Dementia news: Child never told mother about dementia diagnosis

By Tim Coles

According to my mother’s death certificate, she died last year at the age of almost 94 from a respiratory infection dementia. Although I did wonder if dementia really had something to do with it. One thing is certain: Mom had been diagnosed with Alzheimer’s almost twenty years earlier, but she never knew it. I never told her; her doctors and nurses, hearing specialists, eye consultants and, lately, nursing home staff, not to mention friends and family, all played ball.

Although I have not met anyone else who has taken this approach, I am confident that it was the right one for my mother, Freddi. In fact, I wonder if politicians and doctors’ continued refrain from early detection is a solution dementia The diagnosis should be accompanied by a warning that knowledge is not always useful if there is no cure. Many factors, from age to genetics, determine the rate at which dementia progresses, but I personally believe that one of the reasons Mom did not suffer the decline that would normally be expected was that she was spared the stress of knowing about her diagnosis.

Knowing her anxious nature and habit of dwelling on negative things, as well as comments she had made before, I was convinced that knowing her diagnosis would have been an unbearable emotional blow. When I had mistakenly been led to believe 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 placed in a care home, my mother’s reaction was a combination of horror and denial, not helped by my aunt’s subsequent rapid decline.

Watch the video above

Make no mistake: it wasn’t easy keeping Mom in the dark. It took a constant commitment to intervene in time to prevent health workers and authorities from using the terrible D-word in her presence. I also had to come up with compelling reasons for medications, because I don’t advocate avoiding treatments if there’s a chance they might help.

My mother knew she had memory problems. She did indeed receive a visit from the memory clinic. I assured her that this was normal for the elderly. When she was prescribed donepezil, which helps with certain types of dementia, I told her it would help her memory, in the same way as the various supplements she had been taking on her own for years. As time went on, she started laughing, and we all laughed with her when she forgot things.

In the same way that dementia may have been lazily cited as the main cause of my mother’s death, there is also a tendency to attribute any change in an older person’s behavior to the condition. At one point, Mom started having hallucinations. She saw cows in her garden, creepy crawlies in her kitchen and maggots in her food.

These were initially thought to be the result of dementia with Lewy bodies, but in reality they were caused by a urinary tract infection, which quickly cleared up with a simple antibiotic. Her diagnosis of Alzheimer’s only came about after I quietly expressed my concerns to the doctor about her increasing forgetfulness, intolerance and anxiety in recent months.

READ MORE: ‘The average Australian wedding costs almost $40,000. As a bride of 2026, I refused to spend that much.”

READ MORE: ‘I met a Hemsworth and I didn’t expect this’

READ MORE: She was just Mary’: Queen’s unprecedented leading role during historic Australian royal tour

Similarly, many years after that diagnosis, when Mom, then 88, returned home after a weeks-long hospital stay following a hip replacement and an unexpected surgery for a stomach perforation that left her in intensive care for two days, she became so anxious that she could not be left alone. Neighbors and family blamed dementia and insisted she go to a nursing home.

Scared by her sister’s experiences, Mom had made me promise that I would never force her to leave her own home. Under intense pressure from all sides and desperate at the thought of abandoning her, I turned to 24-hour care, but I knew this was unsustainable in the long term.

Then, in a roundabout way that I still consider miraculous to this day, 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, yet incredibly gentle and empathetic. He diagnosed acute delirium and prescribed mirtazapine (later to be combined with sertraline). Although this drug is often used for depression, he assured me that in my mother’s case it would reduce her anxiety, increase her appetite and help her sleep. I picked up the prescription at the surgery the next day and within a remarkably short time he was proven right. Mom was happy to be alone again.

For a daily dose of 9honey, subscribe to our newsletter here.

The most outrageous vintage parenting advice

My determination to support my mother in living in her own home was by no means without challenges. She walked her beloved chocolate Labrador, Millie, twice a day, rain or shine, occasionally forgetting the way home. Everything that went wrong led to a chorus of calls to place her in a nursing home. Instead, with the help of an extremely supportive girlfriend and the fact that I worked for myself, I made sure I was constantly available. We were also fortunate that Mom was regularly visited by an older lady and a young girl from her village.

Navigating Covid Restrictions

Covid came and we ignored every ridiculous rule. Neither of us have ever worn a useless mask – communicating properly with your face covered is a bit difficult at the best of times, let alone when one of you has Alzheimer’s and is hard of hearing. Although some tried, no one could stop me from accompanying my mother to the hospital or to medical appointments. It was important to me that she had support and that I could be assured that the awful D-word was never used. This was my mother, but the nurses thanked me profusely for being there for her.

My experiences with Mom were often difficult, sometimes disturbing, but no less rewarding. My overriding childhood memory of my mother is of an authoritarian who did not tolerate dissent and who would start the most heated arguments with my father, Jeremy, every month, often leaving him in tears and my brothers and I shaking at the top of the stairs. Yet in her final years she had softened and become incredibly loving.

Even after I left home, I still thought Mom was quite cold and selfish, but she had become warm and attentive. In turn, because patience was not always one of my virtues, I have become a better person and am grateful for the resilience and strength it takes to go against the crowd, to resist the easy way out and so probably do the right thing in the end.

I was unable to build a good relationship with my father before he died at the age of 63, after multiple strokes that left him in a wheelchair and unable to speak. I’m grateful that I had the opportunity to perhaps make up for that by building a strong, loving relationship with Mom while caring for her as best I can.

Mom moving to a nursing home

Finally, when she was almost 92, Mum moved to a care home in north Buckinghamshire, less than fifteen minutes from my village in Bedfordshire, in the middle of the countryside she loved. Initially it was to recover from another hospital visit, but she decided to stay of her own accord after the owner of the house agreed to her ever-faithful canine companion Millie coming to live with her – there were no other pets there, although the old neighboring farm Labrador had found its own way there every day. The residents seemed to enjoy having animals in their midst.

The staff did not wear uniforms and acted like friends to Mom. Her determination to live independently for so long meant that the costs 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 Mom never really showed the devastating changes commonly associated with dementia. It’s true that once she was told that a priest was coming to see her, she thought it was the police, but that was more due to her hearing than her mind, and she found the mistake as funny as we did. When that same sweet priest who had brought her regular 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 next night.

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

Yes, she was occasionally confused and her concentration waned, but her smile rarely left her face. She was extremely grateful, laughed every day and was a boost to those around her. And I’m so glad she was never told she had Alzheimer’s.

© Telegraph Media Group Limited 2025

FOLLOW US HERE ON WHATSAPP: Stay updated with the latest celebrity news, lifestyle and opinions through our WhatsApp channel. No comments, no algorithm and no one can see your private data.