6

Visit

Our children have always enjoyed a very close relationship with my parents. During our ten years in South America my mum never fails to write, every week, not just in general, but to each of our four children individually. They send presents, most of which never arrive – ‘lost’ in the Argentine and Bolivian postal systems. We only rarely have telephone contact but we record tapes to send to each other. Grandma tells us the news and Grandad tells stories for the children. Stories of Robin Hood and Little John, made up on the spot. They include a number of unlikely characters, such as Fatty Fudge who, in episode 34, is subject to attacks of flatulence, which our kids find hilarious. Grandma, however, the moral compass of the family, turns to Grandad with a sharp: ‘Ronnie!’ The story is then amended, so that what they actually heard turned out to be, not flatulence, but a squeaky floorboard, followed by a gas leak. They can’t wait for episode 35.

When we first came home on leave we spent months living with them in their home. Tom was born while we were there. So there has always been a special bond between Tom and his grandma and grandad.

Grandad died three years previously. Before he died, though Mum was obviously struggling with her memory, they were ­coping OK. Six weeks after his death, however, we have an urgent, late-night phone call from Ruth, Mum’s wonderful next door neighbour. At 11 p.m. she hears a noise. It is someone calling. It is my mum, wandering down her back garden, in the middle of the night, searching and calling out for my dad.

Thus begins the long and painful process of coping with dementia. Despite living 150 miles from Leeds, in Cambridge, we are the nearest close family. My only brother lives in Germany. Ruth, though, visits three, four, five times a day. Gradually she takes on all Mum’s shopping, washing, cleaning, clearing up the mess, cooking and sorting out her medication. She does not do it for money – indeed she refuses to receive anything for her troubles. She does it simply because she loves my mum, her neighbour of 35 years. Without her, Mum would have had to go into residential care several years earlier, but because of Ruth, this self-effacing, generous, warm-hearted, godly woman, Mum is able to stay in her own home.

But what to do now? How will Mum cope with the news that Tom is dying? Will she understand it? I have already told her Tom is very unwell and has cancer. She shakes her head and looks down. ‘Poor lad,’ she says, ‘poor Tom.’ Tom has asked to see his beloved grandma. On the one hand, if we arrange for her to come down and see him before he dies, how will she react? On the other hand, don’t Tom and his grandma have the right to see each other one last time? These are not easy questions.

Often when I visit Mum she announces: ‘Oh – you’ve just missed our Lily!’ Lily was her older sister, whom she was very close to, but Lily has been dead for two years. I gently remind her: ‘No, Mum. Don’t you remember? Lily sadly died a while back.’ She looks utterly grief-stricken and cries out: ‘Oh, no! Not Lily! Not Lily!’ as if she has just heard the news of her death for the first time.

After a while I cease to correct her and talk about something else instead, such as the utterly heartless, door-to-door utilities salesmen who come and ask her, in a charming sort of way, if she’d like to save money on her gas and electric. ‘Thank you. That would be lovely,’ she says. The first I know about it is the final demand for payment which I find stuffed in the bottom drawer of the bureau. They have changed her service provider, but have not been able to switch the direct debit my dad set up before he died. So the bills are sent, but she just stuffs them in a drawer without realizing that she needs to pay them, which she has never had to do before. When I ring the companies they assure me they have a contract which she has signed – though they cannot, unfortunately, seem to find it or send me a copy. On another occasion they say she has entered into a ‘verbal contract’. This happens several times. I put notices on her door and contact the utility companies, Age Concern, Help the Aged and her MP, but nothing seems to stop this cruel practice. Scottish Power finally offers a semi-apology. They tell me it was a rogue employee, who is no longer working for the company – not their fault, nor their policy, of course – but it is a nightmare to sort out.

I digress.

One of the things happening to me – and to Annie and the rest of us – is that my normal levels of tolerance have fallen dramatically. Things we usually take in our stride now become big deals. We are constantly at the edge of our ability to cope. Very close to our ‘flash point’. We have never been a household for angry rows, but now small things trigger off big blow-ups. Anger is a very common symptom of grief. Looking back now, I can see that I had a lot of anger inside me, which I didn’t recognize at the time but which was directed towards people close to me in unhelpful ways. Towards my brother, for example. He finds the whole situation extremely painful and has tried his best to help. He has paid for us to install Sky TV so that Tom can watch the sport when he is well enough. I talk to my brother on the phone about bringing my mum down to Cambridge to see Tom. His view is very clear. This would be a big mistake. She won’t understand what’s going on. She won’t remember what has happened. It will just upset her, so why do it? He is insistent. He is trying his best to be helpful, but it only serves to make me furious. We have a row on the phone – which later erupts into a much bigger, extremely bitter row with Annie, partly at least, on the subject of why I bothered to consult my brother in the first place. We are at breaking point. Is this the end of our marriage? I am at my wits’ end, unable to cope. I cannot bear Annie’s anger and her distress. Feelings I think I’ve sorted, controlled, dealt with years ago, come flooding to the surface. I don’t know what my breaking point is, but I am sure I am pretty close to it. I have always thought of myself as emotionally robust, but not now. My emotions are shot.

Our other children see me broken, weeping, distraught, at the end of my tether. They have never seen me like this before. I have always been the strong one, dependable, the solid rock beneath their feet, but now I am sinking in the quicksand. So are they, but unlike before, in their need and grief, I can no longer help them.

Tom is extremely unwell. He is in bed, sleeping fitfully or ­dozing much of the time, never comfortable. His voice has almost gone. We finally decide Tom has a right to see his grandma before he dies. I drive up to Leeds and bring her down. We sit in the kitchen and have a cuppa for her to recover from the journey. Then we slowly climb the stairs to his bedroom. He lies there, on his side, under his maroon blanket, bloated from heavy doses of steroids, exhausted by pain and the constant flow of morphine from the syringe driver. Grandma sits on the bed. ‘Poor lad,’ she says, tears in her eyes, ‘poor lad.’ Tom says nothing, but after a while, a hand slowly reaches out from under the blanket and takes hold of her hand. Tom lies there, the tumours everywhere, devouring him. His body spent, overwhelmed, dying. His mind numbed by the battle between pain and painkillers. Grandma sits there, confused, elderly, frail, and struggling to come to terms with what is happening. All that joins them are two fragile hands, held together in tender, silent embrace.

I think of the poem by Philip Larkin, ‘An Arundel Tomb’.1 It is about an earl and countess, portrayed in stone on top of their tomb. The earl’s gauntleted hands seem firmly clasped together, but then Larkin notices that, in fact, the earl’s right hand is only holding the gauntlet of the left. The left hand itself, withdrawn from the gauntlet, is at his side, tenderly holding his wife’s hand. Centuries of snow, rain and wind have eroded the detail. They are almost unrecognizable. Only one thing remains of their weathered features. Like the weathered features of Tom and his grandma, as they sit, silently, side by side, on his deathbed, hand in hand. As the last line of Larkin’s poem reminds us:

What will survive of us is love.

Baroness Sheila Hollins’ daughter was left paralysed after being stabbed in an apparently random attack. She slowly learns to communicate by blinking out letters with her eyes, the only things she can move. One day she blinks out:

Body silent.

Inside love sings.2