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 Real-Life Stories (Page 1)
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Stamm44 Moderator Posts: 63 |
posted 07-30-2000 07:40 PM
  
What have been your experiences with death and dying and end-of-life care? |
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dbrownuu Member Posts: 6 |
posted 09-02-2000 12:31 AM
As a parish minister with some 40 years of experience, I have noted a general movement of the medical community toward giving more attention to the wishes of the patient. My best single example was a man with a flat EEG and his wife requested that he be allowed to die. The hospital staff listened to her carefully, and said they would like to talk to her again "tomorrow." This was repeated for two additional days, at which point they disconnected him. This procedure protected the wife from an "impulsive" decision, but in a reasonable length of time honored her request. |
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Stamm44 Moderator Posts: 63 |
posted 09-02-2000 03:08 PM
quote: DBrownuu, i am sure that you have stories working in the ministry over the years! My experience with family members over the past few years brings me to agree with you that the medical community is giving more attention to the wishes of the patient. I was in a support group for cancer patients' families a few years ago and got to know a couple who were facing a very serious situation with one spouse's brain cancer. The spouse had gone the range of treatments - chemo, radiation, the works - and finally, the doc at the cancer center, a very talented man, said simply that there was nothing else he could do except provide pain medicine. So the couple decided to go home to their place in the country where he could be with family and friends and sit on his porch as the end came, which it did a few days later. How much more peaceful a passing than in a hospital room with strangers, amid tubes, drugs, and machines. The doc did the right thing, though i am sure that as an oncologist he would have liked to try a few more experimental but unlikely to succeed drugs. OTOH, I also recall a situation in which an elderly family member who was demented, dehydrated, but physically strong lived far longer than he should have due to efforts by hospital personnel to keep him alive when the nursing home sent him to an emergency room. Since i was the fallback on-call family member when his immediate family could not be found that day, I caught up with him at the emergency room. The doc asked me if there was a DNR order for the patient, and i said that I did not have power of attorney or other right to speak for the patient, so they proceeded to save him. We just had a long talk with a hospice admitting nurse for another family member. the hospice person gave us the phone number for the hospice on stickers for the phone, and said, don't call 911. They will attempt to save you through methods which our living wills ask not be used. That's what they are trained to do. The hospice people, otoh, will try to make sure the patient is comfortable and not in pain. Period. |
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San New Member Posts: 1 |
posted 09-04-2000 03:23 PM
quote: Having worked professionally (counselor/educator)in the HIV/AIDS community from the late 80's and through the 90's, I've had multiple experiences with death and dying and end-of-life care. Those experiences took place in Massachusetts where the agency (I was coordinator of client services) worked very closely with the local hospice. For the most part, they were tremendously positive experiences where I came to expect a high standard of care from hospice. More personally, my sister and her husband (who lived in another state) both died from HIV disease in 1992, within one week of each other. They both died at home, however they were cared for by private home care nurses, not hospice. Most recently, I had an opportunity to experience hospice care again as a family member with the death of my mother in 1994. I must say I was greatly disappointed in the family support services provided by the particular hospice agency in the state where my mother was residing at the time (Arizona). I temporarily moved there to become her primary caregiver (as my father was no longer physically able to continue her care). I soon found myself having to be an advocate for her with the hospice agency who was relatively new to the homecare/hospice field. They were in the process of understanding their funding sources' (medicaid) limitations for providing services while I was in the process of trying to care for my dying mother. Needless to say, some of our more heated phone conversations were escalated by the emotional circumstances. I only began to go through my own grieving process after I returned home (now living in Michigan) and was able to sort through the emotions that were complicated by the multiple roles I had fulfilled. When I look back on it now, there are moments when I can laugh when I recall the utter absurdity of some of the scenarios I experienced! What I've learned through all of my exeriences is this: people tend to die in the same way they've lived (meaning they handle dying the same way they've handled other major life changes); very few people make dramatic changes in their emotional/psycholigical style, although some people take the opportunity for growth. There are those who look for the deeper wisdom in the process; I've been priveledged to know one or two. The other thing I learned is that there is a wide range of hospice care with standards that vary with individual providers. What I would hope would happen along with public education in end-of-life isues is the education of providers (doctors,nurses,social workers, etc.) and for the establishment of high standards of care/support for those who are dying and their care-givers. I look forward to the upcoming PBS programs. |
