7 lessons learned about caring for someone with dementia
She was diagnosed with Alzheimer's disease and so began our family journey of discovery and enlightenment. As a family and individually we each needed to find ways of navigating through the changes, frustrations, anxieties and losses that this disease brings.
At times it was like trudging through deep, ever-shifting sands with no prospect of ever reaching the oasis that would restore us!
We had already started mourning in a sense... not overtly of course, but inside, in our hearts: mourning the loss of the future relationship with Mum (grandma) that each of us had perhaps unconsciously planned for and graded mourning for each faculty and skill as they slipped away from her, and as she seemed to slip further away from us.
Accepting that this new relationship would be different, but was a 'together journey', was an important step for me.
Recognising the positives
Life became about how we could help Mum to live the best quality of life that she could.
It was challenging, frustrating, sad but also joyful, hilarious, warm, loving and rewarding. And in many ways I believe that Alzheimer's gave me the time to know Mum better, to discover new things about her, share new experiences, and love her more.
There is so much negativity around dementia and I understand why. It is a cruel disease slowly destroying the brain and taking with it memories, knowledge, understanding, emotions, communication, and physical abilities. It has been described as the slowest of deaths and can feel like the most drawn-out bereavement for families to witness.
But now, having just passed my mum's second anniversary, I wanted to share the joys and triumphs, the positives, the fun and new learning that Mum's dementia brought to me.
Lesson 1. Outings should be planned
New wisdom: Don't avoid new experiences, but be less ambitious and plan carefully. Always have a backup plan. Keep a sense of humour.
In the early stages of Mum's dementia, I sometimes took her out for day trips. Using local transport helped to keep connected her with the past.
Bus drivers were often impatient because she didn't remember how to present her card for the scanner, which would make her more anxious. But when one driver insisted that I show him my own OAP pass, she was highly amused (I was only 50 at the time). And having forgotten about her own upset, she chatted happily to a toddler all the way to town.
A day trip to Skipton was going really well, until I decided to amble around the market (which she and Dad had always enjoyed doing). Every time I veered towards a stall, she huffed and gave me a 'black look', but all that dissipated when I mentioned coffee and a cake in a little tea shop!
Mum really loved going to coffee shops. In her later years, even the sparse and basic ASDA cafe was 'beautiful' to Mum. But my favourite trip was to Betty's Tea Rooms in Harrogate. We had a silver service lunch, polite waiters and waitresses and cakes from the trolley. Mum loved it.
The only anxiety was how to 'visit the ladies' with a sweet little old lady that might wander off while I was still in the cubicle. I am so grateful to the countless strangers who kindly 'watched' Mum for me on our day trips out!
ncG1vNJzZmivp6x7orjZoZyipZWnwG%2B70aBlrqNfl7mws45wZKWdo6i8r7%2BMpZyaqp6asW6vwKugp59dm7yzedKopJ6nnpp6pbHMnqWtoZE%3D