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 The Series: What's Your Reaction?
 Program 1: Living with Dying (Page 1)
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elizowen Administrator Posts: 17 |
posted 08-24-2000 09:14 AM
  
The premiere of ON OUR OWN TERMS examines the ways patients and caregivers are trying to overcome American culture's denial of death. As you watched the program, what was your reaction? |
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rikwh New Member Posts: 1 |
posted 09-10-2000 10:40 PM
[QUOTE]Originally posted by elizowen: [B]The premiere of ON OUR OWN TERMS examines the ways patients and caregivers are trying to overcome American culture's denial of death. As you watched the program, what was your reaction? I was very moved by the program. After having lost both of my parents, I wish I had known of all of the available resources I could have used. I will watch the remaining programs with interest. The doctor's with is an inspiration. I only with I had her courage. |
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maryb Member Posts: 3 |
posted 09-10-2000 10:45 PM
quote:MY REACTION - IT WAS LIKE WATCHING MY LIFE FOR THE LAST YEAR. MY YOUNGER BROTHER WAS DIAGNOSED WITH TERMINAL CANCER SEPT 3 1999....HE WAS 39 LIVING ON HIS OWN AND I WAS ALL HE HAD. MY PARENTS HAVE THEIR OWN HEALTH PROBLEMS. ALSO, HIS INSURANCE WAS ONLY TRANSFERABLE HERE....ALL THAT ASIDE...I WOULDN'T HAVE HAD IT ANY OTHER WAY. THE WIFE OF THE DR. WHO DIED OF ESOPOGEAL CANCER SUMED UP THE FEELINGS I HAD THE BEST WHEN SHE LIKENED IT TO BEING ON A NAROW WINDING ROAD....OUT OF CONTROL...YOU KNOW HOW IT WILL END BUT YOU CAN'T CHANGE THE OUTCOME OR THE RIDE....WHE SHE TALKED ABOUT HOW NO MATTER HOW WELL SHE COOKED - OR HOW MUCH SHE DID FOR HIS SHE COULDN'T CHANGE WHAT WAS HAPPENING. SHE COULDN'T MAKE IT BETTER. THAT WAS THE MOST FRUSTRATING PART FOR ME. I HAVE ALWAYS BEEN THE FAMILY "FIXER"...WELL, LAST YEAR I FOUND OUT YOU CANT FIX DEATH. BUT LIKE HER HUSBAND, MY SCOTTY DIED HERE IN OUR HOME WITH ALL OF US PRESENT, PEACEFULLY, INDEPENDENTLY AND LOVINGLY. IT WAS WONDERFUL TO HEAR OTHER PEOPLES STORIES. I LOOK FORWARD TO THE REST OF THE SERIES. |
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mgqfbc New Member Posts: 1 |
posted 09-10-2000 10:47 PM
As a Baptist minister I encouraged my congregation this morning to watch the beginning of the series tonight. I told them I had obviously not seen it, but that if Bill Moyers was doing it, it would be worth their time. Absolutely right on target. As one who deals with death and dying every month, I applaud the series. It will serve well those who take its message to heart. Bill B. and his wife have been added to my list of heroes. |
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MatthewG New Member Posts: 1 |
posted 09-10-2000 10:48 PM
quote: I remember my partner's death by auto accident. The shock, the terrible shock, being told that she was dead. The blur of events, of people, of sights, of feelings... This program allows those memories to return , allowing me to feel the residual pain, to continue the grieving and healing process. This program is part of the process of creating meaning from my beloved's death and my response to it. The first step is to cease the denial.... |
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Saschteph Member Posts: 2 |
posted 09-10-2000 10:53 PM
I'm very happy I made it my imeprative to watch this program. I only wish my mother had, or will watch the remaining series. I cried. I cried for the future. My mother may be ffacing serious illness, but she has to do tests. She doesn't like to talk of death or planning, as she thinks it means you're wishing for it. I hope we can come to some middle ground soon. The series I hope will bring people to comfortable acceptance, and positive intervention in this eicate matter that's a part of all our lives. |
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JST New Member Posts: 1 |
posted 09-10-2000 10:54 PM
Exquisite production! I cared for my mother in my home as she died of cancer, and my father-in-law as he died of "old age" (90). Hospice was there for the last 3 months of my mother's passage and not needed for my father-in-law. God Bless Moyers for finally bringing this normal, natural part of life to light. I hope some of the next episodes will bring out what a gift it is to the living to be able to assist in the dying of a loved one. It erases the fear and gives a quality to the rest of life on earth unavailable anywhere else. If this series doesn't win the top award for a TV documentary, our society is in worse shape than I think it is ... another subject and we won't go there. Thanks Mr Moyers. Your program made me miss my Mom but made me ever so grateful to have shared her final passage... and she is still with me in her own way. |
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chaprich New Member Posts: 1 |
posted 09-10-2000 10:55 PM
I am a hospital chaplain and I often work with and serve those who are dying. Six years ago my father died from pancreatic cancer. I tried to view Episode 1 as a professional, but found myself being pulled back to my father's dying and death. The segments on Dr. Bartholme's journey reminded me of my father's experience, and rekindled the grief that is always there. But I don't mind the grief, I don't mind paying the "tax" for my attachment because the grief is a reminder of how special my father was and continues to be. Thank you for continuing the discussion. |
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jennifertut New Member Posts: 1 |
posted 09-10-2000 10:56 PM
