I recently finished reading Keeper, Andrea Gillies's prize winning account of a year and a half spent caring for her Alzheimer's suffering mother-in law Nancy, and depressed and ageing father-in law, who had moved in with her and her young family in a big house in the middle of nowhere somewhere in the north of Scotland.
Its an utterly unromantic memoire of a ferociously difficult period of her life. Whereas in John Baily's books about caring for his wife, the writer Iris Murdoch, his profound love for her after a life shared together justified the sacrifices her Alzheimer's forced him to make, it was much harder for Gillies to set her life aside as she'd hardly known her mother-in-law even when she was in good health.
The book alternates between descriptions of her struggles to care for Mother and Father while trying to maintain her own self respect by working as a writer, and clearly written summaries of her research into the science behind dementia gleaned from all the books and blogs she could find on the subject. She precisely documents the irrationality of the effects of disease as it works its way through various important parts of Nancy's brain. The rapid mental deterioration combined with her physical health and mobility makes her mother almost impossible to cope with and ultimately drives Gillies herself into depression and near collapse.
She also describes the problems with social and health services who are supposed to be helping; how difficult it is to understand then work with the system, the constant intrusions into the home from care staff putting family on public display and the difficulty of getting first repsite care, and eventually a full time place in an Alzheimer's equipped home.
The book reminded me how relatively well my sister currently is given the prognosis of her diagnosis, and how fortunate she is to have remained relatively stable for the past five or so years. It helped crystallise my desire to film her in her good spirits, to find ways to film the way she is still able to get intense pleasure from life despite her lack of a working memory. I have no idea what will happen in the years to come, and I hope that somehow my sister does not follow the same path as Nancy, but for now I am determined to focus on the positive.
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A displaced place for thoughts, discoveries, and confused moments on the road to making films
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Martin, I have been following your blog intermittently for a couple of months. I am interested in bringing Specal to Norfolk, and in touch with Penny Garner. I haven't read Keeper, but your description echoes my experiences coping with my mother's Alzheimers. The word support is bandied about endlessly by social services, but they only seem to mean bringing in extra people so the carer can get away, or trying to fit the vulnerable person into an established system of day care which was manned by volunteers and expected a clean, continent, pleasant subject. What I needed was a way of dealing with my mother during all the other times, continuity when she was away from me, and most of all the ability to make her content and happy. I discovered Specal too late for my mother, but yearn to help others like me who have no wish to get rid of their Alzheimers sufferer but know they are failing. Unfortunately the Alzheimer's Society is actively blocking Specal. (See their web-site for statement, I expect you already have). Keep up the good work. Anne
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