Before we leave the surgery, I ask for sleeping pills. Daniella doesn’t give me lecture; instead, she simply writes out a prescription. I haven’t taken anything other than Night Nurse since the twins were born, and even then, it was only for three days whilst I was recovering from the caesarean. Daniella and I start chatting but Michael is anxious to leave. He feels claustrophobic. As I turn to the door, Daniella puts her hand on mine. She urges me to confide in my friends. This is going to be a difficult journey, not just for Michael but for me. She has tears in her eyes when she says this.
I suppose I have been in denial until now. Until now, I had little knowledge of dementia, let alone early onset dementia. What will this diagnosis mean for Michael? For me? For my children? A million questions enter my head. If the condition is hereditary, how will this affect my children’s lives? Will they give up before they have started really living?
Chapter 6
November
It is a crisp, clear day in late November. Not at all dreary. Although we still have three weeks until the end of term, the reports are almost done. Most of the academic lessons are over. All the neighbouring offices and shops that flank our building have already adorned themselves with their Christmas decorations. There’s a false optimism shining out from Regent’s Street; this year’s lights are strings of blue angels with silvery white halos. Hardly anyone is actually shopping though. At Bond Street School, we don’t allow decorations until the 1st December. We have only just recovered from Halloween.
We are, however, rehearsing for the end of term School Revue and also the pantomime; the former involves the whole school and the latter is written and performed by the staff. Participation is mandatory. It makes a welcome break from editing reports and also from chasing the part-timers for theirs. I do feel sorry for them. This year, we are putting on our own version of Cinderella. Principal Peter and Liam have been coerced into playing the ugly sisters. Emily is Cinderella (naturally) and Benedict is Prince Charming (who else?) and I have been cast as the Stepmother. I am not sure whether to take this as an insult or a compliment. It’s definitely more fun to play a villain than a two-dimensional goodie, so I take this on the chin. Rehearsals start at 5 pm tonight. We have to meet in the drama studio upstairs. Other members of staff have fairly minor roles but they’re all keen to take part. I think this is a more productive exercise in bonding than the over-priced “away day” we had at the Langham Hotel last year (lovely though it was).
Over the next ten days, we spend a considerable amount of time rewriting the script so that it isn’t full of lewd insinuations but even Principal Peter allows us to slip a few in. He understands British innuendo well enough. His wife is an English rose. He’s acquired some British humour via osmosis at least. He’s been here for over thirty years. We rehearse three evenings out of four in the first week and four evenings out of five in the second. It’s such fun. I have completely immersed myself in the process. We have also decided to rehearse some of the key scenes in our costumes because it’s easier for us to stay in character that way. Abbas, who can’t act at all, is given a special role as the narrator. He delivers it in a completely deadpan voice.
We’re just rehearsing our final scene when Louisa, our faithful receptionist, comes running into the drama studio. For a split second I think she’s going to tell me that Fran has given birth to her babies prematurely. But it’s not that.
Peter and Liam are flashing their bloomers at the rest of the cast. It’s total mayhem but the atmosphere is one of fun and hilarity. Louisa singles me out; I know that it’s bad news. My husband has been sitting on the steps outside the front entrance of the school. She has no idea how long he has been there. I immediately feel a sense of dread and dismay in equal measure. Until now, I have only discussed Michael’s condition with my parents and the doctor, Daniella, who has become a personal friend. I sweep out of the rehearsal room, dressed head-to-toe in my preposterous long black and green ensemble, and dash down the stairs, trying not to put my shoes through the long dress. Michael is sitting in the reception. He looks terrible. I am ashamed to admit it but I am not at all pleased to see him invade my professional space: my inner sanctum. I try to tidy him a up a bit, pushing his hair back over his forehead; it’s become quite wild, like Eddie’s has, only it doesn’t suit him. His shirt isn’t buttoned up correctly and one of his shoe laces is undone. I suddenly see Michael as other people might see him: he looks old and depressed; hungry and homeless. I barely recognise him.
