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 The Issues
 Real-Life Stories (Page 3)
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Stamm44 Moderator Posts: 63 |
posted 09-13-2000 01:21 PM
  
quote: I have been blessed or cursed by experiencing death in my family for the past 15 years. My grandfather passed away first, followed by my grandmother, uncle, aunt, and finally mother. I have watched slow and agonizing deaths caused by cancer in all but one situation. My family was honored to witness the death of my dear mother two years ago from liver cancer. After diagnosis she was to take a vacation to Las Vegas before undergoing chemotherapy. One week before departure she canceled. Two days after her supposed departure she was admitted to the hospital after spitting up blood. She clung tightly to life against extraordinary odds, waiting for my family to return from their trip. When they returned she hugged each and everyone of us and said her goodbyes. She passed peacefully in her sleep with a smile on her face as all of us held hands around her hospital bed. She died as she lived, on her terms.[/QUOTE] Daimyo, thank you for your story. I think that your last sentence sums up what many of us are hoping for, for ourselves and our loved ones. 'She died as she lived, on her terms.' [This message has been edited by Stamm44 (edited 09-18-2000).] |
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Mom Member Posts: 2 |
posted 09-13-2000 03:07 PM
Thanks to help from hospice, my daughter was able to die exactly as she wanted to. She was diagnosed with Ovarian cancer only a few months after her wedding 4 years ago. She fought harder and with more courage than anyone I know. After 7 different types of chemo and 4 operations, she died in October '99 at the age of 30. My daughter was a teacher and although her entire oncology team strenuously disapproved, she continued to teach until just a few months before she died. Her reason for getting up in the morning, the thing that gave her life PURPOSE, and the thing that made her LAUGH most, was teaching. She finally left teaching when she became too weak to be in the classroom without help. At this point, her husband (also a teacher) and I (taking a leave from my job) began sharing her care. I arrived at their home (an hour's drive from mine) at 6:30am and usually left around 8pm each day. This continued for about 3 months until she passed away. Thank God for hospice! Ovarian cancer is a very painful disease, especially near the end. Hospice was able to control her pain very well and still allow her to be awake and conscious a good part of the time until she went into a coma the day before she died. Their social worker was a Godsend! She came to the house often to talk with my daughter and me about anything on our minds - this was a tremendous help. Caring for my daughter in those last months was the most wonderful, most difficult, most intense time in my life. I cannot imagine ever again doing something so important for my daughter, her husband, or myself. Because of hospice's help, my daughter was able to die exactly as she wanted to: in her own home, in a bed facing huge windows with the sun streaming in, and with her loved ones beside her. She was able to plan her own funeral and memorial service (some people thought this was WEIRD, but it was very important to her - she'd lost all control over her life at this point, so she wanted complete control over her death and the arrangements). I'm incredibly grateful to hospice for making this possible. |
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Virginia P. Brewer New Member Posts: 1 |
posted 09-13-2000 06:23 PM
I am a person living with ALS. I find this series very helpful to me and my family. I am very lucky to have a wonderful family and group of friends who support and encourage my own goals in life as I approach my own death. If I were not able to think and plan toward the inevitable, I would proably give up right now. Self determination is very important to me. With physical abilities diminishing daily, I need to exercise my spiritual course and retain some power over what happens to me and my family. Your series supports that view. Thank you so much. |
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Mare New Member Posts: 1 |
posted 09-13-2000 07:36 PM
My mother was diagnosed with ALS 3 years ago. She is 67. She has the Bulbar form and cannot speak, drools constantly,has great difficulty swallowing,has a feeding tube and is now experiencing foot drop and is close to needing a wheelchair. She still lives by herself in an apartment. She wants to end it all now. She has asked her 4 daughters to help her. She feels her quality of life is over. My sisters and myself are having a very difficult time with this, as she is still vital in OUR minds. We can enjoy a movie with her, get advice via email from her, get hugs, see her beautiful smile but she does not want to be moved to assisted living or go into a wheelchair. I am afraid if we don't help her or be there when she takes her life she will do it anyway without us with her. She is very determined not to become a burden and wishes we could see it her way. It is very difficult to agree to see her through this decision. She is not afraid of dying but we can't help but think she is giving up too soon. She has been watching the series with Bill Moyers and I am taping it because I don't think I am ready to watch it.Facing it in reality is hard enough. I know if Dr. Kevorkian was not in prison she would be contacting him now. If she was suffering and laying in a bed unable to move I would absolutely help her but she is not there yet. |
