dad is leaning over me. Waking me gently, but urgently, "Tennie, wake up. It's time for you to come upstairs, to be with mom." I know what that means, and it isn't easy to hurry and follow dad as he leaves the room. As I climb the stairs, I listen for the sound of the liquid oxygen compressors, the constant background hissing that has become a part of my life. When I don't hear them, I know exactly what it means. My mom has taken her last breath. All I can say is "shit" as I kneel next to mom's bed, arms outstretched across her body, holding my dad's hands. Her body is still warm and her eyes are barely closed, but she is gone, and my dad and I are confronted with how to live without her.

That was April 1, 1997. I was 16. My mom, Nancy Woodhull, was dead after a six-month struggle with lung cancer. Within hours of her death, radio, TV and newspapers were recounting her career as a journalism pioneer and a prominent voice in the women's movement. But about her death, little was said except, "She died yesterday at age 52 at her home in Pittsford, NY." But there was so much more to the story.

I've heard people say "Nancy lost her battle with cancer." I don't see it that way. Framing her struggle with cancer in those terms misses the point. She was fighting, but not necessarily to beat cancer. The real struggle was about learning, and living and loving life to its fullest potential even in the face of death.

That said, we didn't talk about dying much. My mom's mode of operation was to stay positive and to think about getting better. I don't remember if hospice was even discussed. To questions about living wills and do-not-resuscitate orders, my mom responded, "I want to live." I assume hospice got the same reply. Perhaps if someone had tried to dispel the myths about hospice, and explained to her that it wasn't really about death, but more about life, she might have made a different decision. But she was a fighter and she wanted to go down struggling, which meant chemotherapy. My dad and I did our best to support her, and we all focused on survival.

Deep down, however, I knew her journalist sensibilities were telling her that there was a side to this story she was neglecting. I gave my mom two journals for her 52nd birthday on March 1, 1997, so she could document her emotions, her feelings about her struggle with death that hurt too much to share with my dad and me. A month after her birthday, with only a few pages written, she died.

From what she did write, I know she saw cancer as an opportunity to learn something new and another chance to defy the odds. That approach was her secret to success. "I've made a career of working on new things," she told Working Woman back in 1989, when the magazine featured her as a founding editor of USA TODAY. When she heard a negative comment about a project she believed in, she would usually pause, say, "That's interesting," and change the subject. My mom approached cancer as she would any other challenge - never contemplating defeat, looking for the opportunity to grow.

My mom essentially created her own care plan. In the end it closely resembled many of the values of the hospice movement. Autonomy and dignity were huge for my mom at the end of her life, and for the most part, that meant being at home. We converted a room above the garage into her space and nurses rotated through to help us take care of her. Light streamed in from skylights overhead, and the room felt more like a family den then a place for someone to die. Comfy chairs mingled with medical equipment and oxygen tanks. At home we had space. Life wasn't restricted by visiting hours or hospital policy. My mom could be herself, my dad could be his self, and I could be 16. I remember when my mom's hair started to fall out from the chemo treatments and I convinced her to let me shave her head. We giggled and cried as I shaved her head with my dad's clippers and made a mess of the kitchen.

She was my wild and crazy mom until the day she died. And as her own life came to an end, she continued to look for ways to improve journalism and its impact on people's lives. Being at home made continuing her work easier. Through her intimate experience with the health care system, she decided that nurses were the people journalists needed to talk to when they were reporting on health care issues, and not just doctors and experts who rarely have as much contact with patients. She pressed forward on plans for a study to look at how nurses are portrayed in the media.

Nancy left behind a phenomenal legacy. I would give anything to have her back, but I can't say I regret the understanding of courage I gained from witnessing my mom's struggle with life and death. There were definitely times when she just wanted to give up. I remember one afternoon, sometime during the last weeks of her life when she asked my dad to shut off her oxygen tanks. She wanted so badly to find peace but she couldn't let go because I was there hugging her, trying to hold onto her soul. Saying good-bye then was too hard and she held on. She would have to pick her moment to slip away.