We have almost finished the rehearsal so instead of abandoning it, I invite Michael to come and watch; it might cheer him up. He follows me down the corridor and up the stairs. He leaps up them, taking them two at a time. I ask him to wait for me. It’s difficult to run up the stairs in my cumbersome costume. He shows me no pity and rushes ahead of me; even this is out of character. I miss the old chivalrous Michael.
My colleagues are friendly and greet Michael with considerable enthusiasm. The new members of staff, who don’t know him, look on uncertainly. I don’t think he’s at all what they expected. But Abbas, who knows Michael fairly well, Principal Peter and Liam and a few of the others, all shake his hand and make him feel welcome. I am touched by their warmth. Abbas fetches him a glass of water and gives him a plate with a couple of biscuits on it. He gobbles them up like a child. The rest of us bring the rehearsal to a close; tidy up; change out of our cumbersome costumes and file off into different directions. Everyone except for the three of us: Michael, Abbas and me.
I suggest we go for dinner somewhere local to Bond Street. Abbas texts his wife, Leila. He won’t be home for dinner. She has made “abgoosht” (an Iranian delicacy of meat and soup) which we gather is his favourite. I feel an overwhelming sense of guilt. He assures me that the abgoosht will taste just as delicious when it’s microwaved tomorrow night. There are very few places that aren’t exorbitant around Bond Street so we head back towards All Soul’s Church, near the BBC’s Head Office, and find a table inside Pizza Express. Abbas orders a pepperoni pizza because his wife isn’t there to tell him not to; I have a chicken salad and Michael has a pizza Fiorentina. At least he remembers his favourite food. He eats the fried egg with a dessert spoon. When he’s about half way through this humungous pizza, Michael goes to the Gents. I take the opportunity of giving Abbas a truncated version of our lives and how Michael has started to affect them. He scolds me for not confiding in him before. I’m not sure why I didn’t. People will understand. We order coffees and ask for the bill. I offer to pay for the three of us but Abbas is too much of a gentleman to accept so we split it. Michael produces his black leather wallet and removes his debit card. The waiter brings over the PIN machine. Michael goes through the motions of keying in the required numbers; but they don’t work. He tries three times. He says it’s a new card but I know that it isn’t. I am a little embarrassed by his swearing but the waiter thinks it’s amusing.
After this fiasco, we make our way back towards Bond Street. Michael tries to persuade me to take the tube with him; it will be quicker. I feel as though I should accompany him but I can’t bring myself to. I haven’t been on the underground since 7/7. As a concession, I escort him to the entrance of Bond Street and manage to walk down the stairs to the ticket barrier; this is as far as I can go. He is angry with me and seems to have forgotten about my phobia. He says I should grow up. His voice is loud and I am embarrassed by the attention that we have attracted. I can already feel my heart beating faster and a full-blown panic attack coming on. I have to get out of there.
I almost jog back to my bicycle (currently chained outside the school building) and struggle to move the numbers on the padlock into their correct position. I need to clear my head. I’m breathing rapidly now and gulping in too much air. My mouth is inexplicably dry. I start to feel dizzy and faint. I still can’t align the numbers on the padlock. Everything looks a bit fuzzy. I’m desperate for a drink but my rucksack and water bottle are in the office. The building
is alarmed and I don’t think I can manage the code. This is not the first time I have had a panic attack since 7th July, 2007. I have had copious hours of counselling. I have been taught numerous strategies for circumstances like these. I know that I have to concentrate. I have been taught what to do. I won’t be defeated, especially outside my own school building. Not here.
The first thing I do is slump to the pavement. I know that if I don’t, I will collapse, despite having just eaten. I’ve been taught to focus on one thing such as a lamppost or a shop. I concentrate on the red post box opposite our school. I breathe in very gradually. I breathe out very gradually. Inhale. Exhale. Focus on the post box. Look at the man walking past it. Keep breathing. In and out. In and out. I slow my breathing right down. I am not having a heart attack. It’s just a panic attack; this won’t kill me.
