If you love someone living with dementia, you’re living with it too. That’s the message behind our new campaign. It doesn’t just affect the person with the diagnosis – everyone around them is also affected. And with one in two of us impacted by dementia in our lifetime – whether by caring for someone with the condition, developing it ourselves, or both – it’s a message that’s as vital as ever.
Dementia has slowly impacted every part of our lives
I wish I’d known how suddenly dementia would take hold of Gran. We always think we have plenty of time with our family, but dementia is a cruel disease that takes away our loved ones. As a family, we all do as much as we can for Gran, but we never feel like we’re doing enough.
Gran has always been the family matriarch. She was strong-willed and someone I looked up to – the first person I would tell when I had achieved something. But her dementia has slowly impacted every part of our day-to-day lives.
It’s the little things that get to me the most. Gran and I used to listen to music together and watch gameshows. It was a way for us to bond, but we can’t do that anymore. She gets names and faces mixed up and often confuses me for her son. It’s heartbreaking knowing that we will never have a normal conversation again.
We’re all living with dementia
I used to see Gran every day. But now I’m married and have a child of my own, it’s hard to balance my responsibilities. I still try to have video calls with her every day, but I feel guilty that I don’t see her as much. She looked after me all my life, and now I want to look after her.
My mum struggles too as she has her own health issues. Mum and Gran’s roles have reversed, and Mum is her carer now, as well as her daughter. She is also still trying to be a wife, a mum and a gran herself.
We’re all living with dementia. We’re all living with guilt. It’s taken a big toll on us all as a family. Fortunately, we are very close. We all help and support each other and always discuss what we think is best for Gran.
When things get too much, I call the Helpline
Living with dementia is isolating, and you can’t think clearly when you’re in the thick of it. I’ve called the Admiral Nurse Dementia Helpline many times throughout Gran’s dementia journey when I’ve needed support.
The dementia specialist Admiral Nurses have given me practical ideas on how to keep Gran’s mind active, like playing games and colouring. They encouraged me to stop correcting Gran all the time when she doesn’t understand things. Instead, a tender touch on the shoulder or a loving hug can make her feel special and loved. I now know that making Gran feel at ease and comfortable is the most important thing I can do.
I’ve also called the Helpline just to talk through how I’m feeling. It’s reassuring to hear that what you’re going through is normal, and that other people are going through similar situations. When things get too much, I can pick up the phone and speak to a dementia specialist who understands my emotions.
I’d love to have one more day with Gran without dementia
My advice to anyone who is fortunate enough to have grandparents is to spend time with them and ask them all the things you want to, because there might come a time when they can’t answer. I wish I’d asked her more about her early years in India – she had a whole life before she became my gran. I would love to have just one more day with her, without dementia.
I’m taking part in the ‘We live with dementia’ campaign because I want to do everything I can to spread awareness of dementia. It impacts so many people now and the more we know about the condition, the better we can support our loved ones.
An Admiral Nurse is a dementia specialist nurse that provides life-changing care for families affected by all forms of dementia.
Whether you have a question that needs an immediate answer or need emotional support when life feels overwhelming, these are the ways our dementia specialist Admiral Nurses can support you.