I Love the Bones of You

by Christopher Eccleston;

  ‘What are you doing?’

  ‘There’s black pieces in this carpet.’

  To see that was hard. This was the same man who had previously reached down from his chair, not for a non-existent presence in the carpet, but for a dictionary, a source of wonderment and surprise, shared with his wife and sons. Dementia had stolen that solid, purposeful, imaginative personality and replaced it with something random and unrecognisable.

  It was also increasingly stripping his dignity. He’d get desperate for the toilet. I’d go into the gents at the Trafford Centre with him to make sure he found a cubicle, something he wouldn’t be able to do on his own. Often then he wouldn’t be able to go. The dementia meant he hadn’t correctly recognised the signals from his brain. I’d be waiting by the door of the cubicle, listening. This was the same man, the same flesh and blood, who named all my Indians.

  It was my mum who preserved my dad’s dignity. She was his carer. I just occasionally looked after him. The quality of life Mum gave him was beautiful. He was never turned out anything less than immaculately. Changes that were made were incremental. Nothing that would ever upset his routine. She tried to keep their habits the same, so they ate together at the table – again dignity. Always dignity. We were never a dinner-in-front-of-the-telly family, only latterly did it become easier for her to let him eat like that. Those kinds of changes were never made blithely. And the emotional weight of his inability to act in a certain manner any more was never easy to deal with. My dad had very beautiful handwriting and would write all the Christmas cards, a challenge for my mum because of her dyslexia. His attention to detail even extended to the envelopes, which he would address with a great geometry by writing them parallel to the lines of the phone book. One year my mum said to me, ‘I asked him to write the cards and I did get upset. I looked at the writing and it had really deteriorated. He was getting awfully mixed up.’ That sounds like nothing, but when you’ve spent a life together, it’s everything.

  The carers should be writing these books. They know the truth of dementia better than anyone. And all too often, as they look after people who have forgotten themselves, so their stories, too, are forgotten. It would bring me up short sometimes to think of Mum and how every night she would lie in bed next to a husband to whom she was now a virtual stranger. How much must she have wanted to reach out for some comfort? How much in everyday life must she have yearned for a hug from him? How much must she have wanted, just for thirty seconds, for her Ronnie to come back?

  She wasn’t alone. There was always that little vestige of blind hope that some way, somehow, the old Dad, or something akin to him, would miraculously return. At one point, it did actually appear to have happened. Keith rang me up. ‘Chris! He’s come back!’ I realised from Keith’s tone his desire for it to be true.

  I spoke to my dad on the phone.

  ‘Hiya, cock, you all right?’

  ‘Yeah, great.’

  ‘You in London?’

  ‘Yes, I’m in London.’

  ‘Well, look after yourself, cock.’

  Something had briefly realigned, and Dad was indeed, as Keith had indicated, very articulate. He seemed actually to know who I was. In the end, it turned out to be nothing more than a fleeting moment on a different drug.

  Another time, Mum and Dad were watching the telly. Ronnie turned and stared her straight in the eye.

  ‘What happened to me?’

  ‘What do you mean, love?’

  ‘What happened to me?’

  My mum couldn’t quite believe what she was hearing. It was 2010. Ronnie had been diagnosed with dementia for a decade. He hadn’t asked anything of this nature, shown any recognition of his condition, for years. And then, suddenly, an eruption.

  Mum was quick. ‘Well, Ronnie,’ she told him, gently, ‘you’ve been having trouble with your memory. You’re finding it hard to remember things.’

  And then, in an instant, he went back to his previous self. That was it, done. The genie was back in the bottle.

