posted 09-12-2000 12:09 AM         

I was diagnosed with Hodgkin's Disease in 1984 at the age of 24. Although medicine seems to advance by leaps and bounds, I'm disturbed at how little the patient is considered as a person even after all these years. By the time my cancer was correctly diagnosed, I had tremendous tumors around my heart and was close to congestive heart failure. Surgery was not an option (I wouldn't have survived), so chemotherapy and radiation were the way to go. I must say that I was blessed to have brilliant doctors, but I always felt that they were so fascinated by the disease, they forgot it was attached to a young woman. Nobody ever worried about my emotional health. There were no support groups available in my area, and I was told to just "buck up and tough it out!" My parents were more frightened about the possibility of my dying than I was which left me feeling completely isolated. Thank goodness things have progressed a bit since then!

In 1994, my mother was diagnosed with ovarian cancer. Her physician seemed very concerned with her comfort and pain management; one of my major concerns, however, was with her obvious depression. When I would try discussing this with her doc, he became very uncomfortable and seemed at a loss for what to say. I feel like Mom died the day she was diagnosed. She and I had always been very close, and yet I couldn't get her to talk to me about her hopes and fears during our last months together. Why is it that discussing death is so taboo in our culture? Although I wish we could have been closer during that time, I was fortunate to have been with her when she died. One day, she simply fell into coma and stopped. We did know that she wanted no heroic measures when the time came, so death came very quietly, peacefully.

My father died suddenly in 1999. He was lucky to die as he wished. He had been treated for emphysema for a number of years but was still able to maintain a reasonably active lifestyle. He had instructed my sister and me that no heroic measures were to be done when he finally went into respiratory arrest. That happened when he was at home alone; I do wish we'd been with him, but I do find comfort in the knowledge that he died the way he wanted.

posted 09-12-2000 12:14 AM         

We did have very caring doctors and nurses. Watching tonight's segment of ON OUR OWN TERMS, gave me a name for what our health-care team did for my mother and me...palliative care. When it became evident that each thing done in treatment caused another medical crisis, Mother's doctor sat down and talked with us in an unhurried, calm, but direct manner. There had always been a "DNR" order, so I feel this was the next natural step when nothing seemed to be working. We were able to openly talk about many of the things that were being thought but not spoken.

There's a difference between helping someone to live and in prolonging the agony of death; we truly feel that's what we had been doing in the last three or four months of my mother's life...prolonging the agony of death. After her doctor and I talked, we brought in the rest of the family, and then we all went to visit mother. This was September 14,1998...and as we talked, Mother began to beam as if we were giving her the greatest gift that any one person could ever receive. Over the next few weeks, she was kept fed, clean, and pain-free...and each of us let her know that she had raised us well, taught us to love, and set us on our feet. If she was tired, it was alright to rest...we loved her enough to let her go. Sunday night, October 11, 1998, children, grandchildren, other family members and friends visited her. We talked as if we were having one of our old-fashioned late summer get-togethers...Mother was weak, but she was aware; she smiled and patted each person with that left hand. Monday, October 12, 1998 at 10:25 p.m. Mother died..free of wires, tubes, and with dignity,
--J Fleming
North Carolina

posted 09-12-2000 12:28 AM         

25 years later, just a few weeks ago, my parents were talking about Grama's death and they said she had been very upset and scared. She knew she was dying and said so. My mother hired a 24-hour nurse to be with her because Grama felt less agitated when someone was there. Then they had her medicated for the last 3 days of her life so that she was pretty much unconscious. I felt terrible when I heard that my parents knew it was the end but they hadn't told me. Grama should have been surrounded by her family to help her feel less afraid and to let her know she was loved. I didn't come, her son and his family didn't come, even my sister (who was 17 and living at home) didn't visit because she had a cold, and didn't call either. Mom didn't want to worry us.

Grama's death alone was especially sad because she lost her own mother when she was only 7 years old, and was never able to speak of her mother without crying for the rest of her life. She wrote, "I was frightfully shocked and lost without her for a long time. [My cousins took me] one or two summers to place fresh flowers on my mother's grave, but I could not understand where she had gone."

