As grief psychotherapist Julia Samuel says 'Grief starts at the point of diagnosis, when we can no longer assume, as most of us do, that we are going to continue to live for the foreseeable future'.
Knowing that our life, or that of a loved one, will end sooner than expected can be a huge burden. The pain and distress that this knowledge brings is compounded by the inevitable remnants of hope and uncertainty. Living bereavement recognises that the grieving process starts at this time.
Navigating a path when facing the end of life is difficult and the path will be different for each person. In addition to the practicalities of care, treatment and medication is the emotional and psychological burden that a terminal diagnosis brings. Planning for, and talking about, how you wish this last stage of your life to be can help both you, and those around you, better cope with the challenges ahead.
FINDING HELP AND SUPPORT
Many people find it helpful to understand a little bit about what they are feeling and may find comfort in recognising that someone else has felt this too.
Linking up with others who are in a similar situation, or exploring coping mechanisms that might get you through the darkest days, can provide enormous strength.
Our Bereavement Support section has information on and links to organisations, websites, blogs and podcasts that offer help and advice.
In particular Dying Matters, an NHS-backed organisation set up by the National Council of Palliative Care (NCPC) in association with Hospice UK, is a good place to start.
There is an extensive network of hospices throughout the United Kingdom. Hospice UK, the national charity working for those experiencing dying, death and bereavement, has a list of hospice members and other partners who work in end of life care.
With medical services stretched to the limit, it is not always possible for medical professionals to give patients the extra care, support and information they need when they are facing the end of their life. An End of Life Doula or a Soul Midwife can fill this void.
Living Well Dying Well, a West Sussex based organisation that trains and provides doulas for End of Life Doula UK, explains the concept and role of an End of Life Doula:
"Doulas are trained in supporting people at the beginning (birth doulas) and end of life. ‘End of Life Doulas’ walk alongside the individual, their family and their community as an informed companion. They are sensitive to practical, emotional and spiritual needs and are a consistent and compassionate presence, with knowledge, experience and understanding. Their role is to preserve the quality of wellbeing, sense of identity and self-worth from the moment of diagnosis. They do not replace medical care, but facilitate access to resources that are available and also recognise the frequently intangible elements of life that can have a major impact on the family as they strive to maintain the best quality of life possible."
Even if you have supportive family and friends, having someone with knowledge and expertise who can help you navigate the medical, psychological and practical aspects in the last weeks or months, can help make a very difficult time a little easier for you and those around you.
For more information, see: