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Rae South Dakota I can relate to what the people in the show are talking about. My father has been in the hospital since Dec. 24, 1999. He has been in CCU since March. My mother was the primary care giver since he had kidney failure and then kidney transplant and then this period of illness. She basically gave until she could give no more. She ended up in a geriatric behavioral unit of a local hospital with depression and numerous psychiatric problems. She is now out of the hospital but has a while before she will be completely recovered. I have picked up where my mother has left off and I have tremendous guilt not meeting my own expectations of caregiving. I have since begun asking for help but the guilt is still there. Vikki Hawaii The three segments that we have seen have been wonderful. Our 38 year old daughter was diagnosed in February 1998 with multiple myeloma cancer. She has undergone a peripheral stem transplant and has been involved in several other protocols at the Mayo Clinic in Rochester, Minnesota. My husband and I have been with her and the family to share the caregiving with her family and sister that lives nearby. I am thankful for the opportunity to share this time with our precious child. There have been tears, joy, laughter, depression; the whole gambit of emotions. She has a wonderful outlook, spirit, and a sense of survival and wants to keep things as normal as possible. She stated early on, "Don't feel sorry for me, only give me your support and love." I think the hardest thing I ever had to do was share the caregiving when she had her transplant. It was hard to watch all the trials and tribulations. Each day brought some small miracle. The day she finally ate more than half of her dinner was a day of rejoicing! No more protocols at this time, so we wait Pat Texas I am very pleased that someone in the medical and media has finally brought to light the way in which most people die. I assisted in caring for my older sister with terminal breast cancer and you have given so much light to the various ways in which people must suffer because our medical community has not been taught how to STOP and help the patient die. My sister had wanted to take her own life, because of the pain. Only after my family had demanded that she receive the pain medication to help her rest and die in peace it was given. It was done because we demanded it, not because it was offered by the medical staff. The medical feild needs to have more training with dealing with the terminally ill patients. I also agree with the nurses Talk about how you would like to die to your family. One of the things my sisters death has taught my family is to tell your family, How you would like to die and to back it up have a living will. Again, THANK YOU! L.Z Michigan When I told my friends and family that I was watching this series they first thought I was crazy. I have cried a lot while watching but it is very comforting to listen and hear all of these stories and how people cope with their situations. My mother had a stroke 11 years ago. My father and I have done so much together to help her in all of the areas she lost due to her condition. She can't drive, walk without a walker, shop or anything on her own. We helped her do all these tasks as possible. I had a hard time for a while with caregiving at first because many times she 'expected' it and 'right now'. It hurt my feelings seeing my dad run around all the time for her. I really think her stroke changed my mom's personality a bit. I do not remember her being this way. Now I have lost my dad just last year suddenly to a fast growing brain tumor. I have lost my crutch and it is me and my mom. I do have a good family that does their best but I am the yongest of 5 and the only daughter. I have chosen to live close to my mom to help her but ever since my dad died we are not as close as we used to be. When my dad was diagnosed, it took everything in me to convince my mom that Hospice is a vital and beautiful resource to have. We were lucky that his insurance covered it, and we were fools to think we did not need them. I guess my comment regarding this series is that it is real and goes right to your heart. Hospice has done a lot for my family but for those not willing to join a group or can't get to a meeting, this series will help with healing, reassurance, and comfort after/during times of trouble. Thank you for addressing these issues!! Sincerely, Michelle P. Ohio I have been working with people facing life threatening illness, first with AIDS patients and now with brain tumor patients, and thought your series is excellent and moving. It brings out in the open an issue many people have difficulty dealing with in their own lives. The struggle for me is how to maintain hope and fight an illness while at the same time understanding the death will eventually be present. Rob Tufel, MSW, MPH National Brain Tumor Foundation 1.800.934.2873 With cancer on the rampage like it is today, we all should think about what you want and let the people you love know how you feel. I personally would want some control in my death. As a christian I hope i would have the courage to face any battle, But on the same token I would not want my family to have to care for me 24 hours a day. I would want to leave behind a good memory for my children to have. Not memories of me in pain,wasted away to a skeltal verson of old self. Carolyn Texas I need more detailed instructions as to the Living Will in my state. James North Carolina My attitude toward death and dying since watching the series has changed. I have accepted that death is merely part of the life cycle and should not be swept under the rug, but discussed openly between family members, particulariy when there is no health crisis looming. My father died last month. Fortunately, he and my Mother discussed his wishes, concerns and desires before he became completely debilitated. I wish to explore with