As a Hospice RN I waited for this program with excitement and a bit of anticipatory doubt. "Will they get it right, or will it be just dramatic television?" As I watched I caught myself nodding in agreement with what was said and shown. Death is truly a labor....just as birth is. The seperation of a soul from a body. It is WORK...physical, emotional, spiritual and mental WORK. This series, so far, is doing a wonderful job of showing many of the facsites in dealing with this journey...for not only the terminal person himself but the caregivers and the medical community as well. I look forward to the rest of this series with great excitement now..without any doubts. From a nurse dealing with death and dying every day...I thank you for helping to bring this to "prime time". |
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Jennifer Moore New Member Posts: 1 |
posted 09-10-2000 10:58 PM
I am a future social worker and in college to complete my degree. I have a unique situation where I am married, live with my parents and help them to take care of my grandfather who is 91. We give him complete care and dedicate our time and energy to allow him to live with us and spend his last days months or years with us. I believe that dignity in death is very important. As a small but very close family, we believe that our unconditional love and attentiveness to my grandfather is the greatest gift we can give him. The series on death and dying is wonderful because it gives me hope and encouragement to continue my work with my grandfather and eventually be able to share that gift with other people in my future career. I will never live with regret or unhappiness because I know that I gave all I had to my grandfather. My parents, husband and myself are encouraging and setting examples for our young sons that caring and giving to your family is the best way to live. I hope that more people will watch the series and find comfort in learning how to cope with death and dying. |
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janevatech Member Posts: 3 |
posted 09-10-2000 10:59 PM
I was impressed with the way in which the personal and individual aspects of dying were presented. I was wondering if the more "clinical" side of death and dying would be presented, and I'm glad to see that it's from a personal point of view of both the patient and family and the professionals working with them. I have worked with hospice for many years and felt that the show gave a very clear picture of what happens in peoples' lives. I agree with your comment (the minister) that it's well worth watching during all of the series. Jane |
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dedwardskansas New Member Posts: 1 |
posted 09-10-2000 11:07 PM
This show was excellent as far as it went. What was not covered is the all to common unexpected and sudden death. The people covered in this show had time to prepare and come to terms. What happens when death is not a slow methodical process but a violent and unanticipated event. My wife and I just lost a close friend who took her own life. Dealing with death at this level seems much more difficult. Hopefully future shows will deal the issue of sudden death. |
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Julie1961 Member Posts: 3 |
posted 09-10-2000 11:08 PM
I was so pleased to see a program about this subject.. I am a hospice nurse and see death on a continual basis in my job and yes, there is a level of acceptance that comes to both the patients and the families. I also hear Gosh, I wish you were here for us earlier! This is one of the problems in hospice care. The doctors are referring to us very late. I am sometimes doing death and dying teaching the day before or the day the person dies. Sometimes family members are not able to get to the patient in time to share in the death and dying experience. I hope that many doctors are out there and watching this program. They need to get us in there earlier to assist with all the symptoms of pain, nausea, constipation. They also need us to help the families emotionally to prepare for the patient's death. Thank you, Julie RN |
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EllenP New Member Posts: 1 |
posted 09-10-2000 11:15 PM
Two and a half years ago my mother passed away at 89 years old, living at a retirement community. She was diagnosed with congestive heart failure and was told that she was too old and sick to save and that they would "make her as comfortable as possible" while she waited to die. She was told the time she had left could be days, weeks, or months. She lived for 7 more months. We’d had a rocky time together. She wasn't easy to be around, especially when I was a child. (I probably wasn’t, either.) Finally, at the age of forty-two, I gave up hoping she’d be the Mrs. Cleaver type of mother I’d always wanted, and cut the "umbilical cord" at the top of my lungs on Christmas Eve, while visiting her and my father. I didn't speak to her for a year and a half and then only ever spoke to her of superficial things. This sat very well with her. A couple of years after we were on speaking terms again I got a letter from her saying how glad she was that we had gotten so close. The retirement community she lived in was about 4 hours away. When I got the word she was dying I spent a lot of time visiting her. The first month she was very depressed and distant. She either slept or stared at the wall, her face a mask of misery. She’d insisted on being catheterized so she wouldn’t ever have to get out of that bed again and then settled down to the business of dying. One day during that month I was sitting in a chair next to her bed. We hadn't spoken in hours. The sun had gone down and her room had become almost totally dark. To rest my backI shifted in my chair, putting my elbows on the edge of her bed. She reached her hand to my face and stroked it very gently. It was a wonderful thing. During another visit acouple of weeks later Mom experienced her first of 6 little deaths that came before the final death. Dad had taken the opportunity of me being there to get some errands done. During a game of Rummy, where she was cheating like crazy, Mom had to go to the bathroom and so I helped her up out of bed and "spotted" her as she made her slow way using her walker to the toilet. When we got into the tiny bathroom, she let out a long breath of air and collapsed. I caught her and gently lowered her to the floor, on her back. She was breathing in the agonal way of the dying that I’ve heard of and was not |