By the end of March, my mom needed more oxygen and narcotics to breathe than we could supply at home. So she had to be hospitalized to keep on living. With an ambulance on the way, old questions resurfaced: Living wills? Do-not-resuscitate orders? Life support? My dad and I had discussed this stuff, but we wanted my mom to call the shots until she no longer could. As it turned out, she decided in her own way. My mom paused after that final discussion of living wills and do-not-resuscitate orders. "Could we," she asked, "enjoy the day here together. I don't want to go to the hospital."

The ambulance was canceled. The day was spent together. We visited and laughed with friends. In the evening, drugs and the disease combined to produce a coma that would ease the final hours.

That night, I had this desire to curl up in my own room downstairs. My dad spent the night with my mom. When he knew it was time for me to say good-bye, he left the room to come get me. In that instant she was gone.

My mom's spirit is very much a part of me. I know she wants me to pass on her story. Death is not easy, especially when you have to look your 16-year-old daughter in the eyes as you grapple with decisions about hospice and chemotherapy. I tried my hardest to assure my mom that I would support whatever decision she made. Sometimes that meant intercepting doctors in the hallway so we could strategize the delivery of bad news. My dad and I didn't want to break her spirit. She wanted to fight when she was told she didn't have a chance and we weren't going to stop her. She had been defying the odds and challenging norms all of her life.

In the end, she accepted that dying gave her perspective and a profound understanding of love, life and family that few people ever have. Even though it took her a while to get there, her final decision to die at home was an entirely autonomous one. It was incredibly powerful to watch my mom embrace her death, as she would any other challenge, her own way.

by Kirsten Larson from Lake Oswego, OR

Larson's mother courtesy of Kirsten Larson

Because of my mother's illness, I came to understand this about myself — I felt better if I had something to do. I could find her the best doctor, take her to chemotherapy, research ovarian cancer, feed her nutritious food, make living arrangements, assist with finances, hire help, and choose a hospice program.

My mother was diagnosed with cancer in January of 2002. Early on I learned the language of illness; ascites, level III C, hematocrit, hemoglobin, CA 125 counts, and the different dialects of chemotherapy treatments.

Then, in January of 2004, I began to learn a whole new language; the language of hospice.

"Cancer is about losing things," the social worker told me during one early meeting when my mom was still in the hospital trying to recover from a surgery that was supposed to make the lining of her lung stay down and force the fluid out, to somewhere else in her body that would be less likely to kill her.

I had witnessed my mom's losses over the first two years of her illness; her house, her independence, and most choices.

I didn't know then that she was about to lose her strength and mobility, her ability to breath, driving rights, and finally, even her apartment.

"You realize, though, what's important after you lose those things that aren't," the social worker went on to tell me, "like loving relationships."

It was about this time that I ran out of things to do. There was not another thing for me to do except spend time with my mom. I arranged a workable schedule to cover my business and my family learned to manage without me while I planned to spend as much time as I could with her every day.

Given the lack of tasks, I was introduced to total helplessness and made to face grief.

In addition to a weekly visit from a hospice nurse and the hospice social worker, we had access to a hospice chaplain. I say "we" because hospice services the whole family.

"I just want her to find peace — to die in peace, and I want you to help her find it." I told the chaplain. This was not a small request, yet I tried to arrange for my mom to get peace.

"It may not be possible," he said, "but isn't it beautiful that we have people who wish that for us."

My expectations were completely out of line. I just wanted them to do something to help her. Not necessarily help her to stay alive, but to help her to not suffer.

I chose the particular hospice because of the facility, Hopewell House, where I wanted her to die a beautiful death. I imagined a movie quality death surrounded by family, flowers, and music; tragic, of course, but peaceful.

Hopewell House had an excellent reputation and I had heard many stories about both the care and the facility. An acquaintance's mother spent her final three months there a few years ago, and the family had nothing but good stories about her care.

