Reactions of Family Members
Living with a person with mental illness is difficult. Family members may avoid or treat the person differently to limit negative interactions. They may also reach out to help but meet with resentfulness or be rebuffed. A person who is ill may in fact fear and resent any attempt to reach them.
It is not “unloving” to feel resentment due to the negative behaviors of the relative struggling with mental illness. Realizing that a loved one has mental illness does not always overcome the hurt, anger, frustration or dismay you may feel. Guilt is counterproductive. Family members do not cause the illness (although abuse or trauma may contribute to mental illness). Serious mental illness is a neurobiological disorder. Self-blame and blame leveled by others, including mental health professionals, are destructive for all concerned. Focus should be on the future and what can be done to manage or cope with the illness and maximize the potential of the individual with mental illness.
Friends and family may also avoid the family and the person who is ill out of a lack of understanding, not knowing what to say or do, or stigma. They may feel the individual is responsible for the illness and should be capable of controlling or curing the illness. To add to parents’ guilt, others may judge them as having been bad parents. Try to educate family and friends on the disorder and ask for their support if possible. Search out support through support groups and other people in your same situation. NAMI Buffalo & Erie County offers several monthly Family Support Groups, classes, education meetings and online resources. Membership isn’t required, and services have no fees.
Keep these recommendations in mind:
- Avoid placing blame and guilt.
- Seek the support, understanding and relief you need. Remember, you must keep yourself healthy and able to cope because you, the family member, are the first line of defense for your loved one.
- As much as possible, continue your own outside interests and schedule time for yourself and your needs. Get away for a few days and/or keep your vacation plans.
- Remember, other family members may also be affected and are likely experiencing denial, guilt, and depression. Try to keep communication open.
- Find out about the benefits and support systems for when things are going well; don’t wait for a crisis. Go to a family support group regularly.
Coping with a Family Member with Mental Illness
Discovering you have a loved one with mental illness can be very painful, confusing, and exhausting. Events happen quickly and at times without warning. In the beginning, you may not have any experience or education about your loved one’s illness. Many agencies and services may be involved in providing care and treatment. Many of terms used can be strange or unfamiliar.
Ask questions of the providers, read up on relevant mental health topics, speak with others experiencing the same challenges and reach out to others who are in the same place. Educate yourself on mental health terms and familiarize yourself with resources.
- Unlike many other illnesses, recovery is seldom quick. You should give your loved one “space.” Most persons living with mental illness need some time alone. They don’t handle intense relationships, excitement, lots of people, or too many demands very well. Try not to be critical. Compliment progress and effort when it’s made even if the results aren’t perfect.
- People who have a mental illness need a familiar routine. Be consistent in terms of mealtimes, expectations, and environment. Keep requests simple and direct. Try not to argue with them. Some patients have a distorted sense of reality, or ideas that are firmly held which are not true. It generally does not do any good to argue about them. Don’t blame anyone (especially yourself) for your relative’s illness.
- Expressions of blame and guilt are rarely accurate and seldom helpful, though it’s natural that you may have such feelings. We know that mental illnesses are organic and genetic in origin. Families don’t cause mental illness!
- Learn as much as you can about mental illness and its treatment. The more you know, the better prepared you are to deal with it.
- Try to work out a plan with the primary therapist or treatment team when your loved one is in good shape. Discover if possible which events have led to hospitalization in the past and agree in advance on a course of action if acute symptoms reappear.
- Learn to recognize signs of relapse, such as changes in sleeping or eating habits, withdrawal, etc. Mental illness sufferers often can identify early signals of relapse and may also be able to tell you methods that helped them successfully in the past to gain control of symptoms and to relieve stress. A visit to a psychiatrist may help prevent a full-blown relapse, particularly when an adjustment of medication is needed.
- Anticipate troublesome situations. Try to promote understanding between the ill person and members of the immediate and extended family. Become aware of your actions that seem to help or worsen your family member’s condition, even temporarily.
- Encourage compliance with medication by listening to complaints about side effects and making sure the doctor knows about them. Side effects can usually be alleviated by adjusting dosages and/or adding special medications.
- Avoid pampering. Set reasonable rules and boundaries and stick to them. If you find this difficult to do, ask the patient’s doctor or counselor to help you.
- Do not suggest that your loved one needs to, “Pull yourself together.” They would if they could. Not being able to do this is part of the illness. Remember that their suffering and distress are even greater than yours. Focus on their strengths.
- Try to deal with one problem at a time.
- Do not ask a person to try harder to concentrate; simply repeat the information in a non-judgmental way. People with mental illness frequently suffer from memory loss or inability to concentrate. This is frustrating and frightening for them.
- Do not fall in with delusional thinking or paranoid attitudes. A person with mental illness needs to be able to depend on someone who is objective and aware of what is really happening. Do not argue with the ill person or try to point out faulty logic.
- Your family member may hallucinate, that is see, feel, hear or otherwise perceive things that are not perceived by others. Be honest. Accept their perceptions as their own. If asked, point out simply that you are not experiencing their hallucination. Discuss the hallucinations with the psychiatrist.
