Liz’s story

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.

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.

Liz’s grandad Sam holding her on the day she came out of hospital

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?

Sam as a young man in India

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.

Liz on her wedding day with her sister and grandad

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.

How can we support you

Whether you have a question that needs an immediate answer or need emotional support when life feels overwhelming, these are the ways you can get in touch with our dementia specialist Admiral Nurses

Get support

Sundowning

Sundowning is a term used for the changes in behaviour that occur in the evening, around dusk. Some people who have been diagnosed with dementia experience a growing sense of agitation or anxiety at this time

Dealing with restlessness

Restlessness can present as someone pacing, fidgeting, or trying to leave the house. Here are some techniques and approaches which can be used to prevent and manage potentially distressing situations