Support & Info

Carers

September 7, 2009

Carers

Are you the relative or carer of someone who has OCD? If so, then this place is for you.

OCD places a formidable burden and stress on family members, who often become involved in the rituals or avoidance behaviour of the person with OCD to pacify that behaviour. Some families or relatives have a high tolerance for inappropriate behaviour and can cope well, but for others it can be a very difficult and stressful experience which can vary enormously depending on the circumstances of each individual family and the extent of the demands made on them.

For the sufferer, OCD impinges on all aspects of life and causes significant interference with social and occupational functioning. It can also have the same effect on families of sufferers. However, the effect on individual family members may vary, especially if a member becomes involved with the rituals. The stereotypical rituals commonly performed include washing, cleaning, hoarding, checking, repeating actions, order, mental listings and rearranging in one’s mind certain words or phrases. The person in your family with OCD may also have different rituals, as people are all different.

Between 1-2 per cent of the population have OCD, which represents almost 1,250,000 people in the UK. This makes OCD one of the most common mental disorders and more prevalent than schizophrenia, which has an incidence of approximately 1%. Although drug and behavioural treatments are available, many sufferers are undiagnosed and receive no treatment. Also, an estimated 30% of those diagnosed fail to take prescribed medication.

Although there is such a prevalence of OCD, it is inconsistent with other conditions in that there is little awareness of it and little seems to be done about it. Perhaps the rates have been underestimated because of the stigma attached to mental illness. Often sufferers are ashamed of their symptoms and will not admit to them; secrecy can often be part of OCD.

The medical profession has often considered OCD bizarre and as such assumed it to be rare. Families are often reluctant to talk about OCD due to the stigma attached to mental illness. Clearly OCD will have an effect on the sufferer, but it can be difficult to understand the effect it can have on their families. OCD is all-encompassing and all family members are inextricably involved with the sufferer’s illness.

More than 80% of families have suffered disruption to their personal life and to family social life. For many families, the burden of care can fall mostly to one family member. Disruption can take many forms, from demands to participate or cooperate with rituals to domination of almost every action in the home. Demands can often be accompanied by shouting and bad temper and in some cases with violence. It is difficult to imagine the great stress on the physical and emotional well-being of family members.

Giving in to demands and cooperating with rituals can lead to a set of oppressive rules. The consequences of this can be serious and as such may require appropriate treatment and support for the family members affected. Family members may risk neglecting their personal needs and struggle with feelings of guilt, helplessness and hopelessness. OCD rituals and obsessions are diverse and varied and there are no rules about what form they can take.

There is no doubt that OCD affects relationships. There is often a feeling of shame and isolation as well as great sadness about how relationships have changed. Carers and families often talk about a sense of ‘wasted lives’, and refer not just to the life of the sufferer, but their own as well. Before the onset of OCD, sufferers, families and individuals had often functioned at high levels at school and college, socially and at work and there is the sense that not only do they now have to cope with an illness, but with this sense of sadness and loss as well.

Relatives often make comments such as:
“We used to be so close”, “It’s like the son I had is gone. I sometime see glimmers of him but mostly it is like living with a different person. I just don’t know who he is any more”.

Other descriptions include: “a living bereavement”,
“being in a different world apart from reality”. Some avoid friends and family because of the pain they feel when they see others enjoying the many good events and normal milestones of life. Comments include: “I can’t stand it when I am invited to a wedding or a party because I am so jealous”, “What do I have to say about my son/daughter/husband/wife – that he/she is a perfect partner because he/she decontaminates everything and everyone that comes to the house”.

The examples and comments above illustrate some of the ways the emotional lives of OCD families are affected. There is some similarity to how the lives of the families of people with other ailments such as alcoholism are affected, but it seems that there is less awareness of the effects of OCD on the family and consequently less effort to treat it despite the above-mentioned high prevalence rate. It is the task of mental health professionals to help the families of OCD sufferers as well as the sufferers themselves. The stress and suffering of families is a natural response to the highly unnatural demands placed on them by their mentally ill loved ones. Relatives are not bad people, they are sensitive and people who have empathy and compassion for their afflicted relatives. Often they sacrifice their own lives to help the ill person.

However much you like or love the person you are caring for, the emotional and physical demands of caring can be extremely stressful. Things can be particularly difficult if you live with them and you feel you have no time to relax and unwind. Everyone reacts differently to the stresses of caring. But when carers get together, they often find they share many of the same feelings. Some of the most common feelings carers describe are: Frustration, Resentment, Guilt, Anger, Fear, Loneliness, Depression.