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janevatech Member Posts: 3 |
posted 09-10-2000 11:17 PM
Especially to Julie, RN (this is Jane, also in VA): I agree that in hospice we more often than not had patients and families referred pretty late in the process. We were continually engaged in community education to make hospice services known, and promote admissions early enough that the full effect of hospice could take place. Did you have questions, as I did, about Bill's saying that he couldn't really be admitted to hospice because of the limited insurance coverage? I thought that all hospices admitted patients without regard to ability to pay, but perhaps that is not a universal principle among hospices. It has been my experience with the 2 hospices that I've been associated with. We also had expedited Medicaid eligibility so that patients could have coverage right away. Do you have any thoughts on this? My understanding as a hospice social worker was that patients were not ever declined for admission due to inability to pay. I would welcome your thoughts on this. |
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cindy Member Posts: 2 |
posted 09-10-2000 11:18 PM
My mother was the Julia who died last summer at the Zen hospice in San Francisco. Watching this program was yet another step in my grieving process. Some of the scenes were familiar to me: her very specific ideas of what she wanted to eat, as food was a source of great enjoyment for her until very near the end. Some of it was very painful. Watching her say how she wanted all of her children with her at the end, and none of us were there. She never said this to me, although I knew how important we were to her. I was convinced at the time that she had deliberately chosen to die when all of us, even Patrick, were not with her in order to spare us pain. Keeping her children safe and happy was her strongest goal in her last months. She was fiercely independent and it was a struggle for her to let other people care for her-you could see this in how she made her requests reluctantly, one piece at a time. She agreed to enter the hospice for Patrick's sake, because she could see he could no longer bear the burden of caring for her. And yet she still wanted to fight her cancer to the end because she did not want to leave Patrick. This desire to protect us is what made me believe she chose to die without us there. But hearing her say how she wanted us there made me realize I have been fooling myself. Of course she would have wanted us there. I don't think she blames us, and I know there was nothing I could have done differently, but it makes me very sad all over again. On the up side, the program reminded me of what a beautiful place the Zen hospice is. My mother had a lovely room always full of flowers, and the caregivers and volunteers were every bit as wonderful and real as they seemed on the show. They all appreciated her for who she was--her wry sense of humor, her love for her children, her difficultness and all. I did not know that anyone there had spoken to her about dying. I am so very glad that they did. I never had the courage to approach the subject with her except in a roundabout way. I let her know I forgave her for past troubles and thanked her for every good thing I could think of that she had given me as a mother. But I felt that she did not want to talk about death with me and I did not want to force that on her. When the hospice called to let me know she was failing fast, I asked to speak with her even though she could not talk any more. I told her I loved her and that she could go-that she had done all she could for us and that we were ready to let her go. I have to believe that she heard me since it was my last chance to talk to her. I'd like to thank all the people at the Zen hospice for making my mother's last months the very best that they could be. I'd like to thank Bill Moyers and all of the other people involved in this program for making a beautiful elegy for my mother and others like her and for showing people a better way to deal with death. That we found the Zen hospice was entirely by luck. My sister and brother and I all live far from San Francisco, so the burden of caring for my mother fell to my youngest brother Patrick. Although he is a truly extrodinary individual, he had reached the limit of his ability to care for her. We could find no help through the system-the home care workers could only come a few hours each day and that was no longer enough. We did not want to put my mother in a hospital or nursing home as she would have hated that. And she did not want to leave her beloved San Francisco to come and live with any of us. The social worker told me that there was no inpatient hospice available. I can't remember now who suggested I call the Zen hospice, but I thank them and God that we were lucky enough to find this haven for my mother in her last months. It should not have been so hard for us to find the care she needed in a way we wanted, and I hope that this program will help others find what they need more easily. I miss my mother in a bittersweet way. I can feel her presence and I know she is up in Heaven giving the angels he** and teaching them new songs. But oh how I wish I could show her my son's first story and tell her how brave he was at his first day of kindergarden, and how my 3 year old daughter is giving me just the same kind of aggravation and joy that I gave her. Mum, I miss you but thank you for giving me so much. Cindy Keleher, daughter to Julia and sister to Patrick. |
