'You have alzheimer's…' What it's really like to hear those words

Anita Goundry, 55, from Co Durham hit rock bottom after a diagnosis of Alzheimer’s and Vascular Dementia – but went on to find love with new husband Gary.

Here, she shares her story with Metro.

‘I was in my early forties and doing what I loved best – riding my motorbike with the wind in my face and breathtaking scenery around me – when my life suddenly came crashing down in every sense of the word.

It all seemed to happen in slow motion and I remember it still so clearly. I was on my way back from a blissful day out riding, and reached Barnard Castle in Co Durham when I came to a corner, and I literally couldn’t remember how to turn the motorbike.

I lost my balance and fell off – breaking my shoulder, and fracturing my arm and hip.

At the hospital, I brushed it aside as a sudden attack of vertigo, but in truth this was the first sign that something was wrong.

Slowly other symptoms appeared: mood swings, losing my balance and forgetfulness such as checking the doors every five minutes in case I hadn’t locked them, and forgetting I had put the oven on – even starting a few house fires.

Meanwhile I had several accidents on my pushbike too because I’d forget to put my feet down when I stopped, and I’d fall over sideways.

…the doctor put my symptoms down to stress, anxiety, depression and finally the menopause…

Having retrained in my forties as a social worker, I loved my job but I became defensive and snappy. I also started getting lost, and once jumped on a National Express Coach for a day trip to Andover.

We stopped at a services, and I went into the loo, came back and jumped back on the coach. When we finally arrived, I didn’t recognise anywhere.

I stopped someone and asked where I was, and they said ‘Penzance.’ I asked ‘Where’s that?’ I had climbed onto the wrong coach without realising and it took me two days to get back home.

I went to the GP when I was 44, because I was so scared – but the doctor put my symptoms down to stress, anxiety, depression and finally the menopause. I was even dismissed as a hysterical hypochondriac.

In the end I was saved – literally – by a stroke which happened as I shopped in Asda in 2021.

I suddenly felt my left side go numb, and my face fell and my then partner David raced me to hospital.

What not to do if someone has dementia – Anita’s guide

Don’t be impatient: Just because it takes them a while to find the right words, don’t fill those words in for them.

Instead, let them think about it and give them time to express what they want to say. They are impatient and frustrated themselves, so if you tut or look visibly irritated, it just makes matters worse.

Never walk behind them and startle them: A surprise like this can send someone with dementia into psychosis or could build their paranoia.

If you place your hand on their shoulder, they can turn around and hit you as an automatic response.

When David did this to me, my natural reaction was to punch him but I really hadn’t meant to.

Don’t be patronising: Most people and even doctors talk to the carer rather than the patient. Often a doctor will ask Gary ‘Is she taking her medication?’ or ‘How’s she been this week’ while I am sitting there.

Don’t react with far: I’m always very open about my diagnosis and I tell people as soon as we’re introduced.

There are two reactions, either someone who is interested and accepting – or someone who runs away as if they are going to catch it. There’s nothing to fear here.

There, they did brain scans and found the stroke. But the scans also revealed early onset Alzheimer’s and Vascular dementia.

The news caught me completely unawares. I was sitting in my kitchen with David when the phone rang. The GP said ‘Your scans have come back, the neurologist has looked at them and you have Alzheimer’s and Vascular Dementia. If you need to talk about this, make an appointment.’

That was it – my life had fallen apart, and I was in total shock.

The initial sense of relief was brilliant – I finally had an explanation for how I’d been feeling for all these years. But then you’re slapped with the reality of ‘I’ve got a brain disease.’ All these fears were racing around my head. ‘I’m going to lose me, I’m going to be gaga, I can’t have it because I’m too young’.

It’s a whirlpool of fear and you’re sinking and spiralling out of control.

I finally got into the memory clinic to see a the neurologist and consultant, and I was shown the scans and handed Do Not Resucitate forms, power of attorney, a pack to make my will and a prescription for medication. I reeled out of the appointment, and David just happened to grab some leaflets sitting on the table outside.

The next two weeks were horrendous, as I fell into such a deep depression that I planned my own suicide. I was going to do it in Leeds, where I had many happy memories, but as I worked out how to end things I picked one of the leaflets up that David had found at the clinic. It had the Alzheimer’s Society helpline number. I dialled them, and they saved my life.

A wonderful volunteer listened to me as I told her I was going to end my life. I was sobbing so much I was incoherent. She kept me on the phone, but got a local mental health crisis team together and within the hour, they were at my door. I was given a social worker, mental health support and medication.