Click here to view article: what to do if the person with OCD refuses help

Posted in Support & Info | Comments Off

How To Help

September 3, 2009

Although OCD is usually a complicated and frustrating disorder, caring relatives and friends can help a great deal. A person with OCD will be helped immensely by having a supportive, understanding and empathic family and social network. The following advice may be useful if you have a friend or relative with OCD:

  • Acknowledge that the OCD exists and try to learn about it.
  • Remember that the OCD symptoms, however bizarre or extreme they may seem, are part of a treatable disorder. The symptoms are not personality traits or something that the person can just ’snap out of’.
  • Do not regard OCD as the person’s fault and try not to believe that you or anyone else may have caused it.
  • If the person decides to seek professional help, be supportive of that decision and encourage their determination to recover.
  • Encourage the person with OCD to persist with their treatment, even when this seems difficult, and show appreciation of any improvement, however small.
  • Remember that symptoms may wax and wane. Some days, the person may be able to deal with symptoms better than others. Each person needs to overcome their problems at their own pace, even though this may be a lengthy process.
  • Allow the person to explain their problems to you. This will help them to feel less isolated and ashamed of their condition. The symptoms may seem unrealistic and irrational to you, but the fear for the person with OCD is very real.
  • While supporting the person with OCD, try not to support the obsessions and compulsions. The worst thing to do is to give reassurance to the person that their fears are unfounded. If you do this, the person will not learn this for themselves and the disorder will persist. Encourage the person to fight against the obsessions and compulsions, but let them do the fighting.
  • People with OCD are often aware of the humorous aspects of their obsessions and compulsions. This awareness can be used to help them distance themselves from the condition. However, resist mocking the person’s symptoms as this may cause additional stress, shame and embarrassment.
  • At home, people with OCD should be encouraged to maintain as normal a lifestyle as possible. Families should not try to adapt their ways of doing things to accommodate the person’s obsessions and compulsions.
  • Remember that OCD is tough for families to deal with. Continue to communicate with each other. Remember also that the family, friends and carers of people with OCD need help and support themselves. Make sure you continue to do things you enjoy and have people to talk to about your own feelings and concerns.

This advice sheet was prepared by The Priory Hospital in Roehampton.

Posted in Carers | Comments Off

Families

September 3, 2009

From Cliff Snelling, Trustee of OCD Action:
As part of my role as the Carer Representative on the NICE OCD Guideline Development Group, I undertook an extensive study into the effect on the families and carers of people with OCD. The purpose was to get as much up-to-date information from as wide a range of families and carers as possible.

The study sought to describe the experiences and feelings of carers and to outline their needs, which as far as possible, were described in the terms of the carers. Previous studies have looked at the effect on families from a clinical perspective but this study sought to describe the current situation for carers as they see it. The study found that there is a lack of awareness of OCD throughout the healthcare system generally and amongst the public generally. It also found that whole families can suffer severe distress, hardship and huge financial costs as the result of caring for a loved one with OCD.

Been there, done that – Been where, done what?

OCD sufferers will know what it is like to have OCD and how it affects their lives. Families and carers will also know and how it can affect sufferers and how it can affect their behaviour in certain situations. They have been there, done that, but the vast majority of the public don’t know about OCD or mental health in general, nor do the politicians so how do they know what it is like and what OCD can do to sufferers and families? The short answer is they don’t know. So let’s tell them about it and make OCD as well known as heart disease or cancer and get the same attention and resources for the treatment and research into OCD as there is for those other conditions.

So who do we tell about OCD? Politicians, medical services, social services, local authorities and other public sector organisations providing essential services such as housing and anyone dealing with the public including the police and schools. In fact anyone and everyone; shopkeepers, librarians, bus drivers. The more we can bring this into the open the better. Let’s get rid of the stigma attached to mental health and make everyone aware of OCD. We can do it by word of mouth and by writing to people and just by introducing the subject in conversation whenever appropriate.

To help tell people about OCD the following example can be used:

What is it like to have OCD and how do we go about getting the recognition and resources OCD deserves? Here is a short story you can tell as a small example of how OCD can affect people’s everyday lives.

There was a queue of people waiting to get on a bus. The two people at the front both had a large, heavy shopping bag in one hand. The first person had a broken arm that was in plaster and he couldn’t get hold of the hand rail, so the other passengers helped him onto the bus. The second person had OCD and couldn’t get hold of the hand rail because of contamination fears and was ridiculed by the other passengers.

It is easy to see the first persons’ problem but OCD can’t be seen and so – in their ignorance – the other passengers dismissed the sufferer as being “mad” or just being awkward. If only you could see OCD or it was as well known as cancer or heart disease.

Posted in Carers | Comments Off

Help For Carers

September 3, 2009

It is a good idea to spend a few quiet moments thinking about what makes you feel stressed. You may find it helpful to write down a list.

Another idea might be to think about what you would say to another carer if they came to you for advice – it’s often easier to see solutions to other people’s problems than your own. Once you know what you find stressful, try to think of practical things you can do to deal with the problem.

It’s not always easy to do but talking to someone is one of the best ways of dealing with stress is to talk about it with someone. Who you talk to will depend on your situation. You may want to try talking to someone you know you can trust and will listen sympathetically. If you find it difficult to talk about your feelings with someone you know, you may want to try getting some counselling. Talking to a trained counsellor may help you explore your situation more openly and honestly than you can with people you know.

