5 days ago
Still Me by Sabina Brennan: I'm a top dementia doctor, but even I wasn't prepared when my mum got the disease -- here's what I wish I'd known
Still Me by Sabina Brennan (Green Tree £18.99, 288pp)
Dementia, writes Dr Sabina Brennan, 'arrived in my life at a time when an ongoing stressful situation at work was impacting significantly on my health'.
I warm to her immediately – she has been where I have been, where you may be; her book on caring for a loved one with dementia speaks to her experience of caring for her mother, as well as dozens of others.
Even more powerful is the fact that Brennan, a psychologist, recognised neuroscientist, host of the Super Brain podcast, and once director of the dementia research programme at Trinity
College Dublin, struggled with the role just like the rest of us. Brennan begins her book with a poem explaining the title and reminding us of the themes of anybody's dementia journey: I have dementia and I am still me, and I care for you and I am still me.
It's easy to lose sight of both: my mother's illness changed her so much, it was often hard to recognise her and yet she was still my mum. And though she refuted our relationship – 'I am not your mother' – I was still her daughter. The poem also makes a plea for peace in a torrid journey, using still for calm.
Brennan is at pains to make 'care partners', as she calls them – us – understand the imperatives of caring for themselves: put your own oxygen mask on first.
You can't care well if you're unhappy, unhealthy, sleep deprived. Looking after yourself might not seem obvious but the rigours of a care partner's role – described as 'the 36-hour day' by memory experts – means you must. As a psychologist, Brennan urges carers against feeling guilty or resentful.
If you're worried Brennan is a know-it-all who presents as a paragon of caring virtue, don't be. She has the self-awareness to know she lacks the patience for full-time care. 'I am best suited to short stints of quality care,' she writes – her mother spent the week in a nursing home and weekends with Brennan.
Like many people, Brennan is sometimes frustrated by the care her mother received before she died in 2016. 'I let the anger and the expletives loose,' she writes, 'which gave them an excuse to ask me to leave.'
She reminds us that experts are not always right; it is natural to assume that the advice that we receive from professionals prioritises a sufferer's best interests, but this is not always the case – so don't be afraid to question.
Circumstances meant I did things differently; I cared for my mother at home. But Brennan and I are agreed, there is no right or wrong; 'providing the best possible care for your relative doesn't mean you have to provide that care personally'.
As Mum's illness advanced, it grew difficult to see my mother in the woman I cared for. Partly because she sometimes bore an uncharacteristic anger and could be rude. But mostly because her illness erased her memory. Where could I find her if not in our past? Brennan captures dozens of vignettes of others affected by dementia. These offer a well focused lens on what dementia looks and feels like.
I saw my own experience reflected often. When Susan describes the imperatives of keeping a log of her mother's dementia, I am reminded of the notes I kept to track meds, the diary I wrote that retrospectively served as a description of the disease's trajectory.
And I saw my mother there too: when Kay describes her distress at her daughter taking her wedding rings away for safekeeping – 'I feel sad when I look at my naked fingers' – I know that narrowing mum's with a plaster so that it wouldn't fall off a thinner finger, was the right thing to do.
Brennan explains the neuropsychiatric conditions that can present in dementia too.
Had I had this book to hand when Mum began exhibiting signs of 'sundowning' – nothing like as cheerful as a gin and tonic to celebrate sunset, rather a late-in-the-day distress that descends because the parts of the brain that manage a person's circadian clock are damaged in dementia – I might have been better prepared. When she began to suffer hallucinations, when she grew distressed at the messages she was convinced the television was broadcasting, I'd have known I was not alone from Bernadette's description of her mother's fears: 'TV and radio frightened my mother as she thought people on TV were in our home.'
A geriatrician once told me: 'A person with dementia may forget your name but they will never forget how you make them feel.' That's because the hippocampus – our memory vault for facts and faces – goes first in dementia. The amygdala – the bit of our brain that processes emotion – goes later; in the absence of remembering, a sufferer still feels.
Brennan's book is stuffed with practical tips from the imperatives of powers of attorney to the sensitive subject of sleeping arrangements if you're caring for your partner.
It also urges readers to try to live well in the face of dementia. This might seem an anomaly given the devastation this illness brings – and yet, here is testimony of those that manage it.
Like George, whose therapist helps him develop a system using photographs so that he can remember the names of his darts buddies and keep playing. And Helen, who was diagnosed with young-onset dementia at 61 then joined a research project with Brennan. She went from 'despair to being a pioneer in dementia advocacy… from 'worrier to warrior'.'
Dementia is a years-long decline. 'The shadows cast by this spectre can fool us into thinking that there is nothing in our lives but bleakness and loss,' writes Brennan. 'But that is not true.'
I think about this for a bit, and I know that in the fallout of my mother's illness there were bright moments of genuine pleasure for her – when she could still taste ice cream, still walk the dog, still enjoy the TV series Anne With An E (about Anne of Green Gables) on repeat – and real laughter for the both of us. Those are rare diamonds in the rough; seize them. Their value will help sustain you through the bleakness.
