‘I’ve seen him disappear... he looks the same, but he is not’ - wife of Duncan Forbes describes Norwich City legend’s Alzheimer’s struggle
- Credit: PHOTO: Jim Spilling
Dealing with Alzheimer's can be a long haul, involving confusion, arguments and a great deal of persistence mixed with the lighter moments.
Janette Forbes, wife of the legendary Norwich City footballer Duncan Forbes, has had 10 years of it, since he was diagnosed in his mid 60s, and she kept a moving diary during some of the difficult years
It tells of accusations that she was stealing his money, confusion over time, and a night when she had to drive him to the locked-up gates of Norwich City's stadium – to prove it was closed and she wasn't deliberately stopping him watching the game.
Writing in 2009, when she was still struggling to look after him at their Thorpe St Andrew home, Mrs Forbes said: 'It has been two years since my lovely man was diagnosed with Alzheimer's.
'In the two years, plus time before that, I have gradually seen him start to disappear in front of my eyes. He looks the same, but he is not.'
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Today, Mr Forbes lives in a care home, where he is well looked after, and Mrs Forbes continues to visit him there most days, with courageous persistence.
'He doesn't speak much,' she said. 'He knows me as a familiar face. But I'm not sure whether he knows I'm his wife, or just the woman who goes to see him every day. Today was quite good. He was looking about, and walking about. But often he just goes to sleep while I'm there.'
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Mr Forbes is famous to generations of Norwich City fans as an outstanding central defender who won the Player of the Season accolade in 1970 and notched up a total of 33 years with the club, including his later time as chief scout.
He frequently took his big, cheerful personality into schools and clubs to promote the sport, and was still hosting events for Norwich City when his family began to notice he was becoming forgetful around 2005.
'You start with nothing, in terms of information,' she said. 'We had to find our own way … find out everything. We had some help from Age UK and from the Alzheimer's Society, but it was two years before he was officially diagnosed.'
As Mr Forbes deteriorated, Mrs Forbes tried to care for him at home for far longer than her supportive family felt she should.
It is that period, in 2009 to 2010, that her diary covers, times when Mr Forbes was sometimes banging on the door to be let out, because he didn't recognise his own home, times of rows as a proud man struggled with his vanishing sense of reality. 'He got upset,' she writes in 2009, 'because NCFC did not ask him to play this season, and I had to tell him that at 68, he was too old.'
And later… 'He has a problem with time. If something is due to happen, it must be now and he is getting ready to go out even though it is a week too early.'
Confusion could lead to aggression at times. 'He would get angry, and he did occasionally hit me. It was very frightening… because he's still a strong man.
'It's important to say that none of this was Duncan… not the real Duncan. He would never have lifted a finger against me. It was the disease.'
It's a disease which, according to Alzheimer's Society figures, will affect one million people in the UK by 2025 – though there is an increasing focus on support and research, with towns across Norfolk joining the growing Dementia Friendly Communities movement.
For Mrs Forbes, the arguments could be surreal at times, and all the more difficult as a result.
Once, she found Mr Forbes was worried he would have to go to fight in Afghanistan, after seeing some news reports. On another occasion, noticing some RNLI Christmas cards left him 'obsessed with the idea that he was going on a lifeboat, even though he said that he didn't want to'.
And perhaps most moving of all, in another note from August 2009, Mrs Forbes writes: 'Lying in bed in the morning next to my husband, not touching because he's not sure who I am. Some mornings I will get a cuddle because he knows I'm his wife, not his sister or mother.'
After the diagnosis, there was gradually more support, with a psychiatric nurse offering help, and Mr Forbes began to attend Age UK Norwich's specialist Marion Road Day Centre at first for one, then two days a week. Mrs Forbes was put in touch with a Pabulum club, and with groups run by the Alzheimer's Society, which Mr Forbes sometimes enjoyed going to.
The crisis came two years ago.
'I wanted to visit one of my sons, who is in Spain. We put Duncan in respite care, but he 'kicked off', became very difficult there.
'He was sectioned, put into Hellesdon Hospital, and then the Julian Hospital. It was from there that he went into care.'
Mrs Forbes continues trying to adjust, keeping up her friendships, going out with a walking group. Her family has suggested she doesn't go to visit Mr Forbes quite so often – and she's thinking about that.
Recently, she took a short holiday with a friend. 'It was a bit of a test, to see if he missed me. I said to my friend, if I come back and he says 'where have you been?', I don't know if I'll feel better or worse. But he never mentioned it at all. So at least I don't have to feel guilty. I really don't think he has a clear sense of time passing, to be aware I'd not been in for a week.'
His is not a cheerful story, though Janette has managed to keep a sense of humour – noting in her diary once, after he had began taking multiple baths at night (forgetting he'd already had one), that he must be 'the cleanest man in Norwich'.