my Mother her wishes very soon. Maybe its too soon following the death of my father. We are just trying to manage our own grief, however, since watching the program, this subject is no longer taboo for me. Leslie Michigan My attitude towards death and dying changed tremendously after I saw both my father and father-in-law deteriorate to skin and bone due to their cancer! Chris New Mexico The most beautiful thing about this series is that it is such a gift to those of us still healing who have been or are still a caregiver. When I was a caregiver for my grandma there were times when I felt that some of the emotions I were feeling were foreign or wrong. It was so nice to let some of the guilty feelings go. Also to find out that feelings of wanting to just walk out and escape were normal or just wanting to close the door and sleep while someone else took over. I was also able to find healing with her death and passing. I think it is also a great asset for someone who is alone while they are caregiving and not able to attend conferences or outings. It is a great reaching out in helping people to heal. For that I can never thank those invovled enough. Katherine Vancouver, British Columbia The program has been wonderful. I have been in the caregiver role for only a short while and have already realized how tough it can be - it was nice to see that others are going through the same trials and those that have completed their trials still smile - that's good to know. Margaret AL I, fortunately, have no fear of dying because of my lifelong faith in God. It is a substantiated faith by innumerable experiences which were unquestionably contributable to His care and protection. How wonderful it would be if all of us would realize He controls all. Tom NC Please inform the public that people on Medicare have access to the Hospice Benefit. The Hospice Benefit is designed for people seeking palliative care and who have a terminal illness with a diagnosis of six months or less to live. It covers comprehensive hospice services including all pain medications, equipment and the help of nurses, home health aides, chaplains, social workers, nutritionists, etc. The Hospice Benefit is often free or with a low co-payment. Moyers' Monday night program seemed to imply that most patients had to pay for expensive pain medications themselves. This misinformation might result in discouraging people from getting hospice care that is available to them. Just contact any local hospice to get more details about this. I hope you can get this information out to your viewers and share it with other PBS stations as quickly as possible. The rest of the program is fantastic!!! Sincerely, Anne Colby RN, hospice volunteer (650) 854-7725 apcolby@aol.com I have been watching the Bill Moyers series ON OUR OWN TERMS as well as the local follow up BAY WINDOW: WITH EYES OPEN. What a wonderful presentation. Last night I was somewhat troubled with the Bay Window program on caregivers. What was presented was excellent. What was left out is what troubled me. I know in the earlier shows, there were people receiving institutional care. I didn't see the families that made that choice in last night's presentation and that's what's missing for me. It's my opinion that caregivers must take care of themselves and many times that means seeking a skilled nursing facility. Keep up the good work, and perhaps someday a presentation can be made on families that have made other choices. Regards, Louise Keating Wednesday, Septembe 13, 2000 Lansdowne, Penna. 19050 Ladies and Gentlemen, My husband, brother and I were thoroughly pleased with Mr. Bill Moyer's program on Growing older, lack of health and planning sufficiently (your way), on how to die! Our mother, Winnie Walshe-Finn, came to America at age 19 from Claremorris, County Mayo, IRELAND, 9/9/1929, just a few weeks prior to the Stock Market Crash of 1929! Was mother upset, Hell no, The Irish people were kept so terribly poor by benevolent Mother England, that poverty and starvation was the plight of the Irish born peoples' from cradle to the grave! Meanwhile, Mother was diagnosed at age 80 with breast cancer, as were her sister, Ann, at age 65 and a cousin Winnie in County Mayo, IRELAND. We immediately made contact with Howard Posern, M.D., P.C., 111 Bala Avenue, Bala Cynwyd, Penna. (215)-667-2927 for an appointment to have Mom thoroughly tested (brought along her X-Rays, blood work and biopsy slices). Dr. Posner examined and tested Mother and within one week, he had our mother on a nutritional (vitamin, mineral, herb, physical fitness program), that helped to aid Mother's longevity. Mom suffered four strokes after age 80 along with breast-to-bone cancer, NO PAIN, and she lived in her own home until last August 6, 1999. Mother became much like a helpless child, but Thanks-Be-to-God, between all family members, we did manage to keep our Dear, Sweet, Irish born Mother, in her own home, pain free, until her Creator called her home to "The City of God!" We miss her very, very much and always will! Mother never had an ounce of chemotherapy, radiation to Stay!" With real Love, anything is possible! Praise God! The Finn, Maloney, Malone, Cusick families My husband has chronic progressive MS. I have been caring for him exclusively for about 8 years. It seems to me that there are fundamental differences between caring for a spouse and a child or parent. I am having a difficult time reconciling the role of spouse,(ei sexual) with the role of caregiver. As one of your participants on last nights show began to say, there is a real problem feeling sexual with someone you have just "cleaned up". I would appreciate some insight and/or discussion how others have dealt with this emotional problem. Judy NH Our family has been dealing with the terminal illness of my father for the past eight months. He is dying from a primary brain tumor. I have found the series very moving and informational. I don't think the series has changed my attitude towards