Gary from Sutton cared for his mother Dorothy, who had Alzheimer’s disease, for five years until she sadly passed away in August 2015, aged 84.
Following a referral to a consultant, a memory test and brain scan – all of which took place over a number of months – Dorothy’s GP diagnosed her with Alzheimer’s disease in April 2012. The diagnosis confirmed what her family thought as she had been showing signs of dementia for year or so. Gary, her son, explains:
“Mum had been forgetting what had happened or where she had put something; she would also repeat herself and do strange things. Initially her forgetfulness wasn’t too bad but as her dementia progressed she would behave more erratically, snap at people, and even hallucinate at times. Mum was such a well-liked person with a good nature and sense of humour so her change in behaviour really stood out.
Being diagnosed with dementia was Mum’s greatest fear. Her mother was diagnosed with Alzheimer’s in the 1980s and at the time awareness and knowledge of dementia was quite limited. My grandmother had a bad time of it and it had been a stress and strain for my mum so she dreaded the same thing happening to her, so I am grateful that she was oblivious that she had the condition.”
Dorothy lived at home on her own and Gary was her carer, but as her condition declined it became more difficult for him to care for her himself.
“I got some advice to register with the social services, and we had a social worker who assessed both mum and me as the carer, to see what help they could provide. Agency carers would come to help me and mum out but then we hit a wall. There were a couple of days where mum was shouting and not making sense and I couldn’t cope. I rang charities that could support me like Age UK, and when I spoke to Alzheimer’s Society they mentioned that an Admiral Nurse had just been allocated to Sutton. I felt so fortunate,” says Gary.
Gary was put in touch with Amy, the Admiral Nurse for Sutton. “Amy’s main concern was dealing with me as the carer to ensure that I was coping and looking after my health, and getting adequate breaks. She gave me tips on how to deal with Mum’s shouting, like stepping away into another room for five to ten minutes. And, due to her specialised knowledge on dementia she was able to work with the assigned care agency to help them to better manage mum when aiding her with personal care, so it was less traumatic for mum and the agency care worker.
Amy came to see me on a regular basis, attended meetings with social workers to support me and my daughter, and she helped me to increase mum’s care plan and package with Sutton Council when it became apparent that mum needed additional support and should move into a care home. Amy’s help was invaluable and I am indebted to her – not only did she give me great practical help and advice but she was a ‘go between’ between me and the social care worker.”
In the final year or so of her life, Dorothy was admitted to hospital on a number of occasions, not because of her dementia but due to having urine infections. “The staff were aware that Mum had dementia and some of the staff understood how the condition could affect her, however some of the staff seemed unaware of the possible affects. It made me realise that staff working in hospitals need to be more knowledgeable on dementia as it will help them to better understand people with the condition if they aren’t cooperating, or are unable to express their feelings and pain, for example,” commented Gary.
Sadly, Dorothy passed away unexpectedly whilst in hospital with a blood infection just before she moved into her care home. “It was a traumatic time for mum, me and our family, especially in the final year or so, but overall everyone who helped and contributed made her last few years as good as possible. And, as my Admiral Nurse, Amy helped to improve mum’s and my quality of life, and reduce my stress,” says Gary.
As a former carer, Gary now participates in the Sutton Admiral Nurse Steering Group Meetings and volunteers to participate in workshops about government care reports as his experiences can help others who are caring for someone with dementia.