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January 2004
“HELP! MY LOVED ONE WON’T COOPERATE!”
Using the Support Group as a Way to Facilitate Cooperation
by Ruth Z. Deming, MGPGP
New Directions Support Group
Abington, PA
We hope this short guidebook will be of help to you in getting necessary treatment and medication for your resistant family member. We welcome feedback and any ideas that have worked for you. For purposes of clarity, we’ll call the patient “Terry.” And will refer to the illness as “bipolar disorder.”
Although this handbook is written for you, the family members and loved ones, we encourage the patient to read it, as well.
(Many of the ideas expressed here are not our own, but have been culled from writings and teachings of NAMI programs, TEC Family Center programs, and the works of authors such as Dr. Xavier Amado.)
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First, a few definitions, as used by the mental health community:
Insight – This is when a patient understands – or has insight – that he or she has a “mental” or “emotional condition.” It also refers to the patient’s understanding of the necessity of getting treatment for the condition. Treatment almost always includes medication and therapy. Unfortunately, many patients lack insight.
Denial – A lack of insight. Pretending that the illness does not exist. Rejecting evidence that the illness exists.
Compliant – Doing what the doctor tells you; making appointments; seeing a therapist; taking medication.
Non-compliant – Someone who does not comply with the doctor’s orders. The patient may refuse to take medication at all, may only pretend to take it, may skip doses or take it only when he feels like it.
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INTRODUCTION
It’s bad enough when your loved one is diagnosed with bipolar disorder or other mental condition. It’s even worse when he or she won’t comply with treatment, and, more particularly, take medication. Non-compliancy imposes an unhealthy lifestyle on both patient and family member and makes life miserable for everyone concerned.
Let’s begin with a universal scenario. Terry is suffering from bad depression. It only seems logical that he or she would want help, see a doctor and accept medication to treat the illness. What could be more logical?
Most people see the necessity of doing this. However, others refuse, whether it’s refusal to see a doctor or to get treatment. This is one of the worst scenarios that can befall a family. It is the source of misery, multiplied onto every single member of the family.
What makes the situation even worse is that Terry is most likely a person of high intelligence and potential. Why then, you ask yourself, would someone as intelligent as Terry refuse to take medication.
INTELLIGENCE HAS NOTHING TO DO WITH IT
Be aware that intelligence has nothing to do with insight. Accepting one’s illness and taking medication for it go beyond the bounds of rationality. Something else is going on, which we’ll explore later. And we’ll also give you a powerful strategy to help the situation.
Terry probably knows deep down, or unconsciously, that the diagnosis is true, but he or she is unable to acknowledge this. And, you, as the loved one, are most likely suffering from varying degrees of stress, exasperation and anger. Who wouldn’t be! You do indeed have a lot to be angry and frustrated about. Many family members seek counseling for themselves, especially if Terry is living at home.
Discuss your situation and your feelings with as many understanding people as you can. Do not keep your feelings bottled up. It’s not good for your health. And it’s OK to discuss Terry with other people. After all, Terry is a part of your life and the situation should not be treated as a top secret.
Talking acts as a marvelous de-stressor. As we’re fond of saying, storytelling is a form of healing.
The Support Group is one of the best ways to relieve your own anxiety and to feel you’re not the only one with this problem.
(Later on, we will tell you why The Support Group represents the best strategy we know of to influence Terry to get help.)
First, we want to introduce you to some concepts that will help you better understand what Terry is going through and why he or she is putting up such a fuss.
DIAGNOSIS: BIPOLAR DISORDER OR DEPRESSION
There are 4 very difficult issues faced by a person with bipolar disorder:
– the diagnosis itself (fraught with stigma);
– the disease itself with its difficult ups and downs;
– the need to take medication;
– the emotions stirred up by the diagnosis and need to take meds.
People meet the challenges of the illness in different ways. It’s important to realize that everyone diagnosed with bipolar or any other illness goes through a gamut of tremendously upsetting feelings.
Here are the most prevalent feelings and thoughts faced by the newly diagnosed patient.
Shame – “I’m different than everyone else. I’m ashamed to have a mental illness. I feel I’m flawed and can no longer be the person I used to be.”
Fear of the unknown – “What will happen to me in the future? Will I get worse? Will I lose my job? How will I support my family? Will I be able to be a good parent?”
Anger – “Why did this happen to a nice person like me?”
Blaming God or someone else – “God must be mad at me and gave me this illness as a punishment.” Or, “If you weren’t so mean to me, Mom, I wouldn’t have this illness.”
Guilt – “I must have done very bad things to develop a serious condition like this.”
Feelings of disappointment – “How will I fulfill my obligations as a mother, a father, a spouse, or a member of the work force?”
