John and Grace's story
OSJCT Admiral Nurse support the couple in coping with the ongoing consequences of John's dementia
Sadly John passed away in October 2020. We are grateful to his wife Grace, for wanting to share their story.
John and Grace found support with the consequences of dementia, through OSJCT The Lakes Care Centre, near Cirencester, after John’s long term move to the home.
The couple recently celebrated their 25th anniversary with a socially distanced celebration at the care home. Recent months have been very challenging, but Grace has found that OSJCT, Dementia UK and OSJCT Admiral Nurse, Nikki Rowe, increasingly supportive.
John and Grace moved from London to Marlborough in 2016, into a retirement village. Moving was stressful, especially for John who had been diagnosed with mild cognitive impairment in 2011. In 2017 he suffered a minor stroke and underwent tests, including an MRI scan, which confirmed that he has Alzheimer’s.
Grace said: “I didn’t need anyone to tell me that John had dementia. I was finding it difficult to cope and we were already in need of some help.”
As well as diminishing communication John, who had had two hip and one knee replacements, had become frail and was at risk of trips and falls.
Initially John went for some respite care at a local home, but it didn’t suit him. Through a friend they heard about OSJCT The Lakes Care Centre and its specialist dementia care. John went to give Grace a break from the 24/7 care he needed. During his stay, Grace could see that John was cared for, settled and happy.
Grace reflected: “I knew that I couldn’t carry on as John’s sole carer. It was very difficult to decide that the best thing for John would be a long-term stay at The Lakes, but we made the decision together. I am grateful for that.”
As the team at OSJCT The Lakes Care Centre home got to know John and create a routine based on his needs and preferences, they also saw that Grace needed support with the change to their lifestyles.
Support from OSJCT’s Admiral Nurses
Grace was introduced to OSJCT Gloucestershire Admiral Nurse, Nikki Rowe. OSJCT is one of the few care home providers that has partnered with Dementia UK to employ Admiral Nurses. These are Specialist Dementia Nurses who embed best practice and training across the Trust as well as offering support to family carers in the community.
Admiral Nurses work with formal carers to train and coach them in best practice, and with family members of people living with dementia to help them to process the diagnosis and decisions around the care of their loved ones. They provide emotional, practical and professional support based on research and best practice.
Nikki supported Grace by meeting with her once a month whilst John grew more familiar with the care home. Nikki and Grace also stayed in contact by phone and Grace always felt that she could ask for help or advice.
Grace explained: “Nikki was very good at finding out what was happening to John and would offer advice and suggestions as to how to cope and support him.
“John has lost his mobility, struggles to eat with cutlery and finds it difficult to form a sentence. He recognises me, though sometimes he confuses me with his mother.
“We were able to meet for our 25th wedding anniversary together in July, for a socially distanced outdoor afternoon tea with champagne and celebration cake. I’m very grateful to the team at The Lakes for organising that for us. I could see that John was enjoying it too.”
Nikki encouraged Grace to join a couple of initiatives at OSJCT The Lakes Care Centre, their Carers’ Forum and Dementia UK’s Time for a Cuppa, as well as dementia support days featuring talks about dementia from professionals. Grace found the Carers Forum very helpful, around six to eight relatives and carers would get together on a monthly basis to share experiences and gain peer support. She said that it became apparent to her and Nikki that the experience of caring for a spouse differs from those who are caring for partners or siblings. It’s a different sense of loss, as the marital relationship changes. Grace and Nikki took some time to discuss this.
Grace said: “The Carers’ Forum gave me a sense of companionship, of solidary. I made a good friend through the group.
“Throughout the time of the Covid-19 I was very low. John and I couldn’t meet in the usual way. I was grateful that the staff in the home were very conscious of checking in with loved ones and Nikki kept in touch.”
Finding purpose in volunteering
Towards the end of 2019, John was stable and content with his care and Grace found herself with more energy. She spoke to Nikki who suggested that she consider volunteering. This led to Grace becoming a volunteer Ambassador for Dementia UK. After training she linked up with a school and gave talks to the pupils about dementia. She also linked up with the South West region’s fundraising team and is planning a golf club fundraiser, postponed until 2021.
During the initial months of the Covid-19 pandemic Grace volunteered at OSJCT The Lakes Care Centre in their laundry rooms. Grace explained:
“Although I couldn’t visit John, as the home and its staff adhered to government guidance, I felt close to him. And I was freeing up a member of trained staff to spend more time with the residents and that was important to me.
“The protocols and infection prevention practices were very well thought out. I felt safe and looked after. As a volunteer I was supervised and welcomed.”
Grace is hoping to volunteer in the home’s garden in the future.
Happy times in France
Grace and John have many great memories to look back on from their life together. Grace had a varied career working at different times in administration roles in the City of London, for the BBC and running her own business. John had a long career as a stockbroker. In the early 1960s - after the London Stock Exchange amended the rules allowing firms to have a branch office outside the UK - as a Partner he opened his firm’s office in Brussels. One of the first to do so.
Grace said: “John studied modern languages at university and travelled extensively both for his work and pleasure. We travelled together and renovated a wreck of a house in Brittany, which we kept for 15 years. We have many happy memories of our time there.
“We talk about these times often. John loved France, he still recognises French when he hears it and sometimes thinks that we are in France together on holiday.”