Family and Caregiver Schizophrenia Discussion Forum

60 Tips for Coping

Found this on the old http://www.schizophrenia.com/family/60tip.htmlsite and it was good to read again!

60 tips for Helping People who have Schizophrenia
By Rex Dickens or the NAMI Sibling and Adult Children Network.

  1. You cannot cure a mental disorder for a family member.

  2. Despite your efforts, symptoms may get worse , or may improve.

  3. If you feel much resentment , you are giving too much.

  4. It is as hard for the individual to accept the disorder as it is for other family members.

  5. Acceptance of the disorder by all concerned may be helpful, but not necessary.

  6. A delusion will not go away by reasoning and therefore needs no discussion.

  7. You may learn something about yourself as you learn about a family member’s mental disorder.

  8. Separate the person from the disorder. Love the person , even if you hate the disorder.

  9. Separate medication side effects from the disorder/person.

  10. It is not OK for you to be neglected. You have needs & wants too.

  11. Your chances of getting mental illness as a sibling or adult child of someone with NBD are 10-14%. If you are older than 30, they are negligible for schizophrenia.

  12. Your children’s chances are approximately 2-4%, compared to the general population of 1%.

  13. The illness of a family member is nothing to be ashamed of . Reality is that you may encounter discrimination from an apprehensive public.

  14. No one is to blame .

  15. Don’t forget your sense of humor.

  16. It may be necessary to renegotiate your emotional relationship.

  17. It may be necessary to revise your expectations.

  18. Success for each individual may be different.

  19. Acknowledge the remarkable courage your family member may show dealing with a mental disorder.

20.Your family member is entitled to his own life journey , as you are.

  1. Survival-oriented response is often to shut down your emotional life. Resist this.

  2. Inability to talk about feelings may leave you stuck or frozen.

  3. The f amily relationships may be in disarray in the confusion around the mental disorder.

  4. Generally, those closest in sibling order and gender become emotionally enmeshed, while those further out become estranged.

  5. Grief issues for siblings are about what you had and lost. For adult children the issues are about what you never had.

  6. After denial, sadness, and anger comes acceptance. The addition of understanding yields compassion.

  7. The mental illnesses, like other diseases, are a part of the varied fabric of life.

  8. Shed neurotic suffering and embrace real suffering.

  9. The mental illnesses are not on a continuum with mental health. Mental illness is a biological brain disease.

  10. It is absurd to believe you may correct a physical illness such as diabetes, the schizophrenias, or manic-depression with talk , although addressing social complications may be helpful.

  11. Symptoms may change over time while the underlying disorder remains.

  12. The disorder may be periodic , with times of improvement and deterioration, independent of your hopes or actions.

  13. You should request the diagnosis and its explanation from professionals .

  14. Schizophrenia may be a class of disorders rather than a single disorder.

  15. Identical diagnoses does not mean identical causes, courses, or symptoms.

  16. Strange behavior is symptom of the disorder. Don’t take it personally .

  17. You have a right to assure your personal safety.

  18. Don’t shoulder the whole responsibility for your mentally disordered relative.

  19. You are not a paid professional case worker. Work with them about your concerns.

Maintain your role as the sibling, child, or parent of the individual. Don’t change your role .

  1. Mental health professionals, family members, & the disordered all have ups and downs when dealing with a mental disorder.

  2. Forgive yourself and others for mistakes made.

  3. Mental health professionals have varied degrees of competence.

  4. If you can’t care for yourself, you can’t care for another.

  5. You may eventually forgive your member for having MI.

  6. The needs of the ill person do not necessarily always come first.

  7. It is important to have boundaries and set clear limits.

  8. Most modern researchers favor a genetic, biochemical (perhaps interuteral), or viral basis. Each individual case may be one, a combination, or none of the above.

Genetic predisposition may result from a varied single gene or a combination.

  1. Learn more about mental disorders. Read some of our recommended books