‘My doc thought I was menopausal – and even prescribed HRT – but it was dementia!’ – Alison Graves

Former school office worker Tracey Lane, 56, suffered symptoms from forgetfulness to extreme anxiety from her late 40s onwards which, she admits, at points left her feeling as though she "didn't want to be here anymore". So when doctors put it down to menopause, she happily started HRT.

But just two years later, at just 51 and with symptoms no better from HRT, Tracey had GP tests and specialised brain scans. The results showed was was actually living with frontotemporal dementia.

Shocked and devastated, the grandmother of 8, and wife to Mike for 20 years, Tracey has now spoken exclusively to OK! to reveal how she's come to terms with her diagnosis now and to raise awareness of an important condition that many still know little about…

"I first noticed symptoms in my late forties. I was working in a school office at the time and was aware I was becoming more confused. I was feeling really down and depressed which didn't make sense to me because I have a lot of love – I've got a lovely family.

"I couldn't shake the feeling of wanting to leave the world; I hate to say that, but that's how it was. I had terrible anxiety and was really uncomfortable within myself, it was awful. My anxiety does still come and go but not nearly as bad now I have proper medication.

"I went to my GP and he said I was likely going through the menopause and prescribed HRT – I think a lot of early stage dementia and menopause symptoms crossover. I took the HRT but it didn't make any difference to how I was feeling at all because of course, it wasn't the menopause.

"Years passed by and I ended up back at my GP for brain tests, followed by a brain scan at a specialised hospital not far from me. I then had the dreaded phone call at just 51 – I had dementia.

"Mike (61) and I cried a lot and he went into a complete panic. We just thought, 'This is going to be terrible.' I have friends though who have different types of the condition and they're much worse though so I just have to keep going as best I can.

"The diagnosis was almost a relief, I wasn't going mad after all. It's not wonderful, but I have something I can now tackle. I did get angry at first to be placed in a menopause bracket because of my age but I've come to understand how difficult it is for GPs and mine really are lovely.

"I just feel so guilty for my husband though. We used to go out for meals but we don't anymore. Before my diagnosis we'd love to go to new places to eat but I just can't face it. I don't like the smell of food and don't really eat meals now. When he comes home from work and cooks dinner I have to go in the other room. Some days I think, 'right, be brave today and try something' but I just can't.

"My doctor gives me drinks called Fortijuice and I eat those Belvita bars and then for tea I'll have a porridge pot. Sometimes I'll have a banana.

"Christmas dinner is a big no now, even though I once loved it. I've not had one for years, and birthday cake is another thing I don't enjoy anymore.

"It has changed so many dynamics in my marriage. We've been together 20 years and used to love watching TV together, but I don't like that now, although I do still love to clean. I'm a bit of a cleanaholic – my neighbour even lets me vacuum his home!

"I'm so inspired by my friend who was diagnosed a long time before me and he's doing really well. His memory isn't great now but he's always trying. We go to Activate together, which is an event organised by the Alzheimer's Society. We go every other Wednesday for a walk, sometimes we play games, and it's just really nice to meet up somewhere – nice conversation and company.

"It's also nice for Mike because everyone brings their partner and they can chat, too.

"I've always been so determined that this won't beat me but that's becoming more of an issue.

"Recognising family and friends is becoming harder and it's getting worse. I always think as long as they understand and know that I love them and I'm sorry, that's all I can do. People think they know dementia and it's all about memory loss but it's not.

"I recognise my sons but sometimes I do struggle a bit. And there are a lot of family members so it can get frustrating – sometimes I wish they would all wear a name badge.

"I used to drive but that's been taken that away from me – I'm not allowed to anymore. I loved driving and it was part of my independence. I do have a pet pug, Mr Kimbos and a tortoise, which Mike bought me when we got married, who is called Herby, so they keep me busy.

"The Alzheimer's Society are absolutely brilliant, I can't thank them enough for what they do for me and the community. I go to Activate as I mentioned, and Brain Singing every Tuesday afternoon, I have a tea dance on a Thursday afternoon once a month – it's just nice to have things planned.

"I also attend a group called Living with Dementia where we meet up for a chat. I don't let it all take over my life but it's good to connect with people who understand.

"I sit down every Sunday and write what I have on for the week ahead – it's so important to keep your brain active, keep busy and moving. And Mike bought me a clever named box for my medication that helps me remember.

"Mike is a fulltime heating engineer but he has every Wednesday off with me. I just can't wait for him to be home with me every day but financially, I can't see that happening anytime soon. It's so hard.

"I have one son living on one side of the street from me, and my other son at the opposite end so I'm sandwiched by love and that's all that matters at the end of the day."

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