You can see that the diagnosis floods the mind with a powerhouse of thoughts and feelings.
For the person in denial, the diagnosis may be extremely difficult or impossible to accept. Being diagnosed “bipolar” may be perceived as a supreme assault on a person’s psyche: To their wholeness and dignity as a human being. Acceptance would bring about an intolerable loss of self-esteem, a crumbling of one’s interior life.
UNDERSTAND WHAT THE PATIENT IS GOING THROUGH
The most important things you as a loved one should do are: empathize with the patient. And learn excellent communication skills in order to get the results you want: Getting Terry better.
WHICH CATEGORY FITS YOUR LOVED ONE?
Let’s be a little more specific and identify which category Terry generally falls into. Just reading the following will help you know that you are not the only person going through your situation and that you will find a model below that helps describe Terry.
High functioning: Although Terry refuses to take medication, he is able to hold down a job and support his family. From time to time he or she may have “episodes” – of mania or depression – which take a huge toll on family life. During the episodes he may agree to take medication and then when the symptoms die down, he’ll go off the meds, shrugging the illness off as being a “fluke” that will never happen again.
It is often in cases like this – where the ill person goes on meds, finds relief, and then discards the medication entirely – that one spouse leaves the other, or threatens to.
Moderate functioning: The individual is “limping along” through life, not meeting his or her potential but only getting by. May go from job to job.
Poor functioning: The illness has taken such a toll that the person is simply nonfunctional. They may lie around the house all day watching television.
PRELIMINARY STRATEGIES
The first order of business is to find the best psychiatrist (and therapist) for Terry. This includes 2 things: Competency and relationship. Without both, Terry will go nowhere. Also, if Terry is into this, encourage him to go on the internet and find out all the information he can about bipolar disorder. There are many good web sites that offer information, hope and inspiration. Younger people nowadays “go to the web” for everything.
There is always hope that Terry will change. We never let go of hope. But neither do we expect miracles. What we must do is take a look at the situation, assess it, look at past behavior, and tell ourselves, “This is the way things are.” Perhaps things will change, gradually. But it is also possible that things will stay the same or even get worse. What is necessary is to try our best to fix the situation: To gather all the information possible for ourselves, to use our intuition and the advice of others when we attempt to influence the individual, while understanding that the final decision – whether or not to comply – is up to that individual.
– Intervention. Keep in mind that you, as a family member, are often the last person in the world Terry will listen to. This is normal. Call in someone else to intervene. A respected relative, friend, or pastor may be called in to give Terry the facts of how his behavior is affecting himself and his loved ones. In Alcoholics Anonymous, this is termed an “intervention.” In our experience with mental health clients, interventions don’t usually work. Try it anyway.
THE SUPPORT GROUP STRATEGY
and THE ART OF SUBLIMINAL MESSAGING
We are very excited about the possibility that your involvement with a support group will lead to a turnaround in Terry’s thinking. Here are the steps:
Tell Terry about the support group meeting. Chances are, if he’s in denial, he won’t want to go the first time. But once we get Terry to a meeting and he’s with people like himself, it will be easier for him to gain acceptance of his illness. One of the critical factors for Terry is that he view firsthand other people with bipolar disorder, and see that they are normal-looking. This is very important. No one wants to identify themselves with people who have the stereotyped classic look of mental illness.
If Terry is not interested in attending, go by yourself or with your spouse or sibling. Tell Terry you are going. This action on your part may be the spark to get him moving or thinking. Your action will tell him that you, at least, are taking his illness seriously, and that you intend to do something about it.
– Attend the meeting. Gather all the information and resources you can. Make sure to take handouts and phone numbers of people you meet.
– After the meeting, leave literature prominently on the table for Terry to see. You are literally putting things out in the open and not keeping it a secret that you attended the meeting. It’s best if attending meetings are not done in secret. This would only reinforce the “shame issue” associated with mental illness.
Terry will most likely look at the information. He may also ask questions about the meeting. “Do the people work?” – “Are they functional members of society?” – “Are they drugged up?”- “Do the people look normal?” The latter two are of utmost importance to Terry.
At this point, let’s stop a minute and discuss ways to communicate with Terry. This is where the art of communication comes in. It’s the way to lead Terry to the truth about himself.
To Terry, any talk about bipolar is scary. And he doesn’t want to hear your opinions about what you think best for him. He’s in a state of fear and we don’t want to exacerbate that feeling.
So, tread carefully. Because you are the healthier person, you are in a position to use sophisticated communication skills that in the end we hope will persuade him to see things rationally.
Learn “the language of reconciliation.” This is a way of talking to a person that makes them feel respected and understood. The person does not feel judged or put down. The other way of talking is “the language of discord.” For starters, let’s say your young child has come home from school with a picture he’s drawn of his house. He shows it to you, his parent. Can you imagine if you exclaim, “What a silly looking house!” That’s the language of discord.
