By Barbara Van Noppen, PhD and Michele Pato, MD
Finally, after years of not knowing where to turn, someone has given it a name. A family member has been diagnosed as having Obsessive Compulsive Disorder (OCD) and you want to learn all you can about the disorder. Caring about your loved one with OCD, you have undoubtedly wondered “What can I do to help?”
After years of working with families who have a member with OCD, we have found some repetitive themes: feelings of isolation, frustration, shame, even guilt. Families wonder, “Why don’t they just stop?” Foremost, is a plea for help, “What should we do?” Family members usually feel distraught, bewildered, overwhelmed and frustrated. In an effort to help, you have probably tried to demand that the person with OCD stop his/her “silly,” “ridiculous” behavior. Or, at the other extreme, you have assisted him/her with rituals or actually performed compulsions, such as hand washing or checking, just to “keep the peace” (known as Family Accommodation). Either extreme has a disruptive effect on your family’s functioning, results in family member stress, and can lead to an increase in obsessive-compulsive symptoms. Family conflict inevitably results. As your attempts to “help” the person with OCD are rejected or ineffective you begin to feel helpless or impotent. Below are four suggestions about how you can be helpful to your family member:
- Become educated about OCD.
- Learn to recognize and reduce “Family Accommodation.”
- Help your family member find appropriate, effective treatment by a qualified professional.
- Learn strategies about how to respond if your family member refuses treatment.
Education is the first step. Learn as much about OCD as you can: read books, join the Obsessive Compulsive Foundation (www.ocfoundation.org), find out if the state you live in has an OCF affiliate, attend OCD support groups, research online, etc. As you learn more about the disorder, you begin to feel hopeful that you can do things to help the person with OCD overcome their disorder. OCD is a biochemically-based disorder with clinical symptoms that go beyond personality traits. As your understanding increases, you will be able to view the irrational behaviors from a non-personalized perspective. If you have been neglecting yourself, engage in self-care that will impact your ability to problem solve and respond to your family member more constructively. Your family relationships will improve and the person with OCD will feel more supported. Positive family relationships and feeling understood greatly enhance the therapeutic benefits of treatment.
Recognizing and Reducing Family Accommodation Behaviors
Families are constantly affected by the demands of OCD. Results from research investigating family and OCD suggest that family responses may play a role in maintaining or even facilitating OCD symptoms. The more that family members can learn about their responses to OCD and the impact that their responses have on the person with OCD, the more the family becomes empowered to make a difference! Consider the following responses you might engage in when responding to your family member’s struggle with OCD symptoms. Is this is something you never do, do sometimes, or do all of the time?:
- Participate in the OCD behavior. You participate in your family member’s OCD behavior along with them. For example, washing your hands whenever they wash their hands or ask you to wash your hands; providing excessive reassurance; performing extensive checking rituals.
- Assist in avoidance behavior. You help your family member avoid things that upset them. For example, doing their laundry for them and following prescribed orders so it is done the “right” way; opening doors, handling raw meet, changing diapers.
- Facilitate symptomatic behavior/rituals. You do things for your family member that allows them to engage in symptomatic behavior. For example, buying excessive amounts of cleaning products for them, providing extra storage space for hoarding.
- Modifying Family Routine. For example, you change the time of day that you shower or when you change your clothes in order to accommodate your family members’ OCD demands that seem to take precedence.
- Take on Extra Responsibilities of Others. For example, going out of your way to drive the person with OCD places when they could otherwise drive themselves, but feel unable due to OCD fears or anxiety, doing homework or other household chores for the person.
- Modify Leisure Activities. For example, your family member encourages you to not leave the house without them. This type of modification interferes with your interests in movies, dinners out, time with friends, etc. Another example of this is complying with the request not to have company over due to disruption in OCD rituals.
- Interference in Work Functioning. For example, you cut back on hours at your job in order to take care of your family member go in late because of assisting the person with OCD.
Parents have often talked to us about the fact that they give in to unreasonable demands because their son/daughter is so unhappy most of the time, and because they themselves feel so powerless over the symptoms. We have worked with families that go out at midnight to buy fast food or cleaning supplies for a son or daughter who has OCD because he/she demanded it and the parents felt it could make them more comfortable and or happy. Although understandable this type of accommodation only inflates the person’s sense of power and control and can be detrimental to normal child and adolescent development. Blaming family members is unproductive. Rather, family members can learn how to become involved in the treatment in OCD and may play a critical role in facilitating improvement in functioning, as opposed to enabling the continuation of symptoms. By learning supportive behaviors that extract you from the compulsions as a family member, you can make a difference in the course of your loved one’s symptoms and in their life!
