I recently contributed to the End of Life Partnership conference entitled ‘Living and Dying with Uncertainty’. It was an inspirational event with each speaker adding their own thought provoking contribution to this challenging topic.

My particular input was from a relative’s perspective. I explored some of the uncertainties that are commonly experienced as a loved one comes towards the end of their life. These included uncertainties about;

  • A loved one’s priorities
  • Changing relationships
  • Caring skills and knowledge
  • The role as a carer
  • Identity, needs and wellbeing of the carer
  • The future

Uncertainty is part of every day life but particularly so when caring for a loved one in the last stage of their life. However, as well as this uncertainty there are many precious moments to be experienced. These special moments  only happen if we’re willing to walk alongside our loved one and experience the uncertainty too.

I also presented a conference poster that outlined some of the ways health and social care professionals could support relatives during their uncertainty. These included;

  • Encouraging discussions about their loved one’s preferences and priorities to help them live and die as well as possible
  • Respecting their relationship as it is and accepting them as they are
  • Providing information and practical guidance about caring for someone with a life limiting illness
  • Listening to their concerns and giving feedback on what they’re doing well
  • Supporting them in meeting their own needs so they can continue to provide care for their loved one
  • Discussing recording wishes using relevant documents including Advance Decisions and Power of Attorney

You can download a copy of the conference poster here: EOLP Conference Poster 2017 Jill Cox

Having the support of caring professionals made such a positive difference to me. I was thankful for everything each one of them did.

If we can accept that uncertainty is inherent in being with a loved one in the last phase of their life and continue to care despite this, we can focus on our loved one’s priorities and enable them to live their life in line with their wishes. I’ve personally found that it has been well worth the effort. I cherish the meaningful moments we experienced together.