Time to meet the parents

A man with a degenerative mental health problem lives with his elderly parents. Despite their difficulties, they resist help

Case study

The names of the service user and his parents have been changed

Adrian Jones is 51 and a wheelchair user. He has been living independently most of his adult life but has spent regular and sustained periods back with his parents, Alun and Caroline, both now retired and in their late seventies. He finds the isolation (he has a very limited social network) anxiety-provoking, which leads him to drink too much. He has been back with his parents for 18 months.

Problem: About six months ago, Adrian was diagnosed with the neurodegenerative disorder Huntington’s chorea (from the Greek word meaning “to dance”), a rare hereditary disease that affects one in 20,000 in the UK. It is marked by chronic, progressive involuntary movements of the limbs and muscles and significant mental deterioration. Adrian has been experiencing difficulties in thinking things through and his moods swing between depression and being angry. His speech is increasingly impaired, which is adding to his frustrations. But he does not believe that there is anything “wrong” with him. The disease is hereditary and yet his parents are fine. He thinks they want him out of their house. His parents are struggling with him physically and mentally; his unpredictability and the emotional and psychological abuse is wearing them down. They are quite frail but oppose any outside help as they feel it is their duty to care for their only child despite the difficulties. They know that if he went back to living on his own he would soon be back.

Practice Panel: Milton Keynes Mental Health Team

Panel responses
Jane Ross
As the link community psychiatric nurse with the Huntington’s Chorea Society in Milton Keynes, I have regular monthly contact with professionals who provide specialist advice and support for individuals and their families suffering with the disease. Huntington’s chorea covers both mental health and physical health issues and they must be considered together in order to promote holistic treatment.

We need to ask how and when was Adrian diagnosed? We need to determine the background pathology. It is a hereditary disease and usually there will be a family history of relatives who have suffered with the condition and the experience will be imprinted on the family’s psychology. This in turn will affect the way his parents manage his needs. His symptoms could be ameliorated with the use of medication which needs prescribing.

Adrian appears reluctant to accept help. It is imperative that a relationship is nurtured with a professional care team given his poor prognosis and the fact that this condition encompasses every facet of physical and mental health need. It could be that he and his parents are in denial and the provision of counselling could help them manage feelings of anger, frustration and fear.
Adrian will need to access specialist support services through effective care management. In Milton Keynes we have a day care facility for Huntington’s chorea sufferers, albeit in a private establishment. The same unit provides residential respite care.

Adrian will also need help from a speech therapist, dietician (weight loss is feature) and physiotherapy. It is vital that Adrian’s care is properly co-ordinated by someone with specialist knowledge and expertise. Here, Adrian’s care would be managed by a health or social care professional from the physical disabilities team with input from other services.

Without timely intervention, there might be a need for urgent admission to an acute general ward or possible mental health inpatient care via a mental health act assessment. Careful partnership planning could avoid this. Adrian could be encouraged to make an advanced directive helping him to maintain control over his situation for as long as possible.

Steve Caffrey
It is important to look closely at Adrian’s parents’ situation. It’s clear that they are struggling with their circumstances both physically and mentally. They are both physically frail and the indicators are they have feelings of anger, frustration and fear.

These feelings may have many sources: how their own lives have been affected in retirement, concern about what’s happening to their son, fear about the hereditary nature of the illness, fear for their own safety and emotional well-being. Do his parents, as Adrian believes, want him out of the house? It’s also suggested that they might be “in denial” about the realities of the illness.

I would recommend that his parents are encouraged to participate in carers’ assessments with the intention of helping them to talk about their concerns and feelings, review any practical input they provide and look at ways to support them. Counselling has been suggested as a means of support, together with opportunities for respite care, home care support and social activity.
Direct payments could be an alternative to offer greater control to Adrian and his parents who appear reluctant to receive outside help. Direct payments would allow them greater choice and control over the way any support services are introduced.

But such ideas for support appear to be further down the line because Alun and Caroline are not yet willing to engage. There needs to be a way of forming a trusting and meaningful relationship with them. If Adrian trusts anyone it is his parents. If that’s the case, Alun and Caroline will be pivotal in any negotiation about introducing support services. Forming relationships within the family is likely to take some time, and a support worker could be introduced to develop such a relationship.

In Milton Keynes, we would invite a support, time and recovery worker to participate in that task. We would also consider the potential value of an advocate who would be able to represent their views.

Since a range of practitioners have been recommended to work with the family, it is important that a multi-disciplinary team is clearly defined with a care co-ordinator appointed who can skilfully and sensitively manage the whole process.

User view
Adrian seems to need a friend more than anything else, writes Kay Sheldon. His chances of achieving this through everyday social contact seem limited, even impossible, given the nature of his condition.

But with the right support he could be helped to develop a social network. The social worker should find out if Adrian is receiving his full entitlement of disability living allowance and investigate the possibility of direct payments.

Once Adrian’s preferences and his financial situation have been established, action can be taken to help him develop a social life. This could be having someone accompany him to help him in leisure activities, organising a befriender or arranging membership of groups.

It will be important that Adrian’s supporters and friends understand the physical and psychological nature of Adrian’s disability. People will find verbal abuse difficult to tolerate but need to know that it is part of Adrian’s condition. It would seem the input from a psychologist, with experience of working with people with Huntington’s chorea, might be helpful to help people understand the nature of the condition including how and when it progresses and to advise on coping strategies for Adrian and his supporters.

There needs to be a balance struck between making allowances for Adrian’s behaviour and encouraging him to control his behaviour. However, it would be inhumane to berate or penalise Adrian for behaviour that he has no or limited control over.

The psychologist could also work in a similar manner with Adrian and his parents. It must be heartbreaking for his parents to witness their son’s deterioration. They will be feeling grief, despair and maybe guilt. They should be offered the chance to talk about their feeling and concerns on a regular and informal basis. Just being able to talk and share their feelings will help and may also identify issues or problems that the services could help with.

Similarly, Adrian should be offered the chance to share his feelings and concerns. The input of a speech and language therapist would seem useful to help Adrian with his communication difficulties.

Consideration should be given to support that with facilitate and provide happier times. Many families when they have a terminally ill member will make the most of the time they have left. This should happen with someone with Huntington’s chorea. This might take sensitivity and perseverance but could mean a lot to Adrian and his parents.

Kay Sheldon is a mental health user

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