Don’t patronise me!

Eighty-seven-year-old Mary – in frail health and prone to memory lapses – insists that she wants to live at home, against the advice of health staff. Deborah Dreyer and Giles Gardner worked hard to help her. Graham Hopkins reports


Deborah Dreyer, community care worker, and Giles Gardner, operations manager.
FIELD: Older people’s services.
CLIENT: Mary Bellinger, 87, is a retired schoolteacher, previously unknown to social services.
CASE HISTORY: Mary was living independently in Yorkshire but began experiencing minor memory problems which led her, more than three years ago, to move to a cottage in Devon to be near her daughter, Avril Butler, a social work academic and a former social work practitioner and manager. After a community care assessment, Mary was provided with frozen meals and some adaptations made to her house. For the best part of a year, with Avril’s support, things seemed fine. However, Mary’s memory began deteriorating and she started having problems with preparing meals and managing personal care. After a fall and hospital stay, health care staff did not believe that Mary could be supported safely at home. Despite the risks, Mary and Avril strongly disagreed and, in partnership with social services, looked at putting together a support programme.
DILEMMA: Hospital and medical staff felt that Mary could not be supported adequately at home, and felt that residential or nursing care would be a more suitable placement.
RISK FACTOR: Mary was in poor health in hospital and has mobility and memory difficulties – all of which will deteriorate further.
OUTCOME: Mary returned home where she has remained since and now has a live-in carer.

Despite progressive moves within social care towards a person-centred culture, when it comes to older people there is a tendency for the medical model to predominate: ageing is thus seen as a time when your body and mind fail and falter. And protective services – “for your own good” – begin to circle.

But, despite memory and body lapses, sometimes you can still be sure to know your mind. Mary Bellinger, 87, certainly knows hers. In 2002, the former schoolteacher had moved from Yorkshire to Devon to be near her university lecturer daughter, Avril Butler. “Within a year or so it became clear that her orientation and memory were deteriorating,” says Avril. “I was often dealing with minor everyday difficulties and confusions – her thinking someone had taken her purse, for example.”

Community care worker Deborah Dreyer agrees. “Mary’s memory was getting worse – she started muddling up clothes and leaving frozen meals lying around the kitchen.”

A little more than two years ago, Mary had a stroke. “She was very poorly,” says Avril. “She loathed her time in hospital. I’d never known her to be violent or aggressive but in hospital she threw things at people and chucked water at nurses. She was just desperately trying to hold onto some control among people who meant to be kind but were patronising the living daylights out of her.”

Although Mary’s health improved enough for her to be transferred to the local cottage hospital, the family were told by staff – “except for a marvellous occupational therapist” – that she wasn’t suitable for returning home, and nursing care was for the best.

However, the family were having none of it. Avril says: “She was very wobbly and still very ill – but had been so distressed at being in hospital that I knew that being in care would probably kill her. So going home was a better risk: she could have some quality of life and some control over her destiny.”

For some time Mary had been unhappy with the quality of care she was receiving at home. Dreyer had been exploring the issue of direct payments and Mary became one of the first people in the locality to receive one. Dreyer is now a direct payments “champion”.

“Since we introduced champions, 63 users in our locality now have a direct payment, 36 of whom are over 65, which is fantastic,” adds operations manager Giles Gardner.

So, despite the misgivings of hospital staff, Mary returned home with a care package that included four support visits a day and a sleeping-in service. “However, within a year she had again become resentful of the home carers,” says Dreyer. “This fiercely independent woman had very clear ideas about how things should be done in her house. She resented people coming in and out of her house, and the home carers’ inability to arrive on time.” And, once again, she abhorred being patronised.

“Mary is a woman of great intellectual ability,” says Dreyer. “She read Leo Tolstoy’s War and Peace in French for the hell of it. She hated being patronised.” Avril agrees: “Mum is a very intelligent woman. Although her cognitive abilities have dwindled, her sharp, fierce intelligence never has.”

With the home care company deciding to withdraw its services, it was felt a live-in carer was the answer. “Her carer is a Zimbabwean graduate,” says Dreyer. “She’s a smashing and very educated woman: the two of them spark off each other intellectually.”

Avril agrees: “She is extraordinary and has lived in mum’s house with her for over a year. The carer – and the others who cover when she’s off – put their lives around mum: they eat when she’s hungry; they go to bed when she goes to bed; and get up when she gets up. Her life is of primary importance.”

During her time at home Mary has been critically ill, including twice with serious chest infections. “She was managed at home on a drip,” says Dreyer. “We thought we may have lost her but she’s pulled through each time. And we’re sure that one of the things that is keeping her going is that she is in her own environment. And that she is being cared for by someone who respects her and whom she respects.”

Gardner says the easy option is always to put people into care. “This is the hardest, most complicated and most demanding option. I’m proud to see workers fighting their corner and not capitulating to the pressures.

“It’s good social work at the end of the day.”

Arguments for risk

  • Mary was very clear that being at home rather than in a home was her preferred option.  As Dreyer says: “Mary wanted to stay at home. That was Avril’s objective too. And therefore my job was to make sure she was able to stay at home.”
  • The desire to keep Mary at home was also realistic. “Mum is at risk, there is no doubt,” says Avril. “She had a fall the other day. But the risks she faces are no different from those that she would face in residential or nursing care: and possibly less. If she falls at home someone knows immediately that it has happened – which may not be the case in a busy care home.”
  • The family were well supported by Dreyer in making things happen. “It was important being able to listen and respond to their needs but also being a supportive human being at the end of the phone,” says Gardner.

    Arguments against risk

  • Mary may be a “fiercely independent” woman but she also has mental and physical health needs. Hospital staff, district nurses and others all recommended nursing or residential care as the safest option.
  • Indeed, Avril agrees that a care home appears to be safer for professionals and relatives. She says: “When thinking about risk, one of the critical things for me is to think about ‘who are we protecting’? If I wasn’t the person I am or in the job I’m in, I may well have gone down the line of playing safe: residential or nursing care.”
  • Mary’s resentment could be seen as indicative of her inability to remain at home safely. As Dreyer observes: “She was so sick of being messed around, of having people in and out all day – at which point the district nurses and home carers said we could not keep her at home. But Avril insisted: ‘My mother is staying at home – we’ve got to find a way around it’.”

    Independent comment

    Risks are very personal. One person’s exhilarating ski slope is another person’s potential death trap, so we should be wary of taking decisions for others, writes Jef Smith.

    What is it about some health service personnel which makes it so difficult for them to understand this principle? One factor is presumably the fear of being judged as negligent. But the fact that a service user had themselves accepted responsibility for the risk they were taking would surely satisfy any jury.

    The stronger element is old-fashioned paternalism: “we” know best. Well, “we” often don’t, as this story splendidly demonstrates. Recent legislation on mental capacity will require an advocate to be appointed to prevent such bullying in cases where a step such as admission to residential care being considered and the person concerned may lack the ability to decide alone.

    But Mary showed both insight and caution in the moves she made in response to her illness, and in her daughter had the best possible source of advice – sympathetically knowledgeable about her needs and expertly qualified.

    Domiciliary services have developed great flexibility over recent years so that most older people can avert what once seemed the inevitable admission to a home. Judging by her previous deterioration of health and mood when in an institution, Mary would probably have soon died if forced into residential care.

    The National Minimum Standards exhort us to “maximise service users’ capacity to exercise personal autonomy and choice”. That’s surely clear enough.

    Jef Smith is a writer, trainer and consultant in the care of older people



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