Personal experience?

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JBlack
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Last seen: 6 years 6 months ago
Joined: 16/05/2011 - 11:30am
Personal experience?

Do you have personal experience of a life-limiting condition or care of a loved one at the end of life? What was helpful and what do you feel could have been improved?

sarah
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Last seen: 6 months 1 day ago
Joined: 15/04/2011 - 6:34pm
Communication

There was a real absence of communication when my mum was dying. We were never kept informed as to how her pain was being managed, what she was being given, what her prognosis was etc. We had to be proactive in seeking all information ourselves - nobody sat us down and talked to us properly, and that was at the five or so different hospitals and one hospice she was admitted to. Also, she couldn't drink from her water cup, tipping it all over herself again and again. We bought her sip cups to use - the hospital having none - but they kept going missing and over and over again we'd arrive at the hospital to find her sitting in soaking sheets and bedclothes. Finally, basic human things such as the right to dignity were ignored. I found her in full view of the hospital ward on a commode. This, my mother, who had been so dignified and proud. A nurse was nearby and I asked why no-one had tried to conceal my mother from general view. She had no answer for me. This is only the tip of the iceberg - I could go on... and on....

pbleicester
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Last seen: 6 years 2 weeks ago
Joined: 24/08/2011 - 4:19pm
experiences past and present

The medical profession can be seen as the guardians and carers of our loved ones but also the blockers to information and understanding the needs of both the patient and their family.
My own past experiences goes back to 1993 in Leicester where my mum was slowing dying of cancer. I asked the consultant one day how my mum was doing 'tentatively' asking will she die? The consultant was evasive and simply said 'we are treating your mother' and that was it. No clue to actual time left I suppose is the greatest burden one can have as one tries to plan for the final moment of death. It was out of my hands and the hospital, as the bed mum occupied was only meant for recovery not terminal care. Hence the final weeks were spent in a Sue Ryder Hospice that was 25 miles from where I lived in some ways better for my mother but not the best result for the family. Care at the Hospice was great and very holistic based and had plenty of quality time left with mum.

Present experience 2011 things have changed a little. I have been involved with cancer charity, palliative care, bereavement support with more communication between professions and patient/family. Still a time lag between people wanting to be in a hospice setting or home and being transferred there due to pressue of beds and ability to make it happen.

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