'I never told my mother she had dementia. She lived with it for 20 years'

By Tim Coles

According to my mother's death certificate, she died last year aged nearly 94 of a respiratory tract infection – and dementia. Though I did wonder if dementia really had anything to do with it. One thing's for sure: Mum had been diagnosed with Alzheimer's nigh on 20 years before, yet she never knew. I never told her; her doctors and nurses, hearing specialists, eye consultants and, latterly, care home staff, not to mention friends and family, all played ball too.

Despite not having met anyone else who has taken this approach, I'm sure that for my mother, Freddi, it was the right one. In fact I wonder whether the constant refrain from politicians and medics to seek an early dementia diagnosis should be accompanied by a warning that knowledge is not always beneficial in the absence of a cure. Many factors, from age to genetics, dictate the speed at which dementia progresses, but it's my personal belief that one of the reasons Mum didn't suffer the decline that would normally be expected was because she was spared the stress of being aware of her diagnosis.

I was convinced, from knowing her anxious nature and how she was wont to dwell on negatives, as well as from comments that she had made before, that knowing her diagnosis would have been an unbearable emotional blow. When I had got it into my head, wrongly, that my father had Alzheimer's shortly before he died 35 years ago, she had been surprisingly vehement that he had no such thing; when her sister was diagnosed with the disease and put into a care home, my mother's reaction was a combination of horror and denial, not helped by my aunt's subsequent rapid decline.

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Make no mistake, it was not easy to keep Mum in the dark. It took a constant commitment to make timely interventions to prevent health professionals and authorities from using the dreadful D-word in her presence. I also had to come up with convincing reasons for medications, because I'm not advocating eschewing treatment if there is a chance it may help.

Mum knew she had memory problems. Indeed, she had visits from the memory clinic. I assured her that, for elderly people, that was normal. When she was prescribed donepezil, which helps with certain types of dementia, I told her it was to aid her memory in the same way as various supplements she had taken of her own accord for years. As time went on, she laughed, and we all laughed with her, when she forgot things.

In the same way that dementia was lazily, perhaps, given as a main cause of my mother's death, there's also a tendency to put every change in an elderly person's behaviour down to the condition. At one point Mum suffered hallucinations. She saw cows in her garden, creepy crawlies in her kitchen and maggots in her food.

These were initially thought to be due to dementia with Lewy bodies, but they were in fact caused by a urinary tract infection, which a simple antibiotic quickly cured. Her diagnosis of Alzheimer's only came about after I subsequently quietly raised concerns with the doctor about her increasing forgetfulness, intolerance and anxiety over the previous few months.

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Similarly, many years after that diagnosis, on returning home from weeks in hospital following a hip replacement and an unexpected operation for a stomach perforation that left her in intensive care for two days, Mum, then 88, became so anxious that she could not be left alone. Neighbours and family blamed dementia and insisted that she go into a care home.

Scarred by her sister's experiences, Mum had made me promise that I would never force her to leave her own home. Under intense pressure from all sides and distraught at the thought of letting her down, I brought in 24-hour care, yet I knew this to be unsustainable in the long term.

Then, through a roundabout route that to this day I see as miraculous, I came across a mental health nurse and arranged to meet him at my mother's bungalow. A big bull of a man with a booming voice to match he was, nonetheless, incredibly gentle and empathetic. He diagnosed acute delirium and prescribed mirtazapine (later to be combined with sertraline). Though this drug is commonly used for depression, he assured me that, in Mum's case, it would curb her anxiety, increase her appetite and help her sleep. I picked up the prescription from the surgery the following day and, within a remarkably short time, he was proved right. Mum was happy to be by herself again.

My determination to support Mum in living in her own home was not without its challenges, by any means. She walked her beloved chocolate Labrador, Millie, twice a day, come rain or shine, and occasionally forgot her way home. Anything that went wrong led to a chorus of calls for her to be put into a care home. Instead, aided by an extremely supportive girlfriend and the fact that I worked for myself, I made sure that I was constantly on call. We were also lucky that Mum received regular visits from an older lady and a young girl in her village.

Navigating Covid restrictions

Covid came and we flouted every ridiculous rule. Neither of us ever wore a useless mask – communicating properly with your face covered is a tad difficult at the best of times, let alone if one of you has Alzheimer's and is hard of hearing. Though some tried, no one was able to stop me accompanying Mum to hospital or to medical appointments. I felt it was important that she had support, and to be sure that the awful D-word was never used. This was my mother, yet nurses thanked me profusely for being there for her.

Often difficult, sometimes distressing, my experiences with Mum were no less rewarding. My overriding childhood memory of my mother is of an authoritarian who brooked no dissent and who, each month, started the most almighty rows with my father, Jeremy, which often left him in tears and my brothers and me shaking at the top of the stairs. Yet, in her final years, she had softened and become incredibly loving.

Even after I'd left home, I still thought of Mum as rather cold and selfish, but she had become warm and considerate. With patience not having always been one of my virtues, I, in turn had, become a better person and am grateful for the resilience and strength needed to go against the crowd, to resist taking the easy way out and, thus, to probably end up doing the right thing.

I had failed to forge much of a relationship with Dad before he died at just 63, following multiple strokes that had left him in a wheelchair, unable to speak. I'm thankful for having been given the opportunity to perhaps make up for that by building a strong, loving relationship with Mum, while looking after her as best I could.

Moving Mum into a care home

Eventually, when she was nearly 92, Mum moved into a care home in north Buckinghamshire, not 15 minutes from my Bedfordshire village, in the middle of the countryside that she loved. At first, it was to recuperate following another hospital visit, but she decided to stay of her own accord after the owner of the home agreed to allow her ever-faithful canine companion Millie to live with her – there were no other pets there, though the old, neighbouring farm Labrador had taken to making its own way over every day. The residents seemed to love having animals in their midst.

The staff didn't wear uniforms and acted like friends to Mum. Her hitherto determination to live independently for so long meant that the fees were covered by the proceeds from the sale of her bungalow. My brothers and other members of the family visited her, and she never forgot a face or, in the case of those closest to her, a name.

We feel extremely fortunate that Mum never really exhibited the devastating changes that are commonly associated with dementia. True, once when she was told that a priest had come to see her, she thought it was the police, but that was more about her hearing than her mind, and she found the mistake just as funny as we did. When that same lovely priest, who had regularly brought her communion, gave her the last rites in her room, she perked up and recited every word of the Lord's Prayer. She died peacefully the following night.

At least three times a week, until shortly before she died, we sat down together to The Telegraph crossword. We would wander slowly to see the sheep, the cows and the horses in the surrounding fields, with Mum always asking about my two boys and being interested in hearing about other members of the family, as well as what was happening in the news.

Yes, she was occasionally confused and her concentration declined, but her smile rarely left her face. She was extraordinarily appreciative, laughed every day and was a tonic to those around her. And I'm so glad that she was never told that she had Alzheimer's.

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