SHARE YOUR STORIES

I appreciate Jacqueline's story. It helps me a great deal. I have come close to death twice. I cannot trust my family to carry out my wishes and I certainly do not want my daughter to make difficult choices. Reading the stories shared has prompted me to do the necessary paperwork. I have a trusted friend that would honor my wishes. Thank you.

-Sonia, 1/14/2014

My mother we diagnosed with stage 4 lung cancer. My sister and I with the help of hospice took her home to die. After hours of being in the dying process I placed my arm around her neck and told her I loved her and I was going to moiston her mouth and she looked at me as to say something, she smiled with her beautiful eyes and passed in my arms. She was at complete peace and exuded pure love. Although I will never ever stop missing her I know she was at peace, at home surrounded by the ones who loved her and extremely happy. Today my children know my wishes to pass in the very same way . Life, from birth to death, is an amazing process and all should understand this .

-Maureen, 8/9/2013

Today is just nine days short of the first anniversary of the death of my wife, my children’s mother, my grandchildren’s, Gran Gran. In four short months, from March until June, my wife went from a vibrant part of all our lives to being a tragic and painful memory, a victim of pancreatic cancer. She was misdiagnosed for almost two years with pain they thought was from her spine but was actually from her pancreas. My 40 years in healthcare now have taught me a lesson of group think in medicine and the need for only one “expert” to be wrong, to lead all the other followers behind their diagnosis and never challenging it again. As I tried to “skillfully” lead my wife and family through all the treatment discussions, statistics and physician discussions, I was defeated by my own trust of the system and the professions. In the end it was my wife’s intuition that was correct and not my own guided by a palliative care director or the hospice staff she directed. I was assured that nothing would be done to accelerate death and I in turn assured my wife who wouldn’t believe them but in the end did and signed a consent to go on hospice. We brought her home after a failed attempt at surgery that a CAT Scan failed to show, even with contrast, 24 hours before surgery, that she was full of abdominal metastases. What ever does a “clean” CAT scan mean now or in the future? We set-up our sun room as a hospital room and the first night my wife insisted on sleeping with me. The next night she slept in the sun room because now her pain was unabated. Worst of all it was being attributed to the cancer and it was coming from her knee which they wouldn’t treat or even call in an ortho consult for because, “she’s terminal, who’s going to treat her?” So under the direction of hospice we started administering drugs as directed: my three children and I, on a round the clock schedule. In no time Gran Gran was in a drug-induced coma and continued to fight to remain conscious. On the fourth day at 3am we could take no more; we were all emotionally shattered and exhausted. No one would come in and help or even see her in the night. She was transported to inpatient hospice and while the Catholic facility was caring, they would administer no water or food. They argued that that they couldn’t lest she have to be transported to a hospital ICU and she wouldn’t survive the trip. So day by day as I asked them to at least give her fluids and as she ate her own body smaller and smaller, she died of thirst and in the end, one more injection of morphine. To say that they told me that they had never seen anyone survive more than two weeks without food and water was almost barbaric to my ears. I wondered at the original studies, Nazi Germany? So my wife was right, hospice would shorten her life and I collaborated in the injustice, and I will never forgive myself and I must live everyday with the memory of the horror of seeing my wife transform from happy and walking around one day to looking like a corpse from a concentration camp in the end. The famous painting called “Scream” accurately captured her look in the end. So I can’t recommend hospice or even palliative care. We were too trusting and it has left our family with a very different memory than the one that was described in “one Slide.” I am still so saddened by it all. rnm

-Robert, 6/19/2013

Larry was a Viet Nam Vet strong and caring man. He got lung cancer in 2010 and fought with chemo and surgery. This year the chemo no longer worked and the VA told him they had nothing else to go home and make his arrangements. Larry gave up on modern medicine and and started with Hospice. Hospice was good to give him small doses of medication most of what he could not tolerate so his suffering was terrible. He could not breath and could not sleep or eat. Although we asked for sedation he was denied by the Hospital and Hospice doctors. His Faith in God made him hold on until he could not take any more pain and indignity. Unwilling to go into diapers and put his family or himself through any more suffering and without other options, he chose to take his life by shooting himself in the head. Our family will always suffer the end result of his lack of choices and care by our medical society. We Pray each day that people will learn how much we need to change the laws to allow terminally ill people to die in peace. If you are in a burning building right now all you can do is burn to death or jump…what will you do when it is your turn?

-Anonymous, 11/21/2012

In 2011, my husband Ron survived sudden cardiac arrest. He was revived after 25 minutes of CPR. Although he survived he was left with an Anoxic Brain Injury. He was hospitalized for 40 days and nights, and I, along with my sister. spent almost every waking and sleeping moment at his bedside. We fought for him, we cared for him, and we loved him through it all. Throughout these days and nights his behavior was bizarre and he was unrecognizable as the man we knew. About 2.5 weeks into this ordeal I was faced with the paliative care team at the hospital. As his wife, I had been making all the medical decisions for him since the night this all began. Now they were asking me to make decisions for his future care.. And it was frightening. We’d never had this conversation. So all I could do was go with my instincts, to say that I did not think my husband would want to have CPR again, if the outcome could possibly be worse. It made me feel sick to my stomach to think that for such an important decision on life or death, that I was “guessing what my husband would want.” Around the 37th day, we were at the point of discharge from the hospital. But Ron needed rehabilitation. Unfortunately, his condition made him a high risk for any facility close to home to handle. I could not bear the thought of shipping him off to one more setting that I could not control, and I could not in good conscience leave him alone for any period of time. So, with the help of my sister and the support of family and friends, I brought him home. I know that secretly, many people thought I was crazy. Secretly, I thought I was crazy. And then the most amazing thing happened. in familiar surroundings, he improved. Carefully we took away the medicines that were interfering with his balance, and his thought processes. After several days, I didn’t have to follow him around the house, worried about falls. So, today, our story has a happy ending. We don’t know what tomorrow brings, but we never really have known that. We have since talked briefly about his wishes regarding CPR. But now, you have given me a tool to talk with him in more detail, so I can truly know his full wishes. Thank you for sharing your story, and now I will try to share your message.

