Notebook: Unforgotten lives of dementia sufferers
I FOUND it in her attic. Hidden beneath a heavy blanket and behind some dusty sticks of furniture – an old wireless. Bulky and square, a wooden cabinet with a glass dial near the bottom on which are painted the names of stations and nations long defunct: BBC Light; BBC Third; USSR; Scottish Home. This radio would once have looked quite ordinary but has become beautiful as time has rendered it fragile. It does not work. Its valves are shot. I have the strong impression that if I could somehow switch it on, I would not hear the news or songs of 2013, but rather the headlines from the early 1950s, when the set was made, and when my grandmother, whose radio this is, was a young woman and did not have dementia.
But she does. She does have dementia. And so her conversation is often a broadcast from the past, fading in and out, sometimes lost in whine and hiss, sometimes clear and compelling. She can hold your attention with a story of family scandal from decades ago, even while telling the tale for the 20th time that morning.
I have been helping to look after her for almost a year now, since her son died. I do so because I love her and because I feel I owe it to my late father. Everyone, in a similar situation, will have their own reasons. I am one of 670,000 people in the UK who care for relatives and friends with dementia, and she is one of around 800,000 with the illness. It has been described as a “national crisis” and it is estimated that the number of people in Scotland with dementia will double from 86,000 over the next quarter century. The Scottish Government, beginning this month, has introduced a new system of named support workers who will tailor individual treatment for patients.
Dementia, the generic term for a range of conditions including Alzheimer’s disease, is the progressive loss of the powers of the brain; it can cause memory loss, changes of mood and personality, problems with communication and reasoning, and a resultant inability to take care of oneself. My gran is one of the 250,000 people, an “epidemic of loneliness” according to a new report, who have the illness and continue to live alone in their homes. She is a statistic, a figure in a column on a page, but she is also a person with her own unique wavelength and frequency. Even though her “now” is my “then”, I find that for both our sakes it is worth making the effort to tune in.
“The illness is devastating,” says Sharon Higgins of Alzheimer Scotland, the country’s leading dementia charity. “Families, I think, often feel broken. They don’t know where to turn. But people with dementia can live well. They are able to be part of society.”
Higgins is manager of Croftspar Place, a supported housing development for people with dementia, in Springboig in the east end of Glasgow. It is funded by the council. Each resident has their own apartment consisting of bedroom, kitchen and bathroom; they are encouraged to cook and clean and look after themselves as much as possible, as well as making accompanied trips to the local shops and elsewhere. The idea is that you retain the dignity and to an extent the independence of living in your own place, rather than a care home, while at the same time having the security, company and assistance of trained staff – not to mention regular visits from Higgins’ popular dog, Murphy, an amiable cockapoo with a taste for chocolate.
I visit Croftspar Place on a dreich Thursday. In such weather, the central garden does not see much use, residents preferring to stay indoors with old photos and the telly. There are eight flats, occupied at present by four men and four women. The oldest resident is about to turn 90 and speaks barely at all. The youngest is just 57, a reminder that dementia is by no means the preserve of the elderly; in Scotland, there are around 2,500 people under the age of 65 who have the illness.
“We’re like our own wee family here,” says Higgins. “They are loved. I know that’s a strong word, but to care for people you have to have that respect and love for them.”
Not all of those who live at Croftspar know that they have dementia; one of the most cruel – or arguably kindest – aspects of the condition is that it can rob a person of the knowledge that there is anything wrong with them. Others prefer to wave reality away with a breezy, “Och, my memory’s not great.” One chap, at the wind-up, uses his illness as an excuse to avoid chores. “Shall we do the dishes?” he’s asked. “No. I can’t. I’ve got dementia.”
I meet Annie first. Annie Hoggan is 84, though she admits to 21, and a right character – a wise-cracking vision in lilac cardy and gold jewellery. She’s from Springburn. Annie is something of a fantasist, and it is hard to tell, as she talks about her life, what is true and what is not. She is proud to consider herself a world-traveller, and to indulge this self-perception staff from Croftspar have taken her on trips to Blackpool and London. She used to live in a care home which she likens to Barlinnie. “I’m awfy easy scunnered, so I am.”
Annie worked as a cleaner in Tennent’s brewery and in the Black & White whisky bond, but eventually her superlative tea-making skills landed her a job in the chambers of a QC. As his secretary? “Are you kidding? His wee slave. When he died, I chucked it. I said, ‘Stick yer job where the monkeys stick their nuts,’ and I walked oot.” She has never been married – “too fly”. She likes to sing That’s Amore. She is formidable even in her frailty. “Right auld toerag,” is, for Annie, a term of wry affection, and she is a stern critic of the vocal abilities of others. “You want to hear this yin singing,” she says of a friend. “You’d think she was sellin’ coal.”
Talking to Annie is a fascinating and entertaining way to spend time. We, as a society and as individuals, are used to thinking of people with dementia as a burden, both financial and personal. But one could argue that they are, in fact, a national resource – a great library of history and anecdote.
One very nice old lady, Georgina Bell, who is 89, recalls picking hops as a child in Kent, the juices staining her hands; she would have been there at the same time as George Orwell, who wrote about hop-picking in A Clergyman’s Daughter. People with dementia may be unable to remember what happened ten minutes previously, but those memories which do remain are, often, recalled with brilliant clarity and precision, as if by a flash of lightning on a murky night.
There are times, of course, when failure of memory could be regarded as a blessing. I speak to one woman, aged 70, whose three sons are all dead, one of them murdered.
She kept the condolence cards up for a year, but now they are filed away in an album, and nobody thinks it would be a kindness to remind her of the blow she has suffered – it is one loss masking the pain of another.
Talk to the relatives of people with dementia and what you hear, sometimes, is that they feel bereaved – their mum or dad or husband or wife is still alive yet it feels as though they have lost them. They are tired of having to care for someone they just want to love. Yet you also hear something else – that although it is hard, although it is often drudgery and frustration, it is also a privilege to hold someone else’s memories for them, like a keepsake, a posy, and to hand them back one petal at a time.
I speak, finally, to Henry Rankin. He is 60, a retired police officer, and in 2008 was diagnosed with vascular dementia, a form of the illness caused by problems in the supply of blood to the brain. He and his wife of 37 years live in Clarkston, south of Glasgow. Unlike the residents of Croftspar Place, his symptoms are still mild enough to allow him to reflect on his illness.
When he was first diagnosed, by a psychiatrist, he felt that his life was over. He burst into tears. He felt, in the first few weeks of knowing, a collapse of confidence and sense of shame – he didn’t want to go to the shop for the papers, or to his bowling club, for fear that he would forget the names of people he knew. Now, though, with the help of Alzheimer Scotland and the support of his close family, he has learned to live for today, to enjoy his life, and not to be frightened of the future. He knows that he will continue to forget things but hopes that he will always remember and recognise his wife and three grown children.
“Dementia doesn’t stop you learning new things,” Henry says, and to prove it reaches into his jacket for a poem that he and his daughter Kirsty made up together. It’s called, he says, Forget Me Not.
“Forget me not the way I used to be,” it begins. “For that person inside is still only me/I’m still the person who held your hand/And drew ‘I love you’ on the sand.”