'You are forever spinning yarns'
John Main's dementia was subtle at first. He forgot how to use the remote control menu to record TV programmes, his wife Jean recalls. He was 68 years old.
Jean Main knew those early signs only too well. John's three sisters lived with the disease and he had always feared inheriting it.
"John used to tell me ‘if I get it please shoot me'," Jean said.
Over the next 12 years his symptoms deteriorated leaving their 53-year marriage in tatters, Jean said.
"Gradually he was getting unreasonable. He would dig his heels in, which was unlike him."
"I didn't know what to do. Our two sons had left home, but when they would come to visit he would be on top form."
John became increasingly forgetful and his behaviour changed from his good-humoured self.
"He would go into the garage to try to do something, I would say ‘you don't usually do it like that'. He would get really cross with me. The relationship was in tatters. I thought I have to do something about this, it is getting much worse."
Jean contacted Alzheimer's Marlborough and began attending their carers meeting twice a month to learn coping mechanisms. "Exchanging ideas was very beneficial. I didn't feel so alone. It made my life easier if you can call it that. I found a way to get through.
"I learned you don't confront people with dementia or argue, you sidestep it. It is a little bit like dealing with children and distracting them."
Jean was in turmoil as John required 24/7 care. John would awake at night wanting to shower and he wasn't eating food Jean prepared for him.
"John didn't recognise he had dementia, he said his doctor and I were ganging up on him. He would say ‘I am alright, there is nothing the matter with me'.
"I discovered he wasn't showering himself because he didn't know where to start. By this time I was getting pretty burnt out. I couldn't leave him home alone."
Jean tried to get John to visit the day programme at Alzheimer's Marlborough where clients socialise and enjoy activities to keep their brain active.
"I used to take him on false pretence that I was visiting a friend, but he saw the Alzheimer's sign at the door and would get cross."
John's symptoms came to a head two years ago when he became increasingly aggressive and Jean was advised he required residential care. "One day I went into the garage to see what he was doing and he gave me a punch. When he got aggressive it was difficult. I didn't get any respite."
A bed opened at Ashwood Park residential home and Jean faced the difficult decision of choosing whether to continue to care for him alone or place him in care.
"It was hard when the geriatrician put into words it was not going to get any better. If I hadn't made the choice I would have snuffed it by now. Quite often carers go before the person with dementia. I told him I had to go to Christchurch to get treatment, but there would be people to look after him. It was hard, particularly the innocence of him not knowing what I was arranging for his life. I felt so awful he didn't have a say, he wasn't in a position to.
"You are forever spinning yarns and get very deceitful. It is necessary. He is fully institutionalised now. He is content, he doesn't know any different.
"I find it very difficult to visit him. I talk to him and hold his hand." Jean makes memory books of John's time in the Grenadier Guards in England, family photos and his days playing football with friends.
"I still remember the first day I met him at a dance. I was wearing winklepickers and a bouffant skirt. John came up to me and before I knew it he was swirling me around the dancefloor. He had a lot of confidence.
"Those are the memories I hold on to."
The Marlborough Express