The denial of death, and incomplete grieving, make death last a long time for the survivors.

posted 09-12-2000 01:41 AM         

quote:

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Originally posted by carolsel:
[B]God Bless Bill Moyers and all the people who participated in this very important and very meaningful series. I sat with tears throughout most of the program - tears of pain, tears of regret, tears of recognition and understanding.

Watching the program made me wish I had known more during my mom's last months and death. I wish I could have helped her more and not been so caught up in the day-to-day goings on. I wish I could have just loved her without the so-complicated emotions that went along with her death. I wish I hadn't been impatient with her in her last hours. I wish I had been able to sit quietly with her after her death. I wish I could have understood death more.

Yet, I know she loved me unconditionally her whole life. I know this because she told me so! I know she understood at some level why I was impatient and why I was torn at times. She understood and she forgave me my transgressions.
B]

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posted 09-12-2000 02:55 AM         

quote:

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Originally posted by Stamm44:
What have been your experiences with death and dying and end-of-life care?

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After watching the first 2 parts of Bill Moyer's show I find it very comforting that when my mother died in Dec 95 I followed the pattern of hospice without even knowing it. She had brain cancer which took her reasoning and cognitive abilities very quickly (49 days from diagnosis to death). It was such a blessing that all the appropriate paperwork was in place before her diagnosis. We never discussed these issues, she just allowed the paperwork as a tecnicality before another surgery never dreaming for a moment that it would ever be necessary. I knew exactly what her wishes were though as we had struggled with my father's death from lung cancer in 1984. His "treatment" was a nightmare and she openly commented several times that she never wanted that for herself. One brother and myself took care of her in her home as long as we could and then placed her in a nursing home where we fortunately were distantly related to the head nurse. They honored our wishes and allowed her passing to be as peaceful and gentle as possible. Hospice was not a help to us. I truthfully don't know to this day if it was our lack of knowledge about how they operate or their lack of explanation, but their initial contact with us was all paperwork importance rather than what my mother needed. It was very difficult as my mother and I were never close. Her passing in this way allowed me to give her the attention I had always wanted to as her daughter. She always pushed me away. So I guess even though nothing between us was ever resolved, I could give her the kind of attention and caring everyone deserves in the end of their life.

posted 09-12-2000 03:08 AM         

quote:

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Originally posted by Stamm44:
What have been your experiences with death and dying and end-of-life care?

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posted 09-12-2000 01:31 PM         

The second experience was throughout June and July of this year. My mother-in-law had congestive heart failure, and was in a nursing home at the time of the final stages of the disease. The difference was that with a Durable Power of Attorney and a DNR order, the terrific nursing home respected all our wishes that nothing extreme be done at the end, and she be allowed to go naturally. My mother-in-law died with dignity in the palliative care unit of the nursing home. The staff at Lincoln Park Nursing Home in New Jersey are ahead of their time, and made all of us comfortable.

posted 09-12-2000 02:48 PM         

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Originally posted by Bridget:
My mother recently died of a cancer. What bothers me most about her death is the lack of compassion shown to her by the medical community. Hospice said call them, not 911, but it took Hospice over an hour to respond to an emergency phone call and why suffer needlessly. Once in the ER the doctors wondered why she was there and just wanted to send her back home. I had to advocate for her frequently and resented it greatly, then and now. When the end was near she did not die with her dignity intact.

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posted 09-12-2000 04:17 PM         

My daughter is a cancer patient (diagnosed in 1997 at 4 years of age) being treated at a major medical/research institution. Her treatment has gone very well and she is in the reconstructive phase. We are grateful for her healing and recovery, but also have a great sadness having been around many children who are not doing as well, some of whom have died. The clinic families all feel part of an elite club, but sometimes it makes it even tougher. As we rejoice in the hope of our daughter's treatment, we are greatly affected by the children who are not as fortunate.

