Burden weighs heavily


Alexandra Dunlop, social worker, carers’ assessments; and Lee Alexander, manager, carer development team.
FIELD: Carers’ assessments, adult services.
LOCATION: County Durham.
CLIENT: Wendy Gallacher, 45, lives with her husband, Terry, 48. They have two grown-up children: Phil, 20, who has moderate learning difficulties; and Anne, 25, who is separated from her partner, has two children and is Phil’s main carer.
CASE HISTORY: Last year Anne’s first child, Jasmine, tragically died aged just four. The trauma of this loss overwhelmed Anne and affected her mental health. Wendy assumed a central caring role taking responsibility for her children Anne and Phil, and Anne’s two-year-old son, Jarrod. Also, Wendy’s father, Brian, 77, is in nursing care where Wendy visits him regularly. However, the strains of caring have begun to take their toll. She confessed to a psychiatric nurse, who was providing support to Wendy, that there were limits to how strong she could be for other people. At this point Wendy referred herself for a carer’s assessment.
DILEMMA: Despite wanting to care for her family Wendy began to fear she had no identity beyond that of a carer. The guilt of such feelings added to her stress.
RISK FACTOR: Wendy was beginning to fail as a carer, her family’s needs not being met and her own physical and mental health were at risk of deterioration.
OUTCOME: With external care and support, Wendy has a renewed focus and her family relationships are strong.

The names of the service user and her family have been changed

We were told recently that the UK’s pension shortfall is estimated to be a huge 57bn. The same figure has been quoted as the value of products bought online in the UK in the past year. And what the US company Proctor and Gamble has just shelled out to buy Gillette. And what Sainsbury’s Bank predicted in February would be spent in six months in the UK on home improvements.

It is also the amount that around six million unpaid (or “informal”) carers save the UK economy each year. More than one million people care for more than one person. And so, let alone anything else, it makes economic sense to look after the carers to make sure that their needs are met so they can meet those of the people they care for: carers such as Wendy Gallacher.

Following the death of her daughter’s child, Wendy suddenly found herself caring for almost her entire family. And it soon began affecting her own mental health and straining her relationship with her husband.

“Wendy’s daughter Anne lived in the same street as Wendy, with her young son Jarrod,” says social worker Alexandra Dunlop. “Anne sometimes drank heavily and needed help with Jarrod. Her husband had recently left and Wendy found Anne emotionally draining and felt she had to be permanently on hand.”

Anne’s brother Phil, who has moderate learning difficulties, also lives alone nearby with twice weekly support from home care. “He was reasonably independent with personal care but required prompting to maintain his personal hygiene. Wendy had to begin providing practical assistance for Phil such as shopping,” says Dunlop.

On top of all that Wendy’s father Brian was in a nursing home 10 miles away. Dunlop adds: “Visiting regularly was becoming a struggle because of the time she was spending with her children. Wendy also had concerns about the quality of care being provided, which heightened her anxieties.”

With so much time and effort being put into caring, Wendy’s own needs as a carer, as is often the case, passed by unnoticed. “A separate carer’s assessment can help to place the carer at the centre of the family system,” says carer development team manager Lee Alexander. “It enables the carer to identify their own needs and put themselves first during this process – often for the very first time.”

County Durham’s carer development team was set up in 2001 in response to the Carers and Disabled Children Act 2000. Alexander and a small social work team carry out assessments independently from other social work teams. “Our aim is to enable carers to see themselves as an independent person with needs, as this so often gets lost within the many competing demands of caring for another, or others,” he says.

In assessing Wendy’s needs as a carer, Dunlop helped Wendy to reflect on her different caring responsibilities and relationships and the impact they were having on her and her husband. “Together we targeted possible areas for change to try and ease some of the pressures of Wendy’s varied and sometimes competing roles and demands,” she says.

They were able to identify and analyse the various relationships and their impacts. “We considered each individual relationship and the level of support required to maintain the whole system effectively, whether by Wendy or statutory services,” adds Dunlop.

With the assessment complete, a carer support plan pinpointed Wendy’s support needs, while clarifying the extent to which she would continue to provide care. “This helped her spot stresses more easily, preventing them from mounting and dragging her down,” says Dunlop. “Working together with others, we established areas of support particularly for Phil, which resulted in extra services being provided by the learning difficulties team.”

To help Wendy deal more effectively with her emotional relationship with Anne, carer support focused on the impact of mental health and alcohol abuse. Critically, Dunlop was a consistent presence: “I was available to provide emotional support throughout the intervention including when Wendy’s father moved to another home nearer by,” she says.

For Alexander, a carer’s assessment can be a powerful tool. “It can look at caring relationships from a different perspective altogether,” he says. “It places the carer firmly in the centre as opposed to them feeling at the periphery of the various forms of support available to the people they care for.”

Arguments for risk

  • Wendy was determined to continue to provide care for her family even though she was becoming aware of her limitations.
  • It seemed clear that Terry would be glad of anything that might alleviate the pressure he and Wendy were under. “Sometimes it’s useful to widen the networks of support beyond those of the family unit, as boundaries can become confused,” says Alexander. “Often, family members are literally too close to home to be able to support the carer properly. However, statutory or voluntary sector support should not replace family support. The two should complement each other.”
  • The impact on Wendy’s self-esteem needed to be supported as the various systems showed danger of crumbling. Says Alexander: “Wendy needed to recognise that by putting herself first and reducing her level of support, she was in fact returning to some kind of balance, and not failing in her relationships with her family.”

    Arguments against risk
  • Wendy’s relationship with her husband was strained. Providing emotional support from outside of the home could have a further negative impact on this relationship. Wendy’s husband may have felt he had failed in being able to support his wife.
  • In placing the carer at the centre of the system and increasing their awareness of the impact their various roles are having, intervention can throw open a new set of dilemmas for which adequate time might not be set aside – causing Wendy to become too emotionally vulnerable.
  • Caring may become the driving force in a person’s life, an identity that they embrace, sometimes willingly, sometimes not. As Alexander says: “To embrace this identity too much, in that it becomes the overriding purpose in that person’s life, may run the risk of the carer becoming too involved and risking emotional or physical burnout. Wendy’s own sense of self was at risk of being lost as she struggled to maintain her various roles.”

    Independent comment
    This case highlights the fact that caring is often very complex and no two lives are the same, writes Emily Holzhausen.

    Like Wendy, most carers want to continue caring for their relative or friend, even though they have not had a choice about taking on the caring role, but they do need to maintain or rediscover their own identity as a person. This is crucial to their own health and well-being.

    The Carers (Equal Opportunities) Act 2004 has this ethos at its core. Social services have to consider carers’ wishes if they want to work, return to work, and take opportunities for training and for leisure. Carers have described the new law as treating them as individuals with a right to a life of their own.

    What would the impact be on health, social services and other local authority services, let alone the personal impact on the family if Wendy were no longer able to care? It is clear that there would be a fairly high price to pay.

    When carers do not get support – such as a break – and they provide substantial care, they are twice as likely to suffer from mental ill-health. Carers UK has also found that half of carers in one survey had sustained a physical injury since caring.

    There is no evidence that Wendy’s case is going to become rarer in the future. By 2037 we will need three million more carers, if there is no increase in the level of services.

    Getting these issues right now will not only help carers in today’s society, but will help us to face the challenges of caring for our ageing population in the future.

    Emily Holzhausen is public affairs manager, Carers UK

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