in which I launch a daring daylight raid on the care home and, to my surprise, meet little resistance in liberating both my mother and her rather splendid orchid…
It’s homecoming day.
Can you believe it? I can’t. But there it is on the classic motorcycles calendar bought from the pound shop and pinned to the side of the cooker…The twenty-seventh of April. A date for so long, so far away, a date that had become simply another illegible scrawl amongst all the appointments and visits from social services, occupational therapists and all manner of health professionals of one kind or another. Now, it’s here. Today, this afternoon, at two o’clock, after the care home lunch, I will bring my mother back to home to the bungalow she once shared with my father. The bungalow that was her home before she went into the care home three long years ago now, a place that was for her, purgatory and exile.
I’ve booked a specially adapted black cab to transport my mum. The little red Honda I’m driving will take her things but you’d need two people to move my mother’s dead weight from wheelchair to car seat. That might be okay at the care home, but here at the bungalow it’s just me. Just me. And soon, her. You’d think, wouldn’t you, that after six weeks to prepare I’d be ready to receive my charge? And, I am, I guess.
What I mean is, I’ve done everything I can to put what we might need in place, but with so little experience to go on, I can’t be sure. I’ve told those in authority what I’m doing and asked for help from those who have resources, one often leading to the other and back again. Social services, so dubious about the plan at the beginning, have become supporters, especially since they’ve understood we’re self-funding and won’t be asking for money. In my defence, there have been some significant challenges. Finding a care agency willing to work alongside me has proved surprisingly tricky. Linda and her team, who had looked after my mother in the years leading up to the care home and then my father until his death, have already said no and tried hard to dissuade me from taking on the role, for my sake as well as my mother’s.
I’ve made a dozen enquiries of other agencies and it’s been a frustrating exercise. It just hadn’t occurred to me that demand so outstrips supply, and I’ve ended up attempting to persuade commercial agencies we’re viable clients with ready cash willing to compromise. Because she is unable to move independently, even to turn herself in bed, my mother’s physical state is the primary obstacle for most of the agencies. Many I’ve approached simply don’t take clients who require hoisting and manual handling. Their carers don’t have the training, or so they tell me, though I get the impression they don’t need or want to take on such an onerous client. I’ve made matters considerably more difficult for myself by insisting that I want to be directly involved in the care.
There are two good reasons why I’ve done so, and a third if you include sheer ignorance. The first and most important is the whole notion that my mother should be cared for by those who love her and who are familiar to her. She had caring strangers in the care home. Now she will have caring family, a tad incompetent perhaps, but with shared memories and a personal connection. The second, rather more prosaic reason, is we’re short of money and what there is will go further with just one professional carer visiting each day at set times. Finally, after many calls, I have found an agency that will work with me on condition I take myself on a manual handling course to protect their liability should anything go awry. Perfectly reasonable. The course took an hour and a half and now, with my certificate in hand, I look forward to becoming a key member of the team for the first official care visit today, at 6.30pm.
But I can’t think that far ahead, and, I’m pacing again. The hospital bed, metal framed and wheezing gently as the electric motor pumps air through the mattress, is positioned against the dining room wall beneath a cabinet still full of crystal glasses and spare plates. Of course, the dining table had to go and has been dismantled and sits forlornly in the garage, legs bundled together and laid on the concrete floor like a kidnap victim, where once the red Honda was cosily parked up at night. My father would turn in his grave, or at least shuffle in the cupboard. With the advice of a district nurse, I’ve ordered incontinence pads, blue, super-absorbent for the night and yellow for the day, and put some of each in the bedside cabinet I’ve taken from my mother’s bedroom to hold medications and creams and hairbrushes and even a lipstick, just in case. I may have over-ordered on the pads, as several cardboard boxes are stacked in the garage alongside the table, enough to last for months, at least to my mind, but I’m told we may be changing my mother three or four times a day and running out would be a problem as a new order takes weeks to arrive. I write a reminder on the motorcycle wall calendar, just in case.