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Grandmae Member Posts: 5 |
posted 09-07-2000 10:55 PM
I believe that doctors consider death a defeat and will do all they can to sustain life even if the personhood has gone. I think we all face death because of what we are, Humans. I only wish doctors would be considerate enough to tell us about our loved ones before we send them through all the surgeries etc. Hospice care was a total blessing to my husband and myself, no doctors to use extraordinary measures, no tubes no 911 calls. My husband died with me holding his hand. I didn't have to watch him hooked up and being cared for by strangers. It doesn't change the grief but it helps the memories of his last days. |
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clydia Member Posts: 3 |
posted 09-09-2000 11:53 AM
My story involves my mother who had a phobia about having her life prolonged unnecessarily. Every time I visited her she would remind me over and over again not to let anything be done to her when the end was near. She had had a Living Will since 1973 and it was notarized and witnessed. She lived in West Virginia and they passed a Living Will law in 1984. My father died in 1990 and I had someone living with her. She was a very independent woman who walked 2 miles every day. I have 4 children and worked as a Clinical Nurse Specialist at a medical school in Norfolk, VA. When her caregiver called me and explained she couldn't walk and was acting 'funny,' I told her to take her to a hospital. I spoke with the nurse in the ER and told her she had a Living Will. She'd had a stroke but it wasn't too bad. This happened 2 days before Thanksgiving. I flew to see her that Friday and spent the week-end with her. That was the last time she ever recognized me as she had a 2nd stroke that week-end while I was with her. I gave her doctor her living will; it was placed on the chart; and I spoke with him in person. His response had to do with what did I do for living and where did I work. I assured him I understood the circumstances being a nurse. I had to fly back home and I thought she would deteriorate fairly rapidly but she didn't. The week before Christmas I went back with my 4 children and made arrangements to have her taken home to die. I found someone to stay with besides the original caregiver. Nursing homes and hospice places refused to take her to just let her die. She did not know who I was and I was her only child. Since it was Christmas Eve, I decided to bring my children back home for Christmas. Ten minutes after I left, her doctor came in and ordered a feeding tube which I repeatedly had refused. The nurse refused to do it and the Supervisor was called and she over-ruled the nurse. It took them 3 hours to shove this tube down her throat because her throat was paralyzed. In the meantime, I'm driving back to my home unaware of this. I found out the next day but did not know about the prolonged 'assault' until I obtained the medical records. They tied her good arm to the bed so she couldn't pull it out. It took me 3 days to dismiss the doctor and get another one who would discharge her. As soon as she got home, she pulled out the tube with her good arm. I reported the physician to the WV AMA but they decided he did nothing wrong. I couldn't find a lawyer to take the case so I filed it myself to meet the statue of limitations. I finally obtained an attorney who would take the case and we lost. Why? Because the doctor's attorney blamed me for not being there and not coming back to pull out the tube. The hospital attorney said I was just in it for the money (and we had met for mediation and I told her it wasn't about the money--it was about not happening to anyone else) God help those who don't live near their parents and have children. In order to have prevented this, I would have had to stay at the hospital night and day. The medical profession can justify any of their actions by claiming to be 'following their best judgement.' I knew the law, thought I was protected by it, and am in the profession. If I couldn't protect my mother, who could? I still agonize over what they did to my mother and that I wasn't there to help her. It is a terrible choice to have to make between elderly parents and children. How do you protect both? I did everything I was supposed to do and yet I failed. |
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Robert Lewis Member Posts: 6 |
posted 09-09-2000 01:54 PM
My introduction to this issue, in a meaningful way, occurred this Summer and has left me very angry at the medical establishment. A friend of mine, Daniel, was suffering from a degenerative meurological disease similar to Lou Gherig's/ALS. He was, at age 46, in a nursing home, paralyzed from the neck down. The disease had begun to affect his neck muscles, and he was facing the imminent prospect of losing the ability to swallow and to speak (his sole contact with the world was through a voice-controlled computer. Daniel had decided, over a period of months before this, that when the paralysis reached this point, he wished to discontinue insulin treatment for his diabetes. He underwent psychiatric counseling that found him competent to make that decision, executed a DNR order, durable power of attorney with instructions for his father (who agreed) to follow his wishes, and an Advanced Directive, filed with his physician and the nursing home. The