- Have an emergency plan. Make a list of people you can call in the event of potential trouble: a neighbor, a relative, a doctor, a crisis team or the police. Have up-to-date numbers readily available.
- Encourage a person who is capable of it to get a part-time job. This can be therapeutic in boosting self-esteem.
- When mental illness and a substance use disorder coexist, special dilemmas are presented to families as well as to crisis teams and law enforcement authorities. According to a leading authority in dual diagnosis, each of the two disorders must be considered a primary disease, requiring specific and intensive treatment. Treating mental illness alone will rarely bring about cessation of substance abuse or addiction. Particularly frustrating for family members is that they are usually powerless to control the behavior of the substance user. Most substance users and addicts do not alter their behavior until they themselves have experienced negative consequences to the point where they choose to try to stop and seek help.
- Family pleas and exhortations may make situations worse; limit-setting in a calm, detached manner might work better.
- The general health of persons who have mental illness often degenerates due to a number of conditions. Anosognosia, or impaired insight, keeps individuals from recognizing they are ill and therefore they do not seek or accept treatment or stay compliant with medications. Research has shown that this condition is the result of a specific change or function of a part of the brain and not the person’s willfulness or defiance. In addition, the stress of dealing with mental illness often causes neglect of daily hygiene practices, adding strain to the body’s systems.
- Dental care and oral hygiene are also frequently omitted by persons with mental illness. Some side effects of medications as well as the mental illness itself may also complicate dental conditions.
- In order to avoid confusion and inappropriate care, the family may need to coordinate communication among mental health providers, social workers and the person living with mental illness.
Living arrangements are particularly challenging. They will vary from family to family and over time within the same family. If the ill person is reasonably compliant and the family has learned to deal with their illness, then living at home may be a good experience and valuable for a therapy program. Relatives must plan, however, for when the time comes that they may not be able to continue being the primary caregiver. Refer to the section on Housing.
If the ill person is difficult, non-compliant or threatening, or the family is unprepared or unable to provide living arrangements, then a residence for persons living with mental illness would be better. Making the change from living at the family home to another residence may be difficult not only for the patient but for all family members. Consultation with professionals, support groups and advocates might be helpful in this process.
Often the best time for changing living arrangements is on discharge from the hospital with the aid of a social worker. The Department of Mental Health (DMH) gives priority to people who need housing following a stay in the hospital. The family must be firm in advocating at the time of hospital admission and before discharge is even being thought about for separate housing if it is urgently needed and not let the ill person return to the family home. If the person returns to the family home or their own residence, getting into a government-sponsored residence is nearly impossible unless an extreme crisis occurs. In some cases, families have had to seek a restraining order from the court to get the ill person out of the house and into a more appropriate setting. The best interest and safety of both the individual and the family is most important in order to reduce stress for everyone in a troubled relationship.
Finding housing for an elderly person with mental illness who cannot or should not live alone is especially difficult. A severely depressed individual could easily be misdiagnosed as an Alzheimer’s patient. Depression and other diseases that produce Alzheimer’s-like symptoms can often be alleviated with appropriate treatment. In selecting a facility, look for a residence that has considerable social activity and opportunities for interaction.
Rights of Families
Sometimes the family’s relationship with the loved one becomes strained. Families have very few legal rights in dealing with a relative who is seriously mentally ill, unless the patient is a child under the age of 18. Upon admission, ask providers to ask your relative for a HIPAA waiver (see link to form under Being Prepared) that gives consent for treatment staff to talk to you.
One right families do have, if the patient doesn’t object, is to be included in the discharge planning process. This often begins very quickly after a patient has entered a hospital and while he/she is still very ill, since it takes some time to put together a good discharge plan.
Shortly after your loved one is hospitalized, make contact with the social worker and/or the doctor. Ask what the diagnosis is and what can be expected in the future. If your relative previously refused to sign a consent form to allow the provider to talk with you, ask again when your loved one is more stable.
Let the social worker know whether you are able to have your relative return home or whether other arrangements will have to be made.
Find out what options there are for aftercare. Will your relative:
- be seeing a therapist? Where? When?
- be attending vocational or day treatment programs?
- have a care coordinator assigned?
- need transportation – how will it be arranged?
What other services are available? Don’t be afraid to ask questions until you understand thoroughly what is proposed. If you have any reservations or concerns about the plan, be sure to tell those present.
You also have a right to reasonable visitation as long as your relative agrees to see you. If such visitations are denied by their care providers, contact the Chief Medical Officer and/or Executive Director of the hospital and request that such visits be established.
You have the right to know, as long as the patient doesn’t object, of any medical or dental treatment received.
If the patient is unable to consent to medical treatment, you must be consulted and give your permission except in emergency, life-threatening situations. You also have the right to complain if necessary to ensure that your relative is properly and effectively cared for. See Making a Complaint.
Working with your loved one’s treatment providers, where possible, is desirable. See Family Involvement with Professionals under Finding Services.
Remember: knowledge is power, and support and self-care are essential to helping you be the best possible advocate for your loved one, especially through times of crisis. You are not alone!