One time when my daughter was in the ICU after major surgery, there was a young boy in the space next door. This boy of less than 2 years was having major organ failure as a result of treatment of a blood disorder. We spent some time with the family and observed how they had to relate to the loss of this little child. While we were there, the decision to remove support was made. It was quite apparent that the doctors had done as much as they could. Correction of the renal chemistry would throw off the hepatic chemistry correcting the hepatic chemistry would disrupt the sugar balance, and so on.

My wife and I were in awe of how the little boys parents remained composed. I think we were just seeing how they had come to a resolution and were ready to let their son die. I'm sure that they had their emotional times, times when they would lose emotional composure. But in the end, by having to face reality and being with their son, they were able to let their little boy go.

One other aspect of all of this is that my daughter has her own understanding of death. I am not sure to what extent she understands the subject, but she does know the finality. She has seen kids come and go and understands that her own illness could be fatal. She also knows that cancer survivors are more likely to have recurrence and that she may have to face what these other kids have had to.

I think that sometimes we only think of having to prepare for elderly adults to die. We typically think of a pediatric death as being something unexpected and a shock. There are, in fact, many children who die from terminal disease. Their families have to prepare and discuss just as much as the families with adults only the preparation and departure involves children, the one who is dying , the siblings, and friends.

posted 09-12-2000 05:52 PM         

quote:

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Originally posted by Stamm44:
What have been your experiences with death and dying and end-of-life care?

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For 2 years a group of friends helped Ellen Kielty of Indianapolis live life as fully as possible after she was diagnosed with stage 4 metastatisis of breast cancer. Most of us did not know each other very well but we all loved Ellen. We are very diverse in our lifestyles, professions, religion, age, and abilities. Ellen loved people and had collected quite an assortment of friends over the years, but she could not believe that so many friends would come to her aide. She dubbed our group as "Ellen's Angels" and the group kept growing as more people wanted to be involved.

At our first organizational meeting there were 10 women and 2 men. We used a book, "Share the Care," to help us get organized. When Ellen died on June 21, 2000 (at age 58) there were over 30 people involved in her care (some did not even know Ellen before she became sick). This organized, conscious effort to really live to the fullest in the process of dying seemed to strike a cord in a wide group of middle aged people. We had parties, special healing rituals, group activities around "race for the cure," and many gatherings to connect to each other as we helped Ellen. We laughed, cried, danced, and prayed together. We had a monthly newsletter to update everyone on Ellen's status and current needs. Each week someone served as "captain" of the group and called her everyday to see what she needed from her friends. Sometimes it was a ride to the doctor. Sometimes it was a massage. Sometimes it was to have someone spend the night or to go grocery shopping. The captain then called down the list to find the help that she needed. We designed "Ellen's Angels" t-shirts and ball caps for our group to wear to our events. During the 2 years we were together to help Ellen, we supported two group members who were grieving the death of parents and we celebrated the birth of babies for two other group members. Our shared experience of caring for Ellen was truly a journey of life cycle events. We all now treasure this precious gift of life much more.

We are forming a non-profit foundation to help others organize such care groups. We will soon have up a web page with the story of Ellen's Angels (www.ellensangels.org). Some of us will be available to consult with other people who want to know how to organize such a group.

This next Sunday (Sept.17)we are gathering at a special chapel in the woods where Ellen's ashes are buried to finalize this 2 year experience and to share our individual stories of the impact that this exerience has had on our lives.

posted 09-12-2000 11:29 PM         

quote:

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Originally posted by carolsel:
God Bless Bill Moyers and all the people who participated in this very important and very meaningful series. I sat with tears throughout most of the program - tears of pain, tears of regret, tears of recognition and understanding.

10 years ago this fall, when I was 46, I spent 8 months caring for my mother until she died 11-15-90. The time has gone by so slowly and so quickly! As with all of us who have had family members die, I have a whole story that is far too long and complicated to tell here. BUT it is good to write in a forum where I know I will be understood. Thank you.

Watching the program made me wish I had known more during my mom's last months and death. I wish I could have helped her more and not been so caught up in the day-to-day goings on. I wish I could have just loved her without the so-complicated emotions that went along with her death. I wish I hadn't been impatient with her in her last hours. I wish I had been able to sit quietly with her after her death. I wish I could have understood death more.

