the white handkerchief

As diagnoses go, it sounds pretty gentle. Mixed Dementia. Like a mixed fruit salad. Mixed bathing. A bag of mixed nuts. Casual, essentially benign.

There’s nothing benign about Mixed Dementia, though. Its devastating effects would be more aptly described as Dementia Plus, or maybe Dementia: Perfect Storm.

Joe has Mixed Dementia. To date he hasn’t been too bad, functioning at a reasonable level. Although he’s permanently confused, he tends not to get agitated. Most of the time he sits neutrally and quietly in his favourite armchair, going along with whatever his wife Joan wants him to do. He’s been able to mobilise reasonably well, steady enough on his pins for Joan to manage washing and dressing him on her own. He’s barely on any medication, so that’s not been too much of a problem either.

Unfortunately – for Joe, Joan and the rest of the family – his condition has taken a downturn, particularly his mobility. There’s a Parkinsonian aspect to it these last few weeks. He lists alarmingly to the left when he stands up, leans back to compensate, and if that wasn’t enough, his left leg gets stuck when he tries to move forwards. The result is that Joe’s been falling every day. Luckily for Joe he’s avoided hurting himself; unluckily for Joan, he landed on her a couple of weeks back and fractured some ribs.

The last fall was this morning. An ambulance attended, checked him over. His obs were as steady as ever. (‘He’s fitter than me’ says Joan, dabbing at her eyes with the white handkerchief embroidered with flowers she’s been playing with all this time. ‘Aren’t you darling?’ – Joe directs his grey-blue vacancy in her general direction; they share a hesitant smile; she loses herself in the handkerchief again). There wasn’t anything acute that needed hospital admission. The ambulance crew liaised with the GP, and then the GP referred Joe to us to see what we could do.

The obvious and most immediate thing is to get Joe a respite bed in a nursing home. The trouble is (always the rider these days), he needs an assessment by social workers first. They’re short-staffed, so a delay of a few days even for priority cases is unavoidable. Then, as Claire the duty social worker explains to me, there may not be any beds available. ‘Not much capacity in the system at the moment,’ she says. ‘Best case scenario – a week, maybe two.’
She sounds exhausted.

I’ve spoken to the GP. He tells me there’s been a multi-disciplinary meeting (the outcome of which hasn’t been communicated to the family yet, helpfully). The consensus is that Joe’s mobility problems are symptomatic of his worsening dementia. ‘It’s a palliative scenario,’ says the doctor. ‘And really, if his care is no longer tenable at home, we’ll have to start looking for a residential placement somewhere. We just need time to make that happen.’ We agree that our service can try setting up a micro environment to minimise the falls risk; to send in carers four times a day – for moral support if nothing else; a night-sitter at night to give Joan a break; nurses to keep an eye on things, and generally case-manage until the social workers can come up with a placement.

I’ve put this plan to the family. It hasn’t gone down well.

‘Look at us! We’re at breaking point. Honestly – this is hell,’ says Emma, the daughter. Her face is puffy and her eyes red. She’s struggling not to cry, especially now that Joan has her face buried in the handkerchief. ‘Look at her!’ she says. ‘She’s done her best but she’s at her wits’ end! We can’t go on like this.’

As gently as I can I go over the options, which at this point seem to boil down to two: stay at home with whatever support we can offer, buying the social workers time to find a residential placement, or go to hospital.

‘And sit around in A and E for hours?’
‘I’m afraid so. That’s where everything’s triaged.’
Emma looks at her mum.
‘This is what you get,’ she says, bitterly. ‘You struggle through. You take care of things as best you can. And no-one cares. No-one’s there for you. Maybe Dad needs to have a bad fall and really hurt himself, and then maybe someone’ll listen.’
‘I don’t want Joe to go to hospital, but I can’t cope with him anymore at home,’ says Joan. She gives me a despairing look. ‘What would you do if this was your dad?’
‘I don’t know. I’d try to think what was best. It’s hard to say.’
She sighs, then directs her attention back to the handkerchief.
‘What would you like to happen, Joe?’ I say, leaning forward and stroking his hand. He says a few random words, but it’s impossible to know what he means. His tone is light and disengaged. At least he’s spared the emotional trauma of all this.