I will be all right.
I know that I am all right.
Panic over.
Michael is home before me. He is in a good mood. There are several letters still on the door mat. One of them has a light blue NHS franking mark on the envelope; it’s addressed to him so I recommend that he opens it. It’s confirmation of the MRI scan with a follow up appointment with the consultant, Mr R Patel. But the letter instantly angers and ignites his temper like a ravenous wolf deprived of food. The sudden change in my husband’s temperament is distressing; it takes me completely by surprise. He has never been a volatile sort of man. He has spent his life being calm and composed; it has been his trademark throughout our marriage. And I loved him for it. I do love him for it. He is still alive. Part of him is. I already feel as though I am grieving for Michael. He is slipping away from me day-by-day. The tide is coming in. Fast. It’s relentless. It never goes out. I am like King Canute, the Danish King of England. Like him, I know that I can’t hold back the waves and that saving Michael from the onslaught is an impossible task. No one should have to endure the mental and physical anguish that dementia brings. No one.
He screws up the offensive letter and hurls it at me. I pick it up off the floor in total silence. I don’t berate him. It’s not him; it’s the condition as we have been calling it. I repeat to myself: Michael is not a violent man. Michael would never hurt me. I can’t pretend that I don’t feel threatened by my own husband. He looks unkempt. Overbearing. Dangerous and wild.
The rate of my breathing increases and I instantly recognise the signs of a second panic attack coming on. This time, I stumble towards him, hoping that he will catch me in his outspread arms, just as he used to do when playing with our children. He was such a lovely, hands-on father. He always tried to make up for the late evenings by reading the twins back-to-back stories or teaching them how to do acrobatic dives in our local swimming pool on Saturdays. He was a great father and a loving, supportive husband. I keeping finding myself using the past tense.
There is no comfort or peace here. No sign of my loving, loveable husband. Michael’s anger is unrelenting. I am bashed and battered repeatedly on my chest, arms and head. He is bellowing at me with his deep, gravelly voice. I used to find it attractive. Now I find it menacing. He can’t stop himself. He continues to pummel me as if I were a punch bag. I stumble onto the kitchen chair which promptly over turns. There are spots of bright red blood on our tiled white floor. I am breathing too quickly now and can’t get a word out. He tells me that he hates me. He wouldn’t treat me like this. I don’t know what I have done. I don’t know what more I can do. I can’t argue with him. I still can’t speak. I just lie on the floor and surrender my body to his abuse. He kicks me in the stomach and the thighs. I put my hands over my face. I can’t go back into school with visible bruises. Is this my new life? Is this how it’s going to be for the next six or seven years?
I need help.
He needs help.
This can’t go on.
Chapter 7
Telling the Twins
It is nearly the end of term; the festive decorations are up; the enormous tree has been decorated and the pantomime is almost upon us. We seem to be hurtling towards Christmas.
But Michael has his MRI scan this afternoon and I really have to be there. I have reorganised my day and set cover for my lessons. It’s nearly the end of term anyway. My parents have agreed to stay in our house for a few days. They have their own set of keys and I remind them of the alarm code (though lately we haven’t been using it). They’re taking the train down from Hove as the parking here is impossible. They will stay in either Olivia or Eddie’s room or both. They assure me that their support will be without limits. This is well intentioned but I know that I can’t lean on them forever. They lead busy and fulfilled lives. They don’t spend their days sleeping in deckchairs on the pebble beach. We have spoken almost daily. I can’t believe how lucky I am to still have such energetic parents. Michael only really has me. And the twins.
My parents tell me that I can’t go on lying to the twins. What if Michael doesn’t recognise them when they come home in January? Danielle phones me from her mobile. She suspects that Michael’s illness started at least a year ago, if not more. He has been covering up his mistakes and we have been making up excuses for him without realising it. She’s probably right. His deterioration seems too fast. But we have been told that his early onset dementia is particularly aggressive. The diagnosis is utterly devasting.