Alzheimer’s Society helped me realise that when you get the diagnosis you go through a grieving process because you’re grieving the ‘old’ you – but remember, you can make a ‘new’ you.

It’ll never be the same but it can be better than before and just as good in a different way.

Mental Health Support Is Available

For emotional support you can call the Samaritans 24-hour helpline on 116 123, email [email protected], visit a Samaritans branch in person or go to the Samaritans website.

If you’re a young person, or concerned about a young person, you can also contact PAPYRUS Prevention of Young Suicide UK.

Their HOPELINK digital support platform is open 24/7, or you can call 0800 068 4141, text 07860039967 or email: [email protected] between the hours of 9am and midnight.

Be positive, join clubs, campaign and keep active. I even fell in love again. I was at a friend’s birthday on 4 September 2021 and we went to our local pub.

I sat on a bar stools but fell into a man’s lap. I apologised, he bought me a drink and I even told him I had Alzheimer’s. I said ‘I’ll most probably forget your name,’ and he just smiled and said ‘I’ll keep reminding you.’

Gary is 52, he’s a warehouse manager and three weeks ago, in a wonderful registry wedding, he became my husband. The registrar said she’d never seen such a happy bride.

My son Harley and daughter Megan were by my side. My mood swings really affected my relationship with Megan when she was a teenager, but my diagnosis got me my daughter back again.

I cope now with forgetfulness by having lots of smoke alarms, in case I leave something in the oven, and having a diary, a filofax, a laptop, phone and a chalkboard.

If I do forget things or burn the supper, Gary makes me laugh again. I once feared my diagnosis would mean I’d be alone but now I know just how loved I really am.

The real faces of dementia

A couple in their 80s sitting in a tattoo parlour, having matching love hearts inked onto their arms.

The family who celebrate Christmas every day – with a freezer full of turkeys – because Dad thinks it’s 25 December. The little boy who tells his Mummy that Daddy is ‘broken’ – as she continues to raise him alone. The son who realises something is wrong when his father keeps ordering pork pies.

The motorbike lover who suddenly can’t turn the handlebars. The nurse who heartbreakingly diagnosis her own symptoms. The scientist who has devoted his life to helping them all.

Meet Ron and Sheila, Jules, Caroline and Mark, Grant, Anita, Fran and Tim. They are the real faces of Alzheimer’s and dementia – loving couples and families who know only too well that grief for an old life can make way for a new one you never planned. They know the love, the laughter, the compassion and the fear of facing Alzheimer’s and dementia – the UK’s biggest killer.

This week and next, Metro brings you the truly inspirational stories of how they have coped, how they have laughed as well as wept and how the Alzheimer’s Society has provided them and their loved ones with vital support.

Alzheimer’s and dementia: the facts

The most common forms of dementia (symptoms of a decline in brain function) are Alzheimer’s disease followed by vascular dementia.

Alzheimer’s is caused when plaques and tangles form in the brain making it increasingly hard for it to function properly. Early symptoms include forgetting recent events, struggling to remember words, becoming disorientated in familiar places and finding it difficult to concentrate.

Common early symptoms of vascular dementia include problems making decisions or following a series of steps, such as cooking a meal; slower speed of thought and trouble sleeping. The condition can also cause significant mood changes and depression and make people behave completely out of character.

Dementia is the UK’s biggest killer – and one in three babies born today will develop dementia in their lifetime. The risk of developing both Alzheimer’s and vascular dementia roughly doubles every five years from the age of 65. Women and men are affected equally. Diabetes, obesity, heart problems and high blood pressure all increase the risk.

However, you can significantly reduce your chances of developing the diseases by leading a healthy lifestyle – not smoking or drinking to excess, eating a balanced diet and getting regular exercise. Keeping mentally and socially active is also beneficial.

The third most common form of dementia – accounting for an estimated 20 per cent of cases – is Lewy body. With this condition, tiny clumps of protein appear in the brain’s nerve cells, causing a range of issues including mood swings, problems processing thoughts, hallucinations, difficulty balancing and walking slowly. Although DLB (dementia with Lewy body) can affect people under 65, it is much more common as we age, affecting men and women equally.

There is currently no cure for any of the forms of dementia. But getting an early diagnosis is very important in allowing you and your loved ones to access all the medical and social support available. If you are worried that you have any of the symptoms, your GP will be able to refer you to a specialist who can carry out a range of tests.

If you are worried that yours or someone else’s symptoms may be dementia, download the Alzheimer’s Society symptoms checklist, on alzheimers.org.uk; for more information or support on anything you’ve read here, call our support line on 0333 150 3456 or visit our website.

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