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.
2 thoughts on “the white handkerchief”
Such a lovely family, doing their best to cope, but ultimately at breaking point…