The language of reconciliation includes conciliatory behaviors, or actions that are meant to further the positive movement of an individual, rather than hindering the person. Included in this are: subtlety – lack of pressure – lack of nagging – empathy – restraint from talking about things that make the other person unduly uncomfortable – and allowing things to happen naturally.
Also encourage Terry to spend time with you. The easiest way to do this is to have meals together or to go out on excursions together, whether to the grocery store or out for a walk.
– Meantime, continue attending meetings. Continue leaving literature on the table. While Terry is within earshot, mention casually to a third party (spouse, someone on the phone) about how helpful the meeting was, how you felt you were not alone and especially how the members looked healthy and optimistic.
– Use your considerable intuition. After all, you know Terry as well as any one does. When the time is right, suggest that he may enjoy attending a meeting with you. “Terry, we’re going to a meeting on Tuesday night. If you’re not going out, you might like to come with us.” You may need to do this several times before Terry will agree. But his curiosity has probably been piqued. And, remember, he does know deep down something’s wrong with him and that he needs help. And hope. He’ll wonder if the support group can help him. Besides, he wants to see what’s going on. He doesn’t want his parents talking about him behind his back.
– We’ve seen this strategy work! Get him out to a meeting and he may eventually take responsibility for himself.
Lest you think we are a bunch of polyannas, there are stern approaches to the problem as well. Who’s to say that yelling won’t in some cases do the trick?
You, better than anyone, know how your loved one behaves and what kind of treatment he responds to. Use both your intelligence and your intuition to get Terry better. The value of intuition cannot be overstressed. Make use of it!
Our motto is, “Whatever works.”
Know ultimately that you have done everything in your power to help Terry.
The final decision on whether to cooperate can only be made by him.
And by the way, though this is easier said than done, don’t make Terry the center of your life. This is bad for Terry and bad for you. Develop your own life. Let the situation draw you and your family closer together, rather than farther apart. If need be, see a professional for yourself or for the whole family. Bipolar disorder affects the entire family. Bipolar disorder, to say the least, makes demands on us all.
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MEDICATION AS A SYMBOL FOR ‘BEING FLAWED’
Many people in general hate taking medicine. They interpret it to mean they are not whole, that they are flawed. People with mood disorders are extremely sensitive individuals. You already know this. To the person with a mental illness, medication may be perceived as a tangible symbol that there is something wrong with them. That they are “an outsider” – “different”- “a misfit.”
For this reason, just the thought of medication may be temporarily out of the question.
The individual lacks insight that medication is necessary.
Again, it is vital for family members and friends to come to a deep understanding of why the patient is in denial.
For those of you whose loved one has had negative experiences with medication (“It only made me worse” – “It made me fat”) acknowledge these very real and valid responses. Help Terry do research on the internet to find information about medication. Be very supportive of the necessity of getting medication that is right for Terry.
A Paradox
Believe it or not, some patients deny the fact that they have bipolar disorder but agree to take medication anyway. In this case, the strategy is to downplay the statement, “You have bipolar disorder.” Instead of using the word, “bipolar,” use other words that are perceived as kinder and gentler, such as “hyper” – “revved” – “down” – “low.”
This is not denial. It’s merely shifting from a medical/clinical perspective to an arena in which we all live: real life.
FURTHER STRATEGIES
Again, the keys to winning, to breaking through the denial system, are to stand back, be subtle, let time take its course, wait it out, don’t nag, and go on with your own life.
Dr. Amador in his book “When a Patient Refuses Treatment” refers to 4 key points: Listen, empathize, agree, and negotiate:
Good communication between you and Terry is vital. Again, he may not be able to listen to you. He may perceive your words as “attacking him,” which is why we recommend the use of the “language of reconciliation.”
In addition, learn to be a good listener, or, what, in therapy circles is called an “active listener.” The “sense of being heard” is priceless to a person. We do this by just being with a person and listening to what they have to say. We don’t interrupt, argue or interject. Just sit quietly with the person, be with them, and listen. “Active listening” is an extraordinarily powerful communication tool.
Listen to Terry’s thoughts about bipolar and about medication. Don’t protest or argue. Arguing does no good. It will only intensify his resistance. He perceives that he is under attack. Allow yourself to see things from his point of view. This may be difficult. You don’t see things from his point of view. But it’s necessary to push aside your own thoughts and try to see life through his eyes.
Agree. After you’ve truly empathized with him – and this might take some doing – tell him you can understand why he doesn’t want to take medication. “Yes, I can see why you think medication might cloud your thinking or make you gain weight.”
