Lost without each other

Case notes

Practitioners: Giles Gardner, practice manager, and Sallie Cottle, social worker 

Field: Older people’s services 

Location: Devon 

Clients: Tommy and Barbara Leadbetter are both in their mid-eighties and have been together all their lives. They live in a flat, part of a warden-controlled scheme. Their daughter lives locally and helps out whenever she can. 

Case history: Barbara has significant dementia, through which she was known to the local community psychiatric nurse. Tommy, who has been caring for her for many years, resisted all help from social services either for Barbara or for himself as her carer. At a weekly meeting between health and social services staff, the community psychiatric nurse referred Barbara to the social services link person, Sallie Cottle, following a difficulty with the Leadbetters’ tenancy. There were concerns over Tommy’s perception of his new next-door neighbour who, he thought, was causing a lot of noise and disruption – playing music at all hours and so on. His neighbour was, in fact, an older woman, and quite poorly. Tommy had repeatedly called police to investigate the “noise”.  

Dilemma: Barbara needed better care than Tommy could offer, but Tommy’s refusal of extended support at home was worrying and it would be too emotionally damaging to split them up. 

Risk factor: Tommy’s paranoia, lack of understanding and failing health – despite the support offered – meant that living in the community would put Barbara at risk. 

Outcome: Tommy and Barbara are set to move into residential care together.   

Caring for family members is part of life for most people. Tommy Leadbetter was no exception. He had been caring for many years for his wife, Barbara, who has dementia. They had been together for more than 60 years, and he didn’t want it any other way. But he had started to hear “noises” next door. This behaviour, coupled with other concerns, saw him referred to social services.

“Tommy was adamant this was happening,” says social worker Sallie Cottle, who was allocated the case by her manager, Giles Gardner. “The organisation investigated, but no one else had heard anything. He would call the handyman at all hours saying a bicycle was being ridden around next door, and that his neighbour had a young man on the property.”

After great efforts, Tommy, who had always resisted help, agreed to home care support to help get Barbara out of bed and dressed. Cottle says: “There were concerns that Barbara wasn’t getting adequate nutrition. Fire alarms had gone off and Barbara had a couple of falls. I don’t doubt that he was devoted to her, but clearly he was struggling.”

According to Gardner, Tommy could not assimilate the risk to his situation. “No matter how many facts or how much evidence, he just could not see it. And that was one of the difficulties really,” he says.

Even when the neighbour moved out, the noises remained for Tommy. Cottle says: “A psychiatrist assessed that he was experiencing episodes of paranoid delusions. He refused prescribed drugs to alleviate his anxiety – not least because a side effect of drowsiness would mean he could not drive.” Tommy saw his car as a symbol of independence, although it was a further concern for others.

One night Barbara wandered out – Tommy did not know she had gone until he woke in the night and contacted police, who found her in a garden in the same road.

Cottle says: “In that week Barbara became uncharacteristically distressed – refusing to go back into her flat. She also wandered out again and fell in the garden. However, when you spoke to Tommy about how to manage Barbara’s safety, he’d play it down.” Another emergency meeting was called.

“This was a crucial strategy meeting. Having fought so hard to keep them in the community, we were aware that the risks were becoming unmanageable,” says Gardner. “We had sown the seeds of increasing support or changing their environment where there could be more care – particularly for Barbara,” adds Cottle.

Through the couple’s daughter and the community psychiatric nurse, Barbara was admitted informally into a psychiatric older people’s unit nearly 20 miles away for assessment. Cottle says: “Over the weekend, Tommy decided to stay in a bed and breakfast near the hospital so he could visit Barbara more easily. While visiting, the staff picked up on issues for Tommy as well and tried to encourage him to stay. But he refused. Next morning, he was found by the porter, having slept the night in his car in the car park.”

Following this, Tommy was persuaded to stay, and a bed was moved into Barbara’s room. “He was worried that if he left her she would be taken away from him. For her part, Barbara was lost without him,” says Cottle.

A residential care place was found with a double room available. Tommy went to look at it. “He liked the home, although he would like to keep his flat as well,” says Cottle.

“We’ve gradually persuaded Tommy to be more accepting of care,” says Gardner, who with Cottle has involved both the couple’s daughter and Tommy in the process. “So he feels that he has an element of control over things.”

Gardner believes that Tommy’s paranoia over the noises will follow him into residential care. “In hospital, he has been pointing to another patient saying she’s the one who lived next door – even though she isn’t,” he says. Cottle hopes that medication and, indeed, his new circumstances will help: “I think that he’s been so dedicated to her and so stressed at the whole caring element, and perhaps once that is taken away and care is provided this may be alleviated.” His role can then be one of companionship.

“He always said his biggest fear was being separated – this is the opportunity to be together,” says Cottle.

Arguments for risk 

• Residential care should be a last resort option. Tommy was becoming more accepting of care and support. This could have translated into accepting more support at home. That would have allowed all the caring tasks to be undertaken professionally through social services. 
• Crucial to this situation was Tommy’s state of mind. He was lucid, charming and collected, with the exception of the paranoid delusion about his neighbour and the noises he could hear. Interestingly, while the noises persisted and were very real for Tommy, he began to realise that saying so would make people question his sanity. “I think this came from his background,” says Cottle. “His father was a chief mental deficiency officer and he recalled being taken around by his father to all the institutions and seeing people that he would have to remove, perhaps in a forcible way.” This must have had a lot of impact on his ability to cope with his mental state.   

Arguments against risk 

• l It is almost always best to keep people in the community, if possible. The workers had worked really hard to achieve this, but the situation had become unmanageable. For example, the GP had prescribed medication for Barbara but there were concerns about how much of this Tommy was giving her. “When she was agitated he admitted to giving her a tablet, and if this didn’t work he’d give her another one,” says Cottle. Tommy could not understand that he was unable to keep Barbara safe. 
• l Both needed to be together. This, in the end, could be achieved only in residential care. 
• l Tommy’s paranoia could develop so that he might be sectioned under the Mental Health Act 1983 – something the practitioners wanted to avoid. 
• l The excellent and committed core group – including the GP who attended even on his days off – shared the responsibility, and demonstrated the strength of joint working in the service user’s best interests.   

Independent comment

The dilemma faced by the team dealing with Tommy and Barbara represents one of the fundamental challenges of the modern approach to older people’s services, writes John Belcher. How can we assist older people with failing mental and physical health to meet their aspiration of independent living without exposing them to excessive risk? 

It is clear that health and social services worked well together to achieve the couple’s primary aim – to stay together. But options such as a range of housing-related services, which would have allowed the couple to remain in the community, appear to have been overlooked. 

Extra care – sheltered housing where tenants are supported by an on-site care team – may have worked well in this case. As extra care tenants, Tommy’s wish that he and his wife could remain in a home of their own would have been fulfilled. And the delivery of intensive, round-the-clock care may have minimised the risk to Barbara to a more manageable level. 

The use of modern technology to facilitate independent living could also have been considered with an extra care housing solution. Equipping Barbara with a device linked to the housing provider’s community alarm service would have significantly reduced the risks to her health from wandering outside the home. 

Such simple technology enables housing providers to react swiftly to risk situations and would have been a useful tool in enabling Tommy and his wife to maintain their independence in the way they wished for a longer period of time. 

John Belcher is chief executive, Anchor Trust.