So, trial and tribulation behind us, the scene is set and awaits the star of the show. I’ve cooked a homemade lasagne for tea or supper with as much love as I could muster and in sufficient quantity to last us both a few days, just in case. I’ve bought some jars of baby food, stewed apple and so on, some yoghurt and plenty of soft fruit, because I don’t know what will work best with her dysphagia. I’ve got soups and buckets of ice cream for the same reason… When I check the kitchen clock, I see it’s after twelve. I should go.
Well, this is it, d day has finally arrived, i’ve packed up some suitcases, though actually this morning the sun is shining…so first job, just to go along to the care home and pick up mum’s stuff, and break the news to her that, well, today’s the day she’s going home… i have to say i have no idea of whether she’s going to miss her husband, whether she’s going to be comfortable at home, whether she’s going to be entertained, so i do feel at risk, i do think it’s a difficult thing to do, it’s just the alternative is so much worse, i mean to leave her there just seems criminal to me. even though i’ve had all the warnings, you can’t do this, you’ll ruin your life, so on and so forth, this is not an act of self-sacrifice, it’s just a rational thing to do, i mean my mother is ill, but she’s not dead, and the fact that the the dementia and the Parkinson’s make it difficult for her to respond to people doesn’t mean there isn’t a great deal going on beneath the surface. I punch the code in and push open the front door to find the reception desk deserted, as it often is at lunchtime. I hesitate before going into the day room, suitcases in both hands and one under my arm, glancing towards the manager’s office that appears to be dark and empty. I’m thinking I should be engaged with some kind of formality before retrieving mother. But there’s no-one to tell me what to do .
I go through to the orangery, the day room for residents. My mother is in her usual chair. I sit next to her. I want to tell my Mum about the plan for the big day, but she’s starting to cough… One thing i’d like to do is get rid of that cough…hmmm? i’m going to start packing up…don’t die on me now, that’d be terrible, only just managed to get you out… Hello how are you? hello…she’s going today yeah? yeah…i’m just going to start packing up some things… do you want us to help you, we can do it? i don’t know, as you wish… where is the bag, i can pack it well, i’ll go and get them, they’re outside yeah, yeah, please okay… There’s a taxi… hmmm? Yeah, the taxi’s coming for you, so we can put you in a wheelchair and put you in. isn’t that strange, i kept promising you and promising you and now the day has come…that’s quite exciting isn’t it, this will be your last lunch here…i don’t know how you’re going to find my cooking… I will leave you now…if you want anything, we’re just downstairs… okay, thank you.
I’ve seldom been in her bedroom before, which may seem both bizarre and negligent; maybe only twice, once to move her in and once when I visited and she was not well and had stayed in bed for the day. I try to put those thoughts out of my mind…there’s nothing especialy unpleasant about the room and nothing even remotely personal or homely. I blame myself for that too. Apart from the radio by her bed, which I had hoped would be some comfort and which I notice is unplugged with the aerial folded away, I’ve done so little over the years to make this room hers. And all at once, I feel a terrible pang of guilt. Why not? I’ll pack up quickly. On the broad window cill there are photographs in frames. My daughters, me, my sister and one of the whole family, including my father and my ex-wife. It was taken on a day out to Windsor Great Park many years ago now, when the children were small and I was still married and my father was still alive. We all look surprisingly happy.
I lay the cases open on the bed and folding the clothes without much care, knowing I’ll wash everything when we’re home. There’s permanent marker on every single item bar some dark socks with the room number, thirty-seven, and my mother’s initials. Seeing those letters and numbers, it occurs to me I may skip the washing and throw the whole lot away. Well, that’s it pretty much, it’s surprising how little there is here, clothes, nappies, several pairs of shoes, a few used up toiletries, and an orchid, an orchid in the window which i bought, i don’t know, two years ago i maybe and the nurse was just telling me just hasn’t stopped flowering ever since, just keeps flowering and flowering, i was going to leave it here but i’m tempted to take it back actually, it seems to be somehow a symbol of her fight for life or something, who knows, you can get sentimental with these things, but pretty much that’s it, so i’m just going to load these bags up in the car and then go and see her again…
I make a check of the bathroom, close the cases and ferry them to the car. I take the magical orchid and put it carefully on the passenger seat. I hope the move won’t disturb the karma. I’m feel I’m going to need it. I bring back with me a large cardboard box with a variety of goodies inside and put it on the bench in the still-deserted reception. There are two dozen twenty-five centilitre bottles of wine and dinky boxes of chocolates, together with a range of biscuits and sweets, sufficient to be shared amongst the many carers with, I hope, an element of choice and something for everyone. I wanted to make sure this little gesture of thanks goes to the workers and not the managers, and keeping everything small was one way to do that.
