This article has been authored by Jennifer Evans, whose husband Patrick has dementia. A shorter version of this article appears in the FCN document ‘Dementia in Farming’ which is available below:
My nightmare is on hold: my dear Patrick is now in a dementia home. He was a Master Mariner, and after years at sea then many years of shoreside ship management, we moved back to Dorset, taught ourselves to grow organic cherry tomatoes, and scaled up to supply many of the major supermarkets. Patrick is an alpha-male – he ran the show (the expression within the family is “Run that past Planning”) – and I did the rest of it, and picked up the bits.
When it gradually became obvious that he was getting dementia around three years ago, I became aware that, looking over my shoulder and searching for volunteers: there were none – the fields behind me were empty. It was all down to me. It was my turn. Patrick had organised this family, kept us solvent, just, negotiated with supermarket buyers, got our two children schooled (now grown, living away with their own families), and run our own packhouse and deliveries to London. All on 30 acres. He was brilliant.
Then gradually, over 10 years with Patrick’s increasing decline, the farm was doing what farms do: fence-posts rot at the base, out of sight. Gates fall open as the posts move. Brambles form impenetrable thickets. Ball cocks jam. Doors jam. Taps seize. Luckily we had ceased growing commercial tomatoes, and next door have the grazing, as it is now all down to grass. However, trees fall onto fences – and – no fence, no farm – we didn’t want the cattle going walkabouts. So the first crisis was clearly the state of the fences. After some difficulty a fencing company came with a team, Patrick could still drive at this point, and he drove the tractor down, loaded with poles and wire. This was a major first step on the road to bringing the farm back from the brink.
And the farm buildings: the workshop roof ridge had parted, so that every time it rained heavily, torrents of water flooded straight down onto the electric lights, so the trip kept going – not ideal. A hunt with a torch and a ladder revealed the trip under some roof cladding, which was also hanging off: I asked the plumber to show me where it was. So there were often no lights in the yard. The end of the main packhouse building blew in: I tied up a piece of plywood with binder twine. The next night it broke, and water rushed down in a river through a stack of cardboard boxes holding old china, and it gaily formed a lake in the middle of the floor. I replace the lashing with rope, which held, until I could get quotes for a complete new building-front.
I got through the weeks and months with the aid of lists: written in thick Sharpie pen, one list per day on the floor where I couldn’t miss it, with the current main crisis at the top, and red clothes pegs on the bills to pay.
Each yard visit was restricted to 10 minutes: any longer and Patrick would emerge from the house in varying degrees of rage, needing me in the house. The trick was to keep yard visits to 9 minutes, when all would keep on an even keel. The trick also was to avoid the Issue of an Edict, forbidding any remedial activity. Curiously he never had trouble remembering any Edict. We had a 3-year diktat on bonfires – this was an awkward one, with so much stuff to throw away – I recall various forays outside at night with box of matches . . .
Our financial adviser replied by return email: the vital early step is to get a Lasting Power of Attorney. Our solicitor would not let Patrick sign. So we found another solicitor, much more sensible and helpful, who led us through all the papers: signed, done.
When we eventually managed to get Patrick to see our GP, to confirm what he and all of us knew, the result was an explosion of wrath. So we had to leave it six months and try again. He was frightened but less angry this time, and the GP arranged for Patrick to see the consultant. At this stage there is a total silence – I had no knowledge, no advice, no contacts – “How do I respond to him?” was my constant bleat. Anything I said made him worse. I couldn’t ring friends, I couldn’t consult the internet: I needed dementia information NOW, and I needed help with the farm which seemed to be falling apart round our ears with a new crisis every week.
One day when the osteopath was treating my back, I told him my woes (while my bottom was facing the ceiling and my face was down the vinyl hole), and he disentangled my legs to advise me to go to a bookshop. Wonderful man: I went straight to a bookshop, and found Oliver James’s “Contented Dementia”. I read it straight through, twice, with a highlighter. It is BRILLIANT, and should be prescribed at the very first GP visit, or earlier if possible, when the nightmare is beginning. It is a collection of case histories, and is full of good sense, as ordinary common sense does not apply to dementia patients, you have to re-learn everything.
At this point I had an increasingly unpredictable husband, sometimes angry, sometimes just sitting in tears which was just awful, and yet sometimes there were glimpses of the lovely chap I married. And I also had the farm to run – and car – and house – and now two bank accounts. Each one of these needs keeping up. The bank did their utmost not to recognize the Power of Attorney. It took 3 months of both of us trudging into town to speak to a human being, to convince their computer system that I was allowed to sign things on Patrick’s account.
If I had medical phone calls to make, I’d take my mobile and lurk in the glasshouse between the dead tomato vines. This was my only route to the world, friends, family, cousins, and in each case sticking to the 9-minute rule. It was an excellent spot, out of the rain, although there were one or two dramas with my dear daughter making a mercy-dash to a supermarket to buy a Top-Up for my mobile. My daughter- in-law evolved another system of Top-Up, using her smart-phone. They have now bought me one, (though I secretly use my old little one as it fits in my pocket and I know how to use it.) The tail had begun to wag the dog.
