Remember, Remember

by Hazel McHaffie

  James looks at me strangely.

  ‘What?’ I say.

  ‘You don’t believe them?’

  ‘I don’t know. But it’s no picnic looking after a whole pile of dementing people, you know. You can’t believe everything they say. Gran used to accuse me of hurting her. Maybe he thought they were shouting at him but actually…’

  He shrugs.

  ‘Horrible as it is, I’m afraid the Sullivans are probably telling the truth. I didn’t say anything – didn’t want to worry you. But I did a bit of digging, and that home Mr Sullivan came from… there’ve been some complaints. The manager and one of the senior staff left in a bit of a hurry a couple of months ago. There’s an investigation going on.’

  ‘Oh dear.’ I feel sick. I know it happens. But I knew Mr Sullivan. I know his daughter.

  ‘Of course, bullying, maltreatment, that’s a different thing from this,’ I say, flicking the newspaper cutting.

  ‘I know. But these drugs, it says they shorten life.’

  I shrug. ‘Maybe that’s a good thing.’

  ‘Mother!’

  ‘Who wants to prolong a living death?’

  ‘It’s an abuse of human rights.’

  ‘So’s dementia.’

  Chapter 4

  WOULD MOTHER BE better off dead?

  The phone startles me. It’s my uncle.

  ‘I thought I’d ring to see if Doris is any better.’

  ‘She’s much the same, Uncle Syd.’

  ‘Will you tell her I rang?’

  ‘Course I will.’

  ‘She was always the strong one, our Doris. Kept the rest of us in order.’

  ‘I can believe that!’

  ‘It shouldn’t have happened to her. Not after all she did.’

  ‘Nobody deserves it.’

  ‘Her least of all.’

  ‘They’re taking good care of her. The home’s lovely. And she gets out into the garden. I think she enjoys the roses.’

  ‘Doris was always keen on the garden. I’m glad she’s still got that. And there’s enough money, Jess? I can send a bit if you need it.’

  ‘That’s sweet of you, but no, we’re fine. Once the house is sold, there’ll be plenty.’

  By the time he’s finished his limited repertoire of conversation pieces, the tub of Polyfilla has set rigid.

  ‘Uncle Syd.’

  ‘Yes.’

  ‘D’you remember a girl called Cissy Clarendon? In Beatrice’s year at school.’

  ‘Can’t say I do.’

  ‘It doesn’t matter.’

  Now I’m prepared for the real thing.

  Aunt Beatrice listens to my report on her sister’s state of health giving her usual perfunctory responses. She’s in automatic mode and I drop the question without preamble.

  ‘D’you remember a girl called Cissy Clarendon? She was in your class at school.’

  Silence.

  ‘Aunt Beatrice?’

  ‘Vaguely. Why?’

  ‘I met one of her relations a while back. Apparently she remembers you. And Mum.’

  ‘Don’t pay attention to gossip, Jessica. Girls can be petty. Cissy was always jealous of me.’

  ‘Jealous? Why?’

  ‘Who knows? Because I was prettier? Because the boys liked me? I don’t know.’

  ‘She had a high opinion of Mum, apparently. That’s nice to know, isn’t it? Even though they were only schoolgirls.’

  ‘Doris wasn’t the competition.’

  ‘What d’you remember about her – Cissy, I mean?’

  ‘Nothing much. She was brainy. Always won prizes. Two left feet though. Hopeless at games.’

  ‘Oh.’

  ‘I was in the athletics team and the hockey team.’

  ‘I see.’

  ‘What relative of hers did you meet?’

  ‘Her son.’

  ‘So she had a kid then.’ And under her breath, ‘The hypocrite.’

  ‘You’ve lost me, Aunt Beatrice.’

  ‘It’s nothing. Give my love to your mother when you see her. I will try to get up, only things are so hectic down here.’

  I get back to the third bedroom – the oddest shape with its slopes and angles. Scant furniture and an alien smell. This was Eugene and Lionel’s old room, the scene of physical fights and outright hostility at times, but never the sulks and backbiting we girls indulged in.

