He was the special forces war hero who escaped the Nazis and evaded the Japanese, but Keggie Carew’s father couldn’t avoid his final nemesis. Although he gave it a damn good try …

The first note I found in Dad’s pocket said: “My name is Tom Carew, but I have forgotten yours.” I soon discovered he was showing this note to everyone. The next one read: “Thursday Sep 15 2005, I have no memory of writing this Tom BUT it could not be written by anyone else I must be going BONKERS Tom.”

He was coming up to his 86th birthday. I don’t know what made me keep these notes that he wrote himself, but I did. I have a folder full of them. Each one in different coloured pens – ever since I can remember, he switched colour as he went along. They were like small windows ajar into the twilight world that Dad was slowly and reluctantly entering, and trying to outwit. At the same time they were testimony to his indomitable spirit, his sweetness and courage. “[Black pen, crossed out] TOM CAREW’S Brain is collapsing [blue biro] TOM CAREW’s Brain is switching switching away from Memory – memory of people and their names [red biro] So you write me off?? not necessarily I invent – Yes I do – come to my New HUT Wednesday 28 July Tom.”

Dad was always inventive, and had a capacity for great cunning, so it took us, his four children, a while to notice his memory lapses. It wasn’t that he was forgetting things: he had always forgotten things. It was his frustrations that gave him away. He was bewildered and confused. How his bedside light switched on; where the voices on the radio were coming from; why he had to wait for the kettle to boil. My sister, Nicky, eventually took him for a scan. It was confirmed. Dad had begun to suffer little strokes in his brain. Tiny infarcts. Obstruction of the blood supply to the cerebral tissue. Oxygen not getting as far as it should. Small clusters of brain cells dying.

I keenly felt the irony of the timing; for only recently had I been able to reconnect with him without the proceedings being strictly monitored under the patrolling eye of my stepmother, who had died the year before. A last, unexpected chance to spend some time with him and it was too late. And yet …

As each layer of onion peeled away, the essence of Dad somehow remained. Simpler, more fragile, quite a few wires disconnected, but the person I knew: wacky, alternative, wanting to please, was still very definitely there. He was still making me laugh. In the supermarket one day, I looked round and realised he had given me the slip. I saw him halfway down another aisle. He was standing very close to a lady who was inspecting a blue plastic laundry basket in a design of woven, see-through lattice work, like a trellis. Dad was leaning towards her, and she was leaning away from him. A little alarmed, I sped down the aisle towards them. He was still leaning over her shoulder, very close, as I got there, just in time to overhear him say: “They leak, you know.”

Facebook Twitter Pinterest Tom Carew in wartime. Photograph: Courtesy Keggie Carew

Dad had lost the word for orange, and for me, but not “fastidious” or “scrumptious”, and other slightly old-fashioned words. While I didn’t seem to have a gender, I did have an “industry” – which he wanted to join (run, more like). All Dad really wanted was jobs: to be occupied and feel useful again. “Give me a job!” From dawn till dusk every day: “What’s my next job?” They were getting harder to find. Something he could succeed at, something that didn’t bore him, something that would give him a sense of achievement. If possible, something where he could invent a better way of doing it – with a piece of string, a bungy clip or No More Nails, which he applied with his hands straight from the nozzle and then wiped all over his sleeve.

One favourite invention was cutting a hole in a two-litre plastic milk bottle. The hole was opposite the handle, so he could pee into it and hold it at the same time. He made one for me and wouldn’t be persuaded otherwise. He made one for everyone! He had them all over the house in case he got caught short. Dad was always practical. Nothing tired him. He could still touch his toes. Pain didn’t affect him. He had never had anaesthetic at the dentist, and still did his own first aid. But everyone was running out of things for Dad to do. And if we couldn’t occupy him, he would be off. And it was hard to keep track of him.

Life with Dad had never been dull, and that certainly wasn’t going to change. On my way to retrieve him from next door’s garden, I overheard him saying to my neighbour: “I don’t remember you, but I do remember your teeth. They’re very distinctive.”

As my sister, two brothers and I (in our 40s) grew older, and Dad grew younger, it was only logical he didn’t recognise us as his children anymore. Sometimes he hardly recognised himself. “I’m amazed at what goes on,” he told me.

