Quality of Life
My sister Brenda had a wonderful quality of life and she was the absolute centre of our lives. Then, about seven years ago, we began to realise that she wasn’t her usual self - after numerous trips to doctors and hospitals, we received the devastating news that Brenda was in the eighth per centile of people with Down’s Syndrome who develop dementia in their mid-30s.
Since her early teens, Brenda had been part of the Delta Centre community in Carlow, which provides training, residential, respite, day and multi-sensory services to adults with learning disabilities. This service and their dedicated management and staff accompanied Brenda and our family every step of the way on this difficult and heart breaking journey.
The local GPs, public health nurses and allied health professionals from the HSE were equally supportive and helpful in providing additional services. There was also access to a Neurologist from St. James’ Hospital and a Psychiatrist from the HSE. These professionals responded to Brenda’s clinical care needs and also supported the staff in the Delta Centre to meet all of Brenda’s needs.
Precious final days
Around this time last year, I realised that my only sister’s time with us was rapidly running out. One of the main priorities for me as Brenda’s care representative was that her precious final days and hours were spent in her bed in what had been her home for the last number of years. It was important to our family that Brenda would not have to go to an A&E department or hospital setting.
The staff in the Delta Centre showed amazing courage and commitment in their willingness to work with our family. They had never provided end of life care in any of their residential homes up to this point in time. As Brenda’s condition deteriorated the management in the Delta Centre held multi-disciplinary meetings, where everyone connected to Brenda’s care had an input. It was at one of those meetings that the HSE Speech and Language Therapist had the difficult job of telling us that Brenda’s swallow had ceased functioning and that it was not safe to continue feeding her. It was decided at that meeting to provide comfort feeding for Brenda under the care of the GP.
It was at this stage that the Carlow Kilkenny Homecare Team came into the picture. I knew from the moment that the Clinical Nurse Specialist assessed Brenda that she was going to be in good hands. In fact, this was the first time that the Carlow Kilkenny Homecare Team had worked alongside Delta Centre staff to provide end of life care in one of the Delta Centre’s residential care homes. It truly was a great learning experience for all professionals involved, and provided an excellent opportunity for everyone to appreciate each professional’s contribution to Brenda’s end of life care.
My sister’s transition couldn’t have been a more respectful, peaceful, kind, caring or love filled experience. I felt truly privileged to be there by her side as her sister; but I was also incredibly proud to know that as I work in healthcare, I work with some the best of people in Ireland – people just like those who did everything they possibly could to provide only the best of care for my sister.
Love as a component of professional practice
As professionals, we don’t always identify ‘love’ when we see it in action; however, I am proud to acknowledge that in those final 10 days by my sister’s side, I witnessed an abundance of LOVE in every aspect of the care that was provided to her. Brenda left this world on the 26th May, 2017.
Heartfelt thanks and appreciation to everyone involved in caring for Brenda in her final days and for the wonderful kindness that was shown towards our family.
Brenda’s story epitomises ‘Values in Action’.
Quality Improvement Advisor
St. Dympna's Hospital