My 85-year-old dad has vascular dementia, and his particular dementia demon means his mind often plays cruel tricks with his sense of time and place.
In general he still knows who we are, the members of his immediate family, which is lovely for us. But sadly it also means he’s not always ‘with us’ in the here and now, he regularly becomes ‘lost’ in a place that we in our current form don’t exist in. Even at home, in the house he’s lived in for 48 years, he often becomes ‘lost’ in himself. Sometimes nothing looks familiar to him, and he finds himself a foreigner in a strange place. Yet at other times he finds he’s somewhere he knows very well – unfortunately it’s not the same place as the rest of us are in, but it’s very real to him…
Dad is currently in hospital after a bad fall at home, and I knew as soon as I walked on to the ward last night that he was feeling ‘lost’. His brow was slightly furrowed and his eyes were constantly looking around, bewildered. As soon as he saw me he said with some urgency ‘We have to get out of here, we’re in the wrong place’. I asked him where we were and he said ‘We’re in Mary McRae’s house – look around, can’t you see? We need to be next door… the next house’. I asked how we get there, and he gave me clear directions to a house we lived in 50 years ago – and Mary McRae was indeed our neighbour at that time.
When dad first started his internal time-travelling, mum worried that he was perhaps delirious, imagining things, babbling incoherent rubbish. But we soon realised that dad’s brain was taking him to real times and places from his past, and almost superimposing those memories onto the present, like an old film-reel running against whatever real-time surface it meets. In his mind he’s in his childhood home, or completing his National Service, or deeply entrenched in some other precious memory from the past.
Tonight I visited dad in hospital again, and thankfully he was looking a lot more settled, but as soon as he spoke I realised he was still ‘lost’. ‘Did you come by train?’ dad asked me – I told him no, I took the bus up, there is no train. ‘But you got off the same train as Bill Smith’ he insisted. I gently reminded dad that Bill Smith lived in Stonehaven (about 110 miles away), and we hadn’t seen him for about 20 years. Dad looked puzzled – ‘Aren’t we in Stonehaven?’ No, I told him, we’re in Inverness, you’re in hospital after a fall.
Dad remained consistently confused about our current location, and wanted to know how I’d get home, was I going to be staying with Bill Smith and his wife? And where was dad going to be staying tonight, was he going home on the train, did he have to book a hotel, how much would it cost for a night, did mum know where he was and that he wouldn’t be home tonight? I reminded him he would be sleeping in the same hospital bed as he slept in last night, and patted the bed cover next to us to remind him. ‘That’s not my bed’ said dad, ‘I’ve never seen that bed in my life before… Where am I going to sleep tonight?’
And so it goes on. This is always dad’s biggest worry every evening – where he will be sleeping. The nurses on the ward were concerned dad’s growing confusion was because he was in the unfamiliar surroundings of the hospital, but I let them know that sadly this happens most nights at home, too. Dad’s ‘lost’-ness is internal, not based on external location.
There can be no comforting him, no lasting reassurance to be offered. Just variations on a theme of the same repetitive conversation, played out night after night, dad fretting moment by moment about where he’s going to sleep, lost in a lonely place inside his own mind he can never escape from, frustratingly out of reach of reality…