I didn't know that it had since been acquired by a Major Health Care Company and that the average stay at Hopewell House under their guidance was just three days. My mother would never enter Hopewell House.

After three months of somewhat good, but diminished health, my mom's body started to fail her. The social worker recommended we move her to assisted living, since neither my brother nor I could stay with her 24-hours per day, and Medicare would not pay for any service not directly related to her body, such as laundry, housekeeping, or grocery shopping — the necessities of daily living.

The assisted living cost $5,000 per month; roughly what Medicare paid the company monthly for hospice care. Hospice is a business, and so it is important that it maintains profitability.

I became exhausted and stressed out; easily confused and unable to sleep.

My mom never lost hope even in the face of facts and was despondent over her condition.

She began to suffer from ascites and her feet and legs swelled up. She fell one night, in confusion, and scraped her face. The thing that broke my heart is that she couldn't remember how to use the telephone, and she was alone lying on the floor because she couldn't reach the call button. She was once the president of a bank.

"I just can't believe this," she said. She cried often.

Once, she pleaded sharply with me to do something. "Do you think we should call the doctor? Isn't there something you can do? I can't stand it. I can't stand it. I hurt so much," she cried.

Helplessness, I started crying, "I am sorry mom - I don't know what to do. I am just a daughter." I felt five years old.

"It's okay, honey," she rested her head back onto the recliner and closed her eyes.

That day, I asked the assisted living nurse to please give her more liquid morphine. "Yes, if the family requests it we can." She said.

I called her hospice nurse to tell him that we upped the dose and to ask if it was the right thing to do. "That's the right thing to do," he said. Why, then, didn't they tell me sooner that it was possible? I would have asked two weeks before. Why, then, didn't he recommend it? He had been to see her the day before. Hospice was the expert. Why was it left up to me?

In my grief, helplessness, and distress, I went home that night and threw up. The next day I called my doctor, and told him that I was not functioning; not sleeping and crying all of the time. He gave me anti-depressants, which would take three weeks to work.

She went into a coma that night. I arrived at the assisted living home about 3:15 AM. The night nurse called because my mom was not moving in her maroon recliner, and she had begun to breathe "the death rattle."

I saw right away that she was agitated, and frightened. Her body was stiff and she moaned loudly in between the ragged breaths. My heart broke thinking she had probably been in that condition for hours. It felt like being punched in the stomach.

"Please give her more morphine," I yelled to the nurse.

"I just gave her a dose," she said, reading the label on the bottle.

"Give her more," I screamed. My mom squeezed my hand.

I took the Morphine bottle from the nurse and gave my mom a half dose every 15 minutes, not having any idea if it was the right thing to do. I also gave her the liquid Atavan, for anxiety. It took an hour for her to calm down into a peaceful state. Still, the breathing.

By that time the whole family had arrived. We stood vigil. I remember thinking that maybe it wasn't so bad, the breathing. At least she was still there.

We told her that we loved her and that she was a good mother. We told her that we wished her peace and that everything was all right. We told her again and again.

The hospice nurse arrived about 10 minutes before she stopped breathing. We linked hands and said a prayer. We asked God to take her and give her peace.

I am haunted by thoughts of my inadequacy those last few weeks. I was overwhelmed and the responsibility was too great.

I know that there was nothing for me to do that could have stopped her suffering. I am angry at hospice as well for not taking away her suffering.

My expectations were too high. My tactic of avoiding pain by doing stopped working and I had to just started being.

To my surprise, being with her those last few weeks was the most real, the most sacred, experience I have had since the birth of my son.

"There's not a lot to do except hang out," the social worker told me one day a few weeks before my mom died. That's just what we did every day. We watched Dr. Phil and took naps. We drank diet root beer and talked.

Friends came to visit and I listened to them exchange love. It was to me a living tribute of her life. The love fed my soul and will still bring me to tears every time I think about it.

