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...
I first got to know Lee about nine months ago. She is 83, and has both cancer and arthritis, the latter of which gives her serious mobility problems. I took her to our local hospice for day care once a week, and loved the journeys, as she was so positive and always enjoyed living "in the moment" despite her health problems. She has no family and lives on her own in sheltered accommodation, her husband having died just over a year ago, but she has a wide and very caring circle of friends.
About 12 weeks ago her pain levels increased dramatically. Despite tests, no-one seemed sure of the cause, and although her levels of pain-killing tablets and patches were increased, nothing else seemed to be done. I was very worried, as were her carers. (She had help from three wonderful carers who came in every day.) She rapidly became virtually immobile, unable even to go to the social areas of the home to meet other people, something she loved doing. She could no longer knit, sew or make cards, all of which she loved, and could not make her weekly visits to the hospice. I visited her regularly, and watched helplessly as this vivacious and happy woman gradually lapsed first into apathy, then despair.
She phoned me one evening, very upset. Her GP and Social Services had decided she needed to go into a nursing home immediately. She made it clear that she hated the prospect. She told me, "If they put me there, I shall die." I believed her. I went to see her, and she begged me to help. I phoned Social Services, who agreed not to put her into a Nursing Home against her will, then, armed with a letter of authorisation, went to see her GP. "You must think I'm very defensive," he said. I did. He also made it clear he objected to my speaking for Lee. He told me she could not be admitted to the local hospice, which turned out to be true. When I asked, despite their policy of admitting anyone with an incurable condition needing palliative care, they said it did not apply to orthopaedic problems, and at that stage, everyone said her pain was caused by arthritis.
The following morning, Lee phoned me. By a coincidence (!) two palliative care nurses had arrived at 3 am. By 10 am she was in an ambulance being admitted to our local hospital as an emergency. She is now receiving the care she needs. They have discovered that the pain is cancer-related, and she has received radiotherapy to relieve the pain, and is in contact with a Macmillan nurse. There is a possibility she might be able to return to her flat, with appropriate levels of support. That's exactly what she wants. She doesn't want to live forever. She says she just wants to be in her own flat, able to do the things she loves and be with the people she loves. She can't see why it shouldn't happen. Nor can I.
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