Ricky’s story – “Dementia has taken a big toll on us”

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 update one year on

Gran passed away in April 2024, less than six months after I took part in the brand campaign.

Grief is such a complicated feeling, and I have learned that you just have to let yourself feel. As you reminisce and share memories, there will be a range of emotions from sadness, reflection, regret and happiness amongst other things. But every feeling is valid and you must let yourself feel it and not suppress any emotions.

People tend to think that grief is about constantly sitting in a dark room and crying – but sometimes it’s getting up, doing your work, smiling and laughing all day. Then, later in the evening when you are on your own you sit quietly and reflect or just do nothing until it is time to go to bed.

Sometimes people can become preoccupied with trying to avoid talking about Gran to avoid making me sad. They don’t realise that I actually want to talk about Gran. She was a massive part of my life and I have so many fantastic memories, remembering her and talking about her fills me with an energy I cannot describe, but it is one that fills me with pride.

My first instinct was to focus on all of my memories of Gran when I was young and all the things we did before she got dementia. But after some time, I realised that I did not want to forget the dementia years, yes they were really hard and heartbreaking at times but there were also some wonderful memories – the way her eyes would sparkle when she felt a connection to some music or a photograph, or when we were talking to her and something struck a chord or a core memory for her. We sat together and did colouring books, puzzles, listened to music and played cards – lots of these things are now really special memories. Things I will not forget.

Grief is not something you get over, it is always with you. Over time, you learn to navigate your way through. There will be sad days and some happier ones too. Of course it surfaces more on special family occasions when I know Gran would been so proud to be there, but also in the quiet moments when I just want to pick up the phone and hear her voice again or see the joy in her face when I tell her something I have achieved. Grief is all the love you still have that you didn’t get to give.

A few months after Gran’s passing, I took part in the inaugural season of Dementia UK’s podcast, ‘My life with dementia’. I spoke about her dementia journey as well as my own experience dealing with grief. You can listen to my episode here.