death and dying, but it has opened some new areas to be explored. I think we all need to look at dying with a new perspective; it is not something to be kept behind closed doors. It is an experience, that if you chose to participate, can bring great vision to our lives. I hope this series has helped people see that death is something to be looked at with open eyes; not something to run away from. Christine Colorado I have followed the series with great interest--my parents, both in their 70's live in another state and I fear are "victims" of the medical field. They do not want my help, do not communicate their illnesses or their wishes and it has given me some comfort to see that others can take control of their lives. I hope to be able to become more involved in my own death process and while only in my 50's, have just lost a dear friend who battled breast cancer for 30 years. This program has also helped to understand that perhaps, just perhaps, her days were made easier with the help of the doctors out there today. It is nice to see that finily some in the medical field are attempting to feel the pain of those in their final days. I hope that I might view these programs again at some point to take in more--I sat thru them all, yet my husband could only watch 30 minutes of each program. He admitted they were good, just couldn't watch. It has all made me feel that death does not need to be the sca Linda Illinois I have a greater appreciation for the job that I have with Hospice. When you work in one area for a period of time you loose your awareness of the severity of what people are going through. It has recommitted me to the mission of caring. Jenn OH I can't tell you how much watching this series has help me to be more understanding with my feeling. I am the primary caregiver for my Mother-inlaw she has terminal panceace cancer, I have been having so much guilt and emotions and now after watching this series, I understand why. Thanks I just hope you will run this series again since I missed the first one and would like to share them with my other family members. Sincerely Kathie California To each and every one of you who participated in the making of this film, my heartfelt thanks. In 1993, my husband of 24 years died at the age of 45 years and 217 days. Prior to that, two of our children had died. With my husband, we received the loving care of hospice although I was the primary beneficiary. In retropect, I can see that his oncologist was a very progressive physician and I will be forever grateful to him for believing in the importance of dignity and comfort. For me, the most tender moment in the show was during the first night when a woman spoke of her pathway with her husband as he lived towards his death. She said that this journey was the greatest honor she had ever been given. I so absolutely understand this feeling. This show brought many old feelings for me, all very tender and life-filled. It did not change my attitudes but it has been wonderful to see how many people in the community feel freer to discuss this most intimate and powerful part of life. Thank you. Janet Florida Hello, I am a 22 year old Nursing Assistant in my local community. I'm currently working in a nursing facility but I have done and will continue in the future to do home health work as well. After watching "With Eyes Open" I felt honored to be doing this work. It touched my heart in such a way that made tears come to my eyes. Not grief only for the dying patients but a more over feeling of peace, happiness, and joy to be able to be the support person a dying patient or senior need in their life. People often turn their backs to this type of career choice but it takes a special person with a special heart to do the things that are required of the skilled individual. K. PA Thank you for this wonderful series. I am a 48 year old mother of a 7 yr. old and a 19 year old. I take care of my husband who has been living with stage 4 colon cancer for 3 years. This series has helped me in so many ways. I understand so much more now about what my husband is going through --- esp. re. pain and energy and the practical side of dying. I have been unable to get practical information such as offered in this series. Excellent! Thank you! To the woman who wrote of a relationship with someone who also lost a love, but they were unable to talk about their lost loves: have courage. Your loved ones are with you and smiling on you. My cousin was widowed and found a wonderful widow to share his remaining years with. They married and the priest said, during the service, that they could not have found such a loving relationship had they not had such good relationships with their deceased loves. It is very difficult for my husband to see their happiness and I always remember the priest's words. Death is part of life, as much as birth is -- this is one of the lessons of this series. It is a natural process. Lee Maine Hindsight is 50/50. After watching the series I finally realized that there is no "right" way to die. Like anything in life, death takes planning and the right resources -- as living human beings we don't think of this. Thank God for pioneering doctors and care givers and hospice. My father died in July, still a raw wound too much to express here, but I'm glad he and my mom had a plan. Jane Michigan My response to the discussion after the Moyers' series is that Ray Suarez was much more focused on the Rabi than the Tibetan Scholar. I felt the whole discussion was biased since the Tibetan Scholar was put into a situation where he had to interject rather than directly respond. The bias was clearly a western one when, in fact, it seems to me a whole lot of our problems, both environmentally and politically stem from the central tendancy of our western way of thinking. For what its worth, David Ithaca, NY I have been a nurse for 16 years. Some of my most cherished times as a nurse has been doing private duty for hospice. Watching family and