Once the consultant had seen Patrick, (and she also saw me separately) and pronounced a diagnosis, the post brought us torrents of leaflets and information every day, we were deluged by literature – but with two large empty voids: nothing about “How do I respond to him?”, and nothing of advice about the farm. I am now hoping to address this lack, and by explaining the degree of my worry I hope to persuade the compilers of the contacts lists to include sources of farm help. And to get it to the people who need it at a really early stage, bearing in mind they will already have “done” probably a year or two years before they can persuade their partner to see a GP. It’s not difficult: it just needs the right people (the communications people) to recognize the desperate need, and to realise that rural people have their particular industry around them and with the gradual onset of dementia the whole farm will be declining to dangerous levels. This could so easily be helped.
My view at this stage, through the panes of the glass house and between the dessicated tomato stems, was one ill husband, and one very declining farm which had to be kept together, and I didn’t have the knowledge or the money. I hadn’t the time to think of it then, but what I badly needed was an Angel in Gumboots, to come through that gate with a clipboard, walk down the three fields through the most beautiful bit of Dorset, and come back up and tell me which crisis to deal with first. I simply could not ask our farming neighbours: our farm was so rundown, broken windows and corrugated iron sheets falling like leaves. As we had arrived in 1985 as “organic”, a movement which hadn’t then reached Dorset, we’d always been labelled amateurs or the worst insult: hobby farmers (8 tons of tomatoes in a year, grown from seed, punnetted, packed and labelled. I don’t think so.) So yes, I was deeply ashamed of the current sight of our once-thriving business, it shouted “Failure”.
Gradually, selected friends were able to come to the rescue – a friend drove on his tractor all the way up the A37, and mowed our grass – by then 3 ft high. And he walked round every rusting farm implement, once we could see it in the undergrowth, identified and made a list of the viable ones, and friends of his arrived and took them away to use – oh wonderful day !
Then an equally wonderful scrap man, a Hercules built like a tank, came and chopped up a topper, a muck-spreader, some trailers, and various implements in varying stages of decomposition in the grass. He brought his family with him: his wife, two sons one big and one little, and his dog as well, a very sporting spaniel, so the outbuildings were thoroughly checked through as an added-value service. The piece of resistance was the demolition of a very old caravan, and they reduced it to a bonfire-size heap. Pete the scrap man and his biggest son loaded all the huge pieces of metal into his van, and off they went plus dog, tyres bulging. What a triumphant three days !
Triumph was short-lived. Through the post came a bill for water for £1,032. I had no idea what water cost, but that did seem a lot. Men with long listening-sticks came and went. It was announced that we had a leak underneath the concrete yard. This turned out to be simpler than I’d feared: they sawed a hole in the concrete with a disc, dug a square hole below, fixed up two new valves and new lid, plus another hole for luck. The water meter still spun round. Further men with listening-sticks prowled all round the fields to each trough. They pounced on yet another spot, and came and mended that: and so the leak was mended. What a lesson: I now read the water meter every Friday dustbin day.
My children arrived alternately – they were isolating as they both work in schools: so they did our shopping, and I gave them long work-lists for the house and farm, which they duly dealt with. One weekend, a half-term, they all appeared, with grandchildren, and the team set about and conquered the vegetable garden which had been laid waste by the deer, who particularly like chard and runner beans as well as roses: every leaf carefully picked off. Charlie looked after and entertained the younger two, Edward and George. Everybody appeared at mealtimes for al fresco feasts, and a good time was had by all except the deer. What a weekend of progress, all in one go !
The NHS mental health system is extremely good, once it is invoked and a diagnosis made. Before that point there is a terrible silence, months when I was on my own and needed help with both husband and farm. The NHS system involved carer support from Dorset Council, and they all worked together and came to my rescue with pills, suggestions, helpers to assess, helpers to reassure both me and Patrick. Family and friends and neighbours, and some most unlikely friends, came to the rescue, or offered help or boltholes, or did shopping. One great friend came out in her car to rescue me from someone’s garden, others gave me tea when I appeared at the door, when nothing needed to be said. It was so very warming to receive, and to use so much help.
With hindsight: I needed the Angel in Gumboots at a very early stage – at the GP stage, or from the nurses. Someone somewhere composes the lists of contacts offering help: PLEASE add to this list the Farming Charities, who can provide such an Angel, and so much more help. The Angel would also have this book under its arm: Oliver James’s “Contented Dementia”, ISBN 978-0-09-190181-3.
Now, we are nearly back on an even keel. Patrick is in a specialist dementia home, and we go and visit the “old boy” once a fortnight, and he loves our visits and enjoys the grandsons, and particularly enjoys hearing messages from friends when they ring up. We take him photos, and if his current delusion story ends with the culprit being “thrown over the side”, well, it probably serves them right !