“I remember listening to Tessa Jowell speak in the House of Lords. She said something that impacted me: let us die with dignity. These words are for all those who support Trinity Hospice and I would like to say thank you.”  - Luis.

Luis is a carer for his mum, Carmen, who was diagnosed with dementia four years ago. They have been receiving support from Nuno, one of Trinity’s dementia nurses, for almost a year.

This is Nuno’s story of how he supports patients and carers like Carmen and Luis:  

“Our community dementia service is a team of three and together we support people who are living with dementia, and their families and carers, in their own homes and in our outpatient clinics.

We are often the first contact and the earlier the better. It is important at this stage to know what the person likes to do because they will continue to like these things, but may not be able to say.

When someone is first diagnosed with dementia we can also start discussing their wishes and preferences about where they would like to be looked after in their last days, advanced decisions to refuse treatment and provide information about lasting power of attorney.

In this way we help families like Carmen and Luis to live better.

A big part of our service is liaising with other healthcare professionals: GPs, district nurses, social services and hospital teams to guarantee we are providing the best care possible to that person. For patients like Carmen, there are other services that can help too, like Alzheimer’s Society, Age UK and Dementia UK. All this support is important and overlaps at different stages.

At Trinity we also run the Monday Club for people with dementia. It’s a project run by volunteers where patients, families and carers can do painting, singing and socialise. It’s a moment for them to get out of their usual place. They can enjoy our garden and see different people.  

My favourite thing about my job is that I can go home at the end of the day knowing I helped somebody. I remember supporting a particular family who felt very distressed at not knowing how to help their mother. Nobody had explained to them that they were getting it right by just giving her what she needed at the time. It was about helping them to understand they were doing the right thing and then they felt much more peaceful.  

It is these key moments that make me feel that our job is so important. Those moments can change, completely, the course of the end of life for someone.

There’s not really a single piece of advice that I give to everyone, it depends on every situation. But the main idea we need to help people understand is that there is a lot to live for. It is not the end when you get a diagnosis of dementia. It will change the person’s perception of the world, but we can help people to live better; there is plenty of support and they are not alone in this journey.

That is really important, that people understand – they are not on their own.” 

Luis was asked about the difference Nuno’s help has made: “It’s nearly one year now since Nuno has been helping us and it has been fantastic. As the number one carer for my mum so many things go through my mind: like, is my mum going to wake up tomorrow? It’s tough. Life has changed a lot but this service is so helpful.

It’s like when you meet a friend and you speak about your problems and it makes an enormous difference. This is what Trinity has done.”