This blog was written by Catherine Murnin, Carer Involvement Lead for Northern Ireland.
The inaugural international Dementia & Palliative Care Conference took place in Belfast on Thursday 9th and Friday 10th May, hosted by NI Hospice. Over 250 healthcare professionals attended with speakers from a range of international countries shining the spotlight on the value of supporting and developing the marriage of dementia and palliative care. Presentations, workshops and discussion groups looked at the impact of dementia, a holistic approach to services for patients and carers, partnership working with a focus on advanced care planning, awareness and education including recognition of the complexities of loss, grief and bereavement.
Day 2 was opened by 4 amazing people, current and former carers supported by tide to have their voices heard and share their experiences as individuals with a caring role for someone living with dementia. A warm welcome from local journalist Sarah Travers saw the carers take to the stage where a pre-recorded video of them living their lives with the strapline, This Is Me, set the scene and showed these carers as individuals in their own right, their personalities, friendships, life experiences and love for family shining through the video. You could have heard a pin drop when the video ended and like me, others were shedding a tear or two.
These inspiring people then stood up in front of this audience and using their own words, style and delivery, presented to the professionals in a way that belied the nerves and effort it had taken for them to get to this stage.
Pat talked about his life with his lovely wife and the caring role he has undertaken for her since her dementia diagnosis and for their son who has Down’s Syndrome. He has been on an emotional rollercoaster coping with the loss, the changes and the challenges and willingly shared this with the audience, using humour to keep his focus and hold things together. Pat reflected that when he started his caring role he was proud and confident that he could cope but soon discovered the challenges of communication and expressing his thoughts and emotions. He referred to the so-called light bulb moment happening when he realised he wasn’t Superman after all and the gratitude to the Hospice Hub coming into his life, with its excellent clinicians, therapists and volunteers.
Pat talked about the value of friendship, having some time out and the importance of having information to make good decisions. His flair for language and his love of amateur dramatics shone through as he owned the stage in a quiet, dignified and humble way. Having voiced some reservations about being able to take part in the conference it was great to see Pat’s reaction to the applause and recognition from the audience.
“Palliative & Dementia care is not a 400 metre sprint but an ultra-marathon, but with all our knowledge & skills we band of brothers and sisters will prevail to a satisfactory result. So seize everyday”.
Orla talked about caring for her mum through her dad’s dementia journey to try and keep one step ahead, identify problems and possible solutions and give her parents the space to keep a focus on their special relationship as soul mates. Orla reflected on the loss experienced by the family, the energy needed to deal with the practical stuff and the physical toll that a caring role was taking. She had the audience on the edge of their seats as she talked about receiving a huge big present, tied up with a bow, addressed to the whole family but in particular her mum. Inside was everything they needed to enjoy their time with their daddy including compassion, understanding, love, knowledge, respect and support. The NI Hospice Dementia Palliative Care team had entered their lives!
Orla described how Friday mornings in the NI Hospice brought structure to the week, something her mummy looked forward to as she knew that her husband was being looked after in a happy and stimulating environment. She talked about the family being given permission that it’s alright to not be alright and the richness of having other family carers around to support each other.
“We were all so blessed to be part of the hospice dementia programme, and I only wish everyone who is a carer of someone with dementia, could have the support that we had”
Emily talked about “her Jimmy”, sharing memories of meeting and falling in love with this gentle man nearly 50 years ago. She described to the audience how when Jim was in his mid fifties things were just not right. He became extremely anxious, depressed and his logic seemed to fade. He was treated for depression and anxiety and life at work became too difficult so Jim took early retirement. Eventually when Jim was 66 he got a diagnosis of Dementia and Emily talked about her feeling of devastation and feeling robbed of the future and retirement they had planned.
Emily shared the lasting impact from Jim’s diagnosis, describing the ripple effect on family, her children and grandchildren and how everyone’s reactions are individual. In her calm way, Emily talked about how life has a way of throwing curve balls at us and that sometimes we are too busy living to see what’s really important. The emotional impact on Emily was clear as she talked about her husband now needing nursing care. Jim now needs nursing care and how her role as a carer goes on but just in a different way.
“What I say now to everyone I meet if you want to do something just do it. Many of us plan what we will do in retirement. But sometimes life does not turn out the way we expected and planned”
Mary talked about the journey of the dementia diagnosis and in her practical, calm manner celebrated the developments in care and support for people and their families. She shared her story of her husband’s diagnosis 4 years ago, saying life had changed but not ended. The audience then listened as Mary described how last year the couple were referred to the NI Hospice Hub, outlining how her husband looked forward to his weekly therapy sessions and there was a marked improvement in his quality of life. Mary described the impact that being part of the Hub has had on her, with opportunities to listen to and learn from other carers, guidance from staff and information from other agencies that was invaluable. Summing up Mary stated that she knows nothing can bring her husband’s memory back but having people to walk alongside you can’t be quantified.
“Although all of you here today are dealing in some way with end of life care, in a sense it is a new beginning. Just as those who paved the way for the Hospice movement and in the past their courage, determination and inspiration paved the way, yours will influence the future”.