Negotiate, – join with the person – get on the same wave-length. These are all ways of saying, “I’m with you and want to work to help you.” The following are “nice ways” of leading Terry out of his denial system.
“Is there anything I can do to help you feel better? I can see the pain you’re in.”
“I hate to see you feeling this way. What could we do to help you feel better? Do you have any ideas?”
Nice ways of talking about medication
Don’t blitz the person. Don’t actively try to convert him. Be subtle. Do a little at a time.
“I wonder if it might help you to try the medication the doctor gave you.” Don’t badger the person.
“I seem to remember that when you were on Depakote a few months ago, you told me you’d never felt better in your life.”
“Try it for a while and see what happens.”
“The doctor says if you’re not happy with it, you can always go off.”
In the beginning, the patient needs to feel there’s a “way out,” that he’s not doomed to take medication forever. This is critical to some patients. Who, anyway, wants to stay on medication forever. What we hope is that the patient will go on medication, enjoy the way he feels, and decide to stay on it.
Know that there are no magic solutions, no magic answers to get Terry to take his meds. Your best bet is to absolutely accept the fact that “This is how it is now.” By coming into acceptance and not reaching for false hope, you will be at peace with yourself. You will be calmer, less agitated and more able to speak to Terry with compassion, even while disagreeing with him, and to leave your anger aside.
ENTRY POINTS
As mentioned a support group poses an excellent point of entry to acceptance. Some other relatively nonthreatening ways include:
– Therapy. Advise your loved one to get therapy instead of medication. Terry and the therapist will hopefully establiship a “therapeutic relationship” which will pave the way for the therapist to make a psychiatric referral.
– Talk to other people who are in your same situation. Talk to them and share your experiences. Listen to theirs. Cull their experiences and devise your own strategies.
WHEN YOU’VE REACHED THE END OF YOUR ROPE
– The ultimatum vs. a threat. A threat is a “maybe.” An ultimatum is “final.”
– Letting go. In certain cases, “ultimatums” are the last resort to get the person to take their meds. It indicates that you are “sick and tired” of living with this individual and his or her erratic behavior and want out. If you want to resort to this, make sure you have the strength and determination to carry it out. Otherwise, the patient will ignore or laugh off such threats.
An ultimatum is a crucial life decision. As with all life decisions, discuss it extensively with the people closest to you.
An example of an ultimatum is, “If you don’t make an appointment with your doctor by next Saturday, I won’t be able to live with you any longer. It’s too hard on me and the children to live with your illness when there’s treatment out there.”
Then, of course, you will have to live by your words. We certainly don’t recommend you throw him or her out in the cold. You may have to make all the arrangements, as he won’t be likely to comply, but find a place he can safely go to. This will take time.
Get plenty of support from your family and friends for your ‘letting go.’ And if this is what you really want, stick with it! You must weigh the benefits of how much you are willing to put up with, with how much you need your own freedom.
Common occurrences
– With each progressive year of non-compliancy, it gets harder for the patient to change their mindset and go on medication.
– When a patient is in the midst of crisis – severe depression, mania – they may consent to go on medication. They may also be involuntarily committed to a hospital and receive medication. This compliancy, however, is probably short-lived. When the crisis is over, he or she will revert back to their non-compliant state.
– When couples are in danger of splitting up, the ill person will agree to take medication, but when the marriage crisis is over will begin slowly missing doses and then stop altogether. We’re back at the starting gate.
(Point of hope: There is always the possibility that such a crisis will “turn around” the ill person and they will stay on meds.)
WHY MUST LIFE BE SO HARD?
Life is the way it is. Challenges and hardships befall each of us. It’s how we handle them that matters in the end. There is no right way or wrong way of doing things. Peace is what we’re after.
You well know that the only person in life you can change is yourself. Keep reminding yourself of this. You may try to persuade others, but you cannot change them.
Build the most satisfying life for yourself you can. Build wonderful relationships that can take your mind off your home life. And have a a life outside the home.
Pat yourself on the back and tell yourself, “I am doing the best I can. I am open to all suggestions. I will learn to live with this situation and be at peace with myself.”
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Ruth Deming is founder/director of New Directions Support Group for people with mood disorders and their families and friends. She was diagnosed in 1984 with bipolar disorder. Ruth has had extensive experience with reluctant patients and their frustrated family members. The support group has often been a boon to both.
New Directions also recommends every family to be aware of the excellent NAMI (National Alliance for the Mentally Ill) groups in the area (www.NAMI.org), who offer excellent Family-to-Family programs. New Directions works with NAMI groups in addition to the fine TEC Family Center in Philadelphia. TEC’s classes on Learning to Live with a Loved One with Mental Illness are state-of-the art. For info, call Edie Mannion at 215-751-1800, ext. 232.
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