Within Issue 94: loss – Looking Ahead

The theme for the Winter issue is Loss – looking ahead. Families and professionals alike put great effort into planning ‘a good life’ for people with PMLD. We focus great importance on supporting them to develop meaningful relationships with people around them, to enhance their quality of life. But perhaps we shy away from putting the same care and attention into preparing for the inevitable? How can we ensure a death (or any other ‘ending’) and the consequent ‘loss’ experienced, is addressed in the best possible way? Whether this is the end of life for an individual with PMLD or the loss or death of someone significant in their life, there is so much we can and should do, where possible to prepare and involve them.

As an editorial group we had difficulty in deciding both the scope and the title for this journal’s topic. It was really important that our focus dealt with the time period when people with PMLD come towards the end of their lives, but we also wanted a theme that was broader and addressed this issue of ‘loss’ from a range of perspectives. Supporting people with PMLD when they themselves experience loss, whether it be from bereavement or loss/change through other life events, is equally important albeit with some different challenges. The descriptions ‘palliative care’ or ‘end of life care’ both have quite specific meanings yet are often misunderstood and can carry such negative connotations. We felt this focus was too narrow to encompass all we hope to explore in a positive way – plus, we really want people to read our articles and be encouraged to look and think ahead!

We welcome your contributions about this sensitive aspect of life and recognise they may take a different form from the usual articles – perhaps personal reflections, stories, poems as well as more practical ideas or resources that can help and inspire others to tackle this delicate topic in a positive way.

We are looking for items on as wide a range of topics as possible – ideas might include:

  • What does a ‘good death’ look like? Including the planning that both professionals and families undertake to ensure that the final stages of a person’s life is meaningful, respectful and dignified.
  • What planning do we need to undertake? particularly as the person with PMLD may be unlikely to participate in the planning
  • Who supports families and support staff through this stage … and how?
  • How do we celebrate a life in a meaningful way?
  • What does life look like one year on?
  • How can we help the person with PMLD to ‘remember’ in meaningful ways, their family member or friend who has died or has gone from their lives?
  • When is it appropriate to put a DNACPR in place, have an Advanced Care Directive or create a Respect document.

Send your contributions by the 1st November 2019 to:

jeanne@jcarlin.karoo.co.uk Or annie.fergusson@outlook.com

We are always happy to help with writing articles – do get in touch

Looking forward to receiving your contribution

Jeanne Carlin, Annie Fergusson, Michael Fullerton, Bella Travis and Maureen Phillip

info@pmldlink.org.uk

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