Directive specified that he wished to be given adequate palliative care to ensure that he was not in pain as he died from the diabetes, even if it hastened his death. This was something he feared greatly, and he had assurances from his doctor that pain medication would be available and administered. The local hospice refused to permit Daniel to go through this at their facility, because they disapproved of his decision to refuse treatment. Daniel's doctor, it turned out, also disapproved of his decision, and refused to make any provision for switching from tablet and liquid pain medication to injectables, once Daniel slipped into a coma and was unable to swallow, ignoring urgings by both a nurse-friend of Daniel and counselors at Compassion in Dying (who were invaluable in their help). When the doctor made her sole, brief examination of Daniel, after he had become unresponsive, she attempted to pressure his family and the nursing home staff into not administering pain medication at the levels she had discussed with Daniel and had already prescribed. When several of us, friends of Daniel present at the time, challenged the doctor about this, her response was that she was not going to contribute to his death, and that he lived in a rural Texas community and therefore had no right to expect his physician or others to respect his wishes about this. Fortunately, Daniel had family and friends present who DID respect Daniel's wishes, and remained at his bedside and made certain that pain medication (liquid synthetic morphine just squirted between his cheek and gums, since he couldn't swallow) was administered on the doctor's prescribed timetable. Daniel died about forty-eight hours after refusing his insulin. He was spared many of the possible pains and indignities of the death he faced, but I am still angry that his physician betrayed the trust and understanding Daniel had with her, and that it was necessary for him to endure the hours of discomfort he did, at the end of his life. |
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beverly bunton Member Posts: 6 |
posted 09-09-2000 05:58 PM
My heart broke for you and with you as I, too, had a similar experience. My husband suffered a major seizure/"heart attack" in a parking garage in downtown Charleston in November. As he had suffered from an unnamed neurologic disorder which physicians could do nothing for, including diagnose correctly, we had discussed end of life wishes many times. He wanted nothing to do with any of it and had made himself clear to me many times. When he suffered the sudden cardioembolic event, it just so happened that a neurologist was in the garage and tried to bring him back. He did CPR until the EMs people arrived to no avail. There was no response at all. He had died. My husband was down for longer than 20 minutes. Having worked in medicine I knew there was little chance he would ever survive this. EMs brought him to the ER where a young physician told me AFTER he had ventilated him, tubed him, and caused GI hemorrhaging, after I informed him I wished he had not done mechanicval ventilation, and he said, "Well, this is just for the next 2-3 days when he can be weaned off it." They admitted him to the icu where only the nurses and one pulmonologist seemed to agree with me that Terry would never come to and if he did, he would never be able to care for himself. He was 52 years old. After agreeing to the DNR, I went home where I contacted my son in the Navy and made arrangements for interment. When I returned to the hospital a neurologist whohad been called in on consult, was telling my mother-in-law, "don't lose hope. I wouldn't disconnect anything and give it a few more days. I hve seen miracles." I told that doctor that my husband refused any kind of medicalcare while he was lucid and live, how could he think that I would go against those wishes now? After a long long day, I spoke with the cardiologist the following day and made it very clear that i did not want anymore tests, no feeding, no nothing in keeping with my husband's wishes. He still felt that they needed more "clinical evidence" before they turned off the machines. I reluctantly agreed to wait for the neurologist to examine him and then we would disconnect. However, with 108 degree temperature and blood pressure plummeting, the doctor still insisted on waiting for the neurologist to come. My husband flat lined on the monitor and died. There was no heart beat, no pulse, no nothing EXCEPT THE ventilator going such that my daughter had to place her grandmother's hand on her son's heart to prove he was dead. For 30-45 minutes my children and I stood around that bed watching this ventilator make its terrible noise and pump air into a dead man's lungs. I have worked in medicine for 30 years and I have cried more tears over what these doctors did than the actual loss of my lifemate of 35 years. We really have no recourse, do we? Legal means don't work, i reported them to the ethics committee at the hospital and am planning to file a formal complaint wiht the S.C. Board of Medical Examiners. I am so sorry this happened to you, to my husband and to me and my family. Maybe as a group we could do something about family and patient rights. I don't know. I am so disheartened, I just don't know if the medical community cares anymore about individuals. another one who would discharge her. As soon as she got home, she pulled out the tube with her good arm. I reported the physician to the WV AMA but they decided he did nothing wrong. I couldn't find a lawyer to take the case so I filed it myself to meet the statue of limitations. I finally obtained an attorney who would take the case and