The MRI scan is at 3 pm at The Royal Free Hospital. I am dreading it more than Michael. Despite his reaction to the NHS letter, bizarrely, he sees the appointment as an activity, something to do, an outing. I see it as an inconvenience, a nuisance, a chore. I am also depressed, anxious, moody, stressed, exhausted and lonely. I can’t wait to see my parents. I text my closest friends and tell them that we need to talk; I don’t say what it’s about though. They’re all mystified and wonder why I have been avoiding them.
Michael is offered a sedative. I remember wishing that I had taken one when I was in the cylinder a couple of years ago. We’re told that the MRI scan will take half an hour. He should keep his eyes closed. If he has a panic attack (I tell the radiologist that that’s my area of expertise) the process will have to start all over again. Not only is this stressful but it is very expensive for the NHS. We are told how the magnetic fields work and how they focus on radio waves to detect hydrogen atoms in tissues within the body. I have no idea what this means. But I do understand this part; that they also identify conditions such as strokes or brain atrophy; this is what they’re looking for by way of reconfirming the diagnosis. We have the diagnosis. It’s not going to change. This is just the icing on the cake, the tip of the iceberg, the nail in the coffin… The MRI scanning machine is belligerently noisy; it’s louder than a pneumatic drill. It’s clearly upsetting Michael, even though he has earplugs and headphones on. I can see his legs twitching and his feet moving from side-to-side. He is told to stay still. I sit next to him; hold his hand; squeeze it and comfort him. He can’t really hear what I’m saying but he knows that I am there. I’m there for him but he’s not really here for me. I know it’s not his fault. Sometimes I forget this. I am only human, and an imperfect one at that.
When it’s over, I remind Michael that my parents are coming to stay with us. In my opinion, it’s not a moment too soon. I am desperate. He has always had a good relationship with them though in truth, I think my parents would have preferred a southerner. I am not sure why. He calls them mum and dad not Sheila and Henry. We pop into the M & S next to the hospital and buy semi-skimmed milk, a few apples, a loaf of brown seeded bread and a Victoria sponge cake. My mother won’t partake of the cake. My father will. Michael carries the shopping bag and we walk back home. We don’t own a car at the moment– we rarely used it when we did – but Michael has been barred from driving since the formal diagnosis. Not that he cares about this. But I care. We had talked about buying a small car for the twins to practise on. I think it’s important to be able to drive. This is probably going to have to wait, like everything else at the moment. I feel as th
ough my whole life is on hold.
Once home, my parents bustle around. My mother has bought a bag full of food and my father has bought a couple of bottles of wine from our corner shop. The orange price-tag is still on the bottles. He has totally overpaid. But he can afford to, at least. As we walk into our house, they warmly greet us. I put the M & S food bag onto the kitchen table and immediately hug both my parents, one after the other. I don’t want to let go of them. Sophie, Sophie, Sophie. I’m Mrs Boswell at school; mummy to the twins and nameless to Michael. It sounds strange to hear my name; it almost feels as though it belongs to someone else now. My father kisses the top of my head, just as he did when I was a child, and embraces me. I try not to flinch as he squeezes my tender wounds. It’s as if I am eleven years old and it’s my first day at my secondary school. He has shrunk a bit but he’s still well over six foot tall. He has a lovely thick head of soft snow-white hair which I think makes him look distinguished. He’s not unlike David Attenborough, only younger. My mother is still pretty. She has high cheekbones and bright blue eyes. She’s vain and takes good care of her appearance. She has silvery grey hair in a bob. She doesn’t look her age: mid-seventies. Despite all those walks on the sea front, her skin has fared pretty well. I wonder if mine will too. I’m a total mix of my parents. I love having them to stay. I haven’t lived with them for years but we have had frequent holidays in their spacious house in Hove. The twins love it by the sea. I close my eyes and picture one of our summer holidays in Brighton and Hove. The past feels so unlikely now; it’s as if it were a complete fabrication.
Imprisoned by Love Page 8