I have previously written advice to clinicians on how best to help their patients,1 followed by advice to patients on how best to cope with their psychiatric problems.2 This third in the series provides advice to families on how best to cope with the psychiatric problems of a family member.
In the near future, I will post the fourth and final installment in the series—advice to our society on doing a much better job of helping our mentally ill live safe and productive lives.
My 50 Tips to Families Based on 50 Years of Experience
1. It is completely natural to blame yourselves for the psychiatric troubles of your loved one, but most often it’s neither rational nor helpful.
2. Severe mental disorders have multiple and mysterious causes. Family stress, if involved at all, is usually only a minor contributor. More often, family stress results from, rather than causes, the individual’s psychiatric problem.
3. Feeling irrationally guilty not only hurts the family, it also reduces its ability to see things clearly and provide the optimal combination of supports and limits for the loved one.
4. If the family member has a psychiatric problem that’s only mild and transient, it will likely have little negative impact on the family and may even strengthen family bonds as everyone pulls together.
5. In contrast, psychiatric problems that are severe and persistent can create severe and persistent family stress and conflict and will likely have a profound and sustained impact on the lives of all close family members.
6. How well the family copes with the person’s psychiatric problem usually influences how well he will cope with it. And how well he copes with his problem will reciprocally influence how well the family copes with him and with it.
7. Having a family member with a severe and chronic psychiatric or addiction disorder is probably among the most challenging stresses any family can ever face—just as tough as dealing with chronic medical illness and severe financial problems. Some families get closer; some fall apart; only a few stay the same.
8. Family coping depends not only on the strength and resilience of its individual members, but also how well and consistently they work together and are able to support each other. Family therapy may help improve family coping.
9. Don’t feel you have to hide the family’s psychiatric problem. Societal stigma is rapidly diminishing and increasingly everyone is coming to understand that there is no shame in having a mentally ill loved one.
10. Seeking help earlier rather than later will greatly reduce the severity of symptoms, problematic behaviors, impairment in functioning, risks, burdens, and complications.
11. Be a very well-informed consumer. Learn all you can about the diagnosis; treatment alternatives; insurance coverage; housing; disability; navigating the mental health and medical systems; and how to access social services. Never be shy about asking questions and expect clinicians to have clear, convincing, common sense answers. The internet is a great source of information, but don’t believe everything you read.
12. Family sessions with clinicians are usually vital for the information they can convey to the clinician and the information she can convey to them.
13. Be unembarrassedly honest; open to learning new ways of understanding and relating to your loved one; and to developing new family coping skills.
14. Our society over-treats the worried well and mildly ill, while cruelly neglecting those with severe mental disorders. Be wary of getting too much treatment (especially medication) for problems that would get better on their own; and too little for those that will get much worse in the absence of immediate and thorough attention.
15. Psychiatric medications are not a good first choice if your family member has only mild, transient, and/or expectable symptoms of sadness, grief, anxiety, or stress. There is not a pill for every problem and most problems resolve on their own. Kids, in particular, are being over-medicated after quick and careless evaluations. Be skeptical, be informed, and always ask lots of questions before accepting a psychiatric med.
16. Read carefully my previous blog, "Advice to Patients,"2 in order to learn more about the role of psychotherapy and the uses and misuses of medication in the treatment of psychiatric disorders.
17. Be aware that there are lots of different forms of psychiatric treatment and that no one size fits all.
18. Many treatments have a strong base of supporting evidence, some do not. Whenever possible, evidenced based treatments are preferred.
19. Psychiatric treatments are about as effective (but also as ineffective) as most treatments in the rest of medicine. It makes sense to be optimistic they will help, but don’t expect miracles. Too-good-to-be-true claims for magical results turn out never to be true.
20. Treatment outcomes are very variable and impossible to predict precisely. Most people experience at least partial benefit from psychiatric treatment; some people enjoy a full recovery; a minority have no response at all; and, unfortunately, a few are harmed.
21. Things often go better if your family member allows you to contribute to discussions regarding choice of optimal treatment. Selecting a specific treatment plan among the plausible alternatives depends on the person; the nature of the problem; its severity; preferences; clinician training; availability; and the results of previous serial systematic trials aimed at learning what works best.
22. “No Treatment” may sometimes be the treatment of choice—especially if your family member is experiencing only the normal, expectable problems of everyday living or has had no or bad responses to previous treatment trials.
23. For mild symptoms, watchful waiting; the healing powers of time; stress reduction; and family support may be all that’s needed.
24. In contrast, severe/persistent symptoms require immediate attention. The longer you wait, the harder they may be to treat and the slower and less complete the treatment response.
25. Good clinician/patient match is crucial to good outcome. If possible, have your family member interview several different clinicians before picking the one he and the family are most comfortable with.
26. Try to find non-intrusive ways to promote close adherence to any treatment plan that’s working.
26. Stopping/erratically taking needed medication is the biggest cause of relapse and should be the first thought if symptoms start returning. The risks of stopping needed medications are great—if there is a full-blown relapse off medications, restarting them later may no longer be as effective or even work at all.
27. Learn to spot early symptoms of relapse and help your loved one promptly get help for them to avoid a full-blown episode.