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doodle1 New Member Posts: 1 |
posted 09-13-2000 08:13 PM
Some years ago my grandfather died of cancer. He always had to breakthrough in severe pain before he could get another dose in the hospital. My former girlfriend’s father and I were friends, and for two years he fought colon cancer, only to die, in total agony, in the last two months. My aunt, who was on staff at the hospital, said that they weren’t prescribing enough morphine because of addiction concerns. A friend of the family fought cancer from the age of fifteen for six years, while she lost her leg, part of her pelvis, reproductive organs, one lung, an arm, and colon. When she finally decided enough was enough, she was assured she would be kept comfortable, and in her final days her MD left for a long weekend and forgot to prescribe her pain medication schedule. The staff seemed paranoid about addiction. The three days before she died were filled with bone pain and she passed on in horrific, shrieking agony, begging people to kill her. I will never forget hearing her as long as I live. (Both individuals had been told on numerous occasions that they didn’t have long to live. Guess the staff hoped their patients would go on) Very recently, a work associate suffered third degree burns on his back and arm. His wife has told me that during rehabilitation, they debride his burns without anesthetic. I was shocked to hear this. Didn’t we discover anesthetics over 100 years ago? What is wrong with modern medicine? I have mixed feelings on the right to die. I feel that if I did get cancer, after seeing that young woman die, and my experiences with other illnesses, I would end it quickly and dispense with "pain management". One thing that the show has not addressed-if I am paralyzed, and am a high quad, is it possible to get someone to disconnect me, and can I get morphine to help? What if I’m just paralyzed from the neck down? Do I have to starve myself to death? The one thing that terrifies me more than cancer is paralysis and not having anyone to help me end the suffering. My personal experiences with death, and the medical community in general, have been negative to say the least. The lack of pain management is something that I believe most of us will experience, brought on by a culture of drug paranoia fostered by the war on drugs. |
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mini4055 New Member Posts: 1 |
posted 09-13-2000 09:10 PM
I lost my huband on August 12 2000 from lung cancer. He fought a gallent fight for a year. We also discussed all our wants and fears. We both agreed that the worst thing to have happen was not being able to control his pain. He didn't want to have his death prolonged. The nurse on duty that nite wanted him to have a breathing treatment but I refused. I don't feel I caused him to die,rather I faithfully let him go home. |
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PhoebeMoon New Member Posts: 1 |
posted 09-13-2000 10:56 PM
My Dad passed with lung cancer July 4th 1997. He was able to pass at home with the help of hospice care...the hospice care I seen him recieve was mostly medical. I was to start a new job in June of that year and luckily after explaining the situation with them they let me delay starting. In June my Dad's cancer really progressed and I was at my Mom and Dad's house every day helping with medications, meals and support. Some days were real good others were not. I have 3 sons...my Dad's only grandchildren...and I brought the youngest with me everyday. On the good days Dad would sit with my son and talk and play...on bad days he would talk with him only. I remember many conversations with Dad....things he was seeing, people he was seeing as he got glimpes of the other side. He even told me of a dream I had had just previously and I had not told him of the dream. While he was in these altered states of consciousness he told me I could not join him yet that I had a mission. Until now I have been wondering around looking for this "mission". Now my Grandmother with whom I am extremely close is suffering with Alzehiemers, in a nursing home. I am currently enrolled in College studying Human Services and hope to get my degree and become part of a hospice team to help people "re-birth". I believe now that is the "mission" my Dad spoke of. The last thing he was able to say to me...which was also his last words before he slipped into the coma that preceeded his death....was "Sis,I thought it would be easier than this." If I had more training then I could have made it easier. But that I feel was also his way of telling me...get to it. Thank you for letting me share this. This program I hope was seen by many people and that things are starting to change for the better. We need diginity with "death"....I like to call it re-birthing. And we need more mid wives to help in the process. |