Yet, I know she loved me unconditionally her whole life. I know this because she told me so! I know she understood at some level why I was impatient and why I was torn at times. She understood and she forgave me my transgressions.

And I know most of all, that the difficult time she had dying was her gift to me, so when my beloved sister (and her younger daughter) died just 13 months later (12-15-91), I did have more understanding and I had the strength learned from my mom's death to be 'with' my sister without a myriad of mixed emotions. I WAS able to just be with her and love her and let her go. And I was able to be with and support her 4 children when she died. I am so grateful.

I have learned so much these past 10 years. And I saw and heard much of it discussed tonight. My prayer is that more and more people can become knowledgeable about dying and can begin to work with people who are dying in this humane, loving way. Our society needs this information.

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posted 09-13-2000 12:04 AM         

quote:

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Originally posted by Stamm44:
What have been your experiences with death and dying and end-of-life care?

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posted 09-13-2000 01:14 AM         

quote:

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Originally posted by Stamm44:
What have been your experiences with death and dying and end-of-life care?

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The series, and my experiences with cancer have left me with a sense of hope that society, and perhaps the majority of the medical community are finally coming to grips that life itself is a journey towards death. And delaying the inevitable, at any cost, can no longer be seen as anything but an exercise of monsterous egos.

In May of 1993 my Mother at age 80 was diagnosed with stage 2 Low Grade NHL. Because of other serious health problems, she elected to not accept any treatment. Her oncologist advised our family that without treatment she would probably die within a year. Because my sister is a nurse and my brother-in-law is a Doctor, we were able to do everything possible to assure that all of her wishes were carried out. If they had not been so well connected within the medical profession, I strongly suspect that my stories would be different. For the next six months we spent hours and hours working with her to plan for her death with dignity. She determined that she would not die in the hospital, but in my sister's home. And that she would leave her apartment and move to my sister's home when we all agreed that she could no longer care for herself. That did not happen until late in February of 1994. By that time two significant events had happened, at least significant to me. We had not really been close for years, but now we began to talk. We had spent many hours and days in sharing memories and feelings that had long been tucked away. Fences were mended and our relationship deepened as it had never before. The ability of all of the family to accept and participate in helping her plan and live the last year of her life gave all of us a greater appreciation for our own lives. In May of 1994 she died peacefully in my sister's home. Quietly and without pain.

I was not able to be with her, because on that day I was undergoing a CAT scan to determine if the stage 4 non hodgkins lymphoma I had been diagnosed with in February was in remission. During the last four months of her life, I shared deeply with her the planning and open discussions regarding living and dieing. And I shared her cancer. We became co-conspirators, she planning her death, and I my fight to live until the day I too would need to plan. She taught me that one can plan to die with dignity and yet not give up the fight to survive.

My tests were negative on that day in May of 1994, but in 1996 I had a recurrance. Again I was fortunate and received wonderful medical care from a fantastic medical community. I was privileged to take part in clinical trials, and to everyone's amazement (including my own), today I am a survivor.

I am told that I am not "cured", and I'm told that a recurrance can happen anytime. The best thing my oncologist can say to me is that the new swollen lymph nodes and the tumors are "not remarkable". He is uncomfortable talking about long term plans or a prognosis. The most he will say is that generally this type of cancer returns and further treatment will probably be ineffective. My wife has some difficulty accepting or even understanding that, but this series certainly forces me to revisit difficult topics with her. Perhaps there will never be another recurrance, or perhaps there will be one tomorrow. But whatever happens, when or if that "recurrance" happens, I know that I can face and manage whatever this journey brings me to. I am in charge of my future, just as my mother was. A living will and frank discussions with my family are first on my agenda, and getting a copy of the series for my wife and sons to watch. I needed the PBS reminder to open the conversations again.

posted 09-13-2000 01:55 AM         

I have learned that is not something to fear. does not have to mean a loss of dignity. does not have to be lonely and clinical. does not mean great unrelieved pain.