we lost. Why? Because the doctor's attorney blamed me for not being there and not coming back to pull out the tube. The hospital attorney said I was just in it for the money (and we had met for mediation and I told her it wasn't about the money--it was about not happening to anyone else) God help those who don't live near their parents and have children. In order to have prevented this, I would have had to stay at the hospital night and day. The medical profession can justify any of their actions by claiming to be 'following their best judgement.' I knew the law, thought I was protected by it, and am in the profession. If I couldn't protect my mother, who could? I still agonize over what they did to my mother and that I wasn't there to help her. It is a terrible choice to have to make between elderly parents and children. How do you protect both? I did everything I was supposed to do and yet I failed.[/b][/QUOTE] [This message has been edited by beverly bunton (edited 09-09-2000).] |
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Stamm44 Moderator Posts: 63 |
posted 09-09-2000 08:11 PM
quote: Clydia, I am so sorry to read of your experience. Thanks for writing it up here on these boards. |
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Bridget New Member Posts: 1 |
posted 09-10-2000 10:40 PM
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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dona Member Posts: 2 |
posted 09-10-2000 10:47 PM
quote: |
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dona Member Posts: 2 |
posted 09-10-2000 10:54 PM
My experience is current and unbelievable. My father is dying of cancer (throat and lungs)and he is unable to speak. Since my parents live in Tennessee and we (3 daughters) live in Wisconsin, we had to make a decision as to who would stay with my mother and care for him. When he was of sound mind, he begged my older sister to be sure he dies at home. She has taken a medical leave from her job and has been with my parents IN the hospital for almost 4 weeks. There has been no support offered to any of them emotionally - no hospice workers, no social workers, etc... My father is on a waiting list for a Hospice Center but cannot go home to die because of the level of care he requires at this time. I am so confused as I thought anybody could die at home with the assistance of Hospice. But then again, nobody from Hospice has told us differently, so how would we know? I am greatly disappointed at the lack of services/support that has been given my father, mother and sister through this difficult time. There are so many questions that go unanswered. quote: |
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rufus New Member Posts: 1 |
posted 09-10-2000 11:09 PM
I watched my mom dying a slow death four years ago. The agony of that was compounded by the aloneness that I felt. It was few and rare that any of the Dr.'s or Nurses seemed to care. Since my sister is mentally handicapped and no other family was there, it was really tough to be in the waiting rooms alone.The guilt that really bothers me most is that as the months had gone by, I knew she had only so much time left I left to go to Spain for a break, I hired help for her, and made a statement " don't call unless she dies" since the caregivers could get her to the hospital, when the call came through, it was only after feeling a strange feeling, like she visited me before leaving. At the time it did not click. But later that had to be it. I recall asking her the day I left if she wanted me to go or not, other times I had cancelled things at her request, this time she said just bring me something nice from Spain. Only after returning did I find hospice came there, and the the Hospice nurse was the first person to visit at the Funeral home.So at least someone acted like they cared. Someone I had never even met till that night. When I visit the cemetary there is a tree that sits on the hill near my parents and grandparents, over the last 3 years I watched the leaves go from Spring to Summer to Winter, and start over. In July at the anniversary of her leaving I took some flowers, and climbed the hill to a huge cross. Now is this as good as it gets? One thing is sure, sooner or later whether you did lots of good or bad, you end up a name on a stone, and if you are lucky someone remembers you and brings flowers or whatnot sometimes. |
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mypy New Member Posts: 1 |
posted 09-10-2000 11:18 PM
quote: My mother passed away this past June, 2000 following a 25 year struggle with Scleroderma, a connective tissue disease. Even though she had this disease for some time, she maintained a fairly active lifestyle up until about a year ago. She lived in Florida 6 months of the year and returned to Michigan for the summers. Fortunately, my family spent our Spring Break with her in April, 2000. She had certainly become more fragile, but we had no indication that her end was so near. My family received a telephone call from one of her Florida friends expressing their concern for my mother and their feelings that we (her children) were not aware of how ill she had become. You see, for some reason, my mom chose to spare us children from her dying process and to stay in Florida. When we found out just how ill she had become, we immediately made arrangements for her to fly home to Michigan. She arrived home on the Tuessday before Memorial Day. By that Thursday, she had seen her doctor who wanted to hospitalize her but agreed that not much would be done over the holiday. So, we agreed to provide her with 24 hour care ... she could now barely walk, breathing was becoming more