When I wake up at 6 am the house is still quiet. I need fresh clothes. The darkness cloaks my figure as I creep into the bedroom. I am almost successful, clutching a bundle, when Michael thinks I am a burglar. He is out of the bed so quickly that I realise that he hasn’t been asleep. It’s me. Don’t touch me. He knows me and yet he doesn’t know me. I am too exhausted to put up much resistance. The disturbance wakes up Olivia; her room is closer to ours. Eddie can sleep through anything. She rushes up to our door, trying to wedge it open with her bare feet. I don’t want her to come in. She doesn’t have to witness this. But Olivia and I are very close. She is as protective of me as I am of her. Stop it, daddy. Stop it. I think the word “daddy” brings him to his senses. He is paralysed with shame. I am paralysed with fear. Olivia grabs my wrist and yanks me out of the room, away from her motionless father. My bundle of clothes falls to the floor. He holds his head in his hands and howls; it is the sound of a wounded animal. I can’t leave him like this but I can’t think straight. I am too worn out. It’s not you, Michael. It’s the dementia. None of this is your fault. But I fear my husband in this altered state more than I fear the underground. He has no control over his temper. He is explosive and volatile. The kind and gentle man whom I loved for many years is no longer in his body; he has all but disappeared. The howl becomes a cry. We all cry. I can’t believe Eddie is still asleep. I don’t want to scuttle off to work, knowing that Michael is so distraught. It is hopeless.
I have no choice. My family has to come first. I telephone Principal Peter on his mobile and explain that I can’t come into school. He offers to send a courier to pick up the marked essays and exam papers; as I said, he is a generous man. I need to set cover for the few lessons that I am scheduled to teach today. I feel as though I am developing flu. My head is cloudy and throbbing. I’m on the verge of some sort of breakdown. My to-do list has never been so long. I am trying to squeeze in appointments for and about Michael, some of which are now urgent: medical assessments; trips to the Memory Clinic, blood tests, home-help, financial assistance, his entitlement to his pension, albeit early, and so on. It is never-ending. Half-term can’t come soon enough. Olivia makes me a Lemsip; I hate the taste of the undissolved powdery bits but force it down. I don’t have time to develop full-blown flu. Michael is offended that he hasn’t been offered a yellow concoction. Everything offends him these days. We are treated to yet another rant about being excluded from the family. I can’t do anything right. I am failing as a mother and failing as a wife; this is what dementia does. It affects the whole family not just the individual. There are 45,000 people suffering from early onset dementia. I don’t want to be a member of this exclusive club.
My parents telephone the landline at 8 am Olivia picks up the phone. Her voice quivers a little. Instead of driving straight back to Sussex, Sheila and Henry offer to come over instead. We are less than a ten-minute walk from their hotel. As soon as they’re through the door, they’re both in control: meting out advice and giving us instructions. I would rather be at work, away from this middle-class version of a Mike Leigh film.
My father, who used to be close to Michael, takes him on one side to talk to him. Or rather, give him a good talking-to. It is becoming something of a habit. I know it’s pointless. Keep your northern brutish ways away from my beautiful daughter, do you hear? You were never good enough for her. This is untrue. Michael was always good enough for me. Henry says too much, most of which my husband won’t remember anyway. But it’s hurtful and unnecessary. Saturday can’t come soon enough. My mother wants me to bring the appointment forward. She is the voice of common sense. And she reminds me that the Social Worker must complete the assessment so that Michael can go into the home as soon as possible. I know she is right. What about respite care? It’s an option. Sheila (mother) offers to drive us down there. Despite Monopoly-gate, we agree that Eddie is best suited to looking after Michael today. He can escort him to the Day Centre and collect him at 3 pm when it closes. He enjoys it. It’s where he “works” now and it has become part of his new routine.
Henry and Sheila have decided. They will inspect Greenbank Care Home in Buckinghamshire with us. We will be the revamped Fab Four.