  When my mum told me what had happened, I found it immensely moving. Not just for my dad, and her, but as a human being. Ten years on, and smothered by medication, somewhere, somehow, Dad had managed to ask, ‘What happened to me?’ It was as though a spark had gone off in his mind – ‘I’ve been living this life unconsciously and now I’m conscious – wow.’ He was a shadow of his former self, and yet, from that darkness came a lightning flash of awareness, of enquiry. In that brilliant illumination was exhibited the strength of the man. Even at this point, so far down the line, there was something still happening inside, a semblance of Ronnie, a semblance of a man with an incredible mind attached to an incredible memory, a phenomenal memory. This was, remember, a bloke who had run warehouses as big as football pitches. If somebody came in looking for a particular box, he’d be there straight away – ‘Aisle 85, pallet 61.’ When he started going to Whiteacre reunions, his memory became a running joke. ‘Right, Ronnie, who’s this?’ someone would ask, shoving a photo under his nose. ‘And what dormitory was he in?’ It became a party trick. I think he passed that skill on to me. I am in the memory game after all. More than lines, though, I remember things about people. He had a memory that threw its cloak wide, and I have that too. When Dad’s memory started disappearing, however, that cloak turned to a straitjacket.

  Thankfully, as the dementia worsened, there remained the odd chance to cast off the shackles. We would, for instance, go to Old Trafford a few more times. There remained in him some recognition of what was going on. The club would play the Matt Busby song ‘United Calypso’ over the PA system before the game and he would start singing it – ‘Manchester, Manchester United; A bunch of bouncing Busby Babes; They deserve to be knighted!’ – later forgetting the words and filling in with the tune instead – ‘da-de-da-de-da’.

  There is one goal that sticks in my head. Ruud van Nistelrooy ran half the length of the field with the ball and stuck it home. ‘What a goal!’ my dad was shouting. ‘What a goal!’ He was absolutely electrified. Whenever I see that goal, I think of him.

  There was another unforgettable incident at Old Trafford. Me, Keith and Dad were walking round the ground and there was a car trying to get through the crowd. In it was the United defender Denis Irwin.

  ‘Denis Irwin!’ stated my dad. ‘One of the best!’ He said it, deliberately I think, in a very straightforward, parodic way, like an announcer, to the extent Denis himself started laughing and so did some of the blokes around us. I love that memory.

  Eventually, however, Old Trafford became too much for him. Nearly seventy years after he first went to watch Manchester United, we left his final match together before half-time. Sat in between me and Keith, I’d noticed he wasn’t reacting to anything about the game. I think he became acutely aware that he wasn’t at home, was in a place he didn’t recognise, with lots of people he didn’t recognise, possibly including us.

  He got up. ‘I’m going home.’

  ‘It’s only just started.’

  He wasn’t having it. ‘I’m going.’

  Lovely thing is he made us leave a game early that we were losing badly to our worst enemy. It was 14 March 2009, United v Liverpool. I have very little to thank Dad’s dementia for, but I’ll thank it for that.

  Again, there was a synergy. Thirty-seven years earlier, on 11 October 1972, he’d taken me to my first game, Bristol Rovers at home in the League Cup – we’d lost that too. I didn’t care. I was eight years old and with my dad. We had amazing seats, in the South Stand Upper, above where the manager sat, at that point Tommy Docherty. George Best and Bobby Charlton played. But none of that mattered. Like the cinema and TV, football, ever allied to the romantic idea that my dad could have been a professional, was a bond between me and him. On the way out at the end of the game, one of the Bristol fans was dancing on a trestle table with a big tall cardboard hat on his head, and all the United fans, including my dad, were laughing at him – none of that incessant abuse you get toda
y. As ever, the fact the guy had the hutzpah to get on the table really appealed to my dad.

  Recently, I took Albert to his first ever game, the FA Cup final. Chelsea beat us 1-0. At the end, he put a giant popcorn box over his head.

  Memories.

  22

  THE RAVELL’D SLEAVE OF CARE

  One time, Mum found Dad sat in the communal area.

  ‘Come on, love,’ she said, ‘shall we go to your room?’

  They walked in and she shut the door.

  ‘Shall we have a dance?’ he asked.

  Mum was a little taken aback. Dad, after all, had never been one for dancing.

