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Dying with dementia

Julia Jones, co-founder of John’s Campaign

My mother died just before Christmas in the dementia nursing suite where she had lived for the previous 2 ½ years. She was 94 and had been diagnosed with Alzheimer’s and vascular dementia almost 10 years previously.

It was early in the morning and I was lying next to her, listening, as her breathing stopped. I have never been with anyone before as they died. It was so gentle it took me a moment to understand what had happened. Then I called out to my brother, who was asleep elsewhere in the room ‘Mum’s not breathing anymore’ and we listened quietly in the silence. She was gone.

Soon I got up and went to fetch the nurse. She had been such a source of strength earlier in the night when Mum’s breath was gurgling horribly. She had been ready with the necessary medication and had administered it so efficiently and also correctly, getting a senior carer from elsewhere in the home to assist and monitor what she was doing.

Mum’s skin was breaking down by this time so the night and day staff had had to liaise over the routines of turning Mum, moisturising and protecting her. All this was new to us, they needed to explain what they were doing every step of the way while we watched anxiously, determined that there should be no additional distress for Mum, that she should be touched and moved with the utmost gentleness and respect.

Not that we doubted them. The regulars had become our friends and the two agency carers who were on duty that night were equally professional and humane. They cared for the dying as part of their job (what an amazing job!)  but they never forgot that, for us, losing our mother was a one-off.

The end-of-life drugs had been prescribed a few days earlier when we had made a definite refusal for Mum to be taken into hospital. She had been failing to fight off an infection so could have been given anti-biotics intravenously and also re-hydrated. But Mum had always made it clear that she didn’t want to go to hospital and (fortunately) a previous GP had helped her complete a Preferred Place of Care form which gave everyone the official ‘permission’ to let her die where she had been living. The dementia suite was by now her home. Most people want to die at home.

After Mum died my brother described it as a ‘textbook’ death. What had made it so?

Relationships and communication: We were lucky, we had been building these over 2 ½ years but this was still a testing moment. It was crucial that we were given clear explanations – about the use of a syringe driver, for instance – and time to consider these.

Space:  Mum was in the right place for her and we were welcome to be there too. We had privacy when we needed it but there was always support available.

Pre-planning: The preferred place of care form and respect by the doctors for our knowledge of mum’s wishes was crucial. She could no longer express herself in words but when she stopped eating and drinking it was clear she was ready to die. It would have been so wrong to move her then.

Aftercare: We welcomed the expertise of the home management in making arrangements for doctor’s certificate, undertaker etc but even more we were touched by universal expressions of sadness and of sympathy and the continuing respect for Mum’s body.

These are not difficult things. They take time, a clear understanding of priorities and the shared belief that every death matters to us all.

Julia Jones is co-founder of John’s Campaign,  a UK-wide movement which advocates for the unrestricted welcome and involvement for the family carers of people living with dementia.

For more information visit https://johnscampaign.org.uk/#/

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