friends care for their loved one, listening to their memories, laughing and crying with them. It is a very personal time, a very tender time. I feel honored to share in their lives in this very crucial time. The dying person is still alive. They are alive up until their last breath and deserve to be treated with respect and dignity, even after their last breath. My dying patients have taught me to cherish the gift of life. Their caregivers have demonstrated to me love, devotion and committment. Thank you. Rhonda Oklahoma As I watched the helpless, the elderly, I felt almost paniced. But, as I watched the afterlife session, and listened to thoughts that were new to me, I felt there might be hope. Gayle IN I am a 50 year old woman who for the last 6 years has been taking care of my invalid 87 year old mother and my wheelchair bound 55 year old husband. I watched these programs feeling as though I had walked the same paths as some of the stories that were told. Sometimes we can forget about the caregivers, they are the quiet heros. Some days the stresses are unbearable. I am fortunate to work at home, but in some ways it makes it worse, with no life, or so it seems, at all. I feel as though I fight depression at times, but not enough to seek medical help. I think it takes a lot of courage to be a caregiver. Cathy Arkansas I had breast cancer 12 years ago, and at the time I was forced to realize I would not live forever. I lave lived with a different kind of death for the past 10 years. My husband of 36 years divorced me and went on to a new life. I have learned that death is not something to fear, there are worse things in living than I think death will be. Your program has reafirmed things I have learned about faith and living. I am so greatful for every day. I hope when the time comes for me to die, I will embrace death as I embrace life. Thank you for a wonderful program. Helen Alabama I have been a Hospice Volunteer for around 4 months now and I do this in an inpatient facility that has just been built in Ridgeland, Miss. Right now we have 30 beds available for Hospice patients. I have never felt so close to God as I have in this facility. I am a totally disabled veteran and am divorced. Being a volunteer for Hospice has filled a hugh void in my life - it has given me much focus - I never find myself worrying about the small things anymore and thank God daily for giving me the ability to do this. I am truly honored. I believe that a person should die with dignity and without pain. Jim Mississippi I work as a Medicolegal Death Investigator for the State of Oklahoma Medical Examiner. I deal with all forms of death, those expected via natural causes and those not expected via traumtic events. I have working in the field for almost 13 years. I have seen unbelievable events that with these occurences, peoples lives are changed forever. Even with natural expected death, I am always amazed at how unprepared people are for the event. There is no system to help people find their way in these moment of profound grief. Dealing with death is not something that we are taught to expect or even reconize will occur. We are just barely starting to reconize the needs of the dying but as of yet the needs of the family and loved ones after the death is something that is still not faced. Once the person is dead, it is like those left behind are expected to just get over it the day after the funeral. To reconize the long term effect of death on those still living is as important a part of the proces Emma Oklahoma Thank God for this broadcast. Life can be so tremendous a journey that we forget its purpose, "To build up the spirit." This program reminded me of the beauty of the journey and raised my awareness of how many of us make the transition. Karen D.C. "W.E.O" was a greatly informative program. It opened my eyes to the delicacy of hospice care that is out there. My late grandfather's home hospice care may have taken care of his pain, but was severely lacking in the rest of his and his family's needs with regard to the end. Would that they had sat the adults down and discussed what was coming and what could and shouldn't be done about it. I felt totally helpless at the end, beyond tracking down his morphine (it was sent to the wrong pharmacy) and buying baby food to put his meds in. I am inspired to see what I can do to volunteer/educate myself to help others get the care the patients and their families (when present) need at such a hard and yet important part of life. It would help me to learn more about and accept the naturalness (word?) of dying. The palliative care concept is so important in these circs. Everyone, even when not currently faced with terminal illness, should press our government to remedy the healthcare system and inc Wendy TX I am 37 years old. I watched my husband die of cancer 3 years ago. Rabbi's Wolfe's analogy to death being like being born, and the discussion of the twins in the womb, hit home for me. I have 3 small children when their father died they were 5, 3 and 2. Explaining what happened to them was difficult. As a way to help them and myself, we went to the cemetery. This is what I told the children. Look at the stone and see that your father now has 2 birthdays. A birthday when he was born on earth here, and a birthday which he was born in heaven. We went on the day of his birthhday in heaven (2 years on the date of his death). We took balloons and let them go up into the sky, to celebrate his new life in heaven. Listening to Rabbi Wolfe talk about death as being born, is something that I truely understand, and I feel that it is a good analogy. As mortals on this earth, we like infants, not able to see what is beyond what our senses show us. Thank-you for your program and discussion. Helen Michigan Please note this area is designed as an informal discussion area. If you are looking for help, there are many useful links in our Resources section. |
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