Transcript: ISBA 2016: Back in the driving seat - James McKillop

Dr James McKillop MBE, a person who has been living with dementia for a long time, tells of his personal experience of risk and outdoors activity.

Podcast Episode: ISBA 2016: Back in the driving seat - James McKillop

Category: Mental health 

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

NM - Neil Mapes
JM - James McKillop

NM So we have got the great pleasure in introducing Dr James McKillop MBE. We have had the great pleasure in supporting James for the last 5 years or so and James is a man who likes photography and outdoor activities and is a strong family man as I’m sure you will hear but he is also a founding member of the Scottish Dementia Working Group and former Chair and since 1999 has had vascular dementia and has been part of an amazing array of initiatives and projects both Nationally and Internationally. He is a constant source of inspiration to me and to many others across Scotland and other Countries and it tells me in the preparation for the speech this morning that he is going back to Japan next year to do another speaking tour of Japan. So I will hand over to James and hear what James has to say.

JM Good afternoon everybody, I’m James McKillop. I lead an ordinary life until dementia came in the door. I have multi infarct dementia and I had to give up work early as I couldn’t do it. I’m 76 in a couple of months so and I have lived a long time with dementia and as Neil pointed out that if you stimulate people you can perhaps delay the progress of the illness. Right here we go, Page 1 of 40.

So this taking which we heard from Jaynie and Neil, I started off with a dictionary which says, “a situation involving exposure to danger or the possibility that something unpleasant will happen”. It fails to mention that risk taking, done properly, can improve the quality of someone’s life. I looked up Google and in the UK most accidents happen at home. I do not know the European figures. I had a good think about that. I could trip getting out of bed, fall down the stairs whilst in a half awake state, as I have already done or if I had many other accidents and damp kitchen or bathroom floors and with sharp slippery knives. Perhaps I should get out of the house as fast as I can each day. It safer according to statistics. Some outdoor activities are inherently more dangerous than others but does that mean we should never pursue them. If we didn’t take risks our quality of life would surely suffer and we would become hermits in our own home. Also idleness may lead to quicker progress of the disease. Now Jaynie mentioned risk taking in her talk. So the answer staring you in the face is to take balance risks with someone who has been properly trained to observe, spot and quickly react to them to eliminate them as much as possible in the early stages but you will never eradicate every risk as the unexpected can happen, so you have to make an informed choice and live with the consequences. It is your decision to go ahead or not. You should fully expect that someone doing a risky adventure with you will be chose for their ability to adapt instantly to rapidly changing situations. They have got to be able to think on their feet. Have I taken risks? Yes I have to get that special photograph. This was me acting on my own. My heart was in my mouth when I was clambering over a safety fence and climbing down a cliff face, wet with spray from waterfall, slippery hand holes and tree roots. I did not consult anyone as I would probably have been discouraged from going ahead, without use of safety equipment and supervision.

When I was diagnosed with dementia the public understanding at that time was that people with dementia were unable to do anything for themselves for example some well-meaning people would shoulder me aside and cut my sandwiches. People are more enlightened now and many accept that we can have a life as near normal as possible, given the right support. I like that whiskey, it’s great.

I recall when I went on respite to the Scottish Island of Mull. I went on a boat trip. Going by boat is the only way to access the Island of Staffa in the Inner Hebrides where fingal’s cave is. Have you heard of Fingal’s Cave anybody? I think it was Mendelssohn wrote a piece of music about it and I can understand why. The boat was low in the water and you could trail your hand in the sea. If the Captain judges it right you can step out on the Island an inch your way along a narrow path, holding on to a rope with the sea surging yards below you. You sometimes have to let go to let people coming out from the cave pass you and they have to cling on to the rope again. There is some risk of stumbling into the sea and drowning but your worries are over when you enter the cave and see the magnificent columns of basalt and hear the sound of the sea as it roars in. It is like being in a Cathedral and you really have to be there to get that awesome feeling. I have felt nothing on Earth like it. It was risky but I accepted that otherwise I would never have had that wonderful experience.

Naturally I came home after the break with my head in the clouds. Maureen benefited too as I was less work to look after when I returned. She also had the time to pamper herself and get up when she wanted and get out when she wanted. It took years off her, I hardly recognised her when I came home.

My Driving Licence was withdrawn many years ago but despite my condition slowly deteriorating over the years I felt I was still able to drive but I never had the chance, I was barred from the road. Meeting dementia adventure, genuine sincere people who work hard to give people a chance to do something they have never done before or something they have been prevented from doing due to the illness. Dementia adventure ways up the risk against the benefits to see if it is safely possible and hopefully put the thought into action. To cut a long story short, when I was up in North Scotland Dementia Adventure arranged for me to go out in a car with a driving instructor on a disused air field where, due to the lengths of the runways I was able to go at a fair speed, 60mph and I nearly could have caused the car to roll over. I didn’t know about this when I went up North and it’s something I was tormenting my wife with. I sat in the car and I said “I should be driving, slow down, go faster”, I tormented her quite badly with my driving experience. So this was fantastic you know, it’s like winning the pools, getting behind the wheel of a car again because I felt so bad about losing my licence I couldn’t even sit behind a wheel when the car was sitting stationary. People ask did I regret anything about my illness, I said “I regret losing a wage, so I can have money to buy rubbish things and I regret not driving”. I really missed it badly and even after all these years I still miss it. So Tony came from the driving school and I asked him to treat it like a driving test. I did 3 point turns, U turns, reverse parking, reverse parking between cones from the left then the right. Sadly I was unable to do a hill start as I was on an air field. The feel good factor lasted months and I was finally convinced I could never cope on the public highway again but I loved the experience, I was exonerated, my dream came true. It also helped Maureen. When out I always moaned I should be driving and this got on her nerves. Since then I have never told her I should be driving again. I had laid my demons to rest. I do not feel the need to drive again. I have been there and I have done it. I can rest content.

I would recommend anyone thinking of a risky adventure to talk it over with the experts at Dementia Adventure who would do the necessary background checks and only go ahead if they felt all safety factors were taken into account and that carers, if any, were fully involved.

Now my memory is bad, as you will be aware, now Neil, do you not go abroad as well as the UK? (Neil replied yeah). So if anybody is from outside the UK, you know, keep Neil in mind and his website. I can’t speak for Dementia Adventure but I would imagine that when presented with a seemingly impossible project they would not immediately turn it out of hand but would question themselves, how can it be done safely or what alternatives are there near to the real thing, for example an ex pilot may want to experience being at the controls one time but is not allowed to fly. A flight simulator could satisfy his need to fly again. Now my wife and I were on holiday couple of months ago up in the North of Scotland, place called Portsoy, I collect stones and I wanted to go down to the beach to collect some stones and she begged me not to. Again, we didn’t have Dementia Adventure on hand to guide me and no doubt say no because it was dangerous. You went down the side of a wee narrow path down a cliff which had been overgrown and again if you tripped you would be down a cliff and could get injured or killed on the rocks below. I took a walking pole with me and the walking pole got bent, it ended up like a boomerang and it was very dangerous but I managed to get some stones. The problem with stones, they are heavy and I had to carry them back up the hill again so I didn’t get as many as I would like to have done so again I took a risk, I shouldn’t have, I realise that now and I don’t think I will be able to go back down to that beach again because I think, even with Dementia Adventure the path is too narrow, too overgrown, too slippery but I know they would think about it carefully, maybe they would helicopter me in. God, they don’t say no to anybody.

So my final message is a plea to you, if you never take a risk and try something new you will never know just how good it can be.

Thank you.

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