From: Obsessive-compulsive disorder: An information guide ( © 2001 CAMH)
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In Mary's family, Mary's OCD became the uncomfortable centrepiece of family life. Mary's fear of contamination led her to wash her family's clothes over and over again. If she didn't, she feared they would become ill and it would be her fault. As Mary's OCD symptoms worsened, she was so afraid of causing the family harm by touching their clothes that she was no longer able to wash their clothes herself. Her husband took over this chore, performing it under Mary's careful supervision. Sometimes someone in the family would become angry and confront Mary over what she agreed were irrational fears, but she was powerless to change. When Mary's OCD was at its worst, she felt that none of her family's clothes were cleaned sufficiently to be worn safely, and she would not allow any of them to leave the house.
When someone in a family is ill, everyone is affected, not just the person with the illness. This is true whether the illness is diabetes or OCD. A mental illness brings added pressures. Fearing prejudice, families can become isolated as they struggle to make sense of the diagnosis and treatments.
The symptoms of OCD may not be diagnosed for a long time. Many of the thought patterns and behaviours of OCD are common among the population, but are within normal limits. If a man complains that his wife cleans too much, or that his son hoards newspapers, people may not take him seriously. A common response might be, “I wish my wife would clean around the house more often,” or “Why complain if your son saves newspapers. Is it really any of your business?” When untreated, the symptoms of OCD interfere with normal family life, often to a great degree. It is not unusual for a family to suffer for years before these symptoms are finally diagnosed.
Once an accurate diagnosis is made, getting effective treatment can be difficult. The community may have few professionals experienced in treating the disorder and no groups available to provide support. Even when the appropriate treatment is found, sometimes people with OCD are reluctant to be treated. They may also reject attempts the family makes to work together to manage the illness.
It’s natural for families to feel resentful or disappointed when OCD interferes with normal family life. Acknowledging the illness can be the first step toward feeling less isolated and freeing your energy for caring for both your relative and yourself.
People with OCD often try to involve family members in compulsive rituals. To keep the peace, family members may play along or help out with behaviours such as hoarding, checking and washing.When a family helps their relative in this way, they are “accommodating” OCD. For example, in one family a wife may buy extra detergent so her husband can wash clothes over and over again. In another, family members may agree not to throw away the piles of newspapers filling the living room.
Accommodating often begins with small compromises. Once it starts, it can be difficult to stop. For example, if a mother’s fear of contamination makes grocery shopping an ordeal, her son may go to the grocery store for her. At first, the son does the shopping as an occasional favour, but as his mother’s symptoms worsen, he takes it on as a regular chore. Eventually, he does all the shopping. His mother stays home, never leaves the house and becomes completely isolated.
Another way families respond to OCD is with disbelief or denial. They may find it difficult to understand why the person with OCD can’t just stop acting out the ritual that so clearly makes everyone unhappy. A family member may say, “I was able to quit smoking; why can’t you just stop all that checking?”
Families faced with the behaviours associated with OCD often experience complex and uncomfortable emotions. As the symptoms of OCD become more severe, the emotions that family members have may also become more severe. These emotions strain relationships and affect all aspects of family life. If allowed to escalate, the tension can become as hurtful as the disorder itself.
When someone in your family is diagnosed with OCD, you may feel many things. On one hand, a diagnosis brings a feeling of relief to finally know what the problem is. On the other hand, finding out that mental illness is the cause of your relative’s worry and behaviour can make you feel sad. You may fear how the illness will affect the future — for your relative and for you. If you are a parent of a child or young adult who has been diagnosed with OCD, you may feel guilty and responsible. You may fear that you have done something to bring this on, even when professionals tell you that this is not the case. Not surprisingly, you may feel angry that OCD has disrupted family life.
It’s normal to experience these varied and conflicting emotions. Understanding this, and learning to accept and manage your feelings, reduces the stress on you and helps you provide more effective care for the person who is struggling with OCD.
Here are some tips that can help you cope with the uncomfortable emotions that often arise when someone in your family has OCD. You can use these tips to help your relative recover.
- Learn as much as you can about OCD and its treatment. Being informed will help you understand the illness and help your relative to make changes. See the list of recommended reading and Internet sites.
- View your relative’s obsessive-compulsive behaviours as symptoms, not character flaws. Remember that your relative is a person with a disorder, but who is healthy and able in many other ways. Focus on the whole person.
- Do not allow OCD to take over family life. As much as possible, keep stress low and family life normal.
- Do not participate in your relative’s rituals. If you have helped with rituals in the past, it may take time and practice to change this pattern. In order for people with OCD to make progress, family and friends must resist helping with ritual behaviours. Supporting the rituals, including reassurance rituals, hinders progress.
- Communicate positively, directly and clearly. State what you want to happen, rather than criticizing your relative for past behaviours. Avoiding personal criticism can help your relative feel accepted while he or she is making difficult changes.
- Keep calm. Not losing your temper creates a good atmosphere.
- Remember that life is a marathon, not a sprint. Progress is made in small steps. There are times when no progress is made at all. Applaud progress when times are good and provide encouragement when times are bad. Your support benefits your relative.
- Mix humour with caring. Support doesn’t always have to be serious. People with OCD know how absurd their fears are. They can often see the funny side of their symptoms, as long as the humour does not feel disrespectful. Family members say that humour can often help their relative become more detached from symptoms.
- Know the signs that show your relative is struggling with his or her OCD. Here are some of the signs noted by family members:
- doing tasks over and over
- having trouble completing a task
- arriving late because of repeatedly checking
- feeling too responsible for harm that may come to others
- constantly asking for reassurance
- saving and hoarding
- washing too much
- avoiding being with people
- avoiding certain places or activities
- becoming irritable when rituals are interfered with.
