As someone who does have this illness, I found the treatment of Lynn and her family by the medical profession in the UK absolutley unbelievable and autrocious! To then squeeze the Lynn's foot with every ounce of strength he had to prove she was faking with not response If you don't know what living with Myalgic Encephalomyelitis ME is about, I highly recommend reading this book.
To then squeeze the Lynn's foot with every ounce of strength he had to prove she was faking with not response from her, and then to continue thinking she was faking is absolutely disgusting. Doctors who do this, should in my opnion, be terminated and never allowed to work in this profession ever again. They are futher traumatized by the very professionals who should be looking for the pathologies and helping the patients manage a very complex and difficult illness.
As Dr. Byond Hyde has said, "Psychologists need to get out of the diagnosis arena". Patients and their families need to continue to be a loud voice against the unimaginable abuse, mistreatment, dismissal, and discounting that is being done through many in the medical arena and governmental arena. Also, lastly, doctors and researchers like Dr. Cheney, Dr. Bell, and Dr. Hyde need to also continue to speak out and stand up for ME patients all over the world.
View 1 comment. Apr 22, Sarah added it. This is in no way an enjoyable read, so I'm not rating it for that reason. The story of Lynn Gilderdale was one that united the M. E community, and she became an inspiration to many. After her mother Kay came in to the public eye after the attempted murder charge against her caused outrage, the story became one that dominated the media.
I'm glad she has chosen to share Lynn's story, something which would have been immensly tough to recount. This is a difficult read, as Lynn suffered so terribly, This is in no way an enjoyable read, so I'm not rating it for that reason. This is a difficult read, as Lynn suffered so terribly, but I hope that those who read it have their eyes opened to the horror that is severe M.
A well written, beautiful account of a girl who suffered to far too much and wanted to escape, emotional reading. Jul 24, Fenyx rated it it was amazing. This is a truly moving story about a young lady's struggle with the devastating illness called Myalgic Encephalomyelitis. As a severe ME sufferer myself, I saw so much of myself in her story. It was also good to hear the story told from the carer's perspective. This book is well written. It will make you laugh, cry, get angry, and smile.
In fact, it was difficult to put down! I commend Lynn's mom for her courage in caring for her daughter and doing what was best for her right up to the very end, This is a truly moving story about a young lady's struggle with the devastating illness called Myalgic Encephalomyelitis. I commend Lynn's mom for her courage in caring for her daughter and doing what was best for her right up to the very end, and for continuing to spread awareness of this terrible disease.
If you're on the fence about whether or not to read this book, do it! It is a story you'll carry with you for the rest of your life. Oct 06, Ruth Ross rated it it was amazing. This story is very moving and emotional, I read it in 2 sittings. It tells the true story of a mothers deep love for her daughter, of how she has watched her suffer with a terrible disease for more than half her life, the treatment they had with various health authorises and the most difficult decision she ever has to make. I found this to be a very emotional story and despite having a s This story is very moving and emotional, I read it in 2 sittings.
I found this to be a very emotional story and despite having a severely mental and physically disabled daughter who in some ways suffers from similar symptons I am left feeling very blessed and thankful. May 30, Keri Jo rated it it was amazing. Amazing story of courage from the mother and daughter, as I myself have experienced similar treatment from health professionals of making out you are mad and theres nothing wrong, when all along you are harbouring a terrible illness.
I have much admiration for the mothers spirit, 17 years of hell. This lady helped her daughter to die, which was heart breaking, but also very debateable on the morals though I am personally with the mother. Read and make your mind up. So very tragic, yet the braver Amazing story of courage from the mother and daughter, as I myself have experienced similar treatment from health professionals of making out you are mad and theres nothing wrong, when all along you are harbouring a terrible illness.
So very tragic, yet the bravery is immense Oct 24, Ria rated it it was amazing. There are support resources that may help you. I suggest you have a geriatric physician or treating oncologist assess her for whether or not she needs antidepressants or other medications to help her feel less anger or agitation, or feel more calm.