I’ve been here two hours already. I’ve spoken to the social workers, the GP, the nurse in charge back at the hospital, but despite all the facts, all the reassurances and negotiations, the essential problem remains.
‘Okay,’ I say. ‘I’m sorry this has been so difficult for you. Something needs to happen now, so let me make the decision for you. Joe isn’t safe here at home. He’s highly likely to fall again, regardless of the things we might manage to put in place. I can see how exhausted you both are. It’s a terribly stressful time and I think you’ve done a wonderful job. Going to hospital isn’t ideal, but it’s the safest option. I’m going to call for an ambulance to take Joe to hospital on a four hour response. At the very least that’ll buy everyone some time to rest and get things sorted. Okay?’
I pick the phone up to dial.
‘Is the patient conscious and breathing?’ says the call taker.
‘Yes,’ I say, smiling at Joe.

Joan buries her face in the handkerchief again.

a tough gig

Turns out, Miriam’s down to Assist the Co-ordinator this morning. She waves me over as I pass through the office, scattering good mornings as methodically and benignly as an Amish farmer sowing corn.
‘They’ve put me down to do an early care call as well,’ she says, looking flushed. ‘I mean – I’m good, but I’m not that good. I can’t be in two places at once! Everyone else is full, so it looks like only me or you that can do it. I’m more than happy to go if you want to hold the fort here a couple of hours… just as happy if you want to take the job… totally up to you. What do you think?’

The truth? I don’t need to think, but I make a polite show of it. Assisting the Co-ordinator sounds easy enough but it’s actually a pretty tough gig. It doesn’t matter how resolved you are at the start to be organised and Zen Master about the whole thing, barely half an hour later you’ll find yourself with a mobile clamped to one ear, a landline playing loud psycho-electro on-hold music in the other, three people hovering close by, checking their watches, stress-paddling foot to foot, someone else waving a piece of paper over in the Hub…. and then you’ll sigh, and hang up the landline, take a swig of coffee instead, and find it’s grown a skin.
‘It’s okay. I’ll do it,’ I tell her.
‘Are you sure?’ Miriam says, a desperate look in her eye.
‘Don’t worry. Happy to help.’
I take the details.

It sounds straightforward. Charles is an elderly patient who’s going into respite for a few weeks to give his wife June a break. He needs a care call first thing to help him get ready for collection by ambulance. As soon as I’ve picked up my other jobs for the morning, I ring their number. It goes to voicemail. I leave a message to apologise for the early call, and to say not to worry because I’m on my way and I’ll be there by half past eight at the latest.

It’s a bright, zesty drive out to their address, a neat red-bricked block on the outskirts of town. There’s a truck parked outside. Three workmen are busy putting scaffolding up, making a stunning amount of noise – pneumatic drills, banging, shouting, laughing, a radio on full volume in the cab. The workman at the top of the scaffolding, hanging on by one hand, actually throws back his head and howls. It’s all so loud and violent, even though I press my ear to the intercom I can’t hear what June says. The door clicks regardless. I go in.

The thickly carpeted hallway is so quiet by comparison with the racket outside my ears actually whine. I walk up three flights of stairs, then knock. After a long pause, June opens it. She’s tiny, frail as an old sparrow in a housecoat and slippers, blinking at me with her head slightly to one side whilst still holding on to the door.
‘Can I help you?’ she says.
‘Oh!’ I say. ‘Good morning. I hope I’ve got the right address. I’m Jim, from the Rapid Response team. I’ve come to see Charles.’
She stiffens even more, glances down at my ID badge.
‘To get him ready,’ I say.
‘What do you mean? Get him ready? What for? Who are you again?’
‘Jim. I’m a nursing assistant. From the Rapid Response.’
‘I’m sorry but I think there’s been some mistake.’
‘They asked me to come and help Charles get dressed. Before the ambulance arrives.’
‘I don’t think the ambulance will be coming,’ she says.
‘No. I wouldn’t think so. I’m sorry, but I think you’ve had a wasted journey. Did the nurses not tell you?’
‘What nurses?’
‘The nurses who were with us all last night. When Charles died.’
‘I’m so sorry.’
She stares at me, blinking rapidly.
‘Yes. Well,’ she says.
‘And – how are you – bearing up?’ I say, pathetically.
‘It’s early yet,’ she says. ‘But I’ll be fine. I’m sorry you came all this way.’
‘No, no! I’m sorry to turn up like this. That’s awful. I’ll make sure everyone else knows.’
‘Could you?’ she says. ‘That would be kind. Well – goodbye, then.’
And she quietly closes the door.