What to do Instead
It has been our observation that education and an emotional understanding of what it is like to experience the symptoms of OCD should accompany the family’s efforts to intervene. Since many people with OCD are otherwise very functional it is no wonder that you may tend to see the compulsions as behaviors that are within the person’s control to initiate or cease. This is a common misunderstanding. Coming to terms with the reality that your family member has “something wrong” with him/her which requires professional attention can be a painful process. Before you can effectively help, you must acknowledge the OCD and learn about it. You must know what the problem is before beginning to solve it!
If you have been an “accomplice” in the OCD and now recognize, this gently withdraw and hold the line, explaining that your continual involvement (accommodation) only worsens the disorder. On the other hand, if you have refused to have anything to do with the OCD besides yelling “knock it off,” you must stop that too and learn more so that you can say the same thing, but in a way that feels more supportive and shows your understanding of the struggle the person with OCD is experiencing. In any case it is essential to be consistent. This may mean talking with other family members to ensure a unified approach, otherwise your good intentions could be undermined. For example, in one family the mother stopped doing the laundry for her 28 year old son but her husband did it instead because they did not have an agreed upon plan on how to handle the OCD symptoms.
Helping Your Loved One Find the Right Treatment
Experienced clinicians agree that a multimodal treatment approach that includes medication, behavior therapy, and family education and support is optimal.
Several medications are available which have a beneficial effect for individuals with OCD. Medications that are typically tried first are ones that affect a chemical in your brain called serotonin. We believe that serotonin levels in the brain are associated with OCD. A number of these medications are marketed as antidepressants as well. This is fortunate since many patients with OCD additionally suffer with symptoms of depression including loss of interest and energy, poor concentration, difficulty with sleep, diminished sex drive, perhaps even suicidal thoughts. It is not always clear if these symptoms are secondary to the OCD, that is, depression in response to living with OCD or a separate illness (primary depression). Fortunately, the medications prescribed treat both the OC and the depressive symptoms.
It is important for people with OCD and family members to recognize that medication alone rarely takes away all the symptoms. Adding other treatment modalities helps the person with OCD to better control their symptoms. To date, it appears that medication only works to control and not to “cure” symptoms in most cases. Again, contrary to popular belief, medication by itself hardly ever completely obliterates the symptoms of OCD. When the medications are effective, most people with OCD say that it helps them to dismiss the worries and resist the compulsions more easily. Some effort by the person with OCD is necessary to decrease symptoms and medication may help to facilitate this process. Studies show that without cognitive behavior therapy, when the medication is stopped, symptoms usually return within several weeks and it once again becomes more difficult to resist urges to perform compulsions. Adding cognitive behavioral therapy particularly exposure and response prevention (ERP) offers the best hope of getting by with less medication or no medication in the long run.
Exposure and Response Prevention Therapy – The Gold Standard
Cognitive behavior therapy (CBT) is the clinically researched and proven effective treatment of choice for OCD, whether with or without medication. In particular for OCD, exposure and response prevention (ERP) is the potent ingredient of CBT. To proceed with ERP one must first generate a list of feared or avoided situations objects thoughts images or impulses that evoke distress. To decrease symptoms, people with OCD must expose themselves directly to those situations that are feared or avoided in a stepwise fashion, starting with the less distressing trigger and working up. Next, the person needs to be encouraged to resist or at least delay the compulsions they feel must be performed because of a feared consequence or heightened anxiety. This part is called “response prevention” As exposure and response prevention is practiced over and over the person with OCD learns that “nothing bad happens” when the rituals are resisted and his or her anxiety starts to decrease on its own (“habituation”). Be aware that exposure and response prevention often evokes an initial increase in anxiety. However, if the person sticks with response prevention, their anxiety will eventually come down. We have had patients and family members return to a session complaining that the OCD seems worse and that the treatment is not working. Although compulsions may decrease rapidly, anxiety and often obsessions can increase in the short term. It takes longer for anxiety and obsessions to extinguish. Persistence and repetition are essential.
ERP takes annormous amount of practice and patience as well as a strong sense of motivation to tolerate increasingly high levels of anxiety. A good analogy for exposure and response prevention is exercise. When a person begins to run for example, they start off at a slow pace and a small distance. As strength and endurance is built, greater distances can be covered at faster paces. Sore muscles along they way are interpreted as signs of good use in areas that were lacking conditioning. Have you ever heard anyone say they are giving up exercise because their muscles were sore and that it must be bad for them?
