How to make it through: Survival Tips for Families & Friends
Taken from Our Own Experiences Working & Living with Mental Illness – Anderson, et al; modified by R. Karr & Peggi DeLeuil
Maintain a low-key environment to help avoid relapse and promote recovery. Include your relative in ways not overstimulating. Expressing extreme concern or excessive enthusiasm can be as stressful as nagging, rejection, or conflict.
Anticipate change and make only one change at time. Change in routine of persons with severe mental illness is nearly always potentially stressful.
Set firm limits regarding extreme or violent behavior, using illicit drugs, and non-compliance with medication. Do not ignore psychotic or aggressive behavior. Say “no” when appropriate but do not argue with paranoid ideas.
Keep communication clear. Use simple, direct statements. Emphasize positive messages and supportive comments.
Do not allow the mentally ill family member of the household to dominate the entire family. Protect other members of the family when necessary and do not neglect the siblings of the ill person. Be sensitive to the siblings’ needs as well.
Learn your relative’s patters of early-warning signs.
Accept what cannot be changed. Stop blaming. What’s done is done, and often cannot be undone. Let go. Move on.
Take care of yourself. Get your own life again. Develop a lifestyle that does not center entirely on the ill relative or even the family. Develop a program of self-care, write it down and follow it.
Strive to strike balance between realism and hope
Become an advocate - in general for all persons with mental illness.
Keep a daily journal of your ill relative’s activities, progress, moods, medications, etc. Documentation is extremely important and may be useful in finding patterns important to the treatment team or in securing entitlements.
Families need to know how to be effective in getting help for a seriously mentally ill person. They need to know what questions to ask, what people to see, and where to go. They need to understand the various parts of the system and how best to interact with each part.
Frequently, when a parent, relative, or close friend becomes involved-especially during the early phases of the illness- each person is so overwhelmed by the experience that vague information and “jargon” is accepted as substantive. Families, at the time, want and need honest, direct information about the illness. They want specific, practical suggestions about how to cope during acute or stable phases of the illness. To get this kind of information, there are some things you must do. The following are some hints to obtain positive results from “the system”.
Things To Do
1. Keep a record of everything. List names addresses, phone numbers, etc. Nothing is unimportant. Every date, time, etc., may come in handy. Make notes of what went on during conferences. Keep all notices, letters, etc. Make copies of everything you mail. Keep a notebook or file of all contacts. Don’t throw anything away.
2. Be polite. Keep all conversations to the point. Ask for specific information. Request permission from your relative to review all documents. Only if permission is granted in writing will you be able to do so (this applies to persons 18 or older).
3. If the patient is in a private hospital (rather than a state institution), you may have our own physician who is in charge. Get the name of the Primary Therapist on the ward. This is usually a Psychiatric nurse. He/she will know most about the patient. Ask for
an appointment to meet with this person; make it at their convenience. Come prepared with a list of specific questions. Some sample questions are:
a. “What are the specific symptoms about which you are most concerned?” b. What do these indicate? How are you monitoring them? Who is documenting in the chart? How often is the medication being monitored? What specifically, is he/she getting? How much? How often? Has the patient been informed on medication side-effects? When can I look at the record book or chart? When can we meet to plan the transition back home?
4. Keep the meeting short. If you come with a list of questions you will be able to get all the information you need in less than half an hour.
5. Write letters of appreciation when warranted; write letters of criticism when necessary. Send these to the head of the hospital (or unit—or both), and send copies to anyone else who may be involved, including the Governor.
Just as there are certain actions to take in order to be effective, there are some things which tend to be counter-productive. Keep in mind that most professionals want to do a good job. Most of the direct staff (people who work directly with the patients—social workers, case managers, hospital attendants, practical nurses, doctors, nurses, therapists, etc.) are overscheduled. Usually, there are too few staff for the number of community mental health centers, jails, etc. Thus, it is important to maintain some perspective on what one can reasonably expect.
7. Ask to review your relative’s Individual Treatment Plan. This is legally mandated and must be carried out. You can ask to participate in the development of the plan. The patient has the right to have his/her wishes taken into account.
8. When you ask how the staff is implementing the Treatment Plan, do not accept answers which imply that the patient is responsible for his/her own progress. Persis in finding out exactly what actions staff are taking, i.e., how often are they taking the patient for walks, which staff person is in charge of group therapy, how consistent is the treatment, i.e., does each member know what others are doing?
9. Do not allow yourself to be intimidated.
10. If your relative is in a group home, CCF, ECF, or any facility receiving public funds, you are entitled to inquire about personnel qualifications, etc. Do not permit unqualified personnel to continue to work without a formal complaint to the Department of Social and Health Services.
