Ivor and Chris's Story

Ivor was diagnosed with Motor Neurone Disease (MND) in April 2020, just after the UK had gone into lockdown due to the Covid-19 global pandemic. Rennie Grove was privileged to support him and his wife Chris both via our core Hospice at Home Nursing Service and our volunteer-led community befriending Supporting Hands Project. A father-of-two and grandfather-of-four, Ivor was 71 when he passed away on 1 March, 2021. Ivor and Chris were married for 49 years.

Chris says: “Ivor and I met at the London College of Furniture. He was from South Wales, as was my mum, so we had that connection from the beginning. Ivor was a skilled craftsman, really good with his hands and also loved watercolour painting. He also did an Open University degree in his mid-40s in maths and science, and had a love of life-long learning.

“We both loved exploring new places and shared a love of sailing. In 2002 we gave up our teaching jobs and set off sailing around the Mediterranean in a 27-foot Vancouver sailing boat called ‘Cariad’ (‘Sweetheart’ in English). It was testament to how well we got on, because that boat was small!

“We originally planned to go for two years, but ended up sailing for 13-and-a-half years, finally returning to the UK in 2015. We travelled thousands of miles, sailing in the summer and wintering in marinas. We experienced so much, travelling to France, Spain, Italy, Greece and finally Turkey, and learning many languages. We didn’t want to grow old on the boat and that’s why we came home.

“Looking back, I’m so happy that we were able to share this amazing chapter in our lives. It was just over a quarter of Ivor’s life.

“Once home, Ivor wanted to extend our house. He drew up the plans, and later on I was so grateful because the extra space enabled me to care for him at home. I was also able to sleep downstairs with him when he became very ill. I didn’t want to leave his side.

“In October 2019 Ivor had a terrible bout of shingles. It really affected his nerves and was so painful. After that many things started to go wrong with his body, and we put it down to the shingles.

“Looking back though, he’d been experiencing symptoms of MND from that spring. He was diagnosed with MND on 1 April, 2020. We were in lockdown so we received the diagnosis by phone and it was absolutely devastating – although Ivor had had a feeling of dread, reading between the lines, thinking that it might be this.

“From this point of diagnosis it became more obvious to me that Ivor visibly began to deteriorate quickly. It became clear he would need a wheelchair, and we had ramps put on the house. We also bought a wheelchair accessible vehicle (WAV) so Ivor could go out every day.

“He was such an active man, and couldn’t bear being stuck at home. When we were told he had MND it was like a bomb going off. It was such a shock.

“We were first referred to Rennie Grove in November 2020, and by this time I was caring for Ivor full time on my own. I was determined not to let him down. From the start the response we had from the charity was amazing.

“The nurses came out to assess Ivor, and he also received physiotherapy and complementary therapy (massage) through the charity. Towards the end of his life, the nurses were coming out to us twice a day. He was on morphine and didn’t want to carry on by this point.

“He had also started losing his ability to swallow, and it was a battle for me to get him to take his solid medication. When the Rennie Grove nurses became more involved it felt like a weight had lifted.

“They were always so thoughtful and caring and lifted Ivor’s spirits. He looked forward to them coming and they made him happier during his last few weeks. They were absolutely brilliant.

“We also received support via Rennie Grove’s Supporting Hands project during the last few months of Ivor’s life. At first we had a lovely volunteer called Sarah who used to come and visit and help Ivor with whatever he wanted support with. Sometimes she would read a book to him, and that meant I could pop outside for an hour and do some gardening, it was such a relief to me.

“I also showed her all the photos of our travels in Europe. They looked at the sailing log books and maps. He loved looking back on all of our adventures and she enjoyed it too.

“Later, a second volunteer Charlie came out to us. Ivor was a brilliant chess player, but I’m not very good, so we had asked whether we could paired with a volunteer with an interest in the game. Both Ivor and Charlie were very competitive!

“Ivor looked forward to Charlie’s visits. He had to tell Charlie which of his pieces to move and where, because by this point he couldn’t raise his arms, but he still beat him a few times. It boosted Ivor’s morale. They’d also stop and have a break and share a chat over coffee.

“The time both Sarah and Charlie were able to give Ivor was so valuable to him, and to both of us. It made a big difference to me as a carer as well. Up to that point I’d had no respite, and watching my husband go downhill was so hard for me. I never wanted to let him know how difficult it was for me, because he wouldn’t have coped with that, so I was always trying to lift his mood, however I was feeling.

“When Supporting Hands came on the scene it was a total breath of fresh air. Just having the knowledge that Ivor was happy, and that I could have some time to do something for myself – even if it was just food shopping or gardening – made things a little easier. The companionship and tailored support we received from Supporting Hands made an amazing difference to us both at a very difficult time.”

“The help and care we have received from Rennie Grove has had a profound impact, on Ivor as a patient in his last months and weeks, and on me as his main carer.

“From the nurses to the Supporting Hands volunteers, everyone at Rennie Grove has been so caring and absolutely brilliant and I can’t thank you enough. I don’t know how I would have coped without the support of the charity.”

 

Supporting Hands volunteer Charlie, 42, a dad of two, used to visit Ivor weekly as part of the Rennie Grove service.

Charlie says: “My wife works for Rennie Grove, so I knew a little about Supporting Hands and thought it sounded like a great project. I knew I wanted to become involved as a volunteer.

“It has been so difficult for patients and carers who have been on their own all the time during the Covid pandemic, and this was a small way that I could help. I was quite open about what I might be asked to do to support someone – whether that might be taking them out, or just sitting talking.

“The training that we received from Rennie Grove was so broad and really comprehensive that I felt well prepared. Currently we have to wear full PPE to visits, but you just get used to it.

“From the start when I was paired with Ivor I thought we would be a good fit. The Supporting Hands coordinator mentioned that Ivor liked chess and was looking for someone to play with him. He didn’t want to have to talk all the time, he wanted to concentrate on the game he loved, and because I love games too it seemed like a brilliant option.

“When I’d arrive at his house we’d chat about various things and Chris would be there too. Then we’d set up the chess board. We’d have quite a serious game, and Ivor was pretty focused. One game carried on over two visits. I had to take a photo of the board and then reset it up. Ivor and I were about the same level, and he’d tell me how to move the pieces. I knew he wouldn’t want me to go easy when playing a game.

“I used to visit once a week over two to three months, and I think my visits provided a welcome distraction for Ivor. We used to talk about his children and my children, and I found our visits really enjoyable. I definitely gained something from it over the past difficult year. Volunteering for Supporting Hands provided an escape from my own concerns about myself and my family, it helped me to see the bigger picture and take stock. It gave me a wider perspective.

“Supporting Hands is a project that has a massive impact on the local community. It doesn’t just support patients that are nearing the end of their life, but also people who may just be crying out for company.

“If we can expand the scope of Supporting Hands even more we can connect with more people, and also connect people from across the generations within the local community, like myself and Ivor.

“It’s wonderful to think that something as simple as playing a few games of chess made such a difference to Ivor, and Chris. I definitely plan to carry on volunteering for Supporting Hands, and have now been paired with a new client. I know that different clients will pose different challenges, but for each one you make a difference, and that also makes a positive difference to you.”