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.

sixty years on

‘How long have you lived here?’
‘Ooh – I don’t know. I should think about sixty years or more’ says Thomas. ‘We moved when we had Lily, and I’d got that new job. D’you remember, Lucy?’
‘Of course I remember!’ says Lucy, rearranging a napkin on her lap. ‘I was here, wasn’t I?’
‘Sixty years,’ says Thomas, absorbing Lucy’s tetchiness with a wistful shake of his head and then a sudden, gaping smile, the kind you might see on a ventriloquist’s dummy. ‘Long enough!’ he says.

It’s a beautiful old cottage – or used to be. Could be again, with a little work. Emptying out all the clutter, ripping out what remains of the fixtures and fittings, stripping back the plaster to the bricks, taking up the floor, rewiring, new doors and windows. New roof, come to that. Redecorating throughout. Cutting back the garden, and so on. An album of Before and After photographs. These things take a little imagination, but totally worth it if you can see beyond the mess. Clink, clink. Cheers!

Thomas and Lucy wouldn’t feature in any of the quotes, of course, even if the builders were game, and had a few geriatricians, cosmetic surgeons and orthopaedic consultants on the team. Because it goes without saying that the same passage of years that wreaked such damage on the house hasn’t spared the occupants, and whilst ancient buildings can be straightened out with hard work and a certain amount of cash, the same can’t be said of the people who live in them.

‘Push that button – no! That one!’ says Thomas, leaning out to interfere with Lucy’s attempts to operate the riser-function of her chair.
‘Let me do it! Let me do it…!’ says Lucy, wresting it away from him and getting in a muddle. The back of the seat goes down and the footrests shoot out. ‘Blast!’ she says, and promptly turns the whole thing off.

They have carers three times a day – once to get them up and dressed, once to give them lunch and prepare some cling-filmed sandwiches for tea, and once to put them to bed. Although I have to say it’s looking pretty much as if the ‘bed’ aspect has gone by the board. They’re sleeping in their chairs full-time now, and only getting up to stagger precariously through the jumble of everything to a commode.

At first it seems like a pretty sad kind of existence, and I can’t help feeling sorry for them. Wouldn’t it be better if they sold up and moved into a nursing home? Somewhere with staff on hand to keep an eye on them? To wash, dress and feed them, and keep them warm (not that this place is cold – they have a free-standing oil-filled radiator in the middle of the room, on full). I’m sure they could sit next to each other somewhere, either in their own room or in the lounge? Because no-one could say they were remotely safe in this place. A small stack of ambulance sheets is a testament to the increasing number of falls they’re having.

But they don’t strike me as unhappy. The bickering isn’t unpleasant or aggressive; more the sniping of two caged creatures, fussing over the minutiae of their shrunken existence. I wonder how well they’d fare if they were removed from this place, even taking into account the trip hazards and the damp and the dodgy electrics. I wouldn’t be surprised if they faded away the moment they were helped to a couple of comfortable chairs, in a wide and well-lit room, with a television, and a trolley doing the rounds at half-past ten, and three.

‘Give it here… look! You’ve turned the damned thing off!’
Thomas tries to snatch the remote, but it’s like watching a tortoise make a swipe for another tortoise’s lettuce leaf.
‘Ha!’ says Lucy. Then after glaring at him triumphantly, she slowly presses it up to her nose to figure it out.