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.
Cleopatra Chavis
saysCan someone give me a list of healthy foods for my 84 year old mother who has been battling dimensia for about 3 years? I’m not giving up on her. This story has given me HOPE for her. Thanks
P. Stubbings
saysThanks for your comment, P. Stubbings.
There is some evidence that eating a Mediterranean-style diet can reduce the risk of developing problems with memory and thinking, and getting some forms of dementia. For most people, following the Mediterranean diet is a good way to ensure a healthy diet, which may be important for maintaining good brain function. However, there is no cure for dementia.
Read more about the Mediterranean diet: https://www.alzheimers.org.uk/about-dementia/risk-factors-and-prevention/mediterranean-diet-and-dementia
As for coconut oil, there is currently a lack of evidence to show that coconut oil plays any role in preventing or treating dementia or its symptoms.
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
raquel
saysMs. T.M.
saysJaycee
saysSadly my mum ( AD sufferer since 2013 ) has not chance as she & my father of 90 have to survive on `wiltshire farm foods` & meals on wheels :-( IF ONLY I could do more -
Chris Lose
saysWhich prescription medicines is she taking?
Casi
saysAnother factor at play might be that she switched from a processed (packaged food) diet to a more whole foods diet, thus avoiding ingredients high in the free form of glutamate (e.g. maltodextrin, carrageenan, xanthan gum (actually all gums), yeast extract, msg, caramel color, and some more)...whole foods with high levels of glutamate like walnuts are not the same...that version of glutamate is bound to a protein and can't pass through the blood-brain barrier. The research is still pretty young on this, but more and more is showing a link with high levels of glutamate in the brain effecting it and the nervous system. I started experiencing early onset of dementia in my early 40's, along with fatigue and muscle weakness, and basically used my own body to test different theories on the cause. Cutting out those ingredients and supplementing with a methylated b complex vit., has my brain working better then ever. I don't know if high glutamate levels in the brain's blood is behind all dementia, but it's an easy enough test to run by going on a whole foods only diet (or packaged food that contains only real food ingredients) for a week to see if there's any improvement. I hope this info helps!
Joe
saysIn the urban areas of China, the percentage of the population with AD is 100%~300% higher than the percentage of the population with AD in the urban areas of Shanxi province. In contrast to the difference with AD, the consumption of Chinese vinegars per capita in Shanxi province is about 4kg per year, which doubles the national average.
In Shanxi province of China, with the population of 37.0235 millions, people love to have vinegars with their meals on a daily basis because of environmental and cultural reasons for thousands of years.
Ro
saysIs there any update on how Mark's mum is faring a year later?
Hazel pugh
saysI have put my husband on a strict diet plus turmeric and fish oil tablets. He cannot have conventional medicine because his heart rate is only 39. He seems to be stable but I am finding the change in his moods plus his denial of having Alzheimer’s very difficult.
Olivia
saysHi Mark
I've recently just come across this amazing story with your mum! I recently found out my 82 year old Nan (after having a urine infection) has now got Vascular Dementia, 4 weeks ago she was completely herself (better memory than me) and now she is someone I don't even recognise, it's so sad! This has given me a glimmer of hope that maybe I can improve her condition with a good diet! I know it doesn't work with everyone and everyone is different, but I've got my fingers crossed!!! Thanks for sharing your story!
Amanda
saysI have taken my mom off of the dementia medicine (her primary dr knows), and often give her the foods from this list. I can not say she’s cured, however her disposition improved and her good days outweigh the bad ones.
Yvonne
saysWell done Amanda. I have also introduced a good healthy diet to my mother and I have to say that it’s really helping her.
The drugs have limited effect. Alzheimer’s is multi faceted and requires a tailored approach I.e to target inflammation, toxins, stress, hormone imbalance etc.
Supplements are essential in my view. I will happily share if that would help you.
Best wishes
Jackie
saysPhilippa Perkins
saysI believe what you have done is simply marvellous.
Although there is no scientific proof, every little measure is moving you in the right direction.
From what I have read, a diet high in antioxidants is extremely beneficial.
Recently I have come across, Amla, the Indian Gooseberry Fruit, available as a dried powder. 1 teaspoon of powder adds 753 antioxidant units.
I am not sure if this is beneficial for preventive measures or a cure.
Worth a try ?
Steve
saysHi 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
Virginia
saysHi Steve,
Check out this site: https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/dr… and do a google search for mediterranean diet recipes. (That's not diet as in going on a diet, but what the meals would be). There is a lot of information about anti-inflammatory foods and Alzheimer's.
Also, one thing to consider, sauté in extra virgin olive oil rather than fry the veggies.
For example, tonight I made a baked sweet potato and topped it sautéd shiitake mushrooms, red pepper, garlic and some scallions for taste. Then I added walnuts and blueberries - and some blue cheese crumbles. It was quite tasty.
Another thing you can do is steam the vegetables and drizzle with olive oil or a balsamic vinegar.
Good luck,
Virginia
Dementia care home in bexhill
saysHello 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.
yvonne
saysI'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.
Gill Randall
saysThis 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?
Duncan
saysTotally agree...
Dolly
saysthumbs 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.
Alem
saysAs 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!
Beverley Croft
saysAbsolutely 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.
Christine
saysThis 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