We would like to say a huge thank you to Suzy Webster for this insight into her Mum’s life and the loving relationships she enjoys with her family. Suzy has spoken of her experiences in order to raise awareness of dementia, and what this means for people and families. She also works at Age Cymru, and so does a huge amount of work to make a positive difference in the lives of older people in Wales. You can keep up with her latest activity by following her on twitter @suzysopenheart
We are privileged to share Suzy’s story as part of Dementia Awareness Week in England and Wales. Thanks again to Suzy for sharing her story and for all the work she does to increase people’s understanding of dementia.
My Mum lives with me, my Dad, husband and two children aged 6 and 9 years. She also lives with dementia.
Mum and Dad came to live with us in South Wales just after Mum was formally diagnosed, 3 years ago – there is one thing certain about dementia, it isn’t going to get better so we knew planning for the future was essential and taking a team approach to caring for Mum meant we could support each other. Mum had been ill for a long time but I suppose, like us, medics hadn’t considered a dementia in someone so young. Looking back I remember the first signs of Mum’s memory loss when she was in her mid 50’s.
“Mum is and will always remain a valued part of our family.”
At the age of 68 now, life has its challenges for Mum. We provide 24 hour care for her. Her mobility is very limited, her short term memory has gone and she is unable to access the local community alone. This is outweighed by our evolving relationships, Mum is and will always remain a valued part of our family. She is loving Mum, she holds me closer than ever before. She takes great joy in being with her grandchildren, reading stories together and having girlie nights! I have learnt so much from my children, they see Mum in the moment. When I miss how Mum used to be and when I fear for what the future may hold, I watch my children be with Mum and it brings me back to the here and now, I am grateful for this opportunity to care for someone who cared for me.
Loving someone with dementia has its challenges too; we really struggle with the lack of joined up care. Mum has about 7 or 8 health, social care and third sector professionals involved in her care. We don’t know them and they certainly don’t know us as a family, they pop in and out of our lives. We always try to involve Mum in her care planning, but as her cognitive abilities decline we have to adapt to how much information she can digest. That is what I am learning anyway. I have been in appointments with Mum where the professional will only talk to Mum (because she is the client) appointments when Mum’s other health conditions are not considered and appointments where professionals speak loudly and slowly at Mum, I have also been in appointments where Mum is bombarded with information she just can’t understand.
“I have been told “We know about dementia patients” My answer to that? You know nothing about my Mum!”
At her cataract operation recently Mum was told “During operation, if you want the consultant to stop, just raise your hand.” I said to the nurse, “My Mum won’t remember that – or anything else she’s been told because her dementia means her short term memory is affected. But the nurse said “I know that but I have to tell her anyway.” This felt like she was just ticking the box which said she had informed the patient. When trying to inform professionals about Mum’s needs, I have been told “We know about dementia patients” My answer to that? You know nothing about my Mum! Carers are experts in their loved ones care; professionals may see a bolshie daughter, an angry son, a grieving husband or a distressed wife in the same way a patient who is fearful may appear aggressive but there will be a reason behind the behaviour. We need support, kindness, a listening ear. We need you but if you are caring for our loved one, you need us too.
Suzy Webster @suzysopenheart