Mark'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 and his mother, Sylvia

Mark'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 a dementia 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 were 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 were weren't going without a fight.

Reaching breaking point

To say we had a challenging 12 months is an understatement. By far, it has been the worst 12 months of our lives. A never-ending round of medication and medical appointments that has seen my mother in 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?

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Taking action against dementia

We were both living a nightmare we couldn't wake up from. I lost four stone in weight and felt exhausted. I'd been trying to survive on three hours 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.'

Little by little, day by day, we managed to turn things round. It was no quick fix. We worked with our treating team and putting together an action plan (see below). It details a healthy diet with gentle physical and cognitive exercises.

I slowly got my mum back. Her memory is improving all the time. She is more alert and engaged. She is basically her old self again. And I am truly grateful for that and to all those who helped us.

Mark and Sylvia’s personal action plan for living well with dementia

1. Eat 'brain-nourishing' foods, such as: 

  • Berries, especially blueberries, blackberries and strawberries
  • Leafy green vegetables, spinach and kale
  • Sweet potatoes, carrots, swede, and more.

Learn more about eating well and the benefits of a Mediterranean diet.

2. Keep away from bad foods, such as:

  • Refined sugar and sugary drinks
  • Fried foods and 'fast food'
  • Pastries, cakes, sweets, and more.

Learn more about staying healthy.

3. Recommended activities, such as:

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.

Read daily living advice
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15 comments

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A 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.

What 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.

How much blueberry and walnuts should be consumed to get these benefits?

Hi 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.

No 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.

I 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.

This is a great story to read about .. our diet and healthy living plans need to be encourage . I believec( as a nurse of nearly 50yrs) that so much of our health problem are nutritionally related .. ( and the lack of exercise , fast pace of life and our food supplies are not always what they use to be . Going back to the least amount of eating processsed foods and more of the Mediterranean diet isxbetter )
I’m still working in the operating theatre with 10 hr days ( minimum !) and I believe I out run and last due to health habits I invested I over 20 yes ago .. I take nutritional products (Reliv) and invested in a medical device called a Kangen water machine. These are two of the best health investment I’ve ever made .. plus my diet and exercise . As an asthmatic since childhood , I’ve never felt better . My Gp can’t believe how little I visit her ... I’m blessed and wish everyone to be so too

This may not be a fix for everyone, but such an inspiring story that needs making public by journalists so fixed on giving us negatives stories in the press. Even if the advice given here helps only a few people, is it not worth us helping ourselves and all eating more like this to support our own health? What you describe, is mainly my diet, and we can all benefit from eating more healthily. Why do we have to wait until research proves what we know in our bodies?

Totally agree...

thumbs up Gill,
research is only research and due to politics, big bucks, grants and so on, some things never reach the drawing board. Our DNA and heredity may kick us off at any time, but it is our every right and freedom to invest in knowledge that may be just the right thing for us.

As the saying goes, let food be your medicine! I believe eating healthy plant based diet and using plant based supplements, you can enjoy life and be healthy. Our body can repair and heal, given the right balanced nutrition. Twenty years I have been med free and enjoy healthy lifestyle.
Great informatin, thank you for sharing your mom's story. Continued healing and Blessings!

Absolutely agree with you Gill, medical research is too narrow in focus and may be focussed on the answer the researcher wishes. The individual knows when the body has improved, we live in our body, we feel how it is and we need to share with one another. There is absolutely no harm in trying out healthy living for ourselves and make our own decisions.

I've taken my Mother to see an Homeopath and he is treating her with supplementation and has advised on diet and exercise. She is much improved and I urge you all to not give up - there are ways in which you can slow progression and help loved ones live a good life as much as possible.

Please please do your research - there are many things you can do and you should never just focus on one form of treatment.

Hello Mark
I am happy that your mum is getting well slowly. In Dementia people need more care and support. we have to take care of their healthy diet, clothes, daily routine work, and almost all small things. You did well with your mum and I hope she will be fine now.

Hi Mark. A very encouraging article. I am trying a similar diet with my mother who has Vascular dementia, but what I find tricky are finding ways of presenting these food types that make them appealing. I think it would be great to include some tasty recipes that can be followed. For example, how do you combine sweet potatoes, spinach and carrots to make them appealing without resorting to frying them e.g. veg curry? I know fried foods are not meant to be good. Also a lot of elderly people have gastric problems which mean spicy or fried food which includes onions and tomatoes ( which are acidic ) can cause stomach upsets. I cook a lot of whole meal spaghetti with cheese sauce and spinach as a vegetable, this seems to be popular, then blueberries and strawberries with yoghurt for dessert. I worry that this is high in dairy though. How did you manage to come up with appealing menus? Kind regards
Steve

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