The Waiheke library is a new joy in my life. I’m going to remain a member of the University of Auckland library, for scholarly reasons, but I can see that this branch of the Auckland City Libraries is going to meet a lot of my research needs and provide a lot of pleasure, too. All I have to do to summon up a book or DVD is to go to their website, search the catalogue, order it to be delivered to the Waiheke branch and Bob’s your auntie. Books free and DVD’s a couple of bucks. I’ve already got books on army nursing to help with my talk for the Charlotte Museum on Auntie Cal, and for context and colour I ordered up the DVD of the BBC series of Testament of Youth, the Vera Brittain WW1 classic about her delaying her much prized chance at an Oxford education in order to go nursing, and her loss of fiancé, brother, and at least three other male friends. Its 5 episodes were totally engrossing and, unusually for me, I watched them in quick succession over a couple of days. Lent the DVD to Rosemary and Julie who also loved it.
I haven’t been reading quite as much on ageing recently, although I’ve picked up work on my 90 year old study. But somewhere in my circling around the internet, I saw a reference to a new book from Sally Magnusson on her mother’s dementia, and realised I could order it straightaway from the library rather than wait a year or two for it to turn up secondhand somewhere, which has been my usual strategy. Of course I’m familiar with Sally Magnusson from BBC Scotland, as well as her father, Magnus Magnusson (magnificent Icelandic name), also a Scottish journalist and author. What made it especially a must-read is the Scottish connection. When I worked for the Chief Scientist Office I handled funding for the Scottish clinical research network on dementia, as well as the office portfolios for ageing, mental health and dementia. I had the great experience of getting to know dementia researchers in Scotland and throughout the UK, and participate in UK and Scottish policymaking around dementia research, as well as ageing and mental health research.
The book turned up within a few days, I picked it up yesterday afternoon and read it straight through, last night, middle of the night and this morning. It was very moving. And people I knew or had met kept turning up in it – Ian Deary and John Starr from the Lothian Birth Cohort study, June Andrews from Stirling’s Dementia Research Centre, Henry from the Scottish Alzheimer’s Society, Sube Banerjee, from Kings College London. She wove her family’s history into the memoir and it was lovely to be surrounded by Scottishness – mainly Glasgow and Mull – while I was reading it. (Glaswegians love Glasgow more than an outsider can quite understand.) Sally described her mother’s illness, from before her father’s death through the usual stages of deterioration and ending with her death, at which point her self was completed ravaged.
Love shines through every page as well as sadness and helplessness as her mother gradually lost herself, with her distress increasing as she became less and less able to act in and make sense of her world. My Scottish 90 year olds are chiefly concerned about losing their independence as mobility becomes a problem for them. But losing your mind makes losing your physical independence look like a minor mishap. Mamie was also a journalist and a lover of words and song, and that helped her articulate from time to time the process of alientation from her self. Mostly Sally saw her from the outside, as a daughter, but sometimes there was a glimpse of how the world must have looked from Mamie’s perspective. And those glimpses are terrifying. Warm, intelligent care was given unstintingly by Sally, her sisters, brother and Mamie’s grandchildren, a host of caregivers, as well as Mamie’s twin sister who had long lived in as the family’s shadow and now became the target of Mamie’s aggression.
Magnusson dwells on the causes and costs of dementia, not particularly fruitfully and lightly traversing research which is quite familiar to me; where she is stronger, is in her consideration of institutional care, both from her observations of other old people at times her mother was in hospital, and with a more journalistic slant, from interviewing NHS people. It’s all bad, basically. Stay out of hospital is the best advice that can be given, because hospitalisation worsens dementia since it is frightening to dementia sufferers. Their worsened state may lead to psychiatric drugging which just makes things worse again, and they may catch other illnesses in their debilitated state.
And that’s just hospitalisation for physical illness, not as a dementia patient, where the situation is often beyond misery. I think about what I read in the Dominion about Margaret Shields and her last weeks, where the so-called care was outrageous. Something has to be done about this and I will be involved. The sad thing is that good rest home care, while immensely better than poor care, is still likely to be frightening for the dementia patient. So a huge push for improvement has to be made to move situations from total violations of human rights and dignity to the merely miserable. Hardly any families would be able to provide the strong network of support brought by Sally’s family and they were at the end of their tether by the time of Mamie’s death, wondering if they could carry on at her home. She’s right that caring is life-enhancing as well as stressful but nevertheless, it cannot always be provided by families.
The most promising treatment that Sally discovered was music and singing, and she has now set up a charity to promote personal music therapy for people with dementia. She presented some convincing arguments from researchers, and overwhelmingly showed in her account of caring for Mamie, that music reaches where words cannot, leading to improvements in mood and function. It also helps with other neurological disorders such as Parkinson’s. This made me think that, as a preventive strategy, I should bring more music into my life, learn to sing and dance with competence, not just for my own sake but in order to relate to those of my friends unfortunate enough to be stricken by the cruellest forms of dementia. And it might not be a bad idea to learn to keen and wail effectively! The situation certainly calls for it.
Island Time of Life 