Unhappy Senior Man Being Visited By Grandaughter
– My background begins with the senses – I trained as a nurse in the 1980s and spent much of that time caring with people who struggled to communicate due to stroke, dementia or other brain related conditions. I was really drawn to these patients as I felt they were often ignored. I sensed their frustration when other staff didn’t have the time to spend with them and often they didn’t have their needs met (sensed being the key here), because they couldn’t express themselves.
Can you imagine not being able to tell people what you want and need?
I cannot, for a moment imagine how that must feel. In fact, I was often told to walk by and not spend so much time with those patients by the senior nurses. Can you imagine that!?!! what? ignore living breathing human beings who are struggling to communicate their needs!!! Deep down, I felt their pain and frustration and knew they had a voice that needed to be heard, someone who could translate their voices. (the word, I now know is advocate). Looking back, I think I always communicated on an empathic and intuitive and some might say, even quantum level and just wished that others did too. I think it started a long time ago.
My Grandfather and Gallipoli
My story begins much earlier, as a very young child who remembers her grandfather; a veteran of the First World War, who served in Gallipoli. On return from the war (and many did not return) and during his adult life, he sang as a bass baritone with the Carl Rosa Opera Company. Accounts from older family members refer to his voice as sublime and that he would charm his audience, with the comic Gilbert and Sullivan arias. Sadly, later on, my memories of him were of a paralysed man, who had suffered a number of strokes. He was unable to speak and was bed bound. I remember sensing his frustration (there’s that word again; sensing!!) when trying to get his words out: his face would grimace and body would stiffen. He managed to shout out sounds but they were incomprehensible and he would often cry.
But in contrast, sometimes he would settle and his whole being would relax when he sang songs and nursery rhymes to myself and my sisters. Every lyric was audible, every word came out perfectly, this has a lot to do with rhythm. And so, I am sure that my memories of him have left me knowing, that, despite the condition, there is always a way to connect with a person who struggles with their communication caused by disease and illness. I feel (feel; now that’s another word, a bit like sensing!) that this is the case for people living with dementia. Later on, and for the past 30 years, I found myself working with people who have dementia in care homes, memory clinics and hospitals. Throughout my nursing career, I saw that when I was listening to people who had dementia and supporting their families, the same issues cropped up. I realised that they often didn’t know what their loved ones were experiencing and so it was so difficult for them to know what to do. They often felt scared, frustrated and out of their depth. Families would often give up, saying that the person had gone, but I, like the great Professors Stephen Post and Stephen Sabat knew that we are so much more than memory and thinking and that there are ways to communicate and connect on a more consciousness level. I am currently reading Stephen Post’s beautiful book Dignity for Deeply Forgetful People and this resonates with my all of my experience and beliefs from that young child, junior care assistant, qualified nurse and so on…….This made me realise that there must be many others who feel the same and we need to share our knowledge and skills with families and caregivers to help them stay hopeful and find ways of connecting. So that’s when I started writing a monthly blog, to spread the word.
The Book’s Beginning
Each month I wrote on a theme that would crop up in work and I soon found that I had written enough that could be made into chapters and then altogether to produce a book. These themes emerged from my practice experience, the stories from the dementia patients and their caregivers that I supported in the memory clinics, their home settings and later on in the care homes. I sought to find out what worked for them, and I backed everything up, with reading all the latest research, as well as my own. I later went on to complete my Ph.D. which explores sensory ways in which we can communicate with people who have dementia and how their partners can reconnect with them. My studies have confirmed to me what I have suspected all along; that the person is still there, we just need to find ways to reach them. This experience has confirmed my intuition that we can still connect and care by listening to the emotions of a person who may struggle to speak or understand what we say to them. This was my motivation for writing Finding the Light in Dementia which has now been accompanied by a course for families and caregivers, Finding the Light in Dementia Course for Families, Friends and Caregivers a comprehensive training programme for health and social care staff Finding the Light in Dementia Training and short courses Short courses for all all dementia resources include films, audios, animations and presentations with people living with dementia, caregivers and leading professionals and researchers.
And so I thank my grandfather and all the patients I have cared with over the past 35 years who inspired me to share my experiences and motivated me to research into ways in which we can connect with those “deeply forgetful people” (Post, 2022) and it doesn’t end there……..