Jean, my Mum, was full of fun. Her smile lit up a room. She loved a glass of Southern Comfort or Bailey’s, a risque joke and helping others. All her life she had been involved in voluntary work. She had been at there at the establishment of the first Citizens Advice Bureau in the country. She worked in the local Family Planning Clinic, she was chair of her Residents Association and, until she was in her early 80s, she ran the weekly bingo session for the ‘older ladies’ in her housing complex! All of this done, not in a pompous way but, with laughter and enjoyment. It was these traits that she took along with her on her Dementia journey.
No one realised that she had started her journey until we discovered that she had accumulated a number of debts. Well, who knew that drawing out £5 or £10 each day on a credit card would cause so much trouble! It was clear that Mum’s forgetfulness was something a little more concerning.
A diagnosis was never a problem for Mum.’You know my memory Sue. At least I know if something is troubling me then when I get up in the morning I will have forgotten it!’ It was a problem for the family though as her forgetfulness manifested itself in ways that indicated that her sheltered housing flat no longer offered her the support she needed. So started the task of finding something a little more suitable. As friends around her left, died or moved into care themselves she became lonelier. Mum had always loved to talk and share the day with others. Her flat became a less than happy place and visits and phone calls were not enough.
It was clear that this independent woman who would never agree to come and live with any of us would certainly never consider a traditional care home. We were fortunate that there was an Extra Care Housing complex in the town that offered her the semblance of independence she craved. She had her own front door and letterbox but with the watchful eye of a dedicated care team whose support increased as her condition deteriorated. Best of all she had the company she enjoyed so much. As her primary carer I could visit her at any time, any day. I could join her for lunch in the restaurant and in the quizzes and the crafting activities that she enjoyed so much.
So often the papers are full of tales of abuse, uncaring or ill informed care staff, rule bound managers who have little time to talk and respond to the concerns of family members. Our experiences were very different. Right up to the afternoon that she died care staff supported Mum in a dignified manner brushing her hair and massaging her hands with perfumed hand cream. They reassured us that when we went home to get some rest Mum was never left alone. I was with her at the very end and when I alerted the staff on duty to her death there were shared tears. The manager even ensured that some of the staff were able to attend Mum’s funeral.
This experience left me with was a strong desire to share my story with other TIDE members. Helping someone living with dementia to transition, in a sensitive manner, into the care that is right for them is not giving up or shifting responsibility. It’s not about abandoning anyone. If it is right for the cared for then it can be a positive move for all concerned. This is, of course, dependent on the availability of sensitive, responsive and dignified care provision.
Spurred on, I have been on the TIDE Carer Development Programme to refine and improve my presentation skills. I secured a job at a local voluntary organisation working to help older people in care homes to reconnect with their voices and regain their confidence so they are empowered to comment / complain about the quality of their care – yes, with the assistance of advocates, even those residents with a diagnosis and who have travelled quite far into their journeys!
I have trained as a Dementia Friends Champion and have run a number of information sessions for care staff, health and social care students, W.I. members and the general public. I am committed to working to ensure that professionals appreciate the wealth of knowledge that Carers hold, that they are often the most informed judges of what is required.
In all that I do I hope that I can respect Mum’s memory and respond in the same ways she did, with laughter and a joke but with a passion for the ignored, the misunderstood and the misjudged, putting them centre stage.