Remember ME - You Me and Dementia

July 6, 2009

UK: 'I treat Rod as the man he is – not the disease he has’

. CARDIFF, Wales / WalesOnline / Health News / July 6, 2009 By Madeleine Brindley, Western Mail Jan John has spent the past eight years caring for her husband Rod, who has Alzheimer’s disease. At the start of dementia awareness week, 62-year-old Jan spoke to Health Editor Madeleine Brindley about life with the disease WHEN retired geography teacher Rod John was diagnosed with Alzheimer’s disease, he and wife Jan grieved for the end of their relationship. The devastated couple – both 62 – had a very simplistic understanding of the disease, expecting Rod to quickly disappear into his own world, forgetting all those he loved and becoming blind to any attempts to communicate. While Alzheimer’s has taken its toll on Rod – he is now in the latter stages of the disease – he is still living at his Hirwaun home and Jan believes he is happy. She also believes that her long crusade to both find and concentrate on the positives in their lives, rather than dwell on the disease and its devastating and negative consequences, has helped them both through the last eight years. “Rod was offered early retirement from teaching in 1993 – he was 46 at the time and it was supposed to be on the grounds of stress,” Jan said. “After that he gradually began to lose the ability to do things. For some time we thought it was lack of confidence because he was out of work and because we were also caring for his elderly mother.” The couple made repeated visits to their GP, but it wasn’t until Jan noticed a slight tremor in one of Rod’s hands in 2001, that the GP advised them to see a neurologist amid concerns he was suffering from Parkinson’s disease. The couple paid to see a specialist privately because of the 18-month waiting list on the NHS and Rod was diagnosed with Alzheimer’s. Further tests at the University Hospital of Wales, in Cardiff, showed that significant parts of his brain had been affected and that the disease had already progressed quite far. Read related news New landmark for mental health research at Cardiff Jan said: “When Rod was diagnosed with Alzheimer’s, I asked why I didn’t suspect it. I felt so guilty but we were told that Rod’s intelligence and social skills had been compensating for the symptoms. “We hadn’t heard of Alzheimer’s in young people and my understanding of its effect on sufferers was very limited and ill-informed. It was very negative. “My understanding then, which I think many people share, was that he would become like a cabbage, that he would become totally unaware of what was around him; forget who I was and become aggressive. “I thought our relationship would just disappear – I didn’t know what else to think. “We were both devastated. We both cried. It was like our worst nightmare – I think dementia is a worst nightmare for many people. “Despite all the shock of that night we said to one another that no-one knows what the next day may hold and we decided to make the most of it. “We said we would go day by day and get as much enjoyment from every day as we could.” Jan also made a number of other decisions after Rod’s diagnosis – one of them was to not read the book she was given about Alzheimer’s, which would eventually lead to her developing her own unique form of care for Rod, which she calls person-centred care. “It has been a long learning curve amidst the grief of everything,” she said. “I was offered a book about Alzheimer’s – it was very negative because it was called The 36-hour Day – but I decided not to read it or any other books because I’d become caught up in a spiral of symptoms and I’d be looking for them and any signs of deterioration. My life would be full of negatives. “I decided that I was going to concentrate on Rod as a person and respond to his needs – I wanted to treat him as the man he is and not the disease he has. “It was a case of looking for and dealing with the positives amongst the negatives. “I made a number of good decisions – to take one day at a time; not to read that book and to visit a care home. “I was invited to sit in the home’s lounge with a group of elderly ladies with dementia. They were sitting in a circle and, apart from one, they all had their heads bowed onto their chests and seemed to be unaware of me, their surroundings and what was happening around them. “I sat next to the lady who was awake and started to talk. Within a very, very short time all of the other ladies opened their eyes and joined in. “That experience was really instrumental in my thinking about dementia and Alzheimer’s – to all intents and purposes it looked as though they were in their own world and were totally unaware of what was going on. “It struck me that people respond to the way you treat them and that these ladies were bored because no-one was talking to them. “The fact that people can’t respond to what’s going on around them doesn’t mean that they are not aware. “I think that was one of the biggest surprises that I’ve had – I decided then that Rod was going to be surrounded by a very positive atmosphere. “If I’m down, Rod is down; if I showed signs of frustration, Rod shows signs of frustration. Rod, as much as any other person, needs to know that he is valued and loved and feels safe. “It’s been hard work because it has meant learning a different way of living – if I feel sad or frustrated I’ll go into another room and have a cry or a stamp but the fact that he’s happy keeps me going. “He smiles and sometimes he will put his hand out for me to hold – it’s worth it and, in my opinion, I think it’s helping with the disease progression. “Rod still eats well and he hasn’t lost the will to live because he’s happy and has a quality of life. “Three years ago the consultant told me that I wouldn’t have Rod for much longer and that I wouldn’t be able to care for him at home but he’s still here, he’s happy and, in some ways, he’s able to communicate. “I’m not certain that he understands that I’m his wife but he recognises me as someone who loves and cares for him and, in some ways, he can still show that he cares for me.” Jan’s experiences caring for Rod has made her passionate about the care that other Alzheimer’s and dementia patients receive – she believes that all carers should receive meaningful training and she is also keen to ensure that other people looking after someone with Alzheimer’s get all the support they can and need. “I do get tired and it has been hard work, but it has also been very rewarding and I feel that those responsible for training people who care in homes and hospitals should be listening to us carers and be providing meaningful training. “I really believe that it is possible that life with a sufferer doesn’t need to be as bad as we think it will be,” she added. “There’s no way that I’m saying it is not a dreadful, horrible disease and I wouldn’t wish it on anyone, but it doesn’t necessarily mean the end to any sort of quality of life for either of us.” [rc] © 2009 Media Wales Ltd. 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