Chapter 25
Greenbank Care Home
The drive to Greenbank Care Home in Buckinghamshire takes under an hour. The large two-storey red brick building looks quite attractive as it is flanked by trees, grass and huge plant pots. Despite the winter, gardeners have ensured that there is plenty of flora and fauna on display. It makes for a good first impression. As we approach the entrance, a youngish man in a catatonic state, is wheeled out onto the drive. His mouth is open and he is drooling. It is sad to see. His wheelchair has a neck support but his head remains tilted to one side. None of us knows what to say so we just smile and say hello both to the young man and to the person pushing the wheelchair. We walk straight through to the entrance; it looks like a hotel lobby. The only difference is that there is a small kitchen to the right of the reception; everything in it is meticulously labelled: the cakes (50 pence), fresh fruit (50 pence), tea and coffee (25 pence) and bottles of water (£1). There are four chairs pushed neatly under a pine table and a small dishwasher under the sink. As in keeping with everything else, there is a laminated sign saying: Guests and Visitors: You are all welcome! I leave my parents and Olivia at the table. My father is both hungry and thirsty. He takes a piece of cake from the dish and carefully replaces the plastic domed top. It’s carrot cake. Very sickly. It is taxed by my mother and Olivia. The calories don’t count when they’re on someone else’s plate. The poor man only eats about two mouthfuls. He places £2 in the saucer and helps himself to a cup of tea and makes one for Sheila and Olivia as well. I know I won’t have time to drink one even though I am parched. It’s like the Sahara in here.
Whilst they are eating and drinking, I introduce myself to Arti; I can see her name badge, so I’m pretty sure she’s the same woman I spoke to from my office. At first, she thinks I am looking at the home for my parents. I am indignant on their behalf. I remind her that my husband has early onset dementia. We want to have a good look round, before he does, to make sure it is suitable. The woman nods her head and asks me to sign everyone into the visitors’ book. Last time, my mother signed us both in. Arti escorts me to the small pine table, where my family are sitting patiently, and hands us two brochures. Amy will be with us shortly; she will be conducting the tour. We leaf through the glossy brochures; they are full of glamorous photographs of the furniture. It strikes me as peculiar that the only pictures of people are of the staff. Everyone here is a manager of something. I turn to the back page to look at the prices; they’re astronomical. I already have power of attorney; unfortunately, it was a necessary evil as Michael can no longer be trusted with our money. But the thought of spending nearly £1000 a week on my fifty-year old husband, is jaw dropping. We have university fees to pay. I need to contact Social Services again. There may be a way of getting the Council to pay for continuous care. But I won’t hold my breath.
Amy is one of the duty General Managers (according to her badge). She introduces herself to me, and then to the others, saying all our names out loud in order to remember them. She’s a little bit younger than me – mid-forties – and is dressed in smart casual clothes. We walk through a double-door, straight onto the first corridor; it’s for the patients without dementia, as they are at less risk of wandering off. The theme is the seaside; it seems a bit out-of-place in Buckinghamshire. Even Sunny Cliffe in Hove didn’t look like this. At least Mary Nurse Ratched isn’t here in any shape or form. Amy shows us some of the rooms which are occupied by residents; they’re mostly eating lunch in the dining room which we will see shortly. All the doors are propped open; I think this is a good sign. Each room has a large single bed; a bedside table with a lampshade on it, a vanity unit/ desk with a chair, a wardrobe and an en suite bathroom. They all have flat-screen televisions mounted on the
wall; insofar as I can tell, all of them are permanently on. None of them are being watched. There are heaps of soft toys on almost every bed and armchair; it’s almost as if a kindergarten is about to visit.
We are taken to a show room next; this is at the end of the corridor instead of the beginning, which I find a bit odd, but Amy says it’s above the laundry room which is why no one sleeps in it. The room is pristine. The bed is made up with a light blue duvet, dark blue sheet and matching pillows. The walls are white but there are several seaside pictures, all framed, of famous resorts including our favourite: Brighton. There’s even a little bowl with polished stones in it. Whilst we are all in the room, I notice that Amy waits in the corridor with her clipboard wedged under her arm. She reminds me of an estate agent. We ask to see the dining room; the activities room; the lounge and also the corridor designated for residents with dementia. I don’t think she wants us to see it. The Dementia Unit is the mad woman in the attic.