  I’m leaving in the stud partition Dad added to give the boys privacy. Separation looks better on the agent’s specification: On the first floor, bathroom and four spacious bedrooms.

  It has taken three evenings to clear out the clutter Mother accumulated in here, everything from lumps of coal to a coffee table I’ve never seen before. I tremble to think how she acquired a lot of the stuff, but I know exactly why the cover on the bed has a hole cut out of the middle (‘A moth got trapped in the cloth. I had to set it free.’); how the radiator acquired that dent (‘George keeps singing in there – all night long. He keeps me awake.’); and where the partner of the horse’s-head bookend went (‘Lionel’s frightened of horses. And monsters. Dear Lionel. He’s my youngest, you know.’).

  The echo of her words brings a surge of sorrow. It’s in this room that Lionel is most alive to me. I can see him yet, aged about nine, newly woken, his hair sticking up like an exclamation mark, his pyjama jacket buttoned wrongly, indignation in every line.

  ‘Go away, Jessica. Girls can’t come in here.’

  Or, a mere three years later, huddling in the dark of his room, shivering in the cold, while he breathlessly reported the success of his first date with Sadie Ransome. Being 10 years older I was deemed sufficiently au fait with the ways of the world to be both confidante and agony aunt.

  Emptied, the rooms echo to my movements.

  As I roller the walls, the teenage Eugene seems to watch me painting him out of the picture. How different his life is now. Since he settled in Australia he has prospered, acquired an elegant home and an artistic wife. There is no place for ancient relics in his life, not even the prized Lego, never mind Mother.

  Strange how the choice of a partner can change the course of history. Jane converted Eugene from a globe-trotting sailor with uncompromising socialist beliefs into a conventional businessman with a mortgage and three daughters.

  Percy gave Adeline no offspring but left her with a chip on her shoulder. Ferdie followed and increased the size of the chip in his brief reign, but also gave her a heightened taste for the high-life, which she has continued to cultivate, thanks to his generous alimony.

  Lionel didn’t live long enough to find anyone to clip his adventurous wings.

  And Lewis reduced my horizons to… No, it would be too disloyal and too simplistic to attribute my limited aspirations to his influence. And yet Eugene, Adeline and I grew up under the same regime with the same strong woman inculcating our values and morals, the same quiet man setting our example. Curious. And sobering.

  What did Mother make of our choices, I wonder? She never said. And now I’ll never know.

  Is my brain slowing too? When did I start to notice things weren’t right with Mother?

  She started muddling names and facts. Don’t all women have lapses of concentration as they reach a certain age?

  She spoke of Lionel in the present tense. I assumed that she meant Eugene, or that she was lost in her own memories.

  She told me of impossible things she’d done at the weekend. She must have meant Thursday.

  She maintained I hadn’t informed her of something. I presumed I’d actually been too busy to tell her.

  And she became a past master at covering up her errors. I had to admire her skill. I can see Aunt Beatrice’s face now.

  ‘Doris, that’s the second time you’ve mentioned Mamma. She’s dead. She died donkey’s years ago.’

  ‘I know that. I’m not stupid.’

  ‘Well, why d’you keep speaking about these people as if they’re still here?’

  ‘To check if you’re
even half listening.’

  It was more frustrating with the GP. Mother’s charm and quick thinking gave the lie to my misgivings.

  It was a crumpled letter in the kitchen bin that alerted me to her financial difficulties. The official heading of the bank caught my attention. Would Mrs Mannering come in to discuss ‘various discrepancies’.

  Mother was sitting at the dining table leafing through a catalogue for tailor-made shoes at the time. When I spoke she snapped it shut, looking at once guilty and defiant.

  ‘Jessica! Why do you creep up on people like that?’

  ‘Sorry. Mum, this letter was in your bin. I couldn’t help but notice who it’s from. Is everything all right?’

  ‘Yes, of course it is. Why wouldn’t it be? And since when did it become acceptable for people to poke about in other people’s private correspondence?’

  ‘Honestly, I wasn’t poking…’ Her look was more eloquent than words. ‘I’m sorry, but you would tell me if you had money troubles?’

