Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
My mother, a retired nurse and former Hospice volunteer in the early days of the movement in the US (the 1970s), died at home last month at age 85 after refusing all treatment for a blood disorder. The treatment would have been painful, invasive and ineffective, as well as dangerous for someone her age, but the doctors would have undertaken it anyway if she had not refused. During her life, when people would ask her about dying, she would say 'It's the last normal thing I plan to do with my life' - so she was very practical about it.
She was not ill for very long, and was seriously ill for only a few weeks; before that she was healthy and vigorous, taking almost no medications. After her diagnosis she had conversations with my sister and I, and with her partner, to tell us that she wanted palliative care only and to explain that she did not want to end her days 'hooked up to machines'. Instead she died in her own bed with her family around her, her favourite music playing and her beloved cat curled up against her.
During the three days at the end when she was rapidly getting weaker, a Hospice nurse was with her, but the nurse wasn't really needed as my sister is also a nurse and was able to administer morphine and perform the necessary care. I realise that this is lucky and not available to most families, so I would highly recommend the presence of a Hospice nurse.
I had been to see Mom for a 10-day visit a week earlier, while she still felt well (at that time the doctors said she would recover and would be able to live for quite a while with her condition). I live in the UK and, when my sister called, had to rush back to the airport and undertake a 16-hour journey to California in order to get there in time to say a final goodbye to her. Thanks to my sister's knowledge of the progression of the dying process (something a Hospice nurse could also have provided) I was able to get there while Mom could still see and hear me, although she could no longer speak. I think she was conscious for about two hours after I arrived; after that it was difficult to tell.
I am the non-medical person in our family and was completely unprepared for what I found. I arrived after midnight local time and sat up with my mom until 9:45 the next morning, when she died. My sister, who had been up for over 48 hours, had to get some sleep. She showed me what to do, basically just giving Mom juice from a straw and moistening her lips as needed, and told me to wake her to give more morphine if Mom was in pain. I had no idea how often I should give Mom the juice or whether it was safe to move her when she threw the covers off or kicked her legs off the bed, and I didn't know what her restlessness meant; it was alarming and I thought she must be in pain. I did the best I could while feeling the whole time that I was completely inadequate to provide comfort care - at one point I was babbling to Mom, the ex-nurse, about not having realised how difficult even the most basic nursing is. And no one close to me had ever died before... so for me it was a traumatic experience in a number of ways. My sister, the nurse, dealt with it with a degree of professional detachment until Mom was gone, at which point she broke down.
In the morning, at the end, Mom opened her eyes for the first time all night, and looked steadily ahead at something only she could see with an expression that was both grave and joyful. In 1970, when she was very ill and given eight hours to live, she said she had a near-death experience and saw her parents and departed loved ones waiting for her; I knew she was seeing them again now, but this time could go to them. According to things I read later she probably heard me asking her to say hello to them for me and saying I would see them all again, when I get there myself. I don't believe in an afterlife but at the time, as a gift to give her, it made sense.
I don't know if this one person's story will be helpful to anyone in thinking about what a good death is, both for the dying person and for their loved ones. For the dying person, I think a lack of stress as well as of pain, and the continued presence of loved ones, should be basic 'rights', and in many cases this can best be accomplished at home, with nursing support and adequate preparation for the family. And I'm not sure that big emotional scenes would be the best thing for the dying person. I felt instinctively, with Mom, that calm and 'letting her go' with acceptance of her decision was best, and that dredging up unresolved issues would be selfish on my part -- but of course everyone's mileage will vary on this, and it is not at all an easy thing to do to just let someone go, especially if it is sudden.
For me, although I thought I was prepared, I discovered that I was far from it. I now have PTSD-style flashbacks and have been unable to sleep well for a month. I'm sure this is normal, as is being depressed at losing a close parent suddenly, but it probably could have been significantly mitigated if I had had more information about what occurs during dying (i.e. if I'd asked my trained family members for more details in advance, or even looked at a website like this one). My mom, who did have that information, was very calm about it all, and viewed the natural dying processes as simply a part of life.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66