She may also need medical support to reduce any physical pain she is suffering. You could ask the doctor who examines your grandmother to refer her for a psychiatric social worker assessment to help you all come to some decisions about how to move forward. And you are not alone, I have many, many stories I could tell of elders behaving very badly toward their families and caregivers in the last years or months of their lives.
Please take care of yourself, your daughter, and reach out for help in resolving this situation so all of you get what you need and can be at peace. As a former lawyer who did some work in elder law, and current chaplain for a hospice, I am so appreciative to see all the points I make with client families along the way in one place.
What a gift for your readers as so many folks come into these situations isolated, afraid and without resources to assist them. Interestingly, I may be spending my winters in Waitsfield in the next several years my husband will be retiring and will be looking for hospice or hospital chaplaincy work if you are aware of any organizations you particularly respect in Northern Vermont. Hi Lynne, Thank you for leaving such a lovely comment! Northern Vermont is beautiful in winter — hope you enjoy! In January , my husband, Roger, was diagnosed with stage iv-advanced pharyngeal cancer that has since spread to his lungs.
Ten days ago, the radiation oncologist told us that he estimates that Roger has approximately months to live. How very surreal when you know this in your heart, but the doctor finally lays it on the line. When Roger retired, he moved from Texas to his home town in Oklahoma.
One Last Goodbye: Sometimes only a mother's love can help end the pain
I have elderly parents, so for the last 6 years, I have traveled back and forth. I am his sole caregiver and I keep constant watch over him. He is sleeping more and more and I noticed that he is having muscle spasms all over his body. I feel that death is approaching sooner than later. Although the doctor said that they could not do anything else for him, he still has two scheduled appointments on July 11th and he figures that he has nothing to lose. I came across this site and felt compelled to write, as others did, to let you know how helpful and informative I found your writing.
Angela, thank you for the kindness of leaving this message for us all. If your husband refuses hospice, you may ask the doctor to prescribe home health services for Roger, to get a nurse in for pain management, and an aide in to the house to help you with his care. Sometimes before hospice comes into a situation, home health is already there providing nursing and aide level care helping with pain management, bathing, etc.
I also wonder if you could tell Roger that YOU need him to enroll in hospice care because you need the support to help you care for him at home.
Goodbye Quotes and Farewell Sayings & Messages
I hope that you are able to find the help you both need at this time. My husband recently passed away after a year-long fight with pancreatic cancer. The last month he was in hospice care at home pretty cognizant for about 20 days of that. The last seven days were the hardest because he would no longer respond to most stimuli. Up until his last day though he would respond slightly whenever I gave him a kiss on the side of the mouth. But you gave him a well supported death at home where he was most comfortable among the things familiar to him.
Perhaps, you might think of your instinct to talk with him and not hold him constantly was actually what he needed — he was in the process of letting go of this life. If you had held him constantly, maybe it would have made it harder for him to leave his body, a body that no longer supported his life. My experience is we somehow just know what the dying person needs and only later when we think about it do we add layers of second-guessing ourselves.
Clearly, you love your husband dearly, and you loved him well through his dying not just his living time on earth. Or finding a way to sleep with him in the hospice bed. Oh well. Thank you so much for your sharing website. I just got home from visiting my grandmother who is 99 years old and in hospice. Thank you for explaining about the spasms and pain. The nurse did give her oral morphine and it seemed to calm her. You intuited that your grandmother was in pain and got her the help she needed.
Without your visit, the pain relief might not have happened. I hope you will share this site with your friends, colleagues and family members. And thank you for sharing that experience — I know it will help others. Paula my name is also paula…so maybe it was destiny that i found this site. Today is day 7 of my vigil for my mother. Today is her 91st birthday. I play a favorite cd of country classics; Timeless by Martina Mcbride. I did this for my dads passing too. You can see them relax when its on. You are so right about them being aware.
She was still trying to take care of me… paula m. Hi Paula — thank you so much for taking the time to share your experience with your Mom with us all. We should all be so fortunate to have those who love us with us at our time of death. Sounds to me like you are doing a great job caring for your Mom. So glad the posts you found here support you as your support your Mom at this time. Love never dies. Take good care — Paula. Sitting vigil right now for my boyfriend. We have a wonderful relationship, and he is clearly expressing a need for space, non touch, definitely no conversation, other than when he needs something.
