Real stories

Mark's Alzheimer's story: 'We were living a nightmare we couldn't wake up from.'

Following Sylvia's diagnosis of Alzheimer's disease, she and her son Mark resolved not to take it lying down. Together, they devised an action plan with recommended foods and activities to help Sylvia live well with dementia. Learn more about their emotional journey.

​

Mark's Alzheimer's story

Alzheimer's disease doesn't care who you are. It doesn't care who you used to be or even who you might have become. To be blunt, it spits on you. We decided to fight back, and so can you.

Overnight we went from being a happy family to a family in crisis. Alzheimer's was consuming our every moment and we had to fight back before it was too late.

My name is Mark. I am 50 years old. I live with my 82-year-old mother, Sylvia. We lost my father and my brother years ago. We don't have any other family, so we have always been close.

We went everywhere together. Just like a double-act, we were rarely seen out without each other. We are not just a mother and son, but a brother and sister, best friends, soul mates.

Receiving an Alzheimer's diagnosis

Alzheimer's caught up with us in December 2016. My mum was diagnosed with multifactorial Alzheimer's disease. This also triggered epileptic fits.

Our treating team was great and did their very best for us. But my Mum was succumbing fast to this debilitating disease. It felt like we were trapped by an incoming tide and there was no way out.

The doctors prescribed various medications. The problem was the medication only slowed down the degeneration. It was unlikely to stop it or reverse it. My mum was already on more than her fair share of medication for other ailments.

We decided to embark on some research to see if there was any merit in trying alternative treatments. You know the sort of thing, vitamin supplements, a healthy diet and exercise, etc.

Our dementia adviser was our initial point of contact and kindly provided us with a load of help and support. I got hold of various books written by experts. I spent many late nights trawling the internet for remedies to help my mum.

We both decided we weren't going to take this lying down and, if we were going down, we weren't going without a fight.

Reaching breaking point

To say we had a challenging 12 months is an understatement. By far, it had been the worst 12 months of our lives. A never-ending round of medication and medical appointments that had seen my mother in the hospital for a total of three months. I had been at her bedside for 12 hours a day and more. Sometimes my mum didn't know who I was or where she was.

The lowest point was being summoned to the hospital in the early hours.

I was told my mum had tried to phone the police, alleging she had been kidnapped and was being held against her will. Another time, she was causing chaos on the ward by complaining loudly that this was the worst hotel she had ever stayed in. She declared to never again patronise this establishment. (It wasn't amusing at the time!)

The senior nurse asked me if I would consent to my mother being detained under the Mental Health Act, for her own safety.

How much worse could it get?

Taking action against dementia

We were both living a nightmare we couldn't wake up from. I lost four stones in weight and felt exhausted. I'd been trying to survive on three hours of sleep a night and hold down a job.

I kept reminding myself of that famous quote by Winston Churchill, 'If you are going through hell, keep going.'

We worked with our treating team and put together a bespoke action plan that included eating well, regular walking, socialising, memory games and more.

Little by little, day by day, we managed to turn things round. It was no quick fix. And I am truly grateful for that and to all those who helped us.

Adopting a healthy lifestyle can help people with dementia to manage their symptoms, but there is no strong evidence that these steps will slow or stop the underlying diseases that cause dementia.