Christine Wise’s husband Trevor was diagnosed with early-onset dementia at the age of 56; and she gave up her job as a senior academic to look after him.
This week, she shared her experiences with community nurses at the Queen’s Nursing Institute annual conference.
Her talk was full of practical advice, containing insightful messages about how to care for a person with dementia. She described the active approach that she and Trevor were taking to his illness. She cautioned the audience: “There is no typical carer and there is no typical person with dementia.
“Be positive – don’t accept the inevitable. Find out what they can do, not what they can’t do.”
She programmes daily planned activities as part of what she calls ‘Curriculum Trevor’, which includes exercise, activities and a special diet based on The End of Alzheimer’s by Dale Bredesen.
She and Trevor are running regularly with Parkrun, organised community runs. They go out to visit places – despite the commonly held view that people with dementia do not like new places, he does as long as Christine is with him. They are planning to visit Iceland soon, which is on Trevor’s bucket list.
”Christine has had to embrace Trevor’s love of geology. If he is watching a programme on geology she will watch it with him and ask him questions about it.”
The logistics of travelling are complex. If Trevor uses a public toilet he may have difficulties getting out, especially if the door is the same colour as the walls.
Christine may need to ask a stranger who is coming out to go back in and help him find his way out. Some airports are easier than others. Manchester airport has a special Alzheimer’s route, which means they do not get separated in security.
Christine has had to embrace Trevor’s love of geology. If he is watching a programme on geology she will watch it with him and ask him questions about it. However, some planned activities do not work out.
Because of Trevor’s life-long love of motorbikes, she had jigsaws made of his favourites, but it was not an activity that he took to.
“However, it is important to stay positive even though things do not always go as planned, as otherwise Christine says it affects her husband.”
Sorting out his fishing gear from when he was younger took time and fishing seemed like it was going to be an enjoyable activity, but in the end Trevor only went fishing once.
However, it is important to stay positive even though things do not always go as planned, as otherwise Christine says it affects her husband: “Trevor reflects how I feel. He becomes disappointed in himself.”
Honesty about his condition has been helpful, as people in local shops, the bank and the post office know him and that he may have difficulties with remembering things – so they can prompt him where needed.
He can walk back from the GP surgery on his own – the receptionist will ring Christine when he is leaving and if he is not back within 15 minutes she knows she will have to go and find him.
“The nurses that I spoke to afterwards found Christine’s presentation both inspiring and moving.”
Christine says she is determined to fight the dementia as hard as she can. She acknowledges that the planning and execution of ‘Curriculum Trevor’ can be physically, mentally and emotionally exhausting but she is resolute in wanting to “fight back”.
She cried once at the beginning of her talk when she said: “He is leaving me. But I am going to fight to keep him for as long as I can.” And also at the end when she said: “I am having to face the biggest challenge of my life alone, without Trevor.”
The nurses that I spoke to afterwards found Christine’s presentation both inspiring and moving, and they were grateful for her bravery in talking honestly and to such a large group of health professionals.
They had taken some important elements from it – to remember that not every person with dementia is the same and nor are carers. And that staying positive and active is important and will help maintain independence for as long as possible.