He is drifting in and out of lucidity, and is peaceful. After 3 months of heart wrenching pain from bone marrow cancer, he is letting go. I am sad, but looking forward to an end to his pain. Home hospice coming tomorrow. Hi Chris, it sounds like you are giving your boyfriend everything he needs right now. Please know that hospice is also there to care for and to support YOU at this time and after his death. Love never dies and is always strong enough to carry us through.
Take good care of you too, okay? Thank you for this information. We will be experiencing this soon and it gives me some more insight. My Mom just passed, less than 24 hours ago. My Dad, 3 brothers and I sat vigil while she died. I thought it would be very frightening, but it was very peaceful and loving. We held her hands, hugged and kissed her all night, told her how much we loved her, what a wonderful Mother she was and how lucky we were to have had her as our Mom. I feel so blessed to have been there for her as she passed into heaven.
I still feel her presence very close to me now and find myself talking to her. Yes people can hear in a coma!!!
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My sister brought in this tape with my daughters voice on it. I answered my daughters questions!!! My sister asked if I had heard it before now. I said no. She played it for me when I was in my coma. Sorry I forgot to say that I have sat with the dying both human and animals yes wild ones too. Been doing this since I was 12 Im 53 now. I read in a book on near death experiences that the person who nearly died lifted up from their body and viewed the scene from above. I read this after my Dad died. I thought afterwards that all my Dad saw was the tops of our heads.
I want to look up and say goodbye and that I love her. Has anyone done this or is it some crazy urban myth? Susie, I read a similar article on near death experience — and it never occurred to me to encourage people to look up at or just after a death — but it makes sense! You do whatever is comfortable for you and I think looking up, waving, blowing a kiss, saying farewell for now is all good.
Thanks for suggesting we all think a bit more outside the box! I googled and found your post for which I thank you very much. The hardest thing is trying to decipher the words she tries to mouth but which give no voice. I tell her I love her and say I know she is trying to tell me the same. The experience of Meg chimes with mine. I feel robust and strangely detached sometimes. Watching my mother live with dementia and now succumb to it has made me resilient.
I hope tears will come because I know how cathartic they can be. Thanks again. Thank you thank thank you. Im sitting now with a dear friend wishing for all the suffering from 25 years of Parkinsons to end for her. When we first got hospice i moved the bed way over to the picture window. Not sure if she knows,but thought it may be just a little bit of quality added. The skype idea is great thank you.
I am sitting right now with my husband dieing of pancreatic cancer. After reading this I just opened a window. He has not eaten for 12 days and no water for 3. He mouth is so very dry. His pain level is so strong that they have him on three different ones every 2 hours. The cats have not left his side. Just in the past hour he is panting like a dog very fast and moning like he is in pain. Glycerin swabs should be given to you to use on his mouth and lips to keep his lips and mouth moist. He may also be running a fever, as people dying from cancer usually do run a temp.
If you have glycerin swabs you might want to rub over lips and in mouth to moisturizer. I have used coconut oil too. Talking to him telling him you will be ok can be helpful. Thanking him for being your husband,father friend. Im told our hearing is the last to go. I was with my dad as he was passing from lung cancer and have experienced most of what I read. I talked with him about all the crabbing and fishing we did together growing up.
I told him what a wonderful Dad he is and I was honored to be his daughter. Then he was looking at the corner of the ceiling and said, who are those people and where are they going? I felt a feeling of warmth come over me, and was so happy to be experiencing this with him. I said in a soft voice, they are going into the light, can you go with them into the light? I said, you see Small Mikey?
