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19 May 2021

Dear future self with dementia

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I write to you from a University office having just started progressing out of the clinical world into a (hopefully) more academic one if this all work out. What matters here is your mind.

I hope if you are reading this with dementia that the disease has been kind enough to free you from the stage of anxious loss of recall. You have always worried about your memory, even from as early as your mid 20’s. It almost seems poetic in nature to succumb to what has worried you the most. Without your sharp cognition the world perhaps almost feels bearable to live in. Perhaps, I hope, you no longer see the juxtapositions and ambivalences present in society that used to bring so much pain. I read the other day that negative thinking and rumination is a risk factor for dementia, so I expect my fate is in part sealed.

I want so much that this letter finds you present, living in the moment and enjoying the comfort of happy days gone past even if you can’t quite dredge up the detail. Of course they say that when couples age together they become one unit with often one more physically capable and one more mentally sharp. I wonder if this has happened for us.

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I tried as a younger person to live a life to set me up to age well but no doubt I no longer remember why my body now hurts. It was because of a life spent horse riding, dancing, playing sport, sleeping on hard ground and squatted beside beds. My memory for these events and the injuries they have left me with is already fading. Yet I hold onto the warm emotional glow they bring even with the specifics have long escaped me. I wish that you do too. 

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I hope that despite the aches and the occasional period of lucidity that may now frighten you that you are still able to sway and dance to a familiar record. Should you be struggling for a tune I recommend “We Lost Dancing” by Fred Again and The Blessed Madonna. It will remind you of 2020, after which hopefully the world shifted and we all realised it was better to return to a sense of being rather than continue our frantic patterns of doing.

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I hope this letter has found you residing in a kind community, whatever form that has taken be in care home or country cottage. I expect at the time of writing this it will be a care home, possibly even a purpose built design where you can still “walk to town” to get your coffee. In my head nowadays the staff or local community residents will listen to you repeat stories of injustices you overcame and the patient stories you still hold space for in your head. They may no longer make sense but I hope people listen to you any way and don’t scurry past on their way to another.

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Finally, when it is time to depart this world having lived with dementia I pray it is without intervention. I would very much like to know you are able to close the door, turn off the lights and sleep.

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Meri Westlake is a physiotherapist in the U.K. NHS. Her interests include exploring multiplicity in explanations of health and well-being, and attitudes towards rehabilitation and de-conditioning. Although she also does follow the latest shiny thing for her. She hopes to soon start her PhD in recognising and responding to deconditioning.