My mother is a wonderful woman but has no short term memory and drinks too much alcohol. When she’s sober her language is complex and her sense of humour magnificent. “What a terrible world,” she says, watching the television news, “I’m glad I’m not in it.” In a way, she isn’t. She’s mildly disinhibited even when sober and chats to everybody. “You’re one of the sights of Barsetshire,” I say to her, “they’ll be organising coach parties.” “Well, nobody ‘ll pay,” she answers laughing. But how much have the health and social services helped my mother?
She’s clear that she wants to live on her own as long as possible. In an age gone by, but still present in most of the developing world, she would have lived with me or my brothers. It would be unthinkable that when widowed she should live alone. But those days are finished. We couldn’t stand it and nor, I’m confident (but maybe deceiving myself), could she.
It’s fascinated me how well and for how long she has lived alone despite having no short term memory. It’s been some six years. I thought an intact short term memory essential for living alone, but I was wrong. Luckily she doesn’t cook, so doesn’t leave the gas or the oven on. She forgets to put water in the electric kettle and sometimes blows the fuses, but she doesn’t blow up the house.
Every day is much the same. She gets up at about 8.30, has a cup of black coffee, looks at the Guardian (making no sense of it), puts on her shoes, and “stomps,” as she describes it, the mile into the centre of Barset. Greeting the man in the newsagent, she buys a bottle of wine, stomps home, hailing people as she goes, drinks the wine, and goes to bed. Perhaps two hours later she gets up and does it all again. And when the days are longest, she may attempt it a third time—unaware that it’s evening not morning and unsteady on her feet after two bottles of wine. That’s why I’m sat here in Barset writing this. I’m “mothersitting.” She giggles at the term but doesn’t really like it.
Back at the beginning I thought that we ought to “get her into the system.” I thought that we’d need some support and that it would be essential to be “on the books” to receive it. So we went to the GP, which she doesn’t like. The trainee said that she should have some blood tests and come back to have “the long test for memory.” That was two trips, 140 miles driving, and when we had the appointment for the long test, the doctor didn’t have time to administer it and so simply referred her to the memory clinic. There was no value added by all this as the postman could have told us that she has no short term memory.
The adventures with the memory clinic were long and drawn out with MRI scans, psychological tests, many interviews with a variety of people, and some 350 miles of driving. My mother hated it all, but in the end she was prescribed drugs to help her memory. She forgot to take them and didn’t, I think, want to take them anyway, although she said she did to please us all. Even if she had taken the drugs there was only a small chance that they would have done any good. Everybody was charming and helpful, but no value was added by all this activity—except that the diagnosis released some state benefits. It was bureaucratic value that was added.
Social services became involved. They came and did a long assessment. Eventually, they said, she’d have to go into a home. This wasn’t surprising. They couldn’t do anything except give us a list of services. They couldn’t recommend any service even though they presumably know which are better than others. So no value in this.
We arranged for a “sandwich lady” to come three times a week to encourage my mother to eat. But that was hopeless, and eventually my mother herself told the sandwich lady that she didn’t need her anymore.
Social services assessed her again and told us the same as before. They did arrange a bath chair, which did add a little value. Unfortunately it broke down almost immediately and took a long time to fix. Now they’ve taken it away. I’m not sure why.
We arranged for carers to come in twice a day, and they have added value. But we found them and have to pay as my mother owns her house.
What about resuscitation, the care company asked. My mother is very clear that she doesn’t want to be resuscitated. We talk about death a lot. She’s not scared of death. But we can’t have a DNR in place without having the doctor approve it. So we haven’t bothered. If the carers find her in cardiac arrest they are highly unlikely to succeed in resuscitating her anyway. Having to have a doctor determine your eligibility for a DNR seems to me a process that subtracts value.
Now things have reached a crisis. With the long evenings my mother is going out late and drunk and having all kinds of adventures with neighbours, the police, and the burghers of Barset. The care company has contacted social services worried that it might be blamed if she goes under a bus. So have some neighbours. A young man from social services rings me in a state of high excitement. He asks me things that we have told social services many times. He’s rung the GP asking for an assessment. He offers us another assessment. “What good will that do?” I ask. He’s not clear. I say that we recognise she can no longer live alone even though she insists that she wants to. We’ve started finding a home.
They can’t, it’s apparent, really do anything. I ring the GP and speak to a friendly understanding doctor. They have been contacted by social services and discussed her in their meeting. But nobody knows anything about her. A doctor has visited twice but never got an answer. Somebody is going to try again. The young doctor agrees that they have little to offer. I’ve not heard from them since.
Social services keep ringing because people are ringing them. The care company tells me that they will do anything to help but in the same call, without irony, tell me that they can’t supply somebody in the light evenings.
My brother asks who social services are serving? Are they there for my mother or the neighbours? We recognise the strain on the neighbours, and we know most of them. Some have been very helpful. Ages ago I delivered them all a letter asking them to contact any of us if they had worries. I’m not sure why they ring social services rather than us.
Then my mother has a fall. It had to happen. Indeed, it’s happened before. This time she has a scalp wound, and we doctors (and surely most others) know that scalps can bleed generously. I was abroad unfortunately, so my brother rings 111. Risk averse, as they have to be, they recommend a visit to A and E. Nobody can be sure that she wasn’t unconscious. A young doctor thinks she might have a urinary tract infection to account for her confusion and prescribes antibiotics. They can’t be taken with alcohol. He suggests a visit to the GP in four days’ time. I say poppycock to all this when I return, and we forget the antibiotics and the visit to the GP. She is fine. So again more activity, more expense for the NHS, and no value. At least she hasn’t developed diarrhoea through taking antibiotics.
A woman from social services rang again today. She’s weary. I tell her that we are in the final stages of the bureaucracy of finding a home. She’s relieved. I ask her what she might do if we weren’t doing anything. Eventually she would have to use the law to have my mother admitted to a care home. She could arrange an emergency admission to a home, but we agree that we should do all we can to avoid having to move her twice.
My mother is unaware that the phone lines of Barset are buzzing with concern about her. She’s not keen on moving to a home but will do what we advise. Seconds after we’ve had the conversation she has of course forgotten it.
When I reflect on the saga so far I can’t see that statutory health and social services have added anything but minimal value. But there’s been plenty of activity, form filling, and expense. My mother is not that unusual. We surely need better ways to get value out of the system.
I also reflect that people who have added a lot of value are those who work in the newsagent she visits every day. She likes them, and they are not only kind to her but also let her have goods without paying when she forgets her money and arrange a taxi to take her home when she’s tired and exhausted. Perhaps we need fewer expensive professionals and a revitalisation of communities.
Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.