Thank you to today’s guest blogger, Maureen, and to Lee Stribling for giving me permission to re-post Maureen’s story from Lee’s fab dementiachallengers.com site.
If you don’t know this site, I thoroughly recommend that you take a look – it is a wonderful, resource full of practical information and tips for those caring for someone with dementia. Lee has built it in record time and knows exactly what to include because she is a carer herself . Experts by experience are experts indeed.
As an O.T, Maureen has a keen personal as well as professional interest in dementia and related social issues and is studying at Masters level with a view to informing and improving services. She has been something of a Twitter protegée and last week I was delighted to announce her Twitter graduation
Maureen originally dipped a somewhat reluctant toe in the Twitter stream, telling me she preferred Facebook (really!) and is now as immersed as the rest of us. She uses the #dementiachallengers #hashtag proudly and with purpose and we are very proud to have her among our ranks…
Mum died 15 months ago. She was 77.
I first noticed Mum’s ‘forgetfulness’ when she and Dad came to help me settle into my new flat in Edinburgh – she got unusually mixed up with orders for tea and coffee, and Dad looked worried. She was only 68.
Mum was a bright intelligent woman who had held down responsible positions in finance all her life, a fantastic cook and homemaker, a loving mother and grandmother. She was kind, had the driest wit and could be formidable at times too!
My dad, George, was her devoted partner and the love of Mum’s life. He cherished her and cared for her (much more than we knew) until he was taken ill with cancer – we had 5 weeks from his diagnosis to our final goodbye with him, just the week before Christmas 2005.
The next part of the journey was about to begin; it took us through grief, despair, frustration, anger, and loss.
Mum soon became unable to live on her own, despite a combination of homecare services and family input and after a crisis was admitted to a secure psychiatric ward in the local geriatric hospital. My sister was relieved (she felt Mum was now safe), and I was devastated (I felt that Mum had lost her freedom) – 2 completely different viewpoints, but both valid in the circumstances.
During this journey, people came and went. Some said things like, ‘she’s a poor soul’ (not helpful), ‘it’ll be a blessing when she goes, she’s not your mum anymore’ – I’ve never worked out what that means – of course she was still ‘Mum’ (but with a few complex extras)!!!!, and ‘we don’t go to visit because we prefer to remember her as she was’.
Things finally settled and after 9 months we found a suitable Care Home for Mum where they were happy for us to make a big contribution to her care. Mum had a visit from a family member on most days of the week, and her little room soon became a happy, homely place. Sometimes I would just sit beside Mum, holding her hand and maybe looking out at the birds in the garden, other times we would giggle together, tidy out her wardrobe together, walk together, listen to The Three Tenors or Frank Sinatra, or eat home-made scones with jam and drink tea from her own china cups (Mum’s favourite afternoon tea) – by now I realised that our time together was short and was determined to make these moments count. In the end, the precious moments seemed to ease the tough ones out.
One day, very recently, I met an amazing woman from my academic role in life (thank you, Fiona) who shared an article in relation to the Human Condition with me which touched my heart and really made me put myself in the shoes of someone who is perceived to be ‘different’.
The following is a short excerpt from this essay;
‘Our identity is partly shaped by recognition or its absence, often by misrecognition of others and so a person or group of people can suffer real damage, real distortion if the people or society around them mirror back to them a confining or demeaning or contemptible picture of themselves. Non-recognition can inflict harm, can be a form of oppression imprisoning someone in a false, distorted and reduced mode of being’
Maureen Grove: @BenMacdui1
Lee Stribling: @dragonmisery
Gill Phillips: @whoseshoes
And… if you have any lovely bright, colourful photos, suitable for bringing extra cheer and interest to the dementiachallengers.com site, Lee Stribling would love to hear from you.