11. Do not be afraid or ashamed to acknowledge that you are related to a mentally ill person.
12. Keep the patient informed about everything you plan to do. He/she might disapprove of your action or may wish to modify your plan.
13. Finally, BE ASSERTIVE! As a tax-payer, you are entitled to information, respect, and courtesy. Your taxes go to public employees. You are not asking for gratuities. You are simply helping to get the job done.
How to Survive as a Family Member: Lessons Learned the Hard Way
Bruno Bellelheim wrote about the pain of survivors of Nazi death camps….in some ways, his words are remarkably relevant to the pain of families of persons who are seriously mentally ill. For many of us “the day it happened” was the day we realized that the frightening and unpleasant changes we saw in our loved ones were not due to adolescence, spoiling, too little attention, too much attention, family strife or mid-life crisis, but to a brain illness destroying the person we had cherished leaving a stranger in many ways.
That stranger, we discovered, was still ours, still needed our love and support, and reserves of patience and tolerance we never knew we had. The nightmare which follows the days of realization is one of loneliness, despair, helplessness, self- blame, disbelief and fear.
During the weeks and months of our nightmare, we thrashed around-seeking other diagnoses, better treatment and above all, understanding. After false starts and futile efforts, we gradually learned there are ways not only to survive the anguish, but to become stronger and more effective despite never ending pain. I offer some guidelines that have worked for me and that I hope will help others. Attempts by families to reverse or in many cases even diminish the effects of major mental illness seem doomed to failure—a failure that strikes at the heart of our self-esteem and makes us doubt our ability to be successful at anything! The first rule that worked for me was to find out what works most successfully and do it.
This may mean a change in career or returning to a career which was given up devoting more time to an ill relative. It may mean focusing on a hobby or doing volunteer work. All human beings “need to be needed”- and when our best efforts to help our own are rejected or scorned, we feel useless and unwanted. So, we find on solution in this is to find a way to help others.
At the same time, we have to accept the reality that we cannot make our ill relative become well. Asking the help of others may be difficult and may seem to ourselves a sign of laziness or weakness, but we must learn to accept help.
But at the same time, we must learn to recognize the difference between constructive help and harmful interference. This means reading and studying what is known about serious mental illness from a scientific and not speculative or hypothetical standpoint. You may then be able to question the professional health care providers and even reject advice when necessary.
Either of these two actions may earn you the label of “difficult” or “hostile” or worse. At this point, one has to remember that life is not a popularity contest.
The goal is not for the family member to be loved by the treatment team, but for the sick person to receive state of the art treatment. This is not to recommend adversarial behavior. We don’t want mental health professionals to waste their time and energy being angry with us—we need to politely and diplomatically offer observations and suggestions which can be accepted without loss of face, and we need to do this without passion. Remember that working with persons with severe mental illness is often hard and draining work in which clinical rewards are small and slow to come. Even professionals who still blame families for serious mental illness are not bad people—just poorly trained, obstinate, egotistical or ignorant
Do not make a career out of your family,that simply does not help, but work for the cause, not just for the individual
Put your energy and skills into improving the lot of people with mental illness in general by: public education, fundraising, supporting good litigation/legislation, advocacy, attacking sigma and all those other good things NAMI promotes or supports.
There are, however, some specific responsibilities for which you can hold staff accountable. The following will help both you and the helping professionals.
Things Not To Do
1. Do not come late to appointments.
2. Do not accept repeated “cancellations”.
3. Do not make excessive demands on staff, i.e., don’t harass the staff with special requests, do not have long phone conversations filled with unnecessary details, etc.
4. Do not accept vague answers or statements with seem confusing. If a clinician says “we are observing your daughter carefully,” recognize that this is a statement which provides you with no information. Do not accept it without further clarification. Ask who is doing the observing, what is being observed (exactly), how is the information being documented, when can you view the progress of the observation, etc.
5. Do not feel that you “should know” and therefore inhibit yourself from asking for substantive information.
6. If your loved one is in a state mental hospital and you have permission to look at the record book, set up an appointment with the Social worker assigned to the ward. Do not postpone this meeting. The earlier the better. Request that the ward physician also attend the meeting.
Life is not always fair (you do not always get what you deserve). There is no quota for bad luck. Things can always get worse so keep a little strength in reserve
Take care of yourself
An exhausted, burned out person cannot help anyone effectively. Be ruthless in taking time every week for whatever helps you unwind, especially physical activity which you like….and laughter. It’s okay to have fun!!!!
