Dear Vix,
I’ve just turned 60 and have received some devastating, life-changing news: I have dementia. I’m so scared and just need some guidance. My lovely husband and I have been together our entire adult lives. We met just after I left school at a local dance and hit it off immediately. He was quite the catch! We’ve enjoyed the most wonderful life together. We’ve travelled the world, started a business, had two beautiful children and have recently become grandparents. I wouldn’t change anything. Until now.
In 2024, I became increasingly forgetful and struggled to do the things I’ve always done. I kept losing my keys, despite having kept them in the same place for almost 30 years, and my “legendary” (according to my children) roast dinners became almost inedible. We knew this was a bit strange, but dementia didn’t once cross our minds.
Then, early last year, on a trip to the gorgeous Devon coast, I became very agitated, sometimes taking it out on my husband. This is not like me at all, so we decided it was time to get some answers. It was March last year that we first spoke to my GP. She initially said it wasn’t dementia. “You’re too young,” were the words she used. So, we left and just put it to one side.
But as things kept getting worse, we pushed for more tests and last week we received the official diagnosis – Alzheimer’s disease. Nothing can prepare you for hearing those words. But that was it. A life-changing diagnosis and then nothing. No in-depth explanation. No follow-up appointment. No support. That’s why I’m writing to you. I’m lost.
I thought a diagnosis would bring support, but I feel more alone than ever before. I know this is going to be the hardest for my husband. He’s trying to be strong but we’re both going to need help. Where can we find this? And how on earth do I tell my children? I’m their mother, and it breaks my heart knowing that one day I might not recognise them or my beautiful grandchildren. I’m terrified this is going to change me and my family forever.
Terrified of What is To Come
Dear Terrified,
First of all, I’m so sorry you’ve received this news. Dementia is undeniably life-changing, and I can’t imagine how difficult it is to hear those words. I’m also sorry to hear how long it’s taken to get to this point.
Experiencing all these changes without an explanation as to why they’re happening must have been incredibly scary. No one deserves to wait that long for a diagnosis. It’s completely understandable that you’re afraid of what’s next – but please know there is support out there.
I’ve heard from many people affected by dementia in the past and have directed them to organisations like Alzheimer’s Society. They have a dementia support line with dedicated advisers who will listen to your experience and provide the most appropriate advice. They can explain what Alzheimer’s disease is and what to expect now you have a diagnosis, alert you to support and groups in your area, and provide a listening ear if you just need someone to chat to.
You can also go back and speak to your GP. They can provide more advice and support, and you can ask for information about any medications or treatments that are available. There’s also so much information available online. Websites such as Alzheimer’s Society are full of information about each type of dementia, how to find support and how to tell friends and family.
I know you’re worried about this last point, and I completely understand why. I’m sure telling your children won’t be easy, but there are ways to prepare and adapt to what lies ahead. First of all, have this conversation when you’re ready. I imagine it’ll take some time to process the news yourself, but telling others, with the support of your husband, might help you to do this.
Everyone reacts to a dementia diagnosis differently – and there’s no right or wrong way. All you can do is be open and honest about how you’re feeling, and, ultimately, your children will want to be there for you. You’ve looked after them up until this point, and it sounds like you’ve done a great job with your home-cooked meals and supporting them to bring their own children into this world. Now it’s time to let them be there for you.
You’re right in saying dementia will affect their lives, almost as much as it will yours, so it’s important they get support too. I suggest they also use the resources I’ve mentioned above, and that you all keep talking to each other. It may take time to adjust, but they should remember that you are still you. Mum. And a loving wife.
One thing I want you to take away from this is that you are not alone. It might feel like it now, but dementia affects around 1 million people in the UK. I don’t know many people who haven’t been personally affected by the condition.
Just last week, former news presenter Jon Snow announced that he’s living with Alzheimer’s disease. And I’ve seen so many people sharing their stories this month as part of the Forget Me Not Appeal. Each story is different, but reading them is a powerful reminder that you’re not facing this alone.
The road ahead may be uncertain, but please remember – you are still the person you’ve always been. Dementia cannot take away the experiences you’ve had or affect the love you and your family have for each other.
I truly hope everyone gets the support they both need and deserve. I wish you all the best.
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