“What do you mean?” I asked him.

He pointed to his beard and whiskers: “I didn’t put any of this on.”

I suggested it grew by itself. He thought the idea of that was hilarious.

“Someone put it on,” he told me. He looked in the mirror, baffled. “If it’s not me,” he said mysteriously, “then it’s someone else.”

Finding out who Dad was, coincidentally, was something I was rather preoccupied with myself – because now I had the freedom of his attic, and access to the large metal trunks full of letters and diaries and all sorts of mysterious documents. Dad had been a specialist, SOE guerrilla agent in the second world war – parachuted into France, behind enemy lines, to sabotage the Germans and organise resistance. Once he had a close escape from the Germans by hiding in a schoolteacher’s house, and the BBC sent him a message in their Message Personnels broadcasts to France, which went out after the evening news bulletin. Certain death was the punishment for hiding an agent. Dad said he learnt to trust communists, nuns, priests and schoolteachers, for they had less to lose … whereas “respectable” French valued their position more than their country’s freedom.

Facebook Twitter Pinterest Tom Carew in his garden. Photograph: Courtesy Keggie Carew

Later, he was dropped into the jungles of Burma to raise resistance against the Japanese, where he operated with Aung San Suu Kyi’s father, and where he made quite a name for himself. In the yellowing Indian newspaper cuttings of 1945, which I remembered as a child, he was referred to as Lawrence of Burma and the Mad Irishman. But 60 years on, my maverick, rule-breaking father had begun to break down in tears. Tears for the loss of people he would never see again. Tears for the loss of a past that could not be revisited. He was experiencing another bereavement – tears for the loss of him.

It was my husband Jonathan’s idea to take Dad to see The Lion King show. We hoped he would enjoy the spectacle, the razzamatazz, that it might take his mind off his memory. The three of us walked up the red-carpetted steps in the theatre foyer when Dad, one step from the top, tripped on something and fell, and started rolling down the steps. Everyone froze, the usherettes froze, the doormen froze, the other theatregoers froze, we all froze. And stared. As an 85-year-old man rolled over and over, bump, bump, bump, all the way down to the bottom. Then sat straight up. Unscathed, unbruised and perfectly fine. There was a loud sigh of relief from the usherettes. What we had just witnessed was Dad going straight into a parachute roll, arms tucked in and totally relaxed. His body had not lost the ability to remember – his guerrilla training was still second nature to him; it just clicked in. He stood up and dusted down his trousers, enjoying every second of our incredulity.

Slowly things were getting worse. All around Dad’s house were notices for reminding. Pinned to kitchen cupboards, in pockets, in drawers, in books. Photographs of us were put up with our names underneath. “[red biro] I HAVE JUST READ pronounced RED all those above BUT I must blame my ‘MEMORY’ outfit (my MEMORY KIT) MY MEMORY hopesness HOPELESSNESS [green biro] If you are going to be like that IT IS YOUR OWN BLOODY FAULT [red biro] I suppose it is ...”

Dad’s contrail became all destruction. Tears of sadness fomented into tears of frustration. Things wouldn’t work. People wouldn’t come. Water wouldn’t boil. He would leave the front door wide open, the blow-heaters on, the gas hob blazing.Every day was getting more and more difficult, and more and more stressful. He ranged about the place precariously, tying things up, scraping things down with his penknife, mixing up dog food with Rice Krispies, cutting the cuffs of his shirt or the tongues out of his shoes. Even when he walked along, he was head-down, his penknife snipping something. “I just want to help someone,” he said. “All my life I’ve helped someone.” We showed him photographs to try to jog his memory, but nothing coherent seemed to click. “What?” “Who?” “Where?” I felt like a stranger gaping in.

Then, for the first time I had ever witnessed, there was flatness in his voice. I noticed it one day speaking on the phone to him.

“Who is this speaking again?” he asked. “Keggie,” he repeated after me, as if he had never said it before.

“Your daughter,” I told him.

“Do I have a daughter?” he asked, but not with wonder, like he usually did.

Facebook Twitter Pinterest Tom Carew. Photograph: Courtesy Keggie Carew

“You have two,” I told him, “and two sons.”

