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Carol<\/p><\/div>\n
Carol was 68 years old.<\/h3>\n
She was a force of nature, fighting off infections and other episodes of unwell-ness over the past years. The assistants (as we call the \u201csupport staff\u201d who spend her days with her, some of whom live in her home) were attentive to her medical needs, so when she complained about her legs and she seemed to have lost strength in them, they were alarmed and took her to hospital.<\/p>\n
She spent the night in A&E. Hazel telephoned me the following morning, still in A&E. She had been with Carol since midnight. All that time, Carol had been desperate and unable to get comfortable, grabbing onto Hazel, moaning, trying to shift position. The doctors had diagnosed a very large clot in the main blood vessel in her abdomen, supplying the lower part of her body. Her right leg was already stone cold.<\/p>\n
She finally fell asleep in Hazel\u2019s arms around 7.30, probably from sheer exhaustion. Two hours later, five doctors came past and said,<\/p>\n
\u201cWe can\u2019t operate. It\u2019s palliative care only from now on.\u201d<\/h3>\n
And left.<\/p>\n
At least I think that is the story I heard from Hazel. She\u00a0phoned me and burst into tears. Phone reception in A&E (and, as we would later discover, on the ward) is poor, so she kept cutting out and I couldn\u2019t quite work out what was happening. Blood clot? Palliative care? What does that mean? Some people receive palliative care for months, years even. Is Carol dying? Or is she simply needing quality-of-life-care that could last a long time?<\/p>\n
I had no idea, and as far as I could make out from the dodgy phone line, neither could Hazel, who anyway needed to be with Carol in her state of in-and-out-sleep. Who to ask? Doctors and nurses were running around the busy A&E department, saving lives and limbs of other patients. But Hazel’s distress was concern enough. She is one of the most experienced assistants in the L\u2019Arche community, she\u2019s been around for decades, she is a mature woman who has seen a lot of life and of death. Help was clearly needed.<\/p>\n
\u201cI\u2019m coming,\u201d I said to Hazel, who cried some more at that. \u201cI\u2019ll be there in an hour.\u201d<\/h3>\n
I changed from my jeans and jumper into my power jacket. Sometimes it\u2019s easier to get answers from doctors and nurses if you look like someone in authority, and I\u2019ve got a fancy new title of Professor Of Palliative Care And Learning Disability, so that might help (it shouldn\u2019t, but I find that it does). Better look the part, so they\u2019ll believe me.<\/p>\n
By the time I got to the hospital, Carol had finally been found a bed on the ward, in a side room. She looked at me, recognised me, grabbed hold of me, grabbed hold of the bedside, trying to shift position. \u201cShe\u2019s been like this all night,\u201d Hazel despaired. \u201cIn fact it\u2019s much better now, it was far worse.\u201d<\/p>\n
Hazel knows about people dying. I looked at Carol and I looked at Hazel.<\/p>\n
\u201cThis doesn\u2019t look good,\u201d we agreed. \u201cShe may be in her final days.\u201d<\/h3>\n
Someone who needs \u201cpalliative care\u201d can live for a long time \u2013 that\u2019s not the same as dying. What I mean by \u201cdying\u201d is the point of no return<\/em><\/strong>, when the body starts shutting down, and there is nothing anyone can do to stop it or even to slow it. No need (indeed no point) to try and feed the person, or give them a drip, because it won’t make them live any longer. Dying is a natural process that can last a few minutes (as it did for Michelle<\/a>) or, at a push, a few weeks (as it did for my mother<\/a>, who found dying difficult and was hanging on and on), but usually it\u2019s somewhere between a couple of hours and a couple of days.<\/p>\n