Talk to friends
Mental illness in the family is nothing to be ashamed of—and secrecy only enhances stigma. Share your pain with good friends, at the same time
educating them. When things are really tough, call someone in your NAMI support group, for you are not alone!!!! — Margaret Seiden, MD
Tips for Families in Coming to Grips with Brain Disorders
(The following is based on over 15 year’s experience, observation, education, and networking with fellow NAMI families from throughout the United States. –Ruth Karr, NAME Huntsville, AL)
You cannot cure a neurobiological brain disorder; you cannot “love them well.” You can emotionally separate the person from the illness, despising the illness but still loving the person. These disorders are real brain disorders, and are not in the continuum of “mental health problems” that are correctable in a social context alone.
A brain disorder within the family affects each member, often quite differently. Allow each member of the family to come to terms with the circumstances in their own time. Forgive others and yourself for the mistakes that have been made, for only then will each of you find strength to nurture the loved one with the disorder.
In all likelihood, the disorder will be harder to accept by the person afflicted than for any of the rest of you. Since we are all limited in some manner, let the afflicted person know that you expect her or him to use her/his capabilities to the fullest extent possible.
Ask the doctor to provide a specific diagnosis as soon as reasonably possible. Request any useful information and that the family be included as a part of the treatment team. Recognize that even today treatment professionals can be as baffled at times by these disorders as you are. Be polite but firm in seeing that your loved one receives individualized treatment and educational services.
You need not feel so alone! Seek out families in similar situations. Problems may not be precisely the same, by you can often find and give practical coping strategies at support group meetings. You can also develop advocacy skills and learn how to advocate more effectively as a group with common concerns.
Finally, wipe the family slate-including extended family if possible-of all guilt, shame, blame, and unreasonable expectations. Your ill relative needs to be able to rely on you as an important role model. Never give up; silver linings in the clouds often appear unexpectedly, bringing with them deeper sensitivity and compassion, increased tolerance of differentness, and better judgment in reacting to difficulties.
Remember, there is a NAMI affiliate nearby to help families in ‘coming to grips’.
The Principles of Support represent what we are striving for as we struggle to come to terms with mental illness. This is our belief system regarding universal, necessary truths that guide and strengthen us when life deals us this particular challenge.
We will see the individual first, not the illness
We recognize that mental illnesses are medical illnesses that may have environmental triggers
We understand that mental illnesses are traumatic events
We aim for better coping skills
We find strength in sharing experiences
We reject stigma and do not tolerate discrimination
We won’t judge anyone’s pain as less than our own
We forgive ourselves and reject guilt
We embrace humor as healthy
We accept we cannot solve all problems
We expect a better future in a realistic way
We will never give up hope
Identifying a Good Psychiatrist
Check with other families who have mentally ill relatives to see if they have had good experiences with a particular psychiatrist, one who:
Will make special efforts to communicate with the family
Will not insist on the patient making the initial contact, but rather recognizes the patient may be in crisis and unable to do so
Recognizes that mental illness is a brain disease caused by biological rather than interpersonal factors
Is strong enough not to be threatened by views of the family or patient on treatment, to openly discuss symptoms, medications and side effects, and the limits of his/her knowledge, while remaining in command of the treatment
Is flexible enough to experiment with treatments and to enlist families as part of the treatment team when that is indicated
Is innovative enough to leave the office when needed; for instance, one psychiatrist regularly went to the home of a patient long-retreated to his room, taking him for walks until he was improved enough to go to the office
Is accommodating enough to schedule visits at less frequent intervals to match the family’s financial ability
Takes seriously and respects the information communicated by the family regarding the status of the patient
Sample questions to ask a psychiatrist
What is the diagnosis? What is the nature of this illness from a medical point of view?
What is known about the cause of this illness?
How certain are you of this diagnosis? If you are not certain, what other possibilities do you consider most likely, and why?
Did the physical examination include a neurological exam? If so, how extensive was it, and what were the results?
Are there any additional tests or exams that you would recommend at this point?
Would you advise an independent opinion from another psychiatrist at this point?
What programs of treatment do you think would be most helpful? How will it be helpful?
Will this program involve services by other specialists (i.e., neurologist, psychologist, allied health professionals)? If so, who will be responsible for coordinating these services?
Who will be able to answer questions at times when you are not available?
What kind of therapy do you plan to use, and what will be the contribution of the psychiatrist to the overall program of treatment?
What do you expect this programs to accomplish? About how long will it take, and how frequently will you and the other specialist be involved?