One of the more cynical ways to deal with having MS is, of course, to think about worse things that you haven’t got. Motor Neurone Disease for example, which I imagine some of my fellow inmates in the waiting rooms of Queen’s Square find themselves facing up to. A more awful and frightening condition is hard to imagine. At least I don’t have that, I think, with a mindset approaching schadenfreude except without the fun bit. It is a consolation of a rather pyrrhic kind.
MND remains thankfully rare (maybe fewer than 5,000 cases in the UK) though I can’t say the same about another of our neurological stablemates – Alzheimer’s (pushing half a million at the last count and we’re all getting older). This greater prevalence brings a semi-familiarity with Alzheimer’s – we all sort of know what it is. It carries less immediate fear too – it is a disease that gets the old rather than the young. We’ll worry about it if we are lucky enough to make it that far; we’ll concentrate for now on making the most of our young, healthy selves. It is, as Andrea Gillies describes in Keeper, her extraordinary book on the subject, ‘something we’ll deal with later’.
But in Keeper, later has arrived. Not for Gillies herself but for her mother-in-law, Nancy. Gillies and her husband decide to take Nancy and her (increasingly frail) husband in, to care for her full time. And with a sense of commitment and optimism they move from Edinburgh to a big old house on the far coast of Scotland, a place whose beauty it is hoped will inspire and stimulate them all. But Alzheimer’s will have none of that, and over the course of 18 months that optimism is eroded by indignity, ingratitude, resignation and resentfulness. The book is an admission of failure, with Nancy and Morris finishing the story in residential care. But it is failure against some pretty forgiveable odds.
Keeper is a shocking and difficult book; constantly challenging you to look away. But beautiful too, and those that stay are rewarded by dramatic scenery, brilliant writing and passages of moving insight. The book is leavened too by the slapstick qualities of Alzheimer’s sufferers; vignettes which bring a deceptively endearing quality to the early stages of the disease. Asked to butter the sandwiches, Nancy butters the table. Helping put the shopping away she can’t find the cupboard. She tries the floor first, then pulls the chair from under the table and looks for it there.
But the switches between the funny and the heartbreaking are the defining cadence of the book; bringing you back to the science and the implacable progression of the disease. Alzheimer’s goes about its work and before too long Nancy is carrying her turds around the house, unable to make sense of what they are. Her increasing confusion and fear creates more frequent flashes of hostility and violence from which not even Gillies’s children (“the little bastards”) are spared.
It is a cruel and slow death, one characterised by confusion, unfamiliarity, anxiety, fear. A death carers are ‘handcuffed to and forced to watch’. A brutal contrast with a more elegant (and reassuring) portrayal of decline I recently found in Joseph Roth:
The infirmities of old age are a blessing. Forgetfulness, deafness and failing eyesight as we grow old, and a little confusion before death. The shadows it casts before it are cool and kindly.*
They are not. And they are expensive too, as support when it finally comes is through the means tested social services route rather than the NHS.
All assets count. Their savings, investments, all of it will be liquidated into a pot from which the state will drink hungrily. It will leach away, month by month until there is £20,000 left. Only at that point will the state begin to contribute.
And sitting above this financial cost is the emotional one of caring and failing. The relief and the guilt that come with that failure, and the placing (or ‘dumping’) of a parent in residential care. A parent, remember, not yourself. Still something we’ll deal with later, but perhaps not as far into the future as we might like to think.
*Joseph Roth, The Emperor’s Tomb (1938)