- Support your relative’s medication and treatment program.
- Don’t forget that you are only human. While you do your best to support your relative, you will sometimes find yourself participating in a ritual or giving reassurance. Try not to judge yourself when you fall into old routines, in the same way you try not to judge your relative. Just start again. No one is perfect.
- Take care of yourself:
- Keep your own support network.
- Avoid becoming isolated.
- Know what situations within your family are most stressful in coping with OCD.
- Develop interests outside the family.
- Create a low-stress environment for yourself.
- Take a little time each day just for you.
Mary’s family was relieved when her OCD was finally diagnosed. Mary herself was relieved to discover there were treatments available. At first, she doubted the treatments could really help her, but she genuinely wanted to lead a more satisfying life and knew her problems made life difficult for the whole family. She made a firm commitment to follow through on the therapy recommendations.
Her family recognized that they were going to need some help as well. They wanted to be able to support Mary. They attended support groups, read books about OCD, and followed through on the recommendations. For the first time, they were able to openly discuss Mary’s OCD as a problem for the whole family.With the support of her family Mary was able to remain committed to her treatment program. Everyone benefited as family life began to improve.
Caught up in concern and caring for the person who is ill, family members may not take proper care of themselves. They may give up their own activities and become isolated from their friends and colleagues. This may go on for some time before they realize they are emotionally and physically drained. The stress can lead to sleeping problems, exhaustion and constant irritability.
You need to know these signs of stress and look after your own physical and mental health. Recognizing your own limits and making time for yourself are keys to “self-care.” Make sure you have support from reliable friends and relatives. Mental illness is a hard thing for some people to grasp. You may want to confide only in people you know to be supportive.
Sometimes it is wise to get professional support. Join a self-help organization or support program for relatives of people with OCD. One may be offered by a community mental health organization, clinic or local hospital.
Keep up your interests outside of the family and apart from your ill relative. Know and accept that sometimes you will feel negative about the situation. These feelings are normal and should not cause guilt.
Explaining OCD to children can be awkward and difficult. Not knowing how to explain it, or perhaps thinking that children couldn’t understand, parents may say nothing. They may try to protect children from OCD and continue with family routines as if nothing were wrong.
It is difficult to maintain this strategy over time because the symptoms of OCD show up in behaviour. Children are very sensitive and intuitive. They notice when someone in the family has changed, or when tension surfaces. If the atmosphere in the family suggests that the subject should not be discussed, children will develop their own, often wrong, ideas.
Young children often see the world as revolving around themselves. This is especially true of children age three to seven years. If something happens that upsets people in the family, they may think it is their fault. For example, if someone fears contamination and becomes upset after a child touches a “contaminated” object, the child may assume he or she is the cause of the ill person’s extreme behaviour.
To explain mental illness and OCD to children, it is important to tell them only as much as they are mature enough to understand. Toddlers and preschool children can understand simple, short sentences. These need to be worded in concrete language without much technical information. For example: “Sometimes daddy feels sick and it makes him upset.” “When mommy is sick, touching the sink makes her upset.”
Elementary-school children can process more information. They are able to understand the concept of OCD as an illness, but may be overwhelmed by details about therapies and medications. OCD could be explained to children of this age group like this: “OCD is a kind of illness that makes people worry a lot about germs and getting sick. Worrying so much makes them do things over and over again.”
Teenagers are generally able to manage most information. They often need to talk about what they see and feel. They may ask about the genetics of this illness, or they may worry about the stigma of mental illness. Sharing information creates more dialogue.
When speaking to children, it is helpful to cover three main areas:
- The parent or family member behaves this way because he or she is sick. It is important to tell children that the family member has a sickness called obsessive compulsive disorder. OCD should be explained as an illness. You might explain it like this: “OCD is like chicken pox or a cold, except that rather than giving people spots or a runny nose, it makes them worry a lot, sometimes for no reason. This worry makes people with OCD check things over and over, or stay away from things that bother them or collect stuff. Sometimes, they want people in their family to behave the same way. OCD takes a long time to get better. People with OCD need help from a doctor or therapist.”
- Reassure the child that he or she did not make the parent or family member get this illness. Children need to know they did not cause their loved one to develop the illness because of something they did or did not do. People with OCD may become depressed as they struggle with their symptoms. It is important to reassure children they did not make their loved one sad.
- Reassure the child that adults in the family and other people such as doctors are trying to help the affected person. Taking care of someone with OCD is an adult responsibility. It is not something children should worry about. Children need the well parent and other trusted adults to shield them from the effects of living with someone with OCD. Children should talk about what they see and feel with someone who knows how hard it is for their mother, father or relative to struggle with the symptoms. Many children are scared by the changes they see in their loved one. They miss the time spent with that person. Doing activities outside the home helps because it exposes children to other healthy relationships. As the ill parent recovers, slowly resuming family activities can help mend the relationship between the children and the ill parent.
Both the ill parent and the well parent should talk with the children about explaining the illness to people outside the family. Support from friends is important for everyone, but OCD can be hard to explain and some families worry about the stigma of mental illness. How open you and your children want to be is a very individual choice.
Finally, some parents struggling with OCD may find that they are less patient and more easily irritated. For them, the loud, messy, chaotic play of children may be very hard to tolerate. Structured routines ensure the ill parent has quiet, restful time, away from situations that might trigger stress and conflict. You may need to plan time for the children to play outside the home, or arrange for the ill parent to rest for part of the day in a quiet area of the house.
Once into recovery, it helps for the parent who was ill to explain his or her behaviour to the children. The recovered parent may need to plan some special times with the children. He or she may need to re-establish the relationship and reassure the children that he or she is now more available to them. In some instances, working with a therapist to formulate a plan can be very helpful.