Outside the workmen are as furious as before. The one who was howling at the top on my way in is now leaning right out, shouting for a particular clamp.
‘Not the three four, you wingnut! The five n’alf! Ye-es! That one, Rodney! That one! Jesus Christ!’
It gets chucked up to him, and he catches it just as it slows, ready to fall back to earth.
‘Halle-fucken-lujah!’ he says, then swinging round again, gets back to his hammering.

bibi the bird

Melvin is as landed and unfortunate in his armchair as a hippo in the dry season. An affable hippo, though, in a taut, custard yellow, California Dreamin’ t-shirt and grey jogging bottoms, his enormous hands restlessly picking at the padding of the arm rests, as if he’s gauging the right moment to tear them off and throw them.
‘What were you saying?’ he says. ‘I lost the thread.’
He laughs, exposing a few raw and stumpy teeth. If I had a head of cabbage I’d chuck it, watch him crunch it down, waggle his ears.
‘He does that a lot,’ says Bibi, Melvin’s wife. ‘Lose the thread, I mean.’
If Melvin is the hippo in this relationship, Bibi is the little bird that rides on his head. A trim, quick figure, she’s constantly up and down, repositioning cushions, fetching beakers of juice, a towel, a diary, a snack, another beaker of juice. She smiles at me and surreptitiously touches the side of her head, turning the gesture into an innocent scratch of her eyebrow when Melvin unexpectedly glances her way.
‘So what’s the plan, chief?’ says Melvin. ‘What’re you going to do with me? Drag me off to the knackers yard, I ‘spect. I’d make a lot of glue. ’
‘Don’t say that!’ says Bibi, jumping up again to move the stool so he can reposition his feet.
‘Ahh!’ he booms. ‘Thanks Beebs.’

The situation has been a long time coming and it’s hard to know where to start. Diabetes, joint damage, skin infections, kidney and liver issues – the list neatly packaged-up in the phrase comorbidities. Things were difficult enough before his latest fall, but he’s been discharged from hospital with a bandaged foot and the results of an MRI confirming mixed dementia. There’s a lot to think about.
‘Today’s a good day,’ says Bibi. ‘Isn’t it darling?’
‘Every day’s a good day,’ says Melvin.
‘Well,’ says Bibi. ‘Mostly.’

She’s doing her best to cope, but it’s a struggle. She’s already told me about his mood swings, how he’ll be fine one minute and raging the next. There’s a shine to her eyes that’s so brittle I don’t know if she’s ready to sob, scream or laugh out loud.
‘But where are my manners?’ she says. ‘Can I get you anything?’
‘No, no! That’s kind of you but I’m fine, thanks.’
‘Just let me know. It’s no trouble.’

Melvin is sitting in front of a large white blind. The blind has been pulled down to shield him from the midday sun. Now and again the shadow of a seagull glides across the blind, so clearly you can even see the toes of its webbed feet and the way it flicks its head from side to side. Down in the street some workmen have finished lunch. They’re shouting and swearing, starting up the mixer, tapping off bricks for a new wall.
‘Hear that?’ says Melvin. ‘I expect that’s the seagull, building his nest.’
We all laugh.
He clasps his hands across his belly, waggles his ears.


