Living with dementia June 2009

Jan John tells Brigid Bowen, External Affairs Manager for Wales, why love and laughter are the best medicine for husband Rod.

Jan John leans in close to husband Rod and makes a silly voice, telling him she loves him and how handsome he is. He beams and laughs. Bringing more lightheartedness into the house is one of the ways that Jan and Rod have coped with living with Alzheimer's.

Rod, a former geography teacher, is in the later stages of the disease and his mobility, speech and cognitive functions are very limited. But they are coping well and Rod is happy, although it wasn't always easy.

Jan says,

'It took almost ten years for Rod to get the diagnosis of Alzheimer's disease. The consultant said that because of his intelligence, Rod had been compensating for his loss of skills, but his Alzheimer's was already in the moderate stages. Looking back, he must have had it since his early 40s. I felt so guilty, asking myself why I hadn't noticed and been more specific about what his problems were.'

The pair were devastated by Rod's diagnosis. Despite their feelings of grief, they were reassured when the consultant said it could take years for the disease to run its course. And they both resolved to take one day at a time.

Jan says,

'Of course, there were days when I would have to go into another room and break my heart about what Alzheimer's was doing to Rod.

But none of us know what is around the corner and we decided we were going to make the most out of each day.'

A deciding factor
Early on, Jan decided not to read books about the disease, but develop her own response. A visit to a care home was an early turning point. She says,

'There was a group of old ladies sitting in a circle. All but one seemed to be asleep, with their heads bowed on their chests. I started chatting to the lady who was awake, and within minutes the whole group perked up and started joining in.

'It struck me that people respond according to the way you treat them. If you leave people on their own for a long time, then it's hard for them to feel they matter.'

From that point on, Jan developed her own person-centred approach to Rod's care. She says as a family they concentrate on what Rod can do, rather than what he can't.

'We don't over-complicate things. I try to keep the atmosphere light, calm and happy. And if he's not happy I try not to blame the disease, but ask what I might have done.'

Jan admits that she used to be quite a cynical person and had to learn how to keep positive, but living with Rod's dementia has changed her outlook. She says,

'I spend far less time looking at life's negatives. Alzheimer's has changed me tremendously as a person. I've learned to appreciate what's really important.

'Rod's world has narrowed but in a way it's become deeper and higher. Meeting him there has made us closer and our relationship richer. Life is all about the quality of relationships now. It's less cluttered by worries about finance, fashion and status. I've learned to appreciate that the smaller things in life are much more valuable. Like when he smiles, it makes my day.'

Understanding Rod
Jan says that Rod is very aware of the atmosphere around him.

'If I get down then so will Rod. Someone with late stage Alzheimer's may look as though they don't know what's going on, but they do. I've always believed that a person is more than their body and brain. I hate it when people say that people with late stage dementia have all but disappeared. Rod isn't just a body. He has a mind, and Alzheimer's hasn't made him any less a human being. He still has his place within the family.'

She says that the support she receives from her family, the Society's Rhondda Cynon Taff branch and the local memory clinic nurses has been an enormous source of strength. Rod and Jan's children, Alex and Errie and their families, are a constant support, and their grandchildren, Morgan, 5, and Lois, 3, provide much-needed laughter.

Jan says,

'Lois doesn't remember Rod being any other way and sometime she looks at him and is puzzled. So she goes and sits on his lap and says, "Grandpa, I'm going to stroke your hand now and sing to you." And then Rod will laugh.'

'Everyone needs to feel loved, that they belong and that someone will provide for them. But it's also about making people with dementia feel safe and significant. Rod needs to know he is still valued, useful and respected and that he still has his place in the family.'

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