  ‘Yes, we can have a dance if you want.’

  They held one another and, as they did so, he tried to kiss her, gently pulling her down on to the bed.

  For my mum, the sheer emotional stress, turmoil and soul-destroying dismay of the day Dad entered the home, the decanting of sixty years of immeasurable closeness and bound personal experience into an empty vessel of unknown strength or fragility, is beyond imagination.

  As is the stark reality of the long hours of the night before as she lay in bed beside him, and the torturous conversation in her head – ‘The man I’ve known for sixty years is right here next to me. And then tomorrow night I’ll be here and he’ll be in a home 8 miles away – and it’s all my fault.’

  Which it wasn’t, of course. This wasn’t the same man she’d known throughout those decades. His personality had been dismantled and dispensed with. It was physically him, but otherwise, the man she knew, and who knew her, had disappeared.

  For eleven years, she had lain next to Dad as the dementia took gradual hold before she finally took a look beyond the boundaries of her own adoring arms and into a care home. Me, Alan and Keith, on the other hand, had long been thinking that Dad’s care was becoming too much for her. Eleven years? There was no doubt in our minds that it was the right decision. The burden of care on her was immense, so intense as he got older, that we genuinely thought it might kill her. The effect on any carer can never be forgotten. There were two people in that relationship, not one. Mum wanted nothing more than to look after the man she loved, but 24-hour care is hard both physically and emotionally. Dad was never a benign presence. He still had the propensity to blow up. Anyone who has seen the effect of dementia knows it can make people unpredictable. I’m not sure any of us knew the real extent of what was happening behind that front door, day in, day out. I’m sure there were things she never told us, that she became quite adept at covering for him.

  Mum had enjoyed some respite when Dad briefly went into care while I took her on holiday or she went away with friends. While never finding it easy to be separated from him, those breaks would deliver a visible improvement in her health, returning much less tired and stressed. Those short periods also provided a small degree of preparation for when he went into full-time care. When she did finally make that decision, it was a move, as ever, born from a place of utter unselfishness. Mum’s attitude was simple – ‘If anything happens to me, and the lads have to deal with it, it will be awful for them. So I’ll do it.’ She was nullifying the hard questions before they could ever happen. Would I come back from London and look after him? Would Alan or Keith take him into their families? She put all that to bed by making her decision. It was a perfect example of her emotional generosity and sense of maternity.

  The day she left him at the home, Alan went with her. I rang her later. She was devastated. Just devastated. ‘The worst day of my life,’ she would always tell me, ‘was not when your father died, but when I had to put him in a home.’

  More than anything, Mum wanted to know Dad was being well looked after, cared for, treasured, as he deserved, but sadly it wasn’t a good place. The respite home, where Dad had stayed while Mum had the odd rest, would have been perfect. Not only was it at the end of their road, but it offered a close and welcoming environment. Disappointingly, when the time came, they couldn’t take my dad permanently because his level of dementia was too great. Ronnie being in a different home further away meant Mum would suffer when they were apart, wondering whether he was eating, or if people were being kind to him.

  The home could definitely be chaotic. One night I went to see him and initially couldn’t find him. He wasn’t in the main space, nor the side room, but a smaller room I’d never seen him in before. As I sat with him, an elderly man got up and punched a frail and greying old woman in the face. My immediate reaction was to look at my dad. I saw him flinch. ‘Oh. Eh. Don’t do that,’ he told the man. Twenty years previously, he’d have flattened him. The woman had been laughing, now she was sobbing. ‘No!’ I said to the man who’d attacked her, and took my dad out. Seeing my dad in that environment, and his sense of distress and confusion, was shattering. I was the only person of sound mind in that room. It was like a roomful of children with no one in charge. I was only in the home for the odd hour here and there. My dad was in there twenty-four hours a day. All I could think was, What the hell is happening to him? What are they doing to each other? These places, farcically, are called care homes, when the actual carers are nowhere to be seen. The only ever-present at Dad’s care home was the smell of urine and excrement, shrouded in air freshener. That, no doubt, comes down to a lack of money. We have somehow turned care of those with dementia into a business where patients aren’t cared for but managed. The care is for the balance sheet. My belief is we don’t know the half of what goes on in care homes. When we’re told what dose of medication our loved ones are on, can we really be sure that is the case? If there are forty or fifty people in one place with dementia, are they not being given more sedatives to keep them just so? If people in homes are invisible, how do we know their care isn’t too?