The three of us are sitting at the kitchen table. Charles is leaning forwards, propped up on his right hand, his fingers splayed on the magnificent bald dome of his head.
‘I know what it looks like,’ he says. ‘I know I look like a man in despair. But I’m happy. And honestly? I don’t care. It’s comfortable. That’s it.’
His wife Irene sits opposite, methodically working her way through a fat file of notes.
‘Charles!’ she says, without looking at him, licking a finger, turning a page.
‘Like I said. I don’t care.’
Behind us, two patio doors open out onto a garden saturated with colour: a fierce yellow cloud of forsythia, vivid red splodges of tulip, diminishing dots of daisies, and in the middle of it all, like the richest and most exuberantly white wedding dress, an old apple tree in full bloom.
‘Don’t even look at it,’ says Charles. ‘It’s shameful.’
‘It’s beautiful.’
‘Are you a gardener?’
‘We’ve got a garden. I get out sometimes.’
‘Hmm,’ he says. ‘As soon as I’ve finished this cycle of chemo I’ll be back. You’ll see.’
‘You rest, hun,’ says Irene. ‘That’s your job. Now look – here’s that list you wanted.’ She hands me a list of medications. ‘Good luck with the spelling,’ she says.
There’s a radio up on the counter playing classical music. The second movement of Gorecki’s Symphony of Sorrowful Songs.
‘I don’t mind telling you – this is far and away the loveliest consultation I’ve had in a long while,’ I say, listening to the music. ‘The last one, I was in this smoky, super heated flat, all the windows shut, curtains drawn. And the patient was wearing a fluffy red dressing gown, sitting on a sofa surrounded by all these creepy porcelain dolls. And she was puffing away on this fag. And they were all staring at me with the same expression, just waiting for me to faint.’
‘You poor thing!’ laughs Irene. ‘I think you had a touch of fever. But you know what? Some people just like it hot. She must be one of those. A hothouse flower.’
‘I like it hot. But not that hot. When I came back outside it actually felt cold. For a while, anyway.’
‘Do you remember when we had all that snow?’ says Charles, still propped up on his hand.
‘When was that, darling?’ says Irene.
‘Years ago. When we first came here. Or maybe not so long. It was snowing anyway. And I was walking down the street. And I lost my footing or something and I just flipped, straight up in the air, and then straight down again – flat! – on my back. So I was lying there, properly winded, and groaning and so on. And these two old woman came waddling over. They’d been chatting on the street corner, all bundled up, you know? And they came over, and they looked down at me. I can see them now, clear as I can see you. And they said: Careful. Just like that. Careful, they said.’
‘Oh darling!’ says Irene. ‘How funny!’
Careful! they said. Just like that.’
‘And what did you say?’
‘I said: Why – thank you. I’ll be sure to take your advice.’

captain! captain!

The cluttered sitting room is dominated by a large, brightly lit vivarium along the wall and two ornate bird cages in the window alcove. The canaries in the cages hop and chatter wildly as I come into the room, but the vivarium seems empty.
‘Don’t worry. He died, he didn’t escape,’ says Malcolm.
‘I’m sorry to hear that.’
Malcolm sighs.
‘Tarantulas,’ he says. ‘Not the easiest.’

Malcolm’s wife Sara is sitting with her back to the vivarium – a weird contrast, not just because the fierce light on the stones and the stark blue background throws her into a kind of unbalanced neon shade, but because she holds herself so completely still, as motionless as the tank is empty.
‘Hello,’ I say, reaching out to her. She’s so fragile, if I shut my eyes I could imagine I’d shaken the wing of one of the canaries instead.
‘The doctor was round this morning,’ says Malcolm. ‘He did some tests so we’re waiting on them. He said you’d be coming round to see what else you could do.’
We go through the story, Sara nodding in agreement from time to time but not offering much else. She’s not in pain. She doesn’t feel unwell as such. She has a few, minor, long-running issues, but nothing’s particularly worse. She’s just lacking in energy and not feeling herself.
‘Six months ago everything was fine,’ says Malcolm. ‘Well – you know. We were taking the bus up town. Going to the garden centre for bird seed and crickets. Going on holiday. We went to Lanzarote. Here’s us on the Yellow Submarine,’ he says, handing me a photo.
‘What’s that, then?’
‘It’s a submarine, my friend. And it’s yellow.’
‘Like the Beatles?’
‘You’re kidding.’
‘No. Look. It’s a submarine! It doesn’t go down far, but you get to look out the window and see all the fish.’
‘Sounds great.’
I look more closely at the photo. They’re standing side by side, Malcolm with his arm round Sara. He’s looking red-faced, sunburned, the flash from the camera making his face greasy and over-inflated. Ironically, it seems to have the opposite effect on Sara, ghosting her out. Her eyes are dark, intense, like she’s focusing on the moment the submarine surfaces again, the hatch unwound, and she can step back out into the open air.
I hand the photo back.
‘Once or twice she’s gone off and been brought back by strangers.’
I smile sympathetically at Sara. She smiles back in an approximate kind of way, shrugs her shoulders.
‘If you say so,’ she says.

