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After the recent documentary on BBC1, ‘Mum and me’, about Ethel, an elderly woman with Alzheimer's, and her family, I felt very pleased and privileged to be able to ring and speak to my own aged mum. What had she thought about the programme? ‘I really admire her daughter for making such a truthful film. And it's scary’.
It is, of course, reasonable to be scared of Alzheimer's, both on an individual and a societal level. What this film did was to confront (some would say, in a confrontational way) the reality of living with the disease and to help families doing so to acknowledge and share the difficulty, the fear, the frustration and the pain.
The filmmaker, Sue Bourne, has made many documentaries about people's lives including one about a group of women supporting each other through breast cancer which was shown just before she herself developed breast cancer. Not being able to share her diagnosis with, and get support from, her mum during the treatment was one of the toughest aspects of the Alzheimer's. Ethel has seen the film but a version with the breast cancer edited out, just in case she did understand.
Sue Bourne began the filming as a personal project to record her mum's progress for herself and her daughter, Holly, and then realised that it would be helpful to share it with others. Both strong-willed women, Ethel and Sue had always had a difficult relationship but when, in the film, despite her incontinence and the weekends away spent cleaning bathroom floors, she hugs her mum and tells her that she loves her, tears arrive for both daughter and viewer.
She has, inevitably, had some criticism about showing the very personal aspects of her mum's condition and care, but much more she has had praise for her honesty. She presents herself as no angel, her frustration at times is evident and, at one point, she comes close to hitting Ethel. But she, Holly and her mum also enjoy being together and they laugh (a lot). It was Holly who first realised that all was not well with her grandma and the strength of their relationship has survived and grown with the disease, partly because of Ethel's positive and uncomplaining personality.
In an interview in the Guardian,1 Sue said that what she had realised from watching the footage was that all three of them deal with difficult situations with humour. ‘We laugh our way out of emotion’. At one point in the film Ethel points to a man she thinks is her father. Sue tells her that it's actually her husband of 49 years, Jack, who has since died. Ethel laughs: ‘That's why he's so bloody familiar’. Another scene is of Sue finding her mother crying and explaining to her gently why she's got reason to be sad, ‘Your husband's dead, you've got Alzheimer's, you're in a nursing home …’. Ethel replies, ‘Well, thank you. Now, I'm sad’.
I have discussed the film with several patients caring for relatives with Alzheimer's and they've all been glad that it's been made. The amount of laughter is not typical of these relationships and not everyone can afford to even try to take their relative away for comfortable, if incontinent, weekends, but the emotional suffering, frustration, and occasional anger are common to all. The film provides useful professional learning for medical students, doctors and carers about the reality of living with Alzheimer's. It also encourages us all to enjoy and appreciate mums and dads, grandmas and grandpas before they develop Alzheimer's, which many of them (and us) will do.