difficult and she was in great discomfort. Following the holiday, she was hospitalized and we felt that she would get the care she needed and return to her townhome in a graduated medical care system housing complex. She developed aspiration pneumonia and was intubated in the middle of the night. She was always very clear that she did not want any heroics. We, her family, were assured that the placement on the ventilator was only done so that the medical professionals could search for an answer to her breathing problems. One afternoon when my mom was brought out of the medically induced sleep enough so that she could hear/understand the doctors, she raised her hand (the most movement in the last 4 days) and touched the ventilator tube. I thought that she wasn't getting enough O2, so I panicked and called in the doctor. The doctor came in and asked if she (my mom) was trying to tell him something. Even with the all of the tubes and hook ups, she responded with a HUGE nod. He asked if she wanted the tubes removed and she again nodded. There was our answer...it was now out of our hands and in His. The very interesting observation after this point was how very nervous and uncomfortable the nurses were in caring for a dying person. They were so concerned about not overmedicating her with the morphine ... who cares, she is dying anyway!!! Who cares if at this point she overdoses...keep her comfortable. My sister who is a nurse reminded us that acute care nurses are used to healing and seeing people get better, not die. It was then that we sought out Hospice. My mom was transferred to hospice and died within 24 hours. It was beautiful!! They were so caring, gentle, maintained dignity ...they were such experts in dying!!! Although I continue to grieve and miss my mother horribly, I treasure the last few days with her and the opportunity to share in her death. And after she died, it was evident that her body was the shell and that her spirit was lifted elsewhere. |
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restarta2 Member Posts: 3 |
posted 09-11-2000 12:38 AM
My husband died in Dec. of 1997 following a 15 month battle with a brain tumor. Because the tumor affected his language center, communication became increasingly difficult, which was very hard for me and certainly for him since communication was a very good thing in our marriage. I chose to be his caretaker and did so until the last week when he went into residential hospice, where he died. I greatly appreciated the hospice help we both received and, overall, the care he received during his illness. While, in many ways, we did reach a new level of spirituality together, it became increasingly difficult to sustain this as he began to fail mentally and physically. I did not know for sure if he understood what was happening to him nor how he felt nor what his fears were much of the time. We cried together often and I read to him a great deal and always reminded him that God was with him no matter what. I hope this helped him. I think it is this inability to really know how the end of his life truly was for him that haunts me the most. I am still in therapy and am doing a pretty good job of rebuilding my life. But the trauma of his dying more than his death is what haunts me. |
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LovedOne New Member Posts: 1 |
posted 09-11-2000 12:53 AM
What an excellent, emotional, show this was for me! I lost my mother to cancer a year ago (on 9/15/99) and that was my first close up experience with cancer, and death in my home. We had hospice support during her short illness, with my sisters and I as her caregivers. It was a painful process for us, her daughters, to let go of her - she was loved so very dearly. After her death, we knew we had done the right thing, in the right way. We had made sure that she would have a dignified, loving death. I was in hopes of not having to reenact that experience too quickly, however. Two months after Mother's death, my significant other was diagnosed with esophageal cancer. He went the usual gamut of chemo, and then radiation in the last weeks of his life. He died a month ago today. I was blessed with being able to care for him, also, in the end of his too short life. In watching the show, and listening to Pam (Dr. Bill's wife) I heard the same words I have said to friends who have been so wonderfully supportive of me during this time. It truly was a blessing to care for him (Richard) during his dying and death - as it was to care for my mom during her dying and death. But, I could also relate to Pam's saying that it was like "going down a steep hill in a car and the brakes go out, and you can't turn the car off". I have actually had dreams like that since Richard's death. I have been anxiously anticipating this series, as I was a member of an online support group for EC - which Dr. Bill had been a member (maybe a founder?). Having never seen a picture of the man, I was struck by his youth (Richard was 55 when he died); and also as soon as I heard him speak I knew it was him (that same raspy voice that comes with that type of cancer). In looking back at my mother's illness and death, I was so fearful during that time. I think going through her experience with her prepared me to help Richard, and his family, with his experience. I feel so fortunate to have had the opportunity to have helped the two people I loved most dearly during that phase of their life. Even though the cancer took them away from me, God gave me the greatest gift in spending their last days (hours, minutes, seconds) with them. Besides birth, death is the next most important thing in our lives. To be able to support, and care for, the people we love during that time is a treasure for which there are no words. I have a lot of greiving to do, now. And that is happening at it's own pace. I liked the statement that "grief is the tax we pay for having loved someone". That is so very true - and it is a small tax to pay, for so great a love. Thank you for providing this forum for all of us to post our experiences. I think it is valuable for all of us who are "paying our taxes" at this time. Blessings to all, "LovedOne" |
