Dementia is not a long goodbye; it is a new beginning
Hazel Britton, who is supported by Wigan’s Later Life and Memory Service (LLAMS) at Greater Manchester Mental Health NHS Foundation Trust (GMMH), has written a short memoir to help reduce the stigma of living with dementia.
The term 'dementia' describes a set of symptoms that include loss of memory, mood changes, and problems with communication and reasoning. There are many types of dementia. The most common are Alzheimer's disease and vascular dementia. Dementia is progressive, which means the symptoms will gradually get worse.
Hazel was just 57 when she received her diagnosis, following a PET scan a few years after she began to experience symptoms.
By her own admission, Hazel was devastated and believed that ‘her life was over,’ As many people do in this situation, Hazel turned to Google for advice and received a barrage of frightening information, including a life expectancy of just five to eight years.
Realising that she needed more expert support, Hazel was referred by her GP into GMMH. where she was prescribed medication to help manage her frightening symptoms such as hallucinations and was paired up with Occupational Therapist, Gill.
Wigan’s Later Life and Memory Service (LLAMS) team works with service users in a multi-disciplinary way, to ensure that all of their needs are met, from assessment to diagnosis to treatment. In addition, the team offers group support for both the carer and the service user at ‘Post Diagnostic Education Groups’.
One of the exercises that Hazel was encouraged to do to help her process her diagnosis, was to write a ‘Dementia Memoir,’ a short piece of writing talking about her experience of living with dementia, and words to encourage others who may be in a similar situation.
Hazel even talks about how she is grateful for her diagnosis and believes dementia has encouraged her to appreciate the little things in life; spending time with those she loves and doing the things she enjoys.
Hazel said:
The real difficulty at the beginning of my diagnosis was acknowledging the support around me. But once I did, I began to flourish.
Conversations about the diagnosis, treatment and progression are tricky, and it can be tempting to ignore them, but the outcomes of these conversations enhanced my quality of life.
Without the support I received from Wigan’s Later Life and Memory Service, I wouldn’t be where I am today. I now have a positive outlook, not only on my diagnosis, but on my future!
Megan Houghton, Mental Health and Wellbeing Practitioner, GMMH Later Life and Memory Team said:
Working with Hazel has been incredibly insightful, and I have learnt so much from her.
The aim of this piece of work is to encourage a new perspective on dementia, for those with a diagnosis and even those without.
Dementia affects a profound number of people year on year, and we just hope this memoir can somewhat help reduce the stigma around it.
Hazel’s top tips for life after diagnosis:
- Embrace every day, fill your day with things that make you happy!
- Talk to somebody if you’re struggling, don’t feel embarrassed about your diagnosis.
- Accept the support around you, even if you feel that you don’t need it; you may learn something new!
- Remember that you are important, and you matter just as much now as you did before your diagnosis of dementia.
You can find more information about Wigan’s Later Life and Memory Service (LLAMS) by visiting: Memory Assessment Services in Wigan | Greater Manchester Mental Health NHS FT (gmmh.nhs.uk)
Read Hazel’s full memoir below:
At 57, I was diagnosed with Lewy Body dementia. My first thought was ‘that’s the end of everything’. Especially when others sympathised; ‘Dementia is a long goodbye’. I felt terrified, I was devastated, I felt stunted. Looking back now, I ask myself why did I feel like this? Was it the adverts on television that show dementia at its worst? Or, was it the fear of what lies ahead? The negative stigma that surrounds dementia is incredibly detrimental to enabling one’s understanding of dementia, how each diagnosis is different and how each experience affects each person. Listening to the stigmatising opinions and having these thoughts myself, would have taken over my life. I chose to ignore the media and to stop dreading what is to come. I told myself; ‘if I can’t change it, why worry?’ The one thing that we know about dementia, is that you can’t change it. Dementia is just a word, and even if somebody told me they had a magic wand to change my diagnosis, I wouldn’t use it. I didn’t accept the diagnosis, but I learnt to live with it. I learnt to adapt to the diagnosis and now dementia is just a small part of me, it’s just another branch. I often use the ‘tree of life’ analogy whereby the branches on the tree are made up of different attributes, dementia being one of them. My branches keep growing, and so do I.
Where I was once frightened of my diagnosis, I am now grateful for it. I believe my dementia has encouraged me to appreciate the little things in life, I feel as though I have been given the time to slow down, spend time with those I love and do the things I enjoy. It is easy to take things for granted, before my diagnosis I would spend my days rushing. I now take it day by day, I watch the birds in the trees, I ring my children and tell them how much I love them. I still do all the things I used to do, I just take it slower, and I enjoy it. Every day is different, but I enjoy the surprise of what each day brings. Yes, I forget things such as what I walked into the kitchen for and what I had for breakfast yesterday morning, but I can remember my childhood, the day I got married, the day I gave birth. I get to appreciate these memories more now, and I think that is wonderful.
The real difficulty at the beginning of my diagnosis was acknowledging the support around me. But once I did, I began to flourish. Conversations about the diagnosis, treatment and progression are tricky, and it can be tempting to ignore them, but the outcomes of these conversations enhanced my quality of life. Without the support I received from Wigan’s Later Life and Memory Service, I wouldn’t be where I am today. I now have a positive outlook, not only on my diagnosis, but on my future! The team, specifically Dr. Malik, Jill Higham and Megan Houghton, have provided me with the upmost support and continue to encourage me to remain the person I always was, as well as adapt to all my new quirks. I would also like to thank my family and friends, specifically Susan and Anne, who support me every day and enable me to live a fulfilled, independent life. So, if you take one thing from this memoir, it is to accept the help.
The journey is just beginning, so step on the path. Dementia is not a long goodbye; it is a new beginning. You can still be you, with or without a diagnosis of dementia. I am living proof!
Thank you for taking the time to read my memoir,
Hazel Britton