She also loved us children, me and my brother. No matter how old we were, she never stopped being a mother. More than once, she'd be reclined in her chair, in pain, with her ability to breathe diminished, and I would make a vague complaint; stomach ache, head ache, something. She'd sit up, "Oh, honey. Do you need some Advil?" I'd brush it off because she had cancer. But, she'd ask me about it the next day, and even the next week.

What I miss the most now are the daily conversations, and kind messages that she left on my voice mail, "Hi, Hon. It's mom. Call me, OK? Love you. Bye-bye." Not a day went by those last two years that I took that for granted. Not a day went by that I didn't thank God for the time I had with her.

The day before she died she was unusually alert and joking. I thought it was the Morphine. I discussed the grocery list I was compiling, hoping to entice her to eat anything; she asked for strawberries, raspberries, and diet root beer. She then asked that we work on her obituary. When it was complete she casually said, "Now don't submit that right away." Then she looked at me and we both laughed out loud.

When I left we kissed on the lips, which I hadn't done since I was a child. I don't know why. It was curiously intimate. Over the last months I had often been ashamed to find that I was sometimes revolted by her condition; the smell and site of her.

We said our, I love you/I love you too, ritual four times as I left. I am grateful that love was the last exchange we had. I hated the cancer but I am grateful for all that it gave us.

A few weeks after her death I received a package of grief material from hospice. I found it to be simplistic, as if it were written for a five year old. I threw it in the trash.

"Anger stage," I thought to myself. I am aware of the stages of grieving. Of course, I wouldn't know this if it weren't for hospice.

By Erin Henry from Denver, CO

I became an RN in May of 2002 and went directly to Critical Care Nursing in an ICU at a busy hospital nearby. I thought ICU nursing was what I wanted. It was challenging, invigorating and, best of all, we saved lives every day. After about a year and a half, I realized that saving lives wasn't what I wanted to do with my nursing skills - I wanted to help save people's spirits. Hopsice nursing has allowed me to care for the heart and soul of my clients as much as, and sometimes much more than, their bodies. I have a connection with my clients and their families that ICU nursing never allowed me. I am honored and priviliged to be a part of the most intimate moments of a person's last days, and making those days the best possible is more reward than I ever could have hoped for when I began this journey.

By H.F. from St. Louis, MO

All revolutions leave in their wake unexpected casualties. The hospice movement is no different. My mother was almost one of those casualties. When my stepfather's doctor sent him home with hospice care last January, none of us could anticipate the price we would pay in our effort to let Fred live his last days in the home he built himself.

My stepfather lived more than four months with round-the-clock assistance from private duty nurses aides as well as the care he received from the hospice nurse. By the time we were no longer able to sustain him at home, a nursing home hospice bed was not so readily available.

Neither my husband nor I minded putting our lives on hold and I had already anticipated not being able to stay in the work force full time.

I had even anticipated that was the distinct possibility of grief from his extended family. After all, we were a "blended family". Death and it's accompanying stress on caregivers and family can always be counted upon to bring out the best, or the worst, in families.

What I never planned for - what no one can possibly plan for - is the toll this horrific process took on my mother and the people we assumed would us - the hospice nurse and social worker! Wrong! They fought us (until they were fired!) when my mother became physically unable to care for my stepfather at home any longer.

As in all medical life/death situations, someone must be prepared to do whatever is necessary and remain determined and resourceful. We fought to keep my mother alive and to bring comfort to my dying step-father. We found help and support from completely unexpected sources (and ultimately from the new hospice caregivers), but a battle it was until the end.

It is not helpful to families catching boulders in baskets as they role downhill to act is if the hospice experience is entirely about the right to dignity and respect for the dying. The fact is that it is also another medical crisis.

It is also about those of us trying to do the right thing for those we love and confronting a bitter reality - a loved family member dying at home can simply be harder than hell with what seems like precious little grace for everyone involved. The grace we shared was from unexpected sources and was a communal experience.

My whole hearted support for hospice is now carefully measured. We are able to be loving and respectful to the person who is dying without killing the primary caregiver who must also be protected and supported.

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