I realised something was wrong when I was working down at Somerville College in Oxford where I used to be an engineer.
I went to check an electrical distribution board and when I opened the door it just looked as if a tin of spaghetti had been thrown against the wall. Nothing made sense. There were colours but I couldn’t tell what was live and what was earth and I was an experienced engineer.
Things had started to go before that but as I was on call 24 hours a day for breakdowns I just put it down to tiredness. But this time I knew I was in dire straits. It had just gone.
I went back to the office, locked the door and sat down to have a cuppa to try to control my emotions and there was a phone call from somebody asking questions. I put the phone down. I didn’t know who it was. It rang again and the same voice said ‘Dad, why won’t you speak?’ It was my daughter. I was sinking fast.
My GP said I was just stressed. My wife, Janice, who has been a tower of strength, told him it was something else. I was signed off work for a fortnight. I was told I was depressed. Then there was a stand-off. My wife said I wasn’t. She worked in a pharmacy. She knew it wasn’t depression.
I was off work for 10 weeks. I started going absolutely crackers. I was followed around the house by the dog and there were things happening that I didn’t understand so I demanded I go back to work.
The university medical department picked it up because one of my staff said I was being moody. It was then that I was steered through the minefield of lousy diagnosis but we got there in the end.
We found someone else who picked up the pieces and came out with a diagnosis. That was in 2003. My first reaction was shock but I was pleased in some respects because I thought I was going mad. There were so many things just disappearing. My wife, my daughter and our dog, Ben, kept me going. Sadly the dog passed away. Someone said he’d lived to see you through it and gone. It was very hard.
I had to retire from the job I loved, we lost our home, which was tied to the university, and we moved back to Chester-le-Street in County Durham. The treatment up here was much better. The trouble is all my notes were lost which wasn’t nice but my new consultant had a different attitude. She was more caring and after waiting six months I had to go through all the scans again. It was three days after they were completed that my notes appeared.
The psychologist down in Oxford said I was lazy. I wasn’t. I’d done huge budgets and estimates but then I was down to counting on my fingers. My mental arithmetic had gone. That was hard to take.
My new consultant in Durham was miles better than her Oxford counterpart. She wasn’t a professor, she was a doctor and she was a massive help and pointed me in the right direction.
When I’m at home I have had a routine that I’ve had since I first met the consultant in Durham. She told me to write down my life story and keep a diary, which turned out to be my blog, which has given me something to focus on, and even led to lots of people writing to me to say how much it had helped.
It was only after we came back here and went to Alzheimer’s Society that I went to the first UK convention for people with dementia in Newcastle and I realised then that people with dementia could have an active life. From then I’ve never looked back.
I can get knocked out of my stride. It can get to the end of the day and I’ve not shaved. That can be traced back to the telephone going. I am generally positive but you do get down-days. That’s life, I suppose. Sometimes the wheels come off but you just pick yourself up, do something else and go back and try again. That’s the case with my camera. Sometimes my brain doesn’t keep up with it but I persevere.
I used to support Newcastle until they sacked Sir Bobby Robson but then like my father and grandfather I stared following both our big North East clubs. It’s good to see two local sides doing well. I feel a bit sorry for the way Newcastle are doing which is probably down to an owner not knowing what he is doing. I don’t watch the matches these days because I get too tangled up in the action and I try to avoid stressful situations. I tend to walk away but sometimes it’s unavoidable on social media. When I was working I cope with the stress easier than I do now. It’s just one of those things.
Dementia is a brain illness but it’s one you need a lot of support with but it has to be the right support delivered in a timely fashion. I can forget what I have done five minutes ago. I can get up to go to the computer and forget what I was going to do. That’s frustrating because when I was the university college engineer at Somerville I used to run the computers that ran the whole college.
One of the worst things with dementia is that it feels as though you’ve been hung out to dry. You feel isolated because friends walk away from you. You lose hobbies. I used to love wood-carving and woodturning. But I nearly broke my hand twice.
For me the main challenge is trying to hang on to stuff that is disappearing and the fear of losing control. But as my consultant said if you lose control one day, forget it, try again the next day and then the next day and the next day and if that fails move on to something else. It’s that advice that has kept me going. You’ve got to try to do something else. My computer skills have gone but I’ve got voice-activated software so I can talk things through on a good day.
So, is a dementia diagnosis the end of the world? Certainly not. A lot of the websites say you’ve got five years after a diagnosis and then you’re finished. If you’ve got support, like I have, the world is your oyster. I relish every day. I do lots of things with my wife but I do things independently as well and I’ve become more and more interested in photography.
Attitudes are improving but we need more support for people with dementia which is why Dementia Awareness Week this week is vital.
Too many people still focus on the mistaken thought that dementia is just something that comes with age instead of being an illness in its own right that affects all ages. Unless we can break that down we will never get the money we need for research.
It is harder then cancer to tackle because it is the brain rather than cells around the body. It is more complex. There is a lot of research in Newcastle, but it needs a bit push to get research companies on board. There has been too many failures and money lost because it is so hard to break into.
When I was a teenager they said they would never do heart transplants and they did. The same applied to liver transplants. You never know what will happen.
I don’t think the stigma is as bad but there needs to be more focus on attitudes. It can be the old mining towns and villages where the taboo is the worst. That is because they are small and everybody knows everybody’s business.
I’m trying to do my bit to raise awareness and help on the research front. One of the reasons I have gone into research with Dendron in Newcastle is because if people like me don’t get involved, what hope is there. I also work with Lloyd’s bank, New College in Durham, Sunderland University and Northumbria University and to help them as well. The presentations used to take me a couple of days to sort out but now it’s a couple of weeks.
It has been interesting seeing my grandkids deal with my dementia. My daughter is a biologist so she originally managed to cope with it better than my wife and she explained a lot of it because she covered a lot of it at university.
When the first grandchild came along there were occasional problems forgetting things and she’d say ‘granddad’s got old-timers’. When the next one came along and cottoned on to it and she worked things out on her and she is now encouraging the third child, a grandson, who is only five and very bright. The response you can get from them can be tear-jerking.
I have a wonderful relationship with them but they are protective. They are there in a flash if I do anything that gives them cause for concern; something that might be dangerous or if I’m looking confused they are there.
Once I picked my granddaughter up from school and we got chatting and she said she’d had a bad day because she couldn’t remember her spellings because she’s forgotten them.
I tried to re-assure here that it was not a problem and that used to happen to me. She said I had an excuse because I had ‘old-timers’. It hit me hard. A child of her age should not have to go through this.
It is hard to cope with. Part of me says children shouldn’t go there but they are the future. If you can get children to understand it then hopefully they will change things for the better in the future.