The friendly receptionist Tracy, who finally appears, appears, agrees to make sure the right people benefit. They’re playing bingo again in the day room. It’s now a quarter to two, and Mum is dozing in the secondhand wheelchair. The old armchair that was her’s for so long is now vacant. I wonder who will sit there in the future. There’s still no sign of a manager as we sit waiting for the taxi to arrive at two o’clock. I’m almost miffed. And for some reason, I’m exhausted. We sit in silence. I’ve been so preoccupied with our little drama that it only now occurs to me to look round the day room for the last time.
Three chairs down the row from my mother, sits a woman with one foot twisted grotesquely back on itself. The foot rests on a red damask footstool in front of her. She’s always in her chair every time I’ve been. But not today. Which is strange. Because she never makes the move to the dining room. Her lunch is brought to her. I’ve never seen her with a visitor and I’ve not seen her make eye contact with anyone, not even a carer bringing food or drink or medication. She often has a newspaper open in front of her and appeared to be always chewing. It was only when I looked a little closer I realized she wasn’t chewing food, but forming words and chewing those, often, it seemed to me, angry words.
There are fewer men and for some reason, they seem less distinct, one from another and all from the women around them. There’s the chap in a wheelchair I took to be a visitor. Distinguished, well-spoken type. The first time I met him, he motioned me over and told me he was just going outside for a cigarette. Then he leant closer to whisper, “Rather depressing here isn’t it? Poor old buggers. This is it for them.” It was only later I found out he was not a visitor, but a resident. And he was not allowed to smoke at all, inside or out.
Then there’s Daphne, who sits some distance away from us in a wheelchair. She has bright eyes and a habit of sucking in air through her teeth with a wet sound as if she’s salivating. Often, I’ll pass close to her as I take one of the spare chairs stacked against the wall and as I do so, she will smile and say a coquettish, ‘Hello,’ an impression only confirmed when she once added, “My, you’re a big boy.” Margaret, she of the fabulous Irish lilt and now a hundred years old, is in her own chair calling out, “Nurse! Nurse! What should I be doing?” to anyone passing by, visitor, resident, carer, as she always does, all day, every day. I’ll miss Margaret the most. I don’t know if my mother will miss this place, but very oddly, I realise I might.
Say goodbye darling, it’s the last time you’ll be here. I’m going to say goodbye …so we’ll see you again, alright? take care… Thank you for everything. tracy’s got some gifts for you, the girls are just writing out the meds for me cause it’s a bit complicated for a simple bear like me … we’ll leave them playing bingo, cheerio dorothy, nice to see you, bye, bye elaine, thanks a lot… Thank you ladies so very much, can i just steal that pillow off you, sorry darling but that’s rhoda’s and you can’t take that with you…of course…there’s a list of everything that’s in there. alright? time and everything. fantastic. all the best, love, all the best, bye…
Isn’t the sunshine lovely? i’ll just go and open up the house my darling…i won’t be long, two minutes… Are you still there? That’s my girl! well, just scoot past this chair…you’re leaning all over to one side…uncomfy i think are you? i’ll get you a cushion when we get in so, do you want to be out or in? out i think… out? Okay, i won’t put you in the full sun, let me get you a cushion to sit you up a bit straighter there, such a bad job, i’m going to have to learn how to do this, eh? mmmm… hello gorgeous, i got ya! i got ya!
Next time, join me and mum for our first afternoon together, our first care call, and our first incident…though you’ll find I’m still coming to terms with finding letters amongst mum’s things, just three or four, but the most recent only a couple of weeks ago…turns out they’re all from my former lover and partner, she whose son I displaced, a woman I haven’t heard from for many months, not since we broke up when I was still in France. But I’ll tell you more about those next time…