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jz New Member Posts: 1 |
posted 09-13-2000 11:04 PM
Dear Mr. Moyers, Thank you. For five years I have felt like a monster. Your program gave me solace. Thank you. Every person should have the chance, the right and the privilege to have the same dignity in death that we are afforded in life. Mrs. Rayl's daughters helped me to see that it is not monstrous to be a part of a loved one's safe and comfortable departure. Thnak you for your clear and especially caring reporting. |
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Cybereyes Member Posts: 2 |
posted 09-13-2000 11:40 PM
My mother died in the early 1980's, but she had the foresight at that time to prepare me for her death, arranging her funeral, and even addressing my grief. She wrote me a letter, sealed it with directions to open upon her death, and it contained directions for what to do for her funeral. We, my father/I, had a cookbook approach to funeral implementation. It was so easy --- we did not have to make any decisions other than to follow her directions. She had asked to talk with me alone about one week before her death and let me know in that discussion that she was about to die and that i had done all I could as a daughter --- that I had been a good daughter. What a consulation to know in my grief that she knew, and was thankful for, how much I loved her. I thank God that she had good enough insurance coverage to have been afforded death with dignity. Much has changed with insurances since then, and I wonder if she would have been afforded that dignity with today's insurance confusion. And finally, thank you to the Moyers/PBS for having the vision and foresight to do this series. Thank you, thank you, thank you! |
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thorp_jim Member Posts: 4 |
posted 09-15-2000 11:17 PM
quote: If she is still competent and can express her wishes she should be able to have the feeding tube withdrawn, which may be your best option (no ethical quandries - it's the _same_ as saying "no ventilator"). Please see an lawyer, preferably one practicing in elderlaw. _Please_ explore that option for her - no Dr. K necessary! I've been reading alot of books lately written by those involved in end of life care (see lastacts.org) and dying from malnutrition (e.g. by discontiuing the feeding tube) is universally described as a very easy way to die with the patient essentially sleeping away their last few weeks of life. My mom has advanced dementia and at this stage I pray she will stop eating (or become unable to swallow) and slip away. It would be much preferable to her developing pneumonia, since I know from those aforementioned books, from personal experience, and from online discussion forums death from pneumonia can go either way. It can be a very easy peaceful death OR it can be absolutely horrendous for both the patient and caregiver, even with hospice and pain meds. We think of food as comfort and security, but feeding tubes are neither. It isn't food when it comes from a pharmacy and is forced into the body in a parallel method to that of a ventilator forcing air into the lungs. |
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Shawn New Member Posts: 1 |
posted 09-15-2000 11:58 PM
Thank you for this wonderful series and thank you to the families involved. My story begins with my grandmother who died of ALS/Lou Gehrig's Disease this past January. She was unfortunate to have believed that her HMO doctor was wonderful and caring. She complained about weakness and cramping in her limbs...he gave her antidepressants. When I spoke to him about her symptoms, his reply to me was,"she's getting old". In fact, she was actually a outgoing, happy 75 year-young woman. Her neurologist told her she had bone spurs on her neck, which was causing the weakness. He proceeded with two surgeries six months apart. As her body began to fail day by day,I felt I had to do something, even if it was only to get a correct diagnosis. I set up an appointment with a different neurologist. I explained her symptoms and asked him to rule out ALS (knowing that some doctors don't like patients who self-diagnose). After examining her, his conclusion was ALS. Two months later she died. I feel that if her HMO doctor had cared more she would have been diagnosed with ALS early on in the disease and she wouldn't have had to go through two surgeries, family members would have been aware of the stages of ALS, and while in the hospital she wouldn't have been forced to eat and drink even though she would choke. Although there is no cure for ALS, her quality of life would have been better if only she would have had a doctor who actually took time to listen to her. Once we get past that first hurdle of a diagnosis it looks like most everything else is in place regarding paliative care and opening the discussion for doctor assisted suicide. |