28. People tend to stop the medications they need because of any combination of side effects; feeling better; use of alcohol or drugs; forgetfulness; resentfulness; and/or denial of illness. Identifying the reason(s) may shape effective responses that help the patient stay on an effective dose for the necessary duration.
29. Tragically, the lifespan of people with severe mental illness is 15 to 20 years shorter than for the general population. Causes are heavy smoking (done because it reduces symptoms and drug side effects); obesity/diabetes promoted by drug side effects; poor diet; lack of opportunity for exercise; poor access to health care; and suicide. It’s admittedly difficult to change any of these powerful health risk factors, but stay alert for points of leverage, especially in regard to need for good medical follow-up.
30. Excessively rigid medical privacy laws prevent mental health clinicians from providing information to families except with the patient’s permission or in extreme emergencies. These go into effect once your child reaches the tender age of 18 and can exclude you from knowledge of what’s happening; ability to provide support; and any participation in treatment decisions.
31. These confidentiality restrictions often create a potentially tragic missing link in the care of a loved one with severe psychiatric illness. You may be left out of the loop during psychiatric and medical crises even when you have crucial information to provide and crucial support to give.
32. Don’t get angry with clinicians withholding information—they are just following a dumb law. But do persistently stay in touch with them and give them all the information you can. The law may force them to be silent, but you don’t have to be at all silent with them. The more they learn from you, the better the treatment decisions will be.
33. In the midst of an acute episode, patients sometimes lose insight about their mental illness, need for treatment, and value of family involvement. Advanced Directives, written once they have recovered insight and judgment, are very useful to deal with the confidentiality issue; avoid family conflict; and facilitate prompt treatment when it becomes most desperately needed in the future.
34. The time to prepare for emergencies is before they happen. Know all the resources available in your area and how to best, and most promptly, access them.
35. The risk of suicide is probably what will scare you most. The suicide rate is greatly increased in people with significant psychiatric disorders but is still only about 10% to 15% over the course of an entire lifetime and is very low at any given moment.
36. Predicting suicide is therefore like finding a needle in the haystack. It is easy to predict a group of people at elevated lifetime risk of suicide—but impossible to predict which person within that group will do it, and when. Risk factors include the presence of psychiatric disorder; previous attempts; family history of suicide; friends who attempted or completed suicide; persistent suicidal thoughts and plans; urgency; lethality of means; impulsivity; substance use; and hopelessness.
37. Feel free to ask about suicidal feelings and encourage your loved one to discuss their nature, causes, cues, past actions, preferred means, and future plans.
38. Remove potential means of suicide whenever possible—especially guns and medications.
39. Encourage/insist that your suicidal loved one get help. Making the appointment as soon as possible and facilitating attendance will go a long way to initiating treatment and reducing risk. Do everything possible to facilitate close follow-up.
40. Every suicidal person who is still alive is at least somewhat ambivalent about suicide. Often the person may look for explicit and implicit external messages whether life is worth living. Make it clear it is very important to you that he stay alive; that his death would be a much worse burden than his life; and that you look forward to things getting much better in the future.
41. Ultimately, suicide is a personal decision that no family can take responsibility for preventing. The most appropriate reaction to a successful suicide is to miss the person and grieve the loss, but don’t blame yourself. Second guessing yourself is inevitable, but unproductive. Second guessing other family members often leads to family break-ups.
42. Caring for a family member with severe mental illness can be emotionally and physically exhausting, particularly if things aren’t going well; if there is family conflict; and as you age. Get as much help as you can. Other families in support groups, who have been through similar problems, can be great help. Family therapy may sometimes be needed. Social supports and respites can help keep you from being stressed out or burnt out.
43. Remember, it is often the illness talking, not your loved one. Interpersonal conflict (sometimes severe and persistent, sometimes transient) is almost inevitable between other family members and a patient suffering from mental disorder or addiction. Try to be patient, resilient, forgiving.
44. Court-ordered inpatient or outpatient treatment is rarely necessary, but sometimes crucial in acute emergencies; to promote long-term stability; and/or to avoid the much worse coercion experienced by the 600,000 people with severe mental illness currently in jail or homeless because they didn’t receive appropriate psychiatric and social services.
45. The most dangerous situations occur when your family member with a mental illness refuses treatment, uses drugs, and has a history of violent behavior.
46. It sometimes becomes impossible for a family to help a family member who is clearly incapable of taking care of himself. The court may appoint a guardian ad litem to take over responsibility for supervising care; living arrangements; and finances.
47. In rare and extreme situations, fierce hostility and/or physical threats may make it, at least temporarily, impossible to continue contact with your mentally ill or family member with a substance abuse problem. Protecting the rest of your family may have to take priority.
48. Know your limits. Do your best—but not more than you can do. Love can help, but by itself cannot cure all problems. Change what you can, but accept there are things in life you can’t change.
49. The lack of resources to help people with mental illness is scandalous. Get mad and get active. Bug your local politicians. Vote for national candidates who favor better health care. Join advocacy groups. Be heard. The mentally ill are so terribly neglected, precisely because their voice has been so silent.
50. Never give up hope. I have seen hundreds of miracle recoveries. It often gets darkest before the dawn.