We are sitting in an office having our six-monthly visit to the bit of Mum’s care that specifically addresses her dementia. Most of the other branches of the NHS she deals with simply ignore it, even though it’s probably the single most important thing affecting her life. This is a routine appointment, except that this visit is a bit different because it’s her last to our favourite consultant, the Iraqi doctor Mum calls Dr Al Jazeera. He’s retiring and I don’t know about Mum, but I’m certainly upset about it.
I’m driving Mum to the seaside for the weekend. She’s out of hospital and the fact that she’s no longer tied to heparin injections given by the district nurses means it’s easier to take her away. The downside is that the warfarin she is now taking is more difficult to organise and supervise. “The sea air will be good for you,” I say. But she’s unusually unenthusiastic, so low in energy and mood that I wonder if the hospital’s changes to her medication are affecting her badly.
Mum had been told she would be staying in hospital for “about a week” while they put her on warfarin and sorted out her blood. But when I visit on Monday afternoon, I find her sitting on her bed with her coat on and her trademark rucksack packed beside her. “Look,” she says to the staff nurse standing by the bed, “we don’t need transport after all. Here’s my daughter.”
‘I’m giving your photo to the bus drivers and telling them not to let you on
board,” I say to Mum. She smiles. But I can tell she’s desperate. She’s plucking at the drip in her hand and keeps trying to get up, pulling it all apart. She’s been readmitted to hospital after what was meant to be a routine appointment. Routine for the hospital that is, not for her relatives. This was the fourth out patient appointment in the past eight days and complicated negotiations had gone on about who could take time off from work. Mum, too, is clearly fed up. This time when they told her they were admitting her, leaving her waiting in A&E, she wandered out, got on a bus and reappeared back at her home.
On one occasion, arriving at hospital during Mum’s recent spate of admissions, I find her sitting on the bed of the young Ethiopian woman opposite. The girl from the next bed is also perched there. The two young ones are in pyjamas, giggling away like teenagers at a sleepover. “Do you know what your mum just said?” says one. “She said, ‘It’s Saturday night. Let’s go for a rave up!’” The Ethiopian girl puts her arm round Mum affectionately. “Last night, she had a lovely silk nightie on and she was showing us her legs.”
Mum’s not the only one repeating herself. I too have become a serial repeater. It must be at least 10 times in the last fortnight that I have recited Mum’s medical history and her medication. Each time to a different doctor or nurse. Recently I’ve been singing the praises of one particular hospital, compared with some of the others we have been to, but now they too have fallen off their pedestal.
It really doesn’t do to speak too soon about medical problems being done and dusted. Without going into details, let’s just say it became rapidly evident that my mother’s “case dismissed” diagnosis I described previously was premature.
It’s the weekend when this blows up and my sister takes her back to St George’s where a marathon wait commences. But, eventually, Mum gets the all-clear again and I drive to the hospital to take her home.
I need to go to the dentist – my tooth broke some time ago. I’ve also got a headache, which suggests an eye test is needed. My hair needs to be cut. And I still haven’t let my doctor know I’ve moved, although it was six months ago. But I have no time to do any of these things. Not in a preventive way, before they become emergencies. On the other hand, I have to find time to take my mother for her “follow- up” gynae appointment at St George’s hospital. They want to explore the problem that possibly caused the pulmonary embolism that possibly caused her to faint on the bus.
At 8am the phone rings. “It’s Wandsworth Telecare,” says a cheerful voice. “Your mother’s smoke alarm has gone off twice. We’ve rung her but she seems confused so we’ve called the fire brigade.” Is the house on fire? “Probably not,” he says. “But when the alarm sounded we rang her and sent her to check the stove. When she came back to the phone she couldn’t remember if she had turned anything off. We thought we should play safe.”
I know from experience with my mother that the problem with social care is not that there is too little, but that what there is is utterly chaotic
Gordon Brown’s promise to reform social care for the elderly is very welcome. My experiences over the last few years of looking after my elderly mother have really shocked me; I’ve realised that this issue is one of the most important and neglected issues our society faces. But I have my doubts already about whether the government will really tackle some of the fundamental problems with the current system. My experiences have also shown me that the problems with provision of care for the elderly are not allto do with cash. Many are a result of incoherent, un-joined up, impersonal provision that throws technology and medical fixes at old people and doesn’t look at their care holistically.