As a person begins ERP an initial increase in anxiety is often viewed as “I must be doing something wrong because this is supposed to make me feel better,” instead of ,”This anxiety is a good sign that I’m confronting the things that make me distressed, so I will feel more uncomfortable at first.” Too often people stop behavioral treatment because of the initial increase in anxiety, unaware that the habituation process takes time to occur. Compared to the length of time someone is symptomatic with OCD, decreases in distress and compulsions occur quite quickly with consistent use of exposure and response prevention. Despite this, most people are impatient and expect the worries to go away more speedily than is realistic. Even after compulsions stop, worries will linger because behaviors change faster than thoughts and feelings. Understanding all of this helps you as a support person to be a better coach.
Family intervention is an important adjunct to medication and behavioral treatment. One format that has been effective is the multifamily psycho-educational group. This can follow a support group format or be run by a professional (this is called Multi-Family Behavioral Treatment or MFBT). The intention of these groups is to gather together individuals with OCD, along with their family members, for the purpose of learning about OCD, its impact on the family, and strategies to cope. A group format provides a rare opportunity for family members and individuals with OCD to feel less isolated and less estranged. It is an empowering process to learn about OCD, share similar experiences and discuss alternative problem-solving approaches. You will feel relieved to know that others are struggling with the same fears concerns questions and conflicts related to OCD.
What to Do If They Refuse Treatment
I have received calls and letters describing perhaps the most difficult situation, when you have a family member who absolutely refuses any treatment or may even deny that the symptoms of a disorder exist. These are extremely trying situations that evoke feelings of despair. Sometimes you may have no choice left but to carry on with your life while reminding the sufferer periodically that you are willing to help, that you recognize their shame and distress, and that people get better from OCD. In general, people with OCD cannot begin behavioral or medication treatment unless they are willing to, or the stakes are so high that it acts as a motivator. Sometimes, when the discomfort or impairment becomes so great that it affects a job, relationships, enjoyment of life, the person with OCD will come forward to accept professional advice. Families have told me of watching the bottom “fall out” and just how badly things deteriorated before their loved one would admit to a problem. This is a painful process and you have choices as a support person. Often admission to “a problem” does not mean acceptance of the problem or giving into it; admission is the first step in being able to identify that the person has a legitimate neurobiological disorder with distinct treatment, rather than the problems stemming from character flaws. For the whole family acceptance is a process that takes time.
- Bring literature, video tapes, and/or audio tapes on OCD into the house. Offer the information to your family member with OCD or leave it around (strategically) so they can read/listen to it on their own.
- Encourage the person with the assurance that through available treatments most people experience a significant decrease in symptoms. There is help and there are others with the same problems.
- Discuss the ways in which you have been accommodating the OCD (when applicable) and how you need to work together as you disengage, so the person with the OCD knows you are doing so to support and help hem overcome the disorder not out of spite.
- Suggest the person with OCD attend support groups, with or without you, talk to an OCD buddy through online support groups, or speak to a professional in a local OCD clinic.
Get support and help yourself
- Seek professional advice/support for yourself from someone experienced with OCD.
- Find a family buddy (another family member going through something similar).
- Talk to other family members so you can share your feelings of anger sadness guilt shame and isolation.
- Attend a support group or find out about Multi-Family Behavior Therapy to discuss how other families handle the symptoms and get feedback about how you can deal with your family member’s OCD.
Allow natural consequences to occur for the person with OCD. Inform your loved one that it is in their best interest for you to be involved as little as possible with the behaviors they feel they need to perform to reduce discomfort. You are here to help them resist their compulsions, but you cannot assist or do them. Explain that you are doing all you can to understand their pain, but that your giving in to the unreasonable demands will only make the situation worse. In severe cases when the person with OCD is simply unwilling to cooperate, to negotiate agreements, to reduce accommodation, you may need to refuse to be involved with the OCD—no reassurance giving, no extra hand washes, no checking, no avoidance. Remind him/her that your giving in may make him/her feel better temporarily, but that it doesn’t help the symptoms to decrease, in fact it only makes them spiral downward. This may motivate them to seek treatment particularly if they start to be late for work, or miss school more often. In some very severe cases, a sufferer will eventually choose to move out of the house or need to be encouraged to do so. If the sufferer is not a minor, lives alone and is not a danger to him/herself or others, there may be only so much you can do to get him/her to seek help.
Above all, remember you have a life to and a right to that life! Self care is critical as is maintaining your work and social functioning as optimally as possible. You and other family members may need to seek advice/support/CBT from a clinician experienced in OCD. The best thing you can do is take action now. Don’t wait !
Barbara Livingston Van Noppen, PhD is an Associate Professor in the Department of Psychiatry and Human Behavior and Assistant Chair of Education Keck School of Medicine University of Southern California. Dr. Van Noppen provides CBT supervision and didactic education to psychiatric residents in the USC Keck School of Medicine program.
Michele Tortora Pato, MD is the Della Martin Chair in Psychiatry and Associate Dean for Academic Scholarship at the Keck School of Medicine-USC.
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