A man of 38 slipped into depression after a series of traumatic experiences, including paralysis from a stroke. Our panel advises
The name of the service user has been changed
SITUATION: Alfie Thomas is 38. For most of his adult life he was earning good money as a self-employed heating engineer and had a lavish lifestyle. This changed in 2005 when his wife of 10 years filed for divorce. She was his life. He spent the next year living in rented accommodation, gambling, smoking and drinking heavily. Last year he suffered a massive stroke leaving him paralysed down his left side. He became diabetic and lost all sense in his mouth. He has regular fits. With no family or friends to help, he moved into supported accommodation.
PROBLEM: Once very active, Alfie is now lethargic and depressed. He stares at the floor avoiding eye contact. He is occasionally irritable and prone to verbal outbursts but is mostly quiet. He is reluctant to go out saying that he has no life. He is petrified of having a fit in public and thinks at best he will be ridiculed, at worst left to die. “I don’t even know what happens when I fit – nobody tells me anything,” he has said. He feels that he invested all his love into his wife and was rejected. He had a life and money then. Now, he feels he has nothing and cannot make relationships. He refuses to attend a day service. He can’t taste food so has little interest in it. He drinks 10 to 20 cups of coffee, smokes 40 cigarettes and drinks half a bottle of whisky a day. He is also on Warfarin and Epilem.
Practice panel: Derbyshire Physical Disabilities team
Throughout our lives, many transitions are experienced that can significantly affect self-esteem and self-concept. Alfie has undertaken huge lifechanging transitions from being an active citizen with social and economic status into a lonely, depressed man who feels he has nothing.
Depression is common among people who have had a stroke. Alfie, as with every other human being, has relied on key roles, routines and occupations which have served as protective shields for maintaining sense of self-worth. Alfie is living a downward spiral where his ability to control his environment effectively is affecting his emotional well-being.
The most functional recovery is often experienced in the early stages after a stroke. Alfie is likely to have participated in intensive rehabilitation and now needs further intervention with more focus on roles, routines, independence and overall quality of life.
Identifying and building on the motivation to manage and accept change is fundamental to occupational therapy. Alfie has a long journey ahead: therefore smaller, short-term goals are more realistic and achievable. A multidisciplinary approach may support Alfie to achieve his desired outcomes and referral may be made to a specialist neurological rehabilitation team where he can receive physical and occupational therapy specific to his needs. He may benefit from the input of speech and language therapy to identify potential for improving his sense of taste.
An educational approach is needed, providing Alfie with information on possible effects of his alcohol misuse, dietary intake and his medical conditions, with a view to alleviating anxiety about what happens when he experiences seizures.
Anxiety creates irrational perceptions; if he chooses to face the world, this needs to be challenged. Counselling may be positive in addressing these issues and also help him to work through feelings of rejection created by the breakdown of his marriage.
Decreased anxiety levels and increased self-esteem may be enough for Alfie to realise his potential and empower him to start thinking about his future.
To be frivolous briefly, to conceptualise the social work role, one might consider the old joke: how many social workers does it take to change a light bulb? One, but the light bulb must want to change.
Social work should empower and enable people to make informed choices to change: this is not a passive process. In Alfie’s case, I would respect his autonomy, yet strive to offer him support from many sources.
Alfie’s choice not to attend a day service may be entirely reasonable.
Disabled people are still often squeezed into unsuitable existing services rather than having control of support that meets their needs and desired outcomes.
Alfie’s lack of awareness of what happens to him when he has a seizure also needs to be addressed. He could be supported to learn more about his conditions – and the risks associated with his substance use – from his GP, consultant and local epilepsy and stroke support groups. Alfie may learn from the experience of others, and may eventually be considered for a seizure alert dog – a dog that is trained to warn its owner minutes before a seizure.
At some point, Alfie may want formal counselling to try to reframe some of his self-destructive perceptions and change his behaviour. Some organisations run by and for disabled people offer peer counselling – that is, counselling from a disabled person with direct experience of many of the barriers that disabled people encounter.
If Alfie does not identify himself as a disabled person, his GP might refer him to an NHS counsellor or to a clinical psychologist.
In addition, specialist drug and alcohol counselling may help Alfie reduce the risks from his substance use. He may then find, for example, that reducing alcohol use lessens his seizures. After a medication review he may require a lower dose of Epilem, a drug that often causes lethargy.
With timely and correct support, employment may be a realistic longerterm aspiration for Alfie, perhaps for him to teach heating engineering. Many smaller goals may need to be planned for and reached beforehand, however, and, with support from Access to Work, Alfie might regain selfesteem and financial independence.
Sadly, Alfie is experiencing the life of so many younger adults who acquire a severe disability, writes Simon Heng. As he points out himself, he has no life, only an existence, which he probably realises is more precarious and possibly much shorter than he had thought. He has so many reasons to be depressed – some of which may have been avoidable.
Even a quick trawl of the internet indicates that Warfarin and Epilem could interact with each other: the side-effects of Epilem itself could contribute towards his lethargy and lack of appetite. This drug could also affect tests for diabetes. Are there other drug regimes which would alleviate some of his symptoms, perhaps even deal with his depression?
All too often, particularly when we are vulnerable, we accept what medical practitioners prescribe for us without question, but sometimes it’s not the only or, indeed, best long-term solution. There needs to be at least a re-evaluation of his medical treatment.
Alfie lost so much so quickly – his health, his mobility, his money and his ability to earn money, his marriage, his faith in love, his home, even his expectancy of a long life. It’s understandable that he has retreated to mood-altering substances; anything to take away the constant reminders of his losses, and the little, if any, hope he has – for the moment – for his future.
It takes time for any individual who has quickly found their body subject to debilitating illnesses and disability to come to terms with their new-found condition. Even with the scant help available for anything but physical needs, the only person who can make it possible to build a new life of any kind, or even feel he can take control of his situation, is Alfie himself. And that’s hard to do if you are depressed.
Alfie needs someone to talk to – a counsellor perhaps. He needs to be able to pour out all his anger, his grief and his fears, his feelings about himself and his new vulnerabilities, the way that he imagines that others see him to someone who won’t judge, won’t pass comment and won’t rush to make things better.
Perhaps then Alfie can look towards making himself more emotionally comfortable with himself and his circumstances. Perhaps then he can start looking to the future, which he will find is no more unpredictable than anyone else’s, and he might find that he has the capacity to make life better for himself, on his own terms, if he wants to.
Simon Heng is chair of the Worcestershire Association of Service Users and writes a weekly column for Community CareThis article appeared in the 8 February issue of the magazine, under the headline “Suddenly he had nothing”