-cindy, 4/11/2012

My sister passed away 2 1/2 years ago. She was 48. Problems started with a twisted intestine. After the operation she went into a rehabilitation facility. There they gave her an antibiotic that caused her to get Stevens Johnson syndrome. Had to be placed in a burn unit for close to a month. At times in that month I felt my sister had so much pain she wanted to die but after day after day of me coaxing her to walk she finally made it home. Three weeks later she contracted the flesh eating virus and never again left the ICU until I brought her home to die 4 months later. I saw her go through 20 operations and eventually lose her ability to breathe on her own. Twenty doctors met with her husband, me and both of my parents to tell us she would never live without being on a machine. My dad said no more. We went into my sisters room after that and it was like she knew. She told me not to worry that she was going to a much better place and that she loved me very much. I knew she wanted to be home to die. From that point on my husband and I did everything in our power to make that happen for her. Her husband was by her for most of this. However it was like he didn't understand how sick she was. Everytime I asked how she was doing he said she is fine. My sister came home on May 29th 2009. My brother had filled her home with orchids. Hospice was there. She promptly told them to go away with her hands. They medicated her to make her comfortable. She looked at me with pleading eyes that said she was done her on earth. And then I told her to go. Everything will be okay here. Her husband was across that street when she passed. When he came home and found out she was gone, he started throwing things and screaming. I felt so bad for my parents. In a way though I thought that my sister wanted us there to help her and to let us see what life with her husband was really like. We waited till she was taken to the funeral home and then I took my parents home with me. I miss my sister everyday. I am so glad she got to go home and that when she closed her eyes for the last time it was here home she saw and not a cold hospital room.

-Sharon, 1/31/2012

Just seeking resources for detailed information about how to have end of life discussions and when, and what role has the minister in this matter vs. the daughters. Also seeking information about how hospice works. I"ll pursue information on your website, with much appreciation.

-Ann, 12/1/2011

Warning: Life is Terminal! We will all die, but our youth-oriented society finds this hard to accept. My book, Spirit Matters: How to Remain Fully Alive with a Life-limiting Illness, is about helping people live while they are dying. It focuses on the importance of keeping the spirit, who we are as a person, alive and well when faced with a terminal illness. It brings hope and assurance that the end of life does not have to be a physically painful, frightening and isolated experience. In my twelve years as a hospice nurse, my patients taught me many important truths about dying. In Spirit Matters, these truths are powerfully presented through the personal stories of dying people that I knew and cared for. Each chapter addresses a particular issue related to what is really important at the end of life. It will bring laughter and tears and inspiration. Most importantly, it will educate and empower the dying and their loved ones to take control of crucial decisions that are currently left to medical and bureaucratic systems that have little understanding of their real needs. I am aware that numerous books have been written about death and dying. I have read many of them, but have found none that deliver the message contained in this book. Although hospice plays a significant role, this is not a book about hospice. It is about the human spirit at the end of life and the struggle to keep it healthy against the ravages of the disease and the onslaught of fear and ignorance that is often encountered. My website is www.judyflickinger.com. I hope that you will read my book and encourage others to read it. Although I am a retired R.N. I volunteer for hospice and give presentations about my book once or twice a week. I live in The Villages, FL with a population of 85,000 citizens 55 or older. I’m very busy giving presentations! I look forward to hearing from you.

-Judy, 5/6/2011

I am an ICU nurse of 30 years. In the last several years I've become more involved with end of life discussions and seminars. Recently I dipped my toes in the blog waters and have started a blog http://endoflifetalk.blogspot.com/ in hopes of educating more people. In my research for some seminars I'm doing I stumbled on your website. I've blogged about it, added the video and plan to use it in a seminar next month. Thank you so much for sharing your story.

-Pam, 4/18/2011

Enduring my 6th Decade on this planet, my thoughts on the end of life are many. The Hospice movement is a catalyst for deeper understanding of Palliative care for the ones you love or for yourself the writer, as the case may be. A few years ago I had the opportunity to visit the Husband of a dear friend who was in the transitioning period of his end days. Walking from the elevator into a crowded Nurses pathway took my mind off of the purpose of my visit. Caring for people in all levels of distress, these are not RN’s, they and their team are Angels. After locating the room of my Friend I entered so gingerly. I announced myself and immediately connected with a peaceful ambiance that filled the room with a certain calm. Josh was alert and ever the wit, in good if not guarded spirit. We spoke lightly of common interests, ideas and subjects two guitar players might string together. After a period of time I left the Hospital feeling light of heart and calm in a way that is hard if not difficult to explain. Over time we go on with our lives all the while accompanied by the presence of a different outlook on living and dying. Bucket lists are spot on for the mobile ones, repairing broken bridges for others is reasonable too. Making peace within is a difficult task, understanding and resolve will smooth the path ahead.

-jay, 4/17/2011