Dementia Helpline0800 888 6678

Liz’s story: "Families like mine need someone to talk to"

Liz’s grandad was diagnosed with dementia in his 90s and experienced sundowning; Liz contacted our Dementia Helpline for support.

Liz with her family and grandfather

Liz with her family and grandfather

My grandad has always been one of the most important figures in my life. As children, my sister and I spent many happy weekends and summer holidays with him and my nan, going on adventures together. He loved to tell us stories about his childhood in India and his career working for British Airways – a job he adored.

When my grandad was in his 90s, he was diagnosed with dementia. He became increasingly confused, asking the same questions repeatedly, as well as being extremely fretful and worried. It was absolutely heartbreaking to watch.

Grandad thought he still lived in India

It was so important to my grandad that he stayed at home for as long as he could. However, as time went on, it became increasingly difficult to know how to support him and keep him safe. The changes in him were pushing us all to breaking point.

Sam as a young man in India

Sam as a young man in India

As each evening drew in, my grandad would become distressed. He started to insist he needed to go home – even though he was already at home. He would try to pack a bag and demand to go to the airport to fly back to India.

He seemed to have gone back in time where he believed he still lived in India, and that his parents and siblings, who had long since passed away, were waiting for him.

As a family we had no idea how to calm his distress. How could we keep him safe in his home when he was adamant he needed to leave? How could we tell him his parents were dead when he believed they were at home waiting for him?

The Helpline was a beacon of hope

Then I heard about the Dementia UK Helpline, and it was like a beacon of hope. Within minutes of speaking to Caroline – one of the wonderful dementia specialist Admiral Nurses working on the Helpline – I felt a wave of relief and gratitude rush over me. Here was someone who cared, understood, and had the knowledge to help us.

Caroline said that over 90% of people with dementia experience what my grandad was going through. She called it ‘sundowning’ and explained that as the light of day changes, people with dementia can experience a sense of anxiety that they are in the wrong place. She helped me understand how my grandad was feeling and offered invaluable practical advice about how to support him when it happened.

The Helpline was a lifeline

Before I phoned the Helpline, we as a family had been totally lost and unable to agree on how best to help my grandad. Having expert help and guidance from a specialist dementia nurse felt like an absolute lifeline. When I spoke to Caroline, it was the first time I’d felt properly heard. She was so patient, and I’ll never forget her words: “Liz, I’m here for you, for however long you need to speak to me. There is no time limit to this call. Take as long as you need.” I welled up when she said that because she was so caring, and I knew that in that moment, there was nothing on her mind apart from this conversation with me.

Sam on his 100th birthday

Sam on his 100th birthday

Families like mine need someone to talk to

Seeing a loved one go through this awful condition is a terribly lonely and isolating experience. Families like mine really need practical support and advice, and someone simply to listen and talk things through with. I honestly don’t know where we’d be if I hadn’t made the call to the Dementia Helpline, and the need for this service has never been greater. For many people like me, the Helpline is the only place they can turn to.