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He knodded yes. What is he doing? Dad said he is reaching his hand out to me. I said Dad go with him, he said no. After an hour he started getting drowsy and was fighting it so hard. I said dad, go to sleep, when you wake up we will go crabbing, ok. He knodded yes, went to sleep and then 10 minutes later he took his last breath. This is the most wonderful experience of life and death and I will cherish it till the day I die. Hi all Thank You for Sharing.. Its because her time is near. And I find it soo nice to know that its Ok for me to stay w her everyone had been saying you dntbneed to be there relax just pip in for ten mins????
And yes.. I have the window open a small amount for her…… I Love her Soooooo Much……. Thank you for sharing …it makes me feel better?! Hi all of you. God bless. As much as I love my dad I just want his pain to go away. He was diagnosed in July of with Colon cancer and mets to his Liver which has since turned in to sternal notch and stomach…and now we think bones.
It is so hard to see him suffer and not be able to do anything for him. He is getting new pain meds because the morphine is not working for him. He has not had anything to eat or drink for at least 3 days. Hoping his transition is peaceful and his pain finally comes to an end. Thank you for this list — we seem to be doing most of it naturally. Please remember to take care of yourself during this time and afterwards. Grief takes a physical toll — before and after the death of a loved one. Thank you for taking time to leave a message here —.
My father had prostate cancer. In then end, my sister and I took turns at his bedside.
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He was not conscious and snoring. It was my turn, and I had had my hand over his for a few hours. He did grimace and wail every half hour or so, and I called the nurse. She said he was dreaming, I am still not convinced and still hope it was not pain he was experiencing.
A little after 3 a. Mind you, I was in a chair next to my father and my sister was across the room, asleep. His breath changed to five deep, short breaths. I became scared, not knowing what was happening and summoned the nurse to stay with us. Did he let go because I let go? I did and do still feel guilt: maybe he would have stayed longer had I not removed my hand. Maybe it was good to, allowing him to go. These were his last breaths. I felt an intensely strong presence in the room, very powerful. I then felt euphoria, and waved to my father, me looking to the corners of the ceiling.
In a sense, it did feel like childbirth. This happened in a German hospital, almost 2 years ago. It was my first vigil, I had been there for animals before, but never a human family member. I would like to think my dad is in a better place.
Thank you for sharing that experience with us all! I believe you let go when he was ready for you to let go, and you and your sister gave him a beautiful gift of an attended death — he knew how well he was cared for. Only feel love now, no guilt. Again, truly grateful you shared this story with us all. My father died yesterday afternoon from kidney cancer, at home, eight days after coming out of hospital where he had been for three weeks.
I live miles away but came every week for several days to see him and support mum. He wanted to be at home, and I was able to help organise his care when he did come home. Last week I sat with him for three days and held his hand and we talked some about his dying and about the village where we both grew up. I then went home, planning to return later on this week. My brother and family visited him last weekend and dad seemed to rally then. But yesterday, he had taken a turn for the worse so I got a train as soon as I could to be with him. Thank you for your advice, the contributions of other posters as well as this opportunity to share my story.
Hi Linda, thank you for joining in the discussion here. But you gave your father an amazing gift — you made it possible for him to die at home, on his terms, and to have time and privacy and care to share last conversations with you and the family. Please take heart in that gift you gave him. And take good care of yourself in the weeks and months to come. Thank you, Paula, for your lovely thoughtful reply. I just have to start believing it. What a wonderful article I have found in this, I am going out of state to sit with my dying best friend, and I wondered about a lot of things, but your article has answered them.
And the replies that followed were also very helpful, and touching. I am honored that I can do this for my friend, she is at the end stage of cancer and cannot speak. Thank you so much. Thank you so much for this article. I did this six months ago with a very close family friend and noticed so many similarities this time — thank you for this great explanation. I feel much more prepared now. Hello Paula, thank you for the informative checklist. We did most of the points as they pertained to mom. Thank God for His guidance and technology, I found your site.
Mom is on Hospice at home, so the nurse will be here in a few hours — she refuses any nourishment as she is not able to swallow. I pray that God will guide both mom and I in the way to go. After trying to get a few drops of Morphine under her tongue, mom is sleeping but not peacefully. Her condition changed rapidly over a matter of hours. She was sitting up and talking on Friday and Saturday during the day everything changed. Our comfort comes from knowing that at 92 years, she knows everyone and is in her right mind.