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jean Member Posts: 2 |
posted 09-11-2000 01:34 AM
As I read through the previous messages, I am struck at how fortunate my husband was to be in control of his own death. But to also be fortunate enough to die in St. Patrick's Hospital in Missoula, Montana. From the ER staff, who honored his living will with no extraordinary measures, to the doctors and nurses who managed his pain. He died in peace supported by family and friends in the last days of his life. |
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crossingguard New Member Posts: 1 |
posted 09-11-2000 02:22 AM
My mom just passed away on July 8 and I was looking forward to watching this show. I didn't cry as much as I thought I would, probably because we knew we made the right decision, or I should say, because we went forward with my mom's decision. She refused to do a Will or take care of any other "end of life" decisions, but fortunately, she did sign a "Durable power of Attorney for Health care" about 2 years ago. She basically stated no "life prolonging measures". But she had a stroke and things moved quickly, it was hard to communicate and I couldn't tell if I was getting an honest and accurate answer when I would ask what she wanted. I even found it hard to look her in the eye and tell her how serious things were, I did not want her to think I was leading her into a decision. I wish we'd talked about it openly prior to the situation. We feel good about our decision to let her go because just a few weeks prior, while she was being hospitalized for a low blood sugar episode (she'd been diabetic for 47 years), "nodules" were found on the lungs and either cancer or emphysma was believed to be the cause of her infection, and therefore, her blood sugars bouncing around. We never got into a doctor to have it confirmed but mom hinted that she didn't want to aggressively treat it. She had been a heavy smoker for over 40 years and probably new it was coming. I KNOW it was better to let her go from the stroke than to let her fight back to only be defeated by cancer. We had to make the decision of a feeding tube and it was the hardest thing ever to say no. Even though she said no life prolonging, as the wife in the show tonite said "it's not all black and white". We picked it apart and then when hospice came in, we had to make the decision about hydration. We learned as we went, you don't know these things ahead of time unless you've been through it before, of course. Mom was so fortunate. Three days after her main stroke she started coming "back". We got time to BE with her, but then we got scared, afraid that she would make a big comeback, and then what? I didn't want her to suffer, or was I worried about MY future, as her caregiver? I felt so selfish when those thoughts would enter my head. she was only 60. She could go on for years, but with what quality? Well then, I'm feeling GUILTY.....Then I'm afraid mom may let go just for my sake. Not to burden me. The brain just gets so tired. So, anyways, 10 days after she goes to the hospital, we said ENOUGH, no more tests, no surgery. The doctor brings up the feeding tube and asks if I want to starve her. Beats me down after I felt pretty good. But our family stayed as strong as possible. Three days after she's brought to a nursing home, she started to go. I fought myself over whether I should bring her home, again feeling guilty for being a little scared to do it. We sat around and laughed, cried, talked about things that angered us and what we remember her doing for us as kids and even now. She started the breathing pattern that sometimes happens at the end and it just wore out her body. The next morning she was gone and I sat there staring at her chest, thinking I was was still seeing the heavy labored breathing but I didnt.She looked SO old, but finally able to rest. First morning since she was 14 years old that she didn't have to take her insulin shot, she always said she wanted a break. I don't think it's hit yet, but as I sort through the house I learn more about her every day and I feel very close to her. For anyone going through it right now, I am SO sorry, it's just so hard. No one can make decisions for you. I am only lucky that myself and those closest to her agreed on what we interpreted her last wishes to be. and again, lucky that she was able to go quickly, even though the minutes felt like hours. You'll get through it and it will all be O.K. sorry I took so long, and bored everyone, it's just all still so fresh. Best wishes. And please, let spell out you wishes ahead of time... |
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samish New Member Posts: 1 |
posted 09-11-2000 02:49 AM