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jeanette mccreary New Member Posts: 1 |
posted 09-10-2000 11:22 PM
quote:I lost a 3 year old grandson to a genetic disease, meta-chromatic leukodystrophy last year. My son, daughter-in-law and grandson came to live with my husband and I so all of us could take care of our precious child. He was diagnosed at 2 and we were told he would live about a year unless life support was used. The prognosis was total disability, blindness, horrible pain. Needless to say, we were devastated, but we strived every day to make it the best day for him. All of us were caregivers. The peditrician and neurologist who had treated my grandson,dismissed us since we didn't want to use a feeding tube and Hospice was our only source of medical care. Hospice assisted us in controlling his pain and his last days were very peaceful. He died at home with all of us around him, 14 months after being diagnosed. Dealing with the death of a child is especially heart-wrenching. I think this program is very helpful. Death is a reality and I personally would not want to have my life prolonged if my quality of life was gone. |
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Wayne New Member Posts: 1 |
posted 09-10-2000 11:25 PM
My wife of 28+ years passed away 18 months ago, after 1 year's battle with NHL. The last two weeks of her life were in ICU, with tubes coming out of her. She actually must have left us sometime after the first week, as response was mostly imagined by us. There were heroics. But no one had the courage to let her know she was probably losing the fight. She was 50, with an 18 y.o. daughter and a 14 y.o. son, whom she desparately wanted not to leave. In the end, we were all in ICU when she was disconnected and spent almost an hour with her. One of my many sad moments is in realizing she did not have a chance to tell us good bye. I did think that some of the participants expressed their feelings upon their immanent death or the death of a loved one quite accurately. You just cannot imagine what it is like until it happens to you. Wayne |
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DLRoberts Member Posts: 6 |
posted 09-10-2000 11:32 PM
Thank you for this series on a topic many people do not like to discuss. In May of 1999 my 47 year old brother was diagnozed with incurable brain cancer and passed away April 30th of this year. He was newly divorced, had no children, I took over his main care. One of the most important things I tried to do was to let him call the shots. He was a vital man who took extremely good care of himself and now he found himself struck down by something he could not control. He had always tried not to depend on anyone. Always the one to help others out but found it devistating to now be in the position of having to be helped. Someone had to drive him anywhere he wanted to go. Could not work. Many decisions to be made. During the last month I lived with him 24/7 and watched him go from an independent person to being in a wheel chair, having to have help get up in the morning, go the the bathroom, take baths, fix something to eat and put him to bed at night. Many tears were shed by both of his during this time. Aphasia had taken over and communication was done by yes or no questions, but sometimes yes meant no and no meant yes. We became great partners in charades. I am so very thankful I had the opportunity to be with him during this time and even though your series brought on more tears, I thank you for bringing the "d" word to the forefront. |
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janevatech Member Posts: 3 |
posted 09-10-2000 11:32 PM
Wayne, I'm not entirely sure how this works, as it's my first "chat" online. (So I don't know if this just appears in the general discussion or comes to you.) But I wanted to reply to your statement specifically; I hope I'm not being too personal to say that perhaps your wife had been able to tell you at earlier times how she felt about all of you? I would hope that might be of some comfort to you, to know that she was aware of the good relationships among all of you in the family, even though she was not able to say goodbye at the time of her actual passing. It sounds as if you all had expressed your feelings pretty freely, and I just think that's always a good thing. anyway, my best to you and your family. Jane
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mric4 New Member Posts: 1 |
posted 09-10-2000 11:42 PM