The dining room is surprisingly pleasant. Even though it’s winter, and the home, like the other one, is totally overheated, the top windows are all open, allowing some much-needed fresh air in. The tables are all round; this is necessary because half of the residents are in wheelchairs, thus giving them easy access. The tables are covered in heavy-duty white linen; napkins are neatly folded into glasses and fresh flowers are carefully arranged in tiny glass vases. It gives the residents the impression that they’re staying in an upmarket hotel. It’s all very pleasant. It’s not the place that is the problem. It’s the people. Once again, almost everyone is very elderly or infirm. Michael is only fifty. There must be at least thirty residents eating their lunch in this room. There is a carefully balanced menu printed and framed on a noticeboard. The residents look perfectly content. No one will starve here. The old residents smile at Olivia; I think they’re pleased to see a young and pretty face. But I can see that she feels a little uncomfortable with all the attention. Amy senses that we have been in the dining room too long. She ushers my parents out first. She glides out of the room straight into the recreation room; it’s a long narrow room, with large windows all done one side. At least it’s bright and airy. There’s a giant Scrabble board on wheels. The residents play as a group. Words such as “lacey” are linked with “cob” and “snipe”. The words aren’t childish. As we are leaving, a small group of elderly people start assembling for the quiz on classical music. At least Greenbank is true to its words; the residents here are stimulated. Those that want to be, that is.
I am already talking myself out of sending Michael here. He is too young. And too lucid. I know he can be difficult and is frequently disorientated but he is not ready for this. My parents know me too well, and tell me to remain focused. Olivia is finding the visit an ordeal. I admit that we all are. We have to go upstairs for the dementia “unit”. Nothing is called a wing as it’s not a prison, despite all the locks, keypads and CCTV cameras. Amy asks my parents if they would prefer to take the lift. We all walk up the stairs and follow Amy along a wide corridor; this one has a linoleum floor; it is more practical than a carpet, but less homely. The walls are plastered in framed pictures of old crooners. The only one I recognise is Frank Sinatra. Most of the bedroom doors are closed; perhaps the care home is trying to preserve people’s dignity. Each door has a key on the outside (which I didn’t notice downstairs) and I wonder whether the residents are locked in at night. I am desperate to ask questions but Amy has verbal diarrhoea. I have already made up my mind that Michael isn’t going to come here so I am only half-listening.
One of bedroom doors is slightly ajar. As the rest of my family continue following the Duty Manager, I hold back to fiddle about with my shoelace; it’s a ruse, of course. I just want to see a real room as opposed to a “show room”. A very thin elderly lady is lying in a bed with metal sides; there is no chance of her falling out. She is “watching” Peppa Pig. She also has mountains of soft toys on her bed and on the tops of the cupboards. I stop to look at the door sign; it has a black and white picture of “Lilly” with a group of other women, all in their twenties. It is almost impossible to see the old woman in the young woman. I wonder whether she has had a family; a career; a life. Her “memory box” is mounted on her door; it contains a necklace, a piece of lace, a cat collar and a wedding ring. I decide she must be a widow.
I catch up with the others. I ask about bedtime and “the rules”. My mother apologies on my behalf. Sophie is a teacher. She can’t help it. She lives by her rules. I’m simply too tired to be obstreperous and I never lower myself to answer her back in front of Olivia. Amy refuses to give me a straight answer about bed times. She says there aren’t any. I find this hard to believe and am appalled that the evening meal is served at 5.30 pm We walk past the hair salon; it’s unisex though I can only see women in it. I ask about shaving, as this is something Michael finds difficult to do now, let alone in the future. She tells us that this is all taken care of under “personal care”. Toenails are cut too. I am finding the “home” too hot. I am so sleep deprived that the combination of exhaustion and temperatures synonymous with Death Valley in Nevada, don’t bring out the best in me. We end the tour in the main visitors’ lounge; it is enormous, well-furnished and once again looks like a hotel. I am half-expecting to take afternoon tea here. I am desperate for some fresh air. My mother signs us all out.