Being involoved with an uncles death recently as a family member and as a hospice team member. I am saddened to say that the hospice care was minimal at best. The time of need was for only a one week period, so this made it difficult to develop a care plan. The best they could do in our situation was to give us the drugs to administer. For a county wide area of over 100 plus miles there were only two nurses. The quality of support was mostly in the form of obtaining drugs and syringes. I wish it could have been different, but the fact of funding and the dimished $ for providing this service had forced the hospice to a level of a runner for the family, not a supportor. Being involoved in health care for 18 years, has brought me to this saddened place. No one person has the power to influence change. But as a group we can move towards a realistic goal of supporting dying in the home. It is true dying is a labor just as it is when we are born. |
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carolsel Member Posts: 15 |
posted 09-11-2000 02:57 AM
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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Cyd Member Posts: 2 |
posted 09-11-2000 03:23 AM
In 1994 my father was told to go home and get his affairs in order. He did not have cancer but had alot of other things wrong with him. My father was the primary caregiver for my mother with alzheimers and my adopted brother that was developmentally disabled. My father wanted to do a 3-way murder suicide. He felt there would be no one to care for the others if he was to die first. Well bless him. He struggled for 3 more years. I know there were times he wanted to give up and behind closed doors and in the middle of the night he would break down and cry. My sister and I gave him all the emotional support we could. We found a perfect group home for our brother to live in. Our mom had to be put into a facility as my fathers failing health could not care for her increasing demand of her illness. After being in and out of the hospitol 15 times in 5 months he had a decision to make. He choose to discontinue dialysis. His death was a good one. We spent a week by his side and I was able to be his coach-comparing it to a labor coach. What a privalige this was. After his death in August I took Hospice training to become a volunteer. I felt no one should be alone during a time as this. No sooner did I finish the training that I came home and found my husband of 1 1/2 years dead. He had died accidently while working on his Classic Car, he got asphysixiated. I compared his death and that of my fathers and knew how lucky he was to have gone peacefully in perfect health and to have been doing something he loved so much. Now 2 1/2 years later my mother is still alive physically but thats about it. I hope this doesn't sound too bad but I wish she would be able to join my dad. I don't know why I felt the need to share this with anyone. I guess because all of us have such differant stories, and we need to tell them. In experiencing these 3 differant deaths and the people I work with through hospice volunteering I have a peace for life/death. I see the beauty in life and how if we pay attention life theres so much to experience. One day last March I sat by the side of a hospice client and he passed.Within the next few hours I was called to the hospital to share in the delivery of my 5th grandchild! What a beautiful way to see the life cycle. |
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DJNOEL New Member Posts: 1 |
posted 09-11-2000 09:29 AM
What a fantastic series! I am so pleased to see this kind of informational program series to be given to the public. I recently experienced for the first time in my life an upclose encounter with terminal cancer of my closest loved one...my father. He was a man of much dignity and strong willed spirit that touched myself and my brothers and our spouses in a way we will always respect him for mostly. He had a determination that everything was going to be done the way he wanted it to be for his last days. As his children, I being the oldest and his only daughter /daddys girl / he relied on me the most for the process of how things would be handled for all the neccesary legal matters such as a revocable living trust so my mother would be protected once he was gone. When he was first diagnosed with terminal lung cancer he did not want to face the fact he was going to die. He had a difficult time being acceptable to hospice care until I got him to agree with giving it a try, pointing out to him it would give my brother the 24hr care giver a break from time to time. He accepted the invitation to hospice with my guidance and actually enjoyed having them come to care for him once a schedule was started. He always had a joke for them and anyone else that would listen. He was that way to the end and I thank God and hospice for seeing things thru his way. I was not happy with the medical care he got from his primary doctor. I feel there is nothing worse than a doctor who is rude to his patient/s for having a "preventable" disease. The doctor was so insensitive as to expect my father to get out of his death bed to go in for an office visit during his last days, which I am pleased to say my father refused and became more accepting of his journey. He was never on feeding tubes or any kind of life sustaining equipment any more than oxygen and very low doses of morphine by pill. He said "just enought to take the edge off" because he wanted to be coherent as much as he could be so he would really be with us. In the end I was the one with him. He was not a religious man, spiritual tho. I gave my father permission to die. I was there to tell him again how much I love him and will always and it was his time to go with the angels. He died of respiratory failure while I guided him and held his hand. He was so very tired. He had accomplished all of the goals he set for himself during his last 4 months of life. He made it thru the holidays, wedding anniversary, the new year, and lastly my brothers birthday the day before he left us. I have had much difficulty with his death just as I have with the acceptance of it. I would like for more awareness of death and dying to be available to people moreso. And as a requirement for doctors to be educated as to how to treat these situations with more compassion and empathy and understanding for all involved. I thank you for your program. I only wish I had seen it before I experienced it up close and personal....Thank You..... |