  Mum certainly was vigilant. She was distressed once when she turned up to find Dad in someone else’s pyjamas. As she had done at home, she tried to ensure he was well turned out, taking clothes in for him. Dad also suffered from badly split feet, which gave him great pain, so she’d attend to them as well. She’d do very practical things to make him feel comfortable. Mum won’t want me eulogising what she did because she’d say, ‘He’s my husband. I was married to him. He’d have done it for me.’ And she was right, he would. But when you see carers, and I’d see many of them at the home – sons and daughters with their mums, blokes like me and my brothers sat with their dads – the beautiful lightness of their love is doubtless combined with an immense weight of guilt, tension, loss and sorrow.

  Generally, Dad would sit in the main room where there’d be a lot more residents. The routine became familiar. I’d walk in, see a nurse calming someone down – ‘Now, now’ – look round and there’d be Dad. I’d walk over. ‘Hiya, pal!’ He’d make a noise – ‘Uh, uh.’ If Mum was with me – ‘Hello, Ron? Are you all right, love?’ – there’d be little bit more coming for her. He didn’t hold on to Elsie as his wife; he held on to her as someone benign and nurturing. She gave him a comfort that I couldn’t. When he was with Mum, I could see and feel him picking up love. He’d look up and smile because the love was just there. It truly existed, as tangible as the carpet under his feet, the noise from the telly.

  Dad’s speech disappearing didn’t distress me as much as the visual cues, the expression in his eyes that revealed the loss of himself as Ronnie. What he was saying made sense to him, even if he wasn’t mechanically able to shape the words. While there was, naturally, an overarching sadness at his predicament, just being in his physical presence was lovely. The smiles I got, or witnessed, were worth millions to me. When they came, I’d feel a rush of emotion.

  To maintain an air of normality, I might tell him the United score. I was there once when they were actually in action – ‘United are playing, Dad, and they’re winning.’ An ‘Uh’ of recognition.

  ‘I remember you telling me about Duncan Edwards,’ I’d say sometimes, prompting a short flurry of noises, completely incomprehensible. I had a feeling at the root of that utterance was his st
ock phrase – ‘Amazing – legs like tree trunks.’

  Mentions of Elsie, Duncan Edwards, Whiteacre or Colgate-Palmolive would generally generate a reaction. What I would want to do but always held back on was mentioning the twins, because of my own experience of him not knowing who I was. There was a very good chance he would remember he’d had identical twins, but at the same time the concept of being a father had gone. I felt maybe I could mention them, but the Cornwall experience prohibited it.

  What I really wanted to do was bang on the table and say, ‘You had twins, mate! You had three kids actually – the other one is me. You are a United fan. You saw the Busby Babes. You married Elsie. She’s the best woman on the planet.’

  I would feel at times very, very patronising. I was always somehow waiting for him to go, ‘I beg your pardon. Are you talking to me? Who’s put me in here? I’m not having this.’

  There was a total awareness of talking down to him, the tone of voice you might adopt with a child. There was part of me that wouldn’t have been at all surprised if he’d got up – ‘Come on, Elsie! This is bloody stupid. I’m off.’

  Mum was going to the home all the time, barely a day went by without her visiting Dad, even though it meant two buses there and two buses back, well into her eighties. Sometimes, Alan, Keith or I would join her. When I was with her, I could sense Elsie, forever selfless Elsie, thinking of not just Ronnie’s emotions but mine as well. ‘How’s Chris going to handle this?’