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'My distress at not being able to fix things for mum' - Julia's Story

Trying to Soften the Edges

In Autumn 2015, my mother woke up one morning and didn’t recognise the house she had lived in for 20 years. Initially bewildered by her dramatic decline and fluctuating levels of confusion and lucidity, the doctors diagnosed vascular dementia. After six weeks in hospital, she was transferred to a care home.

Over the two and a half years since then, I have learned a lot about dementia and how to soften its edges. I moved to be near my mum in Wales. My married life, my work and my health have all been affected.

From the very first, mum was terrified about being on her own in her new surroundings. Distressed to see her so vulnerable, I was keen to visit regularly until she settled in. Increasingly, I spent more time in her home in Porthcawl, South Wales, away from my home and husband in Brighton. My job involved working from home, which made this easier.

Initially, I was optimistic about an innovative method called Contented Dementia, described in a book by Oliver James. It provides helpful insights and guidance on how best to support someone with dementia. The hospital consultant in charge of elderly care worked with us to implement a Contented Dementia plan for mum. It has helped with my day-to-day dealings with her but hasn’t prevented my mother’s emotional meltdowns or improved her care, when I’m not there.

My distress at not being able to fix things for mum began to impact on my own health almost immediately. Within just a few weeks of mum going into hospital, I was admitted to A&E in the same hospital. I had a kidney infection and sepsis. My husband shuttled between the two wards.

Another infection in January 2017 (severe pneumonia this time) resulted in sepsis again, and another 10 days in hospital! The day after I left hospital, I learned I was to lose my job; perhaps a blessing in disguise. I was probably buckling under the pressure of caring for mum and working full-time. An important lesson for carers is that you really should take care of yourself before you can look after anybody else. I have always taken care of my health, but now I am more tuned into the emotional fallout of caring for mum. Meditation helps me to recalibrate and take time out.

I have attended various training events and researched dementia-care initiatives online in the hope of learning how to support mum better. I regularly try different activities to improve mum’s wellbeing, including exercise, singing and colouring. I also ensure mum gets to do the things that matter most to her: walks in the country, attending church services, and staying in touch with old friends. When occupied in these kinds of activities mum is energised and happy.

I use breathing exercises and meditation to help mum through times of anxiety (they help me too!). I joined an online community of people affected by dementia and started a blog to share what I learn.

So, two and a half years on from the original diagnosis, how are things going? Not great. Mum still hasn’t settled. She doesn’t recognise her own room, or the care home she’s living in. She frequently wants to leave, and gets very distressed when she discovers she is locked in. She is always desperately relieved to see me. When I leave she often says, ‘Julia, I’m scared,’ which breaks my heart.

While I believe the home is good in many ways, it doesn’t seem to provide individual care tailored to the needs of each resident.  There is a body of best practice knowledge and skills which I don’t see implemented by the staff, lovely and caring though they are. I think the training is lacking. They could do a lot to reduce distress, but simply don’t know how.

Concerned about preserving mum’s rights under the Mental Capacity Act 2015, I withdrew my support for the Deprivation of Liberty Safeguards. In the next couple of months there will be a Best Interests meeting, organised by Social Services, to revisit my mother’s case and review the best options for her.

Meanwhile, my life is in limbo. There are many upsides to living in my mum’s home town, but I am a long way from my home, and my career is on hold. I am increasingly drawn to the idea of moving back to Brighton, and taking mum with me.

My distress at not being able to fix things for mum began to impact on my own health almost immediately. Within just a few weeks of mum going into hospital, I was admitted to A&E in the same hospital

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