  ‘There’s nothing to tell.’

  She’d always been so competent with financial matters and something of that expertise covered her tracks. Some of the evidence I’m only now finding. Goods purchased from catalogues, hidden in cupboards. Bank statements, cash, final demands, stuffed into improbable places. Was she sufficiently aware to be alarmed by them? Was she conscious of giving her bank details to unauthorised people? I can only hope not. At the time I was comforted by her robust denials. I wanted there to be nothing amiss. Leaving me free for Aaron.

  There was no consolation in having my suspicions confirmed. Once I’d finally accepted what was happening… after Aaron… the decline seemed to escalate. She lost the capacity to cook, to dress herself, to attend to her own hygiene.

  The change in her personality was hardest. I kept telling myself it was the disease that generated her restlessness and aggression, but it didn’t ease the daily battle. She dragged my standards down as well as her own and I could only try to be glad that she was unaware of the degradation. Or so I thought. But now…

  As I unpack the signs of her lonely struggle hovering between two worlds, I regret colluding with her pretence, denying her comfort when she most needed it. And where else could this feisty woman turn for support? Not professional avenues certainly. With her there was only ever her best side.

  The phone startles me into dropping the roller, leaving a slur of emulsion across the floorboards. I curse under my breath.

  Aunt Beatrice makes no effort to hide her resentment. ‘I thought you must be out. I was about to ring off.’

  ‘I was painting.’

  ‘Well anyway, I’ve had an idea. Electronic tagging. I heard about it on the radio. That would make a difference, wouldn’t it?’

  ‘Make a difference to what?’

  ‘To Doris.’

  I take a deep breath. ‘I can’t believe the home would agree to tag a lady who’s suffering from Alzheimer’s.’

  ‘No, not the home! If she was tagged, she wouldn’t need to be there. Then when she wandered off, you’d be able to find her.’

  ‘Aunt Beatrice, I’m sure you mean well.’ Liar! ‘But Mum is in The Morningside to stay. She’s not coming out, with or without a tag.’

  ‘But then you wouldn’t need to sell her house. You’d be better off,’ Beatrice wheedles.

  ‘No, I wouldn’t. I’m beginning to realise what it’s taken out of me, caring for her all those years. I can’t do it again. I can’t.’

  ‘Did you ever consider tagging?’

  ‘Strangely enough, no, I didn’t.’

  ‘There you are then. You weren’t in possession of all the facts.’

  ‘You misunderstand me. I know about tagging. For criminals and offenders. Not for my mother.’

  ‘It’s only like keeping tabs on pets. So they’re safe. People return them if they get lost.’

  ‘Mother is not a pet. And I have no intention of treating her like some Yorkshire terrier.’

  ‘But remember all the times you were going out of your mind because you didn’t know where she was.’

  ‘Oh, believe me, I remember. But tagging isn’t the answer.’

  ‘And locking her up in a home is?’ Aunt Beatrice says sharply. ‘Selling her house?’

  I grit my teeth as she ploughs on.

  ‘Nowadays parents track their kids with mobile phones. It’s all the rage. It’s the same thing. You want to know they’re safe. We could keep track of Doris and let her do what she wants to do. You know, she might be better – not so frustrated and upset if she had her freedom back. She’d feel more in control.’

  ‘I can see you’ve been giving this a lot of thought and you said “we”, so I take it you would have her part of the time, to give her this happy second chance.’

  ‘Oh no! London’s no place for somebody like Doris.’

  ‘Have you talked about it to Adeline? Is she going to take a turn?’

  ‘No, I haven’t.’

  ‘And she could pop over to Melbourne, to Eugene – maybe in the wintertime, so she has year-round summers.’

  ‘Now you’re being silly.’ Aunt Beatrice sounds sulky.

  ‘Realistic, I think you’ll find. Mother is past being looked after by any of us, we have to accept that. And the house is going on the market. Probably in September. Now if you’ll excuse me, I really must get back to the painting before the roller dries out completely.’

  Does she ever wonder whether she has inherited the same gene? I do. I might be doubly prone to it, in fact. Father died too young to know.