You can also seek counselling by contacting a local voluntary organisation, charity or Mind. There are lots of groups, which offer counselling free of charge or for a small fee look in you local library or doctors surgery for more information. You can contact a counsellor by asking your doctor. Doctors can sometimes can refer patients for counselling on the NHS. You may prefer to pay a counsellor. There are private counsellors all over the UK – you can get a list of counsellors in your area by sending an A5 stamped addressed envelope to: British Association for Counselling. Check what the fees are before you book, as private counselling can be very expensive.

If you feel you really need to talk urgently then call The Samaritans on 08457 909090 or Saneline on 08457 67 8000. You can talk to a trained volunteer in confidence about anything.

Using relaxation techniques can help your body – and mind – to become more relaxed. You can do this with special breathing exercises.

Many local colleges offer day and evening classes in relaxation techniques and relaxation activities like yoga and aromatherapy. Check at your local library for details.

Vigorous physical exercise can help you relax. The physical effort helps to unwind tight muscles so that your body feels more relaxed and leaves you with a general feeling of well-being. Keeping fit can also help you cope with the physical demands of caring. Any kind of vigorous exercise will help – walking briskly, swimming, cycling or attending a keep fit class. Your local library should have information about what’s available locally.

What to do if you think caring is becoming too stressful. If you have tried everything we have suggested and you still feel stressed, it might be time to look again at your situation. Think very carefully about whether you can go on caring. If the honest answer is ‘no’, try not to feel you have failed in some way. It’s better to be realistic and make good alternative arrangements than to carry on regardless until you reach breaking point.

There may be other options that will allow you to reduce the burden of caring without giving up altogether, such as:
Getting additional help at home or regular respite care. Once you have been caring for 22 weeks you can have four weeks break every six months. (Note: however that taking a break can affect some benefits, and the system is quite complicated. It is best to seek information before you take breaks to ensure there are no problems.)

Letting go of some of the practical problems of caring may give you more ‘quality time’ with the person you care for.
Alternatively, it may be time to start thinking about residential care. It’s important for you to take a break from caring on a regular basis. Every moment is precious – whether you take the odd hour off, spend half a day doing something you enjoy, meet up with friends for an evening or take a two-week break. It is important that you find ways to take a break to stop you becoming completely exhausted or even unwell and it also means the person you care for has a break from you, other people to talk to and other things to talk about. And, if the person you care for is used to it happening occasionally, it will make things easier if ever you need someone else to care for them.

However, taking a break can be easier said than done when you need to care for someone and you have little time or money to spare. Try to involve the person you care for in deciding what arrangements are made. It is a good idea to introduce the temporary care provider gradually so everyone can get used to each other. Make sure the care provider knows the routine they will need to follow, and make sure they have any essential information including contact telephone numbers in case of an
emergency.

Carers UK can provide information on who can help when you need to take a break, whether its temporary care in the home, day care away from home, a residential break or a holiday.

Posted in Carers | Comments Off

Benefits & Rights

September 3, 2009

When a person suffers from an illness such as OCD/BDD, it is often the case that their family and friends are also affected by this.

Benefits for Carers: What’s available and where to get them?

There are many of types of benefits that are paid to people by the Government. The benefits system is complicated. If you are not sure whether you can claim, get advice from your local Citizens’ Advice Bureau, the DWP’s Benefits Enquiry Line, The Prince’s Royal Trust for Carers , Carers UK, or Age Concern branch.

The main benefit for carers is the carers allowance. More information on this can be found here Carers Allowance.

Legislation

From 5 December 2005, new rights extended legal protection against disability discrimination to thousands more people.

Some quarter of a million more people now have protection under disability discrimination laws, effectively from the point they are diagnosed with cancer, multiple sclerosis or HIV, closing a major loop hole in the law.

In addition, people with mental health conditions will no longer have to prove their condition is “clinically well-recognised” to use their rights under the DDA. As for those with physical impairments, they only need to prove that it has a “substantial impact” on their lives.

Other new duties make it unlawful for local authorities and private clubs to treat their disabled members less favourably. From December 2006, a new public sector duty will require all public bodies in Britain to lead by example and integrate disabled people in their policy-making from the outset as well as to promote equality of opportunity for disabled people. This is similar to existing duties under race legislation and will be an important driver to achieve equality for millions of disabled people.

Details on the new legislation are available from:
The equality and human rights commission (formally the DRC) or by calling the commission’s Helpline on 0845 604 6610

Definition of disability: DRC consultation

This definition of disability in the Disability Discrimination Act 1995 (DDA) has been the subject of criticism since it was first introduced.

In 2004 the Parliamentary Scrutiny Committee on the Disability Discrimination Bill asked the DRC to consult on changing this definition to one which provides protection for anyone who has any level of impairment, without having to show a long-term or substantial impact on functional ability (as is the case at present).

Posted in Carers | Comments Off

Recent Creative Posts

Submit a Creative Post »

Helpline: 0845 390 6232 / 020 7253 2664
Helpline email: support@ocdaction.org.uk

Office: 020 7253 5272
Office email: info@ocdaction.org.uk