What were you doing prior to hearing that your uncle David needed you to care for him?

“I was being a filmmaker in India and David kept phoning me up and having incredibly long phone calls with me, which made me realise that he was lonely and not coping very well, even though he had various people helping him. A friend of mine who I had asked to go and visit David a couple of times a week told me that I should come back.

She thought David did not have long to live and was worried that David had an unhealthy relationship with one of his visitors.”

That’s a major life-changing decision for you to return to London. What were the initial challenges that you faced in terms of supporting David – and how did that change over time?

“I initially thought that I could come back to London and sort out all the problems and then go back to India. I had no idea that the caring would go on for five years. Initially I was trying to unravel all the messy knots that existed because David had not been able to stay on top of things. David was a hoarder and there were piles of books, papers, clothes, dodgy electrical heaters, burnt out sockets. I met with a lot of resistance from David, who thought I was a bossy nephew! We also had fun and laughed a lot, but he always wanted to chat for ages. I would think that I had sorted out a problem – such as organising a nurse to come regularly, but then something unforeseen would happen.”

How did you balance sorting things out for David alongside taking care of yourself?

“Caring for David just took up so much of my brain space and time. It was much more consuming than caring for myself – trying to get the right shopping, trying to sort out the passwords on the telly because he had fiddled with them, dealing with doctors’ surgeries, utility companies, his friends. The physical and emotional strain just made me incredibly tired, and I think it took a long time to recover. There are also positive experiences as well. I think that caring is one of the most useful and rewarding things that you can do in the world. It’s just a shame that it is not remunerated in the same way as a useless job like being a hedge fund manager.”

So much of suddenly caring for someone can come a surprise; is there one thing you wished you’d known from the beginning?

“When I started looking after David, I thought that I should always try and do exactly what he wanted. And although we should give the people we care for as much agency in their lives as we can, there are times when they might want to do things which are against their own best interests. I wish that I had more confidence in trusting my own intuition. For example, uncle David kept saying that there was no way that he would go into a care home. But, when circumstances forced him to do so, he was very happy there.”

Did you access any support and was it useful?

“The best support that I had was from an LGBT+ support group for the over 50s, called Opening Doors. They provided LGBT+ befrienders to come and talk to David once a week. It was exciting for him to be taken outside the shrunk-down world of the home where he was housebound. It gave me an opportunity to get on and do the practical things because I knew that he had other people to talk to.”

What made you pick up your camera and film this time with your uncle?

“It was uncle David who asked me to bring the camera along. Because he was an actor, he never felt more alive than when he was performing. He loved coming up with little witticisms; close to his death he would say, “Dying is like going on a wonderful holiday, but without the bother of having to pack.”

If this film could bring about one change in relation to the services that are available, what would you want that to be?

“I think that the worst thing was that all these services – doctors, nurses, social workers did not have enough time to assess David’s needs properly or to provide the care that was needed. You only get 10 minutes with a GP. I hope that the film will make politicians realise that they cannot continue to cut resources – on the contrary we need more funding so that family carers can be supported.”

You’ve been showing the film at various festivals – what has been the audience response and what conversations has it started with other carers?

“Seeing my experience of caring for uncle David on screen has been cathartic for many carers. One woman stopped me in the street in Amsterdam and gave me a big hug, saying, “When people ask me at a dinner party what I do for a living and I tell them that I’m looking after my mum, they tap me on the shoulder and say, ‘Well done – good for you’ and then turn to talk to the person on the other side.”