Dementia Support Line
Real stories
Mark's Alzheimer's story: 'We were living a nightmare we couldn't wake up from.'
We hear from Mark about the struggles he and his mother, Sylvia, faced following her diagnosis of Alzheimer's disease.
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.
Daily living
Discover important information and practical advice about daily living for those living with dementia and carers.
Dan Richards
saysHow much blueberry and walnuts should be consumed to get these benefits?
Alzheimer's Society
saysHi Dan, thanks for your comment. Unfortunately this is not a straightforward issue. Although it is great to see that Mark’s mother’s symptoms improved, this is just one case and there have been a large number of scientific studies that have looked at whether diet can be used to treat dementia. So far there is no clear answer on this, at best, a healthy balanced diet low in alcohol and fat – such as the Mediterranean diet coupled with exercise and mental stimulation, does seem to make symptoms more manageable day to day. We cannot in good conscience recommend particular recipes or foods as a cure for dementia without sound scientific evidence.
Duncan
saysNo obviously you cannot say it will definitely help everybody, it depends how advanced their condition is. But it is imperative that such information is passed around so that it becomes common knowledge, that diet DOES and CAN have an impact, that sugar and processed foods are not healthy. With an ageing population and many not keen on taking medication that has not been proven to work for people with Alzheimer's, I do believe it is your duty to
publicise this case.
Dolly
saysI totally agree. What may help one, may not be the chicken soup for another. Could have been dementia from an unknown etiology as well. Many things can play into her symptoms and her regaining health too.
He did say she was on many other medications at the time as well.
We owe it to the public to give hope and information to all, so that they themselves CAN and DO take an active part in their own healthcare. We are not gods because we have alphabet soup behind our names. We are the assistant to many different physiological processes of each person, of which no 2 are completely the same. Thanks for sharing.
Anita McCormick
saysWell said Duncan, every step in the right direction should be encouraged and recommended. If we werent poisoned by the toxic chemicals in our food, drink, overload of useless dangerous vaccines and environment, we would be far less likely to contract alzeimers to begin with. What we put into our bodies is crucial. Good luck to you and your mum Mark and look into supplementation too especially the b vitamins and huperzine A, choline and similar which may help too.
P. Stubbings
saysThanks for your comment, P. Stubbings.
There is currently a lack of evidence to show that coconut oil plays any role in preventing or treating dementia or its symptoms.
There have been some claims that coconut oil could be used as a treatment, or even a cure, for Alzheimer's disease. However, there is not enough experimental evidence to back up these claims.
Read more about coconut oil and dementia: https://www.alzheimers.org.uk/about-dementia/treatments/alternative-therapies/coconut-oil-and-dementia
If you are based in the UK, we'd recommend speaking with one of our advisers to get more information on dementia. Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times, and other methods of contact, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line)
We hope this is useful.
Alzheimer's Society blog team
Clive Kirkman.
saysWhat an inspiring and wonderful that after so much confusion by pure determination these 2 people manage to turn things round and bring some sanity into their lives. Any these forms of dermentia can make life a living hell for all involved but the main thing is that remember you are not alone and ask for help. It is there and if it is not good enough do be frightened to complain in a nice way. We have to stand up and be counted for the good of everyone.
Clive Kirkman.
saysA lot of useful advice there. Some l was aware and it is good to reminded and information l was not aware of. Well doe whoever posted that.