George and his mum Vassiliki were supported by Trinity’s Community Dementia team from Spring 2020. Despite restrictions on being able to visit Vassiliki and George at home, they developed a bond with Trinity Community Dementia CNS Amy, who was on hand with support and expert guidance when it was needed. We spoke to George and Amy about the impact of Trinity’s support on him and his feisty, resilient mother.

George: “My mum was born in a small village in Greece in 1930, one of five sisters and two brothers. She came to the UK in the early 1960s and had only been with my dad for a couple of years when he died of cancer. After that she was left with a three-year-old me and was six months pregnant with my sister, in a country where she didn’t speak the language, and had no support network but thanks to the Catholic Housing Association we ended up being housed in Putney.

My mum was always there to support her children. She was from the Peloponnese in southern Greece, where the Spartans were from – she was feisty and protective, a real mother hen always wanting to fight my battles for me. She was an amazing, lively lady with a wicked sense of humour and a role model to me. She learnt the language and had that sheer willpower to get us through some tough times, always putting her children first, always in our corner.

I knew about Trinity because of their shop in Putney near where I live, but I became aware of how they could be helpful to my mum through the Wandsworth Carer Association. The information the Wandsworth Carer Association gave me about end of life planning and bereavement support was mainly from Trinity so I kept hearing and seeing the name more and more.

Several years ago when mum was diagnosed with dementia I got in touch with Trinity and came along for an open day. At that stage it was just to learn more and know our options but it was good to know it would be there when we needed it.

Mum’s health did deteriorate and once Covid struck, I was put in touch with Amy, in Trinity’s Community Dementia team. Mum needed more support, but I knew my visiting would be limited if she came into the hospice because it was lockdown, and they were having to be so strict with visits to patients on the ward. So, we decided to keep her at home, which was where she wanted to be – where she could be comfortable and in familiar surroundings. We had carers coming in, and the District Nurse and Amy on the end of the phone when we needed.

Amy: “Vassiliki was referred to Trinity at the beginning of the first lockdown, when we had just suspended home visiting so everything was done over the phone. George and I had lots of conversations about how keeping her at home would be the best thing, and was what both she and George wanted. We talked through every aspect of how we could help manage her care, making sure George felt informed and supported. At the time, only knowing a patient and their family via phone calls and by email was quite unusual although less so now of course. But we made it work successfully.”

George: “Absolutely – it’s great to have now finally met the voice behind the phone! Everything Amy sent me or recommended – YouTube links and things to read - it was so helpful. Practical things like swallowing and feeding support, things I didn’t know I needed until she sent them.”

Amy: “When you can’t be in the same room as someone to give them practical demonstrations, you have to find other ways to do it, which we managed”

George: “I felt like I had Trinity on my side even though they weren’t a physical presence in the house. I know Amy and her colleagues must have been immensely busy, but I’d always hear from her within a couple of hours if I couldn’t get through first time and left a message. She was there when I had a specific question and at least one time when I just didn’t think I was going to be able to cope. She was a reassuring presence at the end of the phone reminding me that I could. I’d like to think that I inherited that resilience from my mum as well as her sense of humour and her compassion and those things helped get me through it.”

“Even though we had support from carers and District Nurses in addition to Amy and Joana at Trinity, it was overwhelmingly Trinity’s role that stopped us from being lost. Amy was my right-hand woman, it’s as simple as that!

Without Trinity I would have been scurrying around on the internet looking for information I didn’t know I needed. It was like the bat-phone, knowing I could ask Amy! That connection, how caring and professional she was, was so important and stopped me from feeling totally alone and overwhelmed.

There is someone working in partnership with you who is there to listen and turn to when you don’t know the answer. The body of knowledge and experience that the team at Trinity collectively has is available to you. It’s a source of comfort and strength. It’s practical advice, it’s helpful signposting to information you need at the time you need it. When my mum was diagnosed with Alzheimer’s I read up on it and educated myself but I didn’t know much about the palliative side and that’s where Amy and her team came in. They made me feel like I was not alone. At a time when you are under more pressure than it feels possible to cope with, they help relieve it.”

Find out more about how Trinity's Community Dementia team can help you