Dementia is a term I only became aware of in my twenties. Looking back I may have been ‘aware’ but I certainly didn’t comprehend how isolating this diagnosis can be. For the person who has it and for those sharing a life with them. The self doubt, the blank moments, nodding along when you don’t understand, the clumsiness and being self conscious. Thank goodness for all that was available. From the helplines, day centres, respite care, befrienders, specialised holiday companies and support groups.
When Grandma was diagnosed I started to look into the disease more. I was overwhelmed by all the information available. The financial help: from benefits such as attendance allowance, carers allowance, carers credit and council tax reduction, to personal health budgets. The assistive technology: like motion sensors which speak and remind to lock the door, voice alarm messages reminding to take medication from medication boxes that open at that set time of the day, and watches that call for help when a fall is detected. It was all a lot to process. Whilst, as with everything in life, different things work for different people, it was great to know that there was assistance available to help Grandma remain as independent as possible.
I am a big fan of the Dementia Friends training – both the super quick online version and guidance in person. I love the analogy that dementia is like all your memories being books stored on a bookshelf which is the brain. Everything that makes us who we are has a book of it’s own. The memories from when we’re young are at the bottom, from learning how to brush your teeth, with school years; how to tie shoelaces on the shelf above, to those more current memories on the higher shelves. When you have dementia it’s like the book shelf is being shaken. Books fall off – the most recent at the top falling first and those memories or knowledge being lost forever.
Planning for the future
Some of the best advice was to talk to Grandma. This was her life and it was important for us to know how she wanted to spend it. We noted it down formally in an ‘Advance Statement.’ This made her likes, dislikes and priorities clear to all. From when she would like to be woken up (not before 9am!) to making sure fish and chip Fridays continued! An ‘Advance Decision’ was also completed. Finally we discussed how we all wanted our funerals to be. I am hoping people will skip straight to the pub and have a band playing for mine! Whilst this can be an awkward topic it was a massive help when the time came, and gave us the reassurance that all was as she had wished.
Living with dementia
We grew to understand that we needed to wait for Grandma to process a question before she would answer. We recognised that ‘Yes’ was her default answer for when she didn’t get what we were asking of her. That showing her options was better than explaining. That she needed to sit and face us when we ate, and to place the cutlery in her hands so she knew what to do with it.
Towards the end Grandma no longer knew my name or that I was her grandaughter. But seeing the smile on her face as we watched films together, and listening to her memories of her life in London, or cycling to the Locks Inn at Geldeston to meet a special young man – are moments I will always treasure. Reminiscing over the good old days is something we both enjoyed.
This week is Dementia Action Week 17th to 23rd May 2021. Alzheimers Society has shared a short film to raise awareness (click on the picture below to watch it). It is heart breaking but sadly true for a lot of people, though we are lucky to have a lot of support available in Suffolk.
For more information on Living With Dementia visit Independent Age.
Follow this link for more info on becoming a Dementia Friend.
For great information on the support available: Dementia UK – Diagnosis Support
And for those looking out for someone with Dementia, there is the fantastic Suffolk Family Carers.