the feral dream girl

‘Peter died six years ago, but it may as well be six minutes.’
‘I’m so sorry for your loss.’
She shrugs and shakes her head.
‘Oh, well. I had a long time to get used to the idea. Poor Peter. He was a long time sick, you see. But that’s all in the past. D’you know what I miss the most? The conversations we had. About the silliest things, any time of the day or night. He was a fascinating man, Peter. That’s why I married him, I think. Or one of the reasons. He would always go to great lengths to understand the other person’s point of view. His hospital bed was just there, where you are now, and I was off to the side, reading or dozing or running backwards and forwards to let the carers in, the nurses and so on. The number of people who came and went through this room. I could’ve written a book. Should’ve. And now it’s just me, sitting on my own, staring out at the birds, thinking about not very much.’
‘Do you have family?’
‘No. Not really. All my brothers and sisters are gone now and we didn’t want children. There are some nieces and nephews dotted about. I see them from time to time, which is lovely, but they’ve got busy lives and what have you and I don’t want to burden them. I don’t mind. I’m perfectly content. No – we didn’t really want children, and I never gave it any thought. I did have a strange dream about it, though. I’d fallen asleep in this chair, and I woke up inside the dream, so to speak. I could tell, because even though everything was much the same, the light was different, more – I don’t know – electric. And there was a wild infant child standing to the side of me. A girl. She was standing right there, just about where you are now, rocking from side to side and staring at me. I wasn’t frightened or anything. I just held out my hand, and eventually she came forward, and let me stroke her hair a while. Then something startled her, and she ran out through the open window into the garden, which was so thick with trees it was like a tropical jungle. And she ran off into all that, and I watched her go. But I wasn’t worried for her, because I knew she would be safe out there, among all the animals, the bears and the wolves and so on. You read about those children, don’t you? The feral ones, the ones who run off into the forest and get brought up by animals.’
‘I remember something about that. It’s difficult to know whether it’s a story or just neglect. Probably a bit of both.’
‘Yes. There is that. People often make up stories when the truth is too painful.’

making it back

The Telegraph is too big for Martha. It’s like watching a duvet blown into a small tree.

‘I don’t know why I read it,’ she says, finally giving up, bundling it into an approximate mess and dumping it on the sofa next to her. ‘It’s not like I understand what they’re on about.’
‘You’re not alone in that, Martha.’
‘Wha’ d’ya say?’
‘I say I’m with you on that!’
‘Good!’ she says, but I know she hasn’t heard. I’d love to talk to her about politics and what she thinks of the world, but Martha’s so deaf now you have to put your lips to her ear and shout. And even then the best you’ll get is a smile and a chuckle and a knowing kind of ye-es. Any important questions or requests you have to write on a pad. Maybe there’s some telepathic component to all this, though, because after all the smiles and nods and eyebrows and complicated mimes, I always come away thinking I’ve had the liveliest conversation.

Martha’s been on our books for a while now. Initially we were called in by the doctor to keep an eye on her after a recent chest infection. But then she knocked her leg somehow – probably going downstairs to fetch The Telegraph – and it morphed into wound care. I’ll be sorry when she’s finally discharged, though. She’s such good company. A hundred years old now, she segues naturally from story to story without any prompting, like Time is a screen she can see through when the light falls in a certain way.

‘We were married seventy years,’ she says as I kneel on the floor dressing her leg. ‘Seventy years! Mind you – I didn’t see him the first three. I almost didn’t see him at all. He was in the RAF. A navigator. In a Blenheim bomber. Terrible planes. Dreadful. I think the Germans liked them, though. For target practice. How poor Tommy got through it all I don’t know. One night they were hit very bad – very bad – and they almost ditched in the Bay of Biscay. But the pilot kept ‘em going and they made it back somehow. Skipping over the waves like a stone, Tommy said. Skipping over the waves like a stone.’