There’s a brilliant film starring Julianne Moore called ‘Still Alice’. It tells the heartbreaking story of Alice’s early onset dementia and her desperate attempts to cling on to herself and all that that means.
I was reminded of that film several times in the last few days. I thought of it when I was talking to Robin Thomson about his wife and his amazing book about their journey with Alzheimer’s (more about this in my next blogs) and I thought of it when I was wondering what on earth was happening to us all during this pandemic.
During my work in care homes I often see older people who are struggling to let us know that they are still the people they always were, with a sense of humour, a past, a present and a future. They want us to know that they have lived extraordinary lives and that they still love and have feelings.
Wendy Mitchell in her very insightful book ‘Somebody I used to know’ hangs on for as long as she can to the ‘her’ she knows at work. Finding ways to continue to the best ‘go to ‘person for help and advice.
And I got to thinking, that that is what we are all doing now in the confusion and muddle of a very changed world. My world has shrunk. I spend my day indoors apart from the one piece of outside exercise, I’m allowed per day. I eat cake for breakfast and sleep way more than I have ever slept before. I don’t set my alarm and I’m not at all sure I know what day of the week it is. It’s a kind of living hell and if one more Facebook post sends me positive thoughts, I might break the screen. I endlessly text my daughter (the doctor) with worries that seem real to me – but are probably not based in reality. I check up on my three sons but their responses suggest that they are far more worried about me. Am I still me? If I don’t go out to work, if I don’t go shopping, go to the gym, go out for coffee – who am I? One day I managed not to get dressed at all – no hair wash, no makeup, not me.
At 3 am this morning this really hit me (I find 3am is a great time for random thoughts!) – maybe this is what it feels like in the early stages of Alzheimer’s? When you are not quite sure where you fit into the world anymore. When your normal routines are muddled, when the things you usually do just can’t be done. At what stage do you cease to be ‘you’?
I feel confident – this lockdown will pass, ‘normal’ life will resume, albeit with some changes; I will get up at a sensible time and spend my day doing meaningful tasks again. Alice didn’t have this luxury. Wendy doesn’t get this choice and Robin’s wife, Shoko, wasn’t able to consistently reconnect with herself again. I might be struggling with being ‘still me’ but it is nothing compared to the struggle of those with dementia.