Meera Syal: When Dad mistook me for Mum, I played along not to upset him

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a day ago

The fact that there isn't even a word in the Punjabi language that means 'dementia' says a lot about the stigma and ignorance surrounding the disease in Indian communities. And yet ironically, incidences of Alzheimer's are much higher in minority ethnicgroups compared to white people. So as a group, we are actually more at risk – and yet we know less.
In Asian communities, when signs of memory loss are apparent, it's often just dismissed as old age: 'They're forgetful,' people say. Or 'their minds are going.' But actually there's a huge difference between just age-appropriate forgetfulness and signs of this critical disease. My father, Surendra, really was the most wonderful dad – very loving, playful, sociable, and he adored music. Our house in Walsall, where I grew up, was always full of people singing.
Originally a philosophy graduate, Dad worked as an accountant for years in order to provide for our family, my mum Surinder, me and my brother Rajeev, who is seven years younger than me. He was a very bright man who had endured great hardship as a refugee from the partition in 1947, when the British government withdrew from India.
Dad's entire family had to abandon their home and flee across the border, so he started from literally nothing and became a self-made man. I'm sure all the stresses he'd suffered going through immigration – and then adaptation – made him more vulnerable to Alzheimer's eventually.
It wasn't until 2012 when it became clear to me that Dad wasn't himself. By then I'd long been living in London, as a writer and actor and with two children of my own. Mum had known Dad was unwell for some time, but she had been coping on her own, silently soldiering on for a couple of years before we knew. It started with forgetting where he was driving, the familiar routes he'd taken for years seemed lost.
Then in crept a level of paranoia, he became suspicious of even friends he'd known for years. Some days he'd momentarily forget my Mum. Worried, Mum had taken him to the memory clinic several times, but Dad just kept passing the tests, 'maybe because he was having a good day,' she admitted in hindsight. Later, we found out those tests aren't immensely accurate for diagnosing certain different forms of dementia, and actually the only way you can tell is by having a brain scan.
In reality, trying to get a brain scan on the NHS is a long and torturous process. You really have to stand your ground and say 'I know something's wrong – and yes he may have passed the memory test – but I know that something is not right.'
Ultimately, it was two or three years before Dad's diagnosis was confirmed. That was a long time for my mother to be struggling alone. It must have been isolating. And in that time he could have been taking medication that might have at least been able to help manage his symptoms. Early diagnosis is so crucial.
By 2012, Mum could no longer hide it from us or anyone in the wider community. Intervention was needed. Initially we arranged for a carer to come to their home, but that didn't go well as Dad didn't trust them. He didn't want them in the house. And then he kept leaving the house, which meant we had to have security locks fitted to try and keep him safe. He was always restless, and this agitation was hard to live with.
Then he became a security risk. One of the cruellest things about this disease is how it affects people's personalities. Becoming ruder or cruder is common with certain types of dementia. Everyone is different so it's impossible to predict. Some people can becalm and vacant, while others become very verbose and front-footed.
While Dad was never aggressive, the paranoia was hard, and it was painful when he started insisting Mum had been replaced by a stranger. At that stage we realised we couldn't cope at home, not with Dad escaping, and Mum not being able to keep him safe.
For me the worst part was this intermediate stage, when the disease came in and out, because there were times when Dad was completely lucid and cogent and wanted to know what was happening, when he knew something was wrong. This is when families really need support from places like the Alzheimer's Society, because how do you know how to have that conversation with a loved one who is confused and frightened? How do you say the right thing? They have trained, experienced people who can advise you on those difficult talks.
What I learnt was that one of the biggest mistakes people make – quite understandably – is trying to correct someone when they are in their own version of reality. Saying to them things like 'No, that's not right' or 'you did that yesterday, remember?' actually distresses a loved one more, because they're coping with two or three different realities in their heads. Instead, it's better to enter into their world with them, even if that means playing along that you are their long-lost friend.
Dad would often think I was my mother when she was younger, instead of his daughter. So I'd go along with that as it calmed and reassured him. That has to be the aim. Sometimes, five minutes later after he'd stopped being distressed, he'd find his own way back and know who I was.
I came to believe that actually, there are many different kinds of reality in life. I mean, how do we know who's in the right one? Him or me? It becomes quite a Matrix kind of question! I had to open my mind a little bit to try and find the understanding and compassion – and go with whatever he was giving me.
When a loved one has dementia it's a long, slow goodbye. You're losing them bit by bit. It's like a little light going off gradually, or a mechanism winding down. You become the parent, not the daughter. While that is certainly awful, there can be many moments of joy along the way, when the light is still on.
For Dad, the thing that never left him until the very end, was his passion for music. He loved ghazals, Indian poetry and ballads, which we played and he would sing along. We also put old films from the 1950s and 60s from his youth on the iPad, essentially making our own memory pack for him. Photographs and anything that keeps the memories and the connections going is useful. Dad always had a great sense of humour, so we tried to make him laugh, and be upbeat.
Mum visited my dad in the care home every single day and they had a routine, where they'd practise throwing and catching a ball (to keep up his motor skills) and then look at old photos together. You find your own ways of connecting, but the Alzheimer's Society is an amazing resource of information and advice, and through the Dementia Friends network, we found incredible volunteers who would even offer to give relatives a break by sitting and talking to your loved one.
Dad was in the care home for six years, so it became the new normal in some ways. You learn to live with the upset, but I hated that in their golden years, when they should have been growing old together, they were separated, with Dad remaining in the home until he died in 2018.
When I remember my Papa, I don't try to forget his illness; you can't, it's part of the journey we all had together. I just hope we did everything we could to make his quality of life as good as we could in those last years. You reach a stage where it's actually worse for the family than it is for the person with the disease, because they're in their own world.
I took advice about genetic testing, but looking at the rest of my family history, it's highly unlikely to be genetic. There's no history of dementia on my father's side, his older brother is still alive and well, his own father died in his mid-nineties unaffected by dementia. My mother's own mum died at the grand age of 103 (in India!) and she has sisters who are still alive with all their faculties.
Losing my parents has made me more health conscious. I'm alert to the increased risks in South Asians of hypertension, obesity, diabetes, and cardiovascular health. And actually there's now more awareness of the massive link between gum disease and Alzheimer's. My father suffered with terrible gums for many, many years.
The older I get I take better care of myself, watching my cholesterol levels and cardiovascular health and I regularly exercise and look after my gums with hygienist appointments three times a year. I can't change my genetic hand down, but I can try my best with my lifestyle to try and prevent my kids going through this with me one day.
As told to Susanna Galton
Meera Syal CBE is an Ambassador for Alzheimer's Society and is supporting the charity's appeal. Donate at alzheimers.org.uk/telegraph
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