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Ginnie Member Posts: 3 |
posted 09-25-2000 10:19 AM
quote: I just found this site, and good place to talk. My mom was place in hospice three weeks ago. Prior, her grandson, my son was her companion for two years, delaying his college studies so I could keep my job. I still could not work for 7 months. We placed mom in a facility with 6 beds this monday past. I feel quilty that we couldn't do it, even with a night nurse. Now in the home she is lonely, not surrounded by "us" and because she is mentally OK, making me feel terrible in little ways. How do I deal with this? Ginnie |
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Stamm44 Moderator Posts: 63 |
posted 09-27-2000 10:24 AM
quote: I just found this site, and good place to talk. My mom was place in hospice three weeks ago. Prior, her grandson, my son was her companion for two years, delaying his college studies so I could keep my job. I still could not work for 7 months. We placed mom in a facility with 6 beds this monday past. I feel quilty that we couldn't do it, even with a night nurse. Now in the home she is lonely, not surrounded by "us" and because she is mentally OK, making me feel terrible in little ways. How do I deal with this? Ginnie[/B][/QUOTE] Hi Ginnie. Sorry to hear about your situation. Have the folks at Hospice been talking to you about how to provide the comfort care your Mom needs? Our Hospice has a good social worker and a chaplain to help work through these issues for which there ultimately may be no ideal solution. You have to be concerned as well about how your Mom's illness affects the primary caregivers, both yourself and your son. Those needs can seem to be in conflict, but if you are doing your best, having guilt on top of it all is tough. That's where talking those choices through with a chaplain or social worker can be a help. God bless. |
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toranaga New Member Posts: 1 |
posted 04-07-2001 05:00 PM
I took care of my father, mother and husband, all of whom died from cancer. I found that some of the doctors had a big problem with coming right out and telling me frankly that my loved one was going to die. They always seemed to want to hold out some small thread of hope. This is a great diservice to the family and especially to the dying person. We as a society really need to learn that dying is part of living and deal with it. Of course it is tragically sad, and we all have to handle it in a way that is best for us. I remember when my dad was dying and wouldn't eat anymore that I thought how can he live if he won't eat? I guess that since he was the first person who was close to me to go that I just couldn't understand that it was his system shutting down and this was all part of the process. Losing someone you love will never be easy. You can still have good times and fun but life is just never the same. I think it is very important to have someone to lean on while you are grieving, which can be a very long time. Don't be alone too much or it can become unbearable. |
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guillaume New Member Posts: 1 |
posted 08-16-2001 03:14 PM
I had an experience that is only a week or two old as of 8.16.01. My lover's mother recently died, after a fairly quick battle with brain/lung/cancer. She lived in a small town in Kansas, but received the best hopsice care I could have imagined. She died on the 21st of July, very peacefully in her home with her son at her side. I was there, and witnessed the event, and feel tremendously fourtunate to have been there. I have experienced death before, but never have I actually witnessed the actual death taking place. After it happened, people would come up and say oh, how difficult this must have been...etc and I have to say that this was one of the most peaceful times in my life, and i know for sure that her transition was a peaceful one as well. I don't know what I'm trying to say, but I watched this program last night, and found it to be so compelling that I found myself on this site, and typing this account of what has happened to me in the last few weeks. |
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ncsamish New Member Posts: 1 |
posted 02-23-2002 04:18 PM
I'm looking for relatives. If your surname is SAMISH please contact me at ncsamish@mindspring.com. Thanks. quote: |
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dadlittlegirl New Member Posts: 1 |
posted 05-03-2004 04:09 AM
My dad is suffering from his cancer now. I am really in a loss as his condition has deteriorated. May I know, based on your experience, what kind of symptons should I take note? UOTE]Originally posted by PhoebeMoon: |
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