We walk around the perimeter of the building; it has a beautiful aspect with a golf course nearby. My father spots a little village pub in the distance so we walk towards it and decide to have a late lunch there. It’s called The Goat and the Kid. The contrast between the warmth of the home and the coolness outside is welcome. Although it’s not all that cold, even for January, the pub has an open log fire; there are heaters in the corners and there’s a general buzz of happy weekenders eating chilli con carne and drinking pints. We find a table in the corner. My mother doesn’t think Greenbank is preferable to Sunny Cliffe in Hove. My father is the most optimistic of the four of us. Once again, I find myself thinking that an in-house carer, even one for the day and one for the night, might be the lesser of two evils. Whilst we’re in the pub, I Google some specialist agencies and fill in my contact details. If Michael isn’t ready for the care home options, we need to make our home a more caring place.
Chapter 26
Agency Staff
It’s almost half-term and despite everything, I have managed to come into work almost every day this month. February is much more depressing than January. The sales are over; it’s significantly darker and colder; everyone is tired and no one wants to be here, except for me. It’s my Escape Room. Principal Peter has decided that everyone would be cheered up by an impromptu Valentine’s Day school disco. It will be held on Friday, 14th February, just before half-term. The Sixth Form have been tasked with selling the tickets; they will cost £5 and will include one drink (soft) and plenty of food. The school will subsidise the party. Teachers have a free pass. We need some sort of adult presence.
I congratulate Principal Peter on his inspired idea; after all, we haven’t had a party since Halloween. Everyone is on their knees. My non-teaching friends still don’t understand why we are shattered after only six weeks. For the first time since Michael’s diagnosis, I am on top of my workload. This wouldn’t be possible without our wonderful new live-in help. Her name is Kathleen and she’s a retired nurse from Dublin, grateful for the opportunity. I pay her £400 a week which his £600 less than the care home. She has a sister in Kilburn whom she rarely sees so this is ideal for her. We can’t be more than two or three miles from the main high street. She is tactful, robust and takes no nonsense from Michael. She is my Mary Poppins: practically perfect in every way. The cynic in me thinks she must have a flaw but I haven’t found it yet. Obviously, Eddie and Olivia have had to move back to Sussex but they were ready to do this. They will be off travelling again soon. When Kathleen arrived, I let her choose between Eddie’s room and Olivia’s. She intuitively kne
w that I wanted her to choose Eddie’s. Besides, I don’t think she wanted to sleep next to our room. I am not sure whether it’s because she wants to respect our privacy or whether she wants us to respect hers. A locksmith has fitted locks to all the bedroom doors, as she requested.
I am still at school, pretending that everything is normal. I hope that Fran and Freddie will be able to come to the disco. Their attendance has been remarkable; better than mine overall. And the baby twins are doing very well. Fran’s mother has proved to be a doting grandma; no one expected this. I need to piggy-back other people’s happiness at the moment. Most of the Sixth Form have bought tickets for the disco, as have Years 10 and 11. Years 7 to 9 are only allowed to come for the first two hours so they will only pay £1. All the profits will go to charity. The Sixth Form are somewhat over-familiar with me. I don’t mind. It’s a relationship built on a mutual trust and respect. They never forget that I am their Deputy Head. But I am asked whether I am bringing my husband to the disco. God no, I say, and then regret my reaction; it’s so telling.
I cannot unsay what I have just said. Rumours fly around the school that I am getting a divorce. Even Abbas asks me if the rumour is true. I know that my marriage is dead in the water. It’s a total sham. I don’t know who Michael is anymore and he certainly doesn’t respect me for who I am. I have one free lesson (out of eight) so I take the opportunity of telephoning Kathleen. She can’t speak because she’s in the Royal Academy with Michael. It is a few minutes from school. I know that I sound churlish but I give clear instructions that Michael is not to be brought here. I make this very clear.
Imprisoned by Love Page 17