She had a diagnosis of stage 4 lung cancer about ten months ago, but still cooked and baked until three months ago. Thanks for providing a place where people in similar circumstances can see they are not the only ones with questions or struggles as we navigate the process of a loved one dying.
And yes, when the person dying is someone we love all of our training goes out of our heads maybe because our emotions need to step forward. Death and loss are never easy, but they are great teachers about life.
I write this blog in the hope that the comments left here help us all realize, when it comes to death we just do the best we can to love the dying through their death process, and hopefully are able to support others involved in that process as well friends, siblings, lovers, caregivers. Please take care of yourself in this process and give yourself permission to meltdown, cry, take a walk, sleep for an hour, eat a good meal — or a bowl of ice cream! You might find the post Grief is Not Selfish! I wish you peace in your heart as you walk this path with your Mom and your family.
Paula, thanks for your words of comfort and peace. The hospice nurses were knowledgeable and caring to the end and told us what would happen at each step. There was no fear, but a mixture of joy and sorrow — the pain was over for her joy , her physical presence was gone sorrow. Thank You. My Mom died 4 weeks ago of cancer. She asked who the people were beside her. She faded in and out of sleep. When she was awake she was fully aware.
She told me to go home and come back in the morning and I went. In the morning when I got there her eyes were open but not focused and she was breathing rhythmical through her mouth. We held her and talked to her and soon after she took her last breath. I wondered if she waited for me to come back in the morning. I was with her at the end.
Your strength and presence and love were with her, even if you were not physically there all night. You came back in the morning, you were there when she died. That was a gift to you both. Take care of yourself. Thank you Paula it really meant a lot to hear your words. I was with there with her from morning until she was ready to sleep. So maybe she did need some time by herself. Thank you for pointing that out. Thanks Pauline. From my little experience, she knew. She also wanted you to go that night Often people wait for that moment left alone and others want family around.
The old saying goes is that the hearing is the last to go. Thank you for your response. But I was there at the end. I keep the window cracked during the days and hours towards the end. I play classical music as well. I inform the person of my comings and goings even if its stepping out of the room for a minute. I always greet with my name as well. Can someone please help me? My dad 81 passed away last week after a 2 month bought with pancreatic cancer. We were at his bedside when he passed. What I need help with is the face dad gave three times at the end.
When he was able to communicate, he always said he was in no pain. The last day be was totally unresponsive and hospice said it would be a matter of hours. He always breathed with his mouth wide open, never closed his mouth at all. The hospice nurse said he was just taking his last breathes, but his mouth was puckered and closed! Another visual is if you saw someone swallow with a very sore throat. Has anyone ever seen this before??? If he had been in pain, other indicators would probably have been present — like grimacing, groaning, the body would have been in constant motion as he sought a comfortable position.
Please take comfort in all of his days of being pain-free and comforted by the care you all provided that lead to that moment of death. Know that you did all you could, that he was medicated appropriately, and that you loved him well through his death process. I experienced something similar with my Mother who just died a few weeks ago. She was unresponsive. Her eyes were vacant and she was breathing quick, shallow breaths with her mouth open. We continued to talk to her.
Then her mouth closed a little bit and she grimaced. She took another breath and grimaced again, relaxed and then she was gone. I wondered if it was just an involuntary movement as her body was shutting down. The vision haunts me too of seeing her like that. Perhaps the facial movement is a common reaction when one dies. Hi…my mom just passed a few weeks ago, after being unconscious for 10 days. But while Lynn was finally free, her mother faced a fresh agony - a possible lifetime behind bars.
Kay was born in Dublin in The youngest of ten, all she'd ever wanted was a family of her own. After leaving school, she trained as a nurse and went on to have two much-longed-for children, Stephen and Lynn, with her then husband Richard. Kay now lives alone in East Sussex and is a proud grandmother of two. The charity exists to support those who have the most severe forms of ME and the people who care for them.
Kay Gilderdale author.
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