I really liked the show. I am a diabetic with many complications. My motehr was also a diabetic, and she passed away several years ago. For many years I questioned my involvement at the time of my moters death. Did i make mistakes abotu the final surgery? Did I make correct decsions about her wishs? Over and over again i pondered these issues. I refused to go to a doctor. I realized that if medicine could nto save my motehr, an excellant behaved diabetic, how could it help me? For over 15 years I self mediated myself. I injected insulin on a daily basis and watched my own progress. Eventually of course this all caught up with me. After several months of therapy, I was able to go see a doctor. But the result has been that I now see many doctors. As my health declines, my reliance on doctors grows. I think of all those years my mother suffered. She was sick so long, and was so bad, that for year after year, we felt we would lose her. I was 6 or 7 seven when it started. Not a Thanksgiving would go buy that we did not think she would be gone before the next. This guilt, and feels held me down so far, that I could not escape it. I suggest that anyone dealing with such grief, seek help ASAP. If I had that help, I would have been better off. Probably not more healthy, but less anxiuos, less depressed, and less fearful of my own pending demise. If anyone would like to contact me feel free. Rick Phillips |
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Revwill New Member Posts: 1 |
posted 09-10-2000 11:48 PM
As I watched the program, deep feelings of grief washed over me like a neverending tide. I found myself in anguish, and I kept saying that I could not continue watching, for the pain was too great. You see, I lost a great friend, professor and mentor less than a year ago, and I also lost my grandmother 12 years ago during my first week in college. I am not sure where I am in the grieving process. I know what my faith says about death. But I know that I still have to feel the pain, and to journey through it. And I am going through it alone; at least I am walking with God through it, but I have not allowed another human to be in it with me. But I will continue watching the rest of the program installments, because the series have given me an insight into my own grief, and perhaps, some healing. Thanks for tackling this most personal topic. |
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casero Member Posts: 2 |
posted 09-11-2000 12:07 AM
quote: I was very moved by the first episode of this series. I was especially touched by the story of the pediatrician in Kansas City, Missouri who had been diagnosed with cancer of the esophagus. Very often I have wondered when will death strike my immediate family. So far we have been pretty fortunate. Apart from my grandmother and grandfather who died in the 1970's (I was too young to remember most of it) we have not experienced any major death in our family. Eventually someone in our family will have to face death and I for one plan to be there every step of the way. Our family is from Cuba (by the way I live close to the University of Miami-Jackson Memorial Medical Center presented in the program) and in our culture the family is a very strong unit. I do not want my parents or anyone else in my family to die in hospital surrrounded by strangers so no matter what the costs I will be there for my parents or anyone in my family when it comes time for them to leave this earth. I think this is one of the best programs to explore this kind of problem in America today. I am familiar with Bill Moyers and I have always liked his narrative style. From what I can gather the suffering of dying stems from a fear of the unknown. Having family around in familiar surroundings I think is the best therapy for a terminally ill patient. The point should be made however, if modern medicine and procedures can offer the hope of a cure then that avenue should be explored. The danger is that some people may decide to not undergo potentially life saving-albeit aggresive-medical treatments simply because it might involve long stays at the hospital. If there is a resonable chance of a cure then the patient should be encouraged to undergo the treatment. |
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restarta2 Member Posts: 3 |
posted 09-11-2000 12:54 AM
I watched the program with many mixed emotions. I have felt for a long time that our culture does not deal with death well. My husband died in Dec. of 97 after a 15 month battle with a brain tumor. I was his only caretaker until the last two weeks. The dying stage was so difficult and I have always wondered if I did a good job of caretaking - not physically, I know I did that well. But I am not sure of the emotional side. Since communication was difficult due to the affect of the tumor, it was hard to discuss his dying and his death. I thought the woman, Pam, in the program was so wonderful. She seemed very focus and in control and so certain of her beliefs. It would be interesting to know how other caretakers who watch loved ones, particularly a spouse might cope if communication with the dying spouse is difficult and often times impossible. |
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Jinni New Member Posts: 1 |
posted 09-11-2000 02:08 AM
I just happened to switch on the series tonight and it touched me deeply. I lost my husband of 18 years the day before Thanksgiving 1999.He was only 41 years old and he had been battling cancer. I felt Pam was me. Jay died at home and my deep faith in God got me through the very difficult times. To relive what I saw in Pam and look back, brought tears to my eyes. I loved my husband very much and we went through struggles with communicating with each other and dealing with the children. The pain I could not ease. The quiet times of just holding each other. It has been almost 10 months and I miss him dearly. I believe with all my heart Jay is in Heaven with our Lord and I will be with him again. I still deal with day-to-day struggles, but God is faithful. He gives a hope and a promise of me not being alone. He is with me. |
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