“Do I?” Again, flat, lifeless, soulless. Dadless. All I could do was choke off my breath, thinking, don’t cry, don’t cry, and all I could get out was: “I love you, Dad.”

Each day we fed him a handful of pills, which arrived packed, dated: Monday, Tuesday, Wednesday ... seven sealed pockets containing each day’s prescribed confection. What, I began to wonder, if we didn’t give him these? What were we really doing with our complex pharmaceuticals, our humane ways, our ethical behaviour, our warped cruelty? I was getting in a bind about Dad. One minute he thought he was going mad, the next that we were trying to rob him. He was always so proud of his clear, unencumbered thinking. I wondered how the old Tom would have dealt with the new one. Once, he said he would sail away if he had to, for whatever reason, when the time came he would get in his boat and head out to sea. I knew if I was able to describe this new Tom to the old one, he would have laughed and said: “Shoot me, for Christ’s sake.” And he would have meant it. But I didn’t know how to shoot my dad. Or when to.

There was one of life’s pleasures he still enjoyed. Chocolate. Anything sweet, in fact. He pushed his first course around, but made very quick work of the chocolate ice cream, over which I drizzled two large spoons of golden syrup.

“Scrumptious. Mmm … Terribly good!” He pondered on this: “How absurd to say terribly good.”

Facebook Twitter Pinterest Keggie and Tom in June 2004 at the 60th Jedburgh anniversary reunion at Milton Hall, Peterborough.

I could see him searching for a better word. I waited. “Sexually good!” he says, looking triumphant.

Dad wanted to come and live with me, but I had seen what having Grandad living with us for all those years did to Mum, and I did not rate my chances of coming out sane. My sister knew she couldn’t manage either. Dad wouldn’t sleep in a room but stayed in a shed, or sometimes in the tent he had pitched in the garden, with his two dogs who slept with him and which were allowed to do anything they wanted. We called the little one Psycho Dog. It guarded things. When Dad tried to get into bed, it sat bang in the middle of his pillow then growled and spat if you tried to move him off. In the morning, I invariably found Dad at the bottom of the bed, no bedclothes, foetally curled, trying to keep warm, with the dogs stretched out slap in the middle. Yet he wouldn’t have it any other way.

We got more help, and then we got a live-in carer, but very soon they could not manage either. Then, just before we were pitched into total meltdown, miraculously we found a home for people with dementia and Alzheimer’s half an hour’s drive from Dad’s home, with a room looking out on to a garden, and, miracle of miracles, one that would let him bring his little dog. We began to regularly visit the place for tea; we decorated Dad’s room with all his pictures and photographs, we walked Dad and Psycho Dog in the garden, so that they both became familiar with it. As D-Day loomed, when we would be leaving him there, my sister Nicky and I found the deceit unbearable. The rule for such transitions, when the day finally comes, is to leave the new resident in the home for two whole weeks without any family (or friend) contact; two weeks to bond with the staff and their new surroundings, to transfer all their connections.

Dadland by Keggie Carew review – retrieving the life of a remarkable man Read more

It was poor Nicky who drove Dad away from his home for the last time. Knowing he would never see it again, never shut his gate, never open his door, never walk to the bottom of the garden, never go in his bodger-shed, never sit in his conservatory, never call down the stairs. The treachery of it. The acting and pretending to be jolly so he wouldn’t suspect anything, so he wouldn’t get upset. He sat meekly in the front seat of her car in his smart jacket waiting to go out for tea. Unsuspecting. It took Nicky hours to drive home. She had to keep pulling over to stop, sobbing uncontrollably. She said it felt like the worst thing she had ever done.

No sooner did she get home when the phone rang. Dad had escaped! So she had to drive back again. He was found half a mile down the road, stopping the traffic. Nicky sat with him on his bed. He was focused and alert. He told her, furtively casting his eyes towards the trees at the end of the garden, that the best plan was to wait until darkness, then go over the fence and find a teacher or priest to help them.

• Dadland by Keggie Carew is published by Chatto & Windus, £16.99. To order a copy for £13.93, go to bookshop.theguardian.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min. p&p of £1.99.