So Long 2018 and Thanks for all the Support

Last year was quite a time for me and my mum. After over two years in a care home, I brought mum back to her own home. I had exhausted all possible approaches to improving her wellbeing in the care home.

Mini Review of 2018

In April, I described the anguish and disorientation I imagine mum experienced every day. Her homecoming in July was difficult for both of us. The first week was particularly challenging, when I had almost no time off from caring and I wasn’t getting enough sleep. Four weeks later, I had more help but sleep deprivation continued to be an issue.

I had kept mum’s room at the care home just in case, and at that point I still wasn’t convinced mum was significantly better off at home. However, I didn’t want to return to the previous situation at the care home, where I could no longer influence her care. So even though the trial hadn’t met my two tests, after six weeks I decided to keep mum home.

Things are much better now that I am getting sufficient time off. This includes two nights when a carer stays over, and two days when mum goes to a day centre. My plan is to care for mum for a year, during which time I can learn what works to alleviate her anxiety, draft a better care plan and find a new care home. In July 2019, I will move mum into a new care home so I can return to my home and husband in Brighton.

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I have talked a lot about the challenges and difficulties over the last year, but as yet I haven’t acknowledged the amazing people who have done so much to help us. Recently, I was able to highlight the contribution of one doctor, whose support has been hugely valuable.

Invited to Share my Experience

Last month, I was invited to share a ‘magic’ or ‘tragic’ moment of the Memory Assessment Services in Wales as part of a review led by Public Health Wales and 1000 Lives Plus. The invitation came from Jayne Goodrick, the wife of Chris Roberts, who lives with dementia. Both are vocal advocates and influencers helping to shape policy and improve support for people living with dementia, and their carers. I attended a meeting in Cardiff to share my story. Here it is.

My Magic Moment

Following a series of mini-strokes, reduced mental capacity and bewildering levels of confusion my mum was admitted to the Princess of Wales Hospital in October 2015. After six weeks, she was diagnosed with vascular / mixed dementia.

No longer able to live on her own, it became clear that mum would have to go to a care home. While mum was still in hospital, I told Dr Robert Colgate, Psychiatrist Consultant from the Mental Health, Wellbeing & Outpatient Centre, that I was hoping to get the staff in the care home to implement a Contented Dementia care plan for my mum. I was inspired by a book I’d been reading called ‘Contented Dementia’ which outlined the benefits of the approach.

To my surprise, Dr Colgate showed interest and a willingness to learn from the process. He was open to new methods and learning that could be shared with other families and care home staff. Following the introductory training, I started developing a ‘Contented Dementia passport’, a type of care plan, for my mum. The process wasn’t straightforward, and I could easily have given up, but knowing I had the support of this Consultant encouraged me to persevere.

When I had a draft plan, Dr Colgate supported me by attending quarterly meetings with the care home staff alongside the Occupational Therapist; meetings he wouldn’t normally attend. He helped facilitate discussions between mum’s senior carer and me, and offered helpful suggestions. His involvement meant the care home management and staff took me much more seriously, and actively engaged with the process, which involved learning and adapting the plan, and following suggestions from it.

Many months later, when despite these efforts mum had still not settled, and the staff believed there was nothing more they could do, I decided to bring mum back home.

In a Best Interests Meeting, Dr Colgate supported my decision to bring mum home. He continues to offer support via quarterly meetings, even though mum is now the responsibility of the Community Psychiatric Team.

Especially given how extremely busy this Consultant is, I am very grateful for his open mind and generous support.

Thank You and Happy New Year!

There have been many people over the last few years that have supported mum and I, and made our journey so much more possible, successful and rewarding. This includes leaders in dementia care, such as Penny Garner, staff in Social Services and some amazing carers, who I am learning so much from. Also, an unexpected bonus has been support from other family carers, relatives of residents at mum’s care home and old and new friends on social media.

There have been difficult times in 2018; there will be difficult times in 2019. But the support that I and my mum continue to receive helps us through good times and bad.

I want to thank all of you and wish you a very happy and healthy new year.