2009, 204 p
I haven’t really plunged very deeply into the pool of Alzheimers literature. There’s an element of consciously shutting my eyes here. Just like a car crash that you’re witnessing, it’s all happening faster to my mother than I want it to, but at the same time it feels as if the pain is being drip-fed, drop by drop, so slowly.
My beautiful, laughing, smiling, very talkative mother doesn’t say much any more- just a few words here and there, difficult to catch. It’s as if she’s retreated smaller and smaller into a body that I barely recognize now. And so, this book that looks at communication as Alzheimers advances into its mid-to-late stage is the right book for now.
It’s written very simply, in large print, with short chapters. These things are not so much important for me, but they may be for my father. It says a great deal for this book that I handed it on to him saying “I found this useful- perhaps you should read it”. I suspect that he’ll only dip into it gradually and that he’ll only be able to read a little bit at a time, and the layout of the book lends itself to that style of reading.
It is written by an American therapist who does group work with patients with Alzheimers, encouraging them to communicate their feelings. As a result, there’s a clinical bent to the work: she quotes recent research, and her emphasis is on getting her patients to talk to her about their own emotional world as their disease progresses. As a daughter, I often wonder what it’s like to be Mum now- are the days long? is she frightened? is she lonely? I can imagine that all these things are true, but she doesn’t tell me. I’m scared of asking because I don’t know what I would do with the answers. But this book reassures that the feelings are there and can be expressed in some ways.
The patient has her pain: we, as the husbands/wives/daughters/sons- or as she phrases it the ‘loved ones’- have our own pain. London stands on the professional side of the fence rather than on the family side. For example, when she is working clinically, tells her patients ten minutes before, then five minutes before, she actually leaves so that the patient can have an opportunity to express grief. And yes, I know that the ‘loved one’ has much more power in the situation, and that there’s a travesty in not giving a space for the one with Alzheimers to express what they feel, but it’s all so hard. But I don’t think I have strong enough shoulders to plan to bear the grief ten minutes, then five minutes, then as I actually leave. Once is difficult enough: three times is just too hard. It’s at places like this that the professional vs ‘loved one’ divide becomes clear.
There’s a bit of an Oprah-ish tone to the book- a bit of mawkish sentimentality and mushy spirituality- but not so much that I found it unbearable. Perhaps this says more about me than the book. Mainly it was good to hear someone who had such confidence that there is still a space for communication at all as Alzheimers progresses. The book is sprinkled with anecdotes and case studies which made me realize that even though at first I’d scoff “Well, her patients aren’t as advanced as Mum is”, that in many ways they were and that she was drawing from them things that I haven’t heard, or helped, my mother to say.
The advice is short, practical and realistic. There’s a dot-point summary at the end which is a good reminder of what has gone before. Perhaps it could have come at the start of the book for those loved ones who are resistant to reading anything at all- although perhaps then they wouldn’t go on to read the whole thing.
So yes, I did find it useful. Very useful, and in a way even affirming. I hope my Dad does too.