It’s Dementia Action Week, an annual campaign to improve the lives of the UK’s 850,000 sufferers. Sheena Grant reports on a housing initiative that helps couples stay living together after a dementia diagnosis, however bad things get.
When Brian Sharp’s wife Anita became ill with dementia he promised that he would always look after her, no matter what the future held.
“That was when she was still able to talk about what she had,” he says. “I said I would never leave her; I would look after her and she would never go away without me.”
As her illness worsened and he struggled to provide the level of care she needed at home, it was a pledge he worried he might not be able to keep.
But then the couple were given the chance to move, together, to a flat at Orwell Housing Association’s Jamie Cann House, in Ipswich, where Brian could be supported in caring for Anita as her needs increased.
They celebrated their 50th wedding anniversary in February 2017, a year or so after moving into a two-bedroom ground floor flat at the extra care complex in the town’s Ravenswood area.
Anita died in November, aged 72, with her husband by her side at Jamie Cann House. He had fulfilled his promise to her, and much more besides.
“Nothing more could have been done and I couldn’t have wished for anything to be better,” he says. “That means a lot to me.
“She was a super mum (the couple have three daughters and two granddaughters), a lovely wife and was very clever. She loved holidays, going out and gardening. Before she was ill she did a lot of calligraphy. Her writing was beautiful but gradually, with the illness, it became so small you couldn’t read it at all.
“It was very hard to see the illness progress but being in Jamie Cann House you felt comfortable and reassured. Towards the end, nurses from the hospice were able to come in and if there was a problem in the middle of the night there were people on site who could help. I’m so grateful to them for all they did. ”
Brian, who does not have any care needs himself, has now moved out of the flat into Dundee House, a sheltered housing scheme run by Ipswich Borough Council. But he returns regularly as a volunteer.
“I had to move when I lost my wife as I haven’t got anything wrong with me that necessitated me living there,” he says. “But Jamie Cann House was a big part of my life. I got to know the people there and I liked doing what I could to help so I’m a volunteer now, doing a bit of gardening and taking the bingo.”
Jamie Cann House is one of 12 extra care schemes run by Orwell Housing, stretching from Lowestoft, Kessingland and Reydon down to Felixstowe, Sudbury and across to Stowupland and Ixworth.
The homes offer an alternative to residential care and enable couples to remain living together. Staff trained in dementia and Parkinson’s care are on duty 24 hours a day, making it particularly suitable for Anita, who had Parkinson’s as well as Lewy body dementia, which is caused by clumps of protein forming inside nerve cells in parts of the brain involved in thinking, memory and movement. It is the second most common type of dementia after Alzheimer’s and is estimated to affect more than 100,000 people in the UK.
Brian, now 74, cared for her in the family home for three years after she became ill.
“Initially the signs were very minor and I was probably trying to ignore them,” he says. “But as time went on I realised there was more wrong. It wasn’t necessarily her memory that was the biggest problem; it was remembering how to do things. One day she got the vacuum out and took it into the bedroom. She had no idea what to do with it. She sat down on the bed and cried. I said on the bed and cried with her. That’s when I realised how bad things were.
“After three years I realised I needed extra help. We went to look at Jamie Cann House. The worst thing was not actually moving but handing any care over to someone else. But the staff were so professional those worries disappeared after the first day.”
Initially, just four hours’ care a week was provided to help Anita shower and Brian did the rest.
“Within a year she had deteriorated so much she was unable to speak and her mobility was very poor,” he says. “She never complained and only a couple of times betrayed anything. One evening I noticed she was crying and I was anxious to see her so upset. I think she had a glimpse into reality every now and then. She was frightened. The relief of being at Jamie Cann House was enormous because although everyone’s dementia is different, we weren’t on our own..”
n Orwell Housing Association provides homes for more than 7,500 residents, managing 4,300-plus properties in Suffolk, Norfolk, Cambridge and Essex. To find out more about its extra care schemes visit www.orwell-housing.co.uk/extra-care.
One size doesn’t fit all
Orwell Housing Association offers support and care for those with dementia in the community as well as in its extra care housing schemes. Its specialist dementia outreach service for clients in the Waveney area who live independently and require care in their own homes will be up and running towards the end of June and is accessible to anyone, not just Orwell tenants.
Service manager Hayley Cheshire said: “We are proud to offer high quality care, especially in key areas such as dementia. It is important that care and support options are tailored as one size does not fit all. Some options can work well for one person but prove stressful and unsuitable for another. We make sure whoever is caring for the person with dementia knows them by providing life-story books, telling staff about their likes and dislikes and providing belongings that bring comfort and have meaning. These little things can bring a better quality of care.”
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here