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winfield32 Member Posts: 2 |
posted 09-11-2000 10:04 AM
On an evening in November several years ago, I received a life-changing call from my father: "I've got cancer!". My mother was left to finish by saying that it was advanced liver cancer, terminal, and he had only 2 months to live... With my 21 year old son, I drove the 240 miles to their home the next morning and continued this journey many times, as I wanted to spend as much time with him while there still was time, time to share, reminise, but mostly just be there with my physical, caring presence, watching sports on TV, eating my mother's gourmet meals and supporting his decision to die at home with dignity. I was able to learn a great deal about dying, being able to spend the last two weeks of his life, together with his two sisters, my mother, and Hospice members: helping with his end-stage care, shaving, stabilizing him as we walked face-to-face backwards into the bathroom, giving him meds and even helping to put his body on a funeral home cart, when it was all over. A comment about Hospice workers: after he passed away, we had his Hospice workers over to the house. We talked for an hour or so about the positive qualities of my father, his sense of humor, his practical jokes, etc. When it was time for them to leave, they all broke down in tears and told us how wonderful we were for having a time for CLOSURE with my father's death, so wonderful in fact that it made up for a lot of closure for the death of others that they had been carrying for a while! After a death in a hospice situation, let's not forget to reach out to the hospice caregivers and the invisible pain they oftentimes have to bear, as they move from one death to the next... a positive and oftentimes funny discussion about my father's life over finger foods and beverages was a small but important way to say 'thank you' to the critical members of my Dad's team. If this helps just one more hospice team, I will be happy. Thanks for letting me share. |
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marilyn New Member Posts: 1 |
posted 09-11-2000 11:00 AM
My 79-year old, diabetic mother died this Saturday, 9/9 after 2 weeks in the CCU. She was taken there 8/28 because she was lethargic and disoriented - her live-in caregiver became alarmed and called paramedics. Her vital signs were fine at the house, but then her heart stopped in the ambulance. The doctors posed one scenario after another over the next few days, finally ending with a staph infection that raced throughout her body and attacked her organs. The doctors told us on several occasions to prepare for her death, but then returned with promising test results - which then reversed the following days. We came to see her each day, brought family pictures and her favorite music...finally on Saturday, the doctors told us her situation was terminal and, since my mother had an AMD, we made the decision to remove the ventilator. We all gathered around her bed, played her music, touched her and each other while the nurses administered morphine and the machine was turned off. All 5 of the children felt the presence of our father, who died under similar circumstances 6 years earlier. We knew he was there to help us let her go and to take her spirit with him. She died peacefully a few minutes after the ventilator was turned off. As I sit here typing and crying, I know that we did the right thing for my mother. What made this doubly difficult was the turmoil stirred up by my mother's primary physician. While we had been encouraged to ask questions, he complained that certain family members were asking "too many" questions which interfered with her care and then came back with a restrictive visitation plan that kept family members away from her. The family split and some accused others of endangering her care...why would a doctor do this to what he considered a terminal patient?! We filed a complaint with the hospital and even though there was no apology, one nurse was removed from her case and the others were very supportive to the end. I just don't think that the overall medical establishment has been able to deal with their own inability to recognize and support families in these instances...we were seen as a tremendous inconvenience in their busy day. We are busy planning her funeral which we want to be a celebration of her life and the 5 children she and my father raised. I've heard it said you don't truly realize how much a person has given you until they're no longer within your reach...it has come home to me again with the loss of my mother. I only hope I can remember and apply this thought with the rest of my relationships. |
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mgavin Member Posts: 4 |
posted 09-11-2000 02:19 PM
What wonderful stories people are sharing! How generous! I am struck by the fact that, in most cases, once families get palliative/hospice care, they benefit greatly. Unfortunately the shift seems to be too hard to make in the acute care setting . If there were a pallitive care team asked to consult early and often, the movement to dispense with futile interventions would come more naturally. |
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