  Try as I will I can’t eradicate the conversation from my mind as I resume painting. For I too had scratched around for ways of keeping Mother out of institutions – although for very different reasons.

  I appealed to doctors…

  ‘Mrs Burden, there aren’t the funds to buy the drugs you think would help your mother. Some trusts do find the money but unfortunately this one can’t.’

  It was only £2.50 a day. That’s what I was asking for. For a drug that could potentially slow this horrendous disease. A mere £2.50. The price of a large bag of potatoes. Or six quality sausages. Or a packet of pea seeds.

  I applied to politicians…

  Dear Mrs Burden

  We are sorry you see this as cost-cutting. The trust for your area seems to have taken on board the advice given by NICE – the National Institute for Health and Clinical Excellence – an independent organisation appointed to provide guidance on the promotion of good health and the prevention and treatment of ill health. Based on expertise within the healthcare community as well as the academic world, NICE has assessed the drug you mention, Aricept, as not giving sufficient improvement to be appropriate in the early stages of Alzheimer’s Disease. We suggest that you speak to your GP about extra help from the social services in your area.

  I know Scotland isn’t answerable to NICE but the iniquity of postcode lotteries made me furious. I let my GP have it, both barrels. He was defensive.

  ‘Bodies like NICE have a difficult job. Whatever they do they get criticised. This isn’t an arbitrary decision based on personal whim or individual preference. They’re trying to juggle fairness with sound economics.’

  ‘Explain to me how it’s fair.’

  ‘In general, NICE approves drugs that cost less than £20,000 for every extra year of improved quality of life. Above £30,000 the drug is usually turned down. In between they need to be persuaded of the benefits.’

  ‘Has there been any debate about the financial ceilings they impose?’ I raged.

  ‘Well, no.’

  ‘Who says that’s all that should be available? Not families of people with dementia, I bet!’

  Pandora became an unexpected ally. Her friend’s father had been given Aricept early on. It gave him a whole new lease of life. He’d used the time to set his affairs in order and establish a proper plan so the family could respect his wishes when he could no longer state them competently himself. That GP
, according to Pandora, had a relative with Alzheimer’s. He fought for his patients. He told them outright they shouldn’t pay for the drugs or they’d end up paying for everything.

  Pandora’s comments sent me searching. The letters were fierce. The NHS should be free at the point of delivery, ‘fair and equitable for all’, said somebody from the BMA. Once you let NHS patients pay for extra treatment, you risk tempting future governments to cut the number of drugs they fund.

  NICE is ‘bureaucratic, unaccountable and run by economists not doctors’, stormed the Patients’ Association. The decision was ‘unreasonable and cruel’. ‘What about the Hippocratic pledge to do no harm?’ asked a Dr Thain of Tavistock. ‘This decision smacks of a principle of equal unfairness: don’t do a good turn for anyone in case you have to do it for everyone.’

  Once I was alerted to the inequality I started seeing it everywhere. Primary Care Trusts refusing to honour consultants’ prescriptions. People dying prematurely because of shortfalls in funding for life-prolonging drugs. The better-off or more determined patients (and their aged parents) spending their pension funds and savings buying a little more time to see a grandchild, to celebrate one more anniversary, say a proper goodbye.

  I begged social workers for better community support and respite care.

  ‘We have many families who need support and limited resources so we must prioritise need. We can assure you that your case is being viewed with sympathy and we will monitor the situation with care,’ I was told.

  That would be monitoring by remote control, then. I certainly never took part in any kind of assessment.

  I even sank to offering myself to a BBC reporter as someone willing to describe our situation on TV, if it would pressure the authorities into providing the resources we needed. In the end they chose a retired army colonel who’d cared for his wife devotedly for 25 years and vowed never to relinquish her care to another living soul as long as he lived. I had to switch off. A saint was exactly the kind of person I did not need.

  And now, here I am, being made to feel guilty all over again.

  I’d like to tag Aunt Beatrice!

  Chapter 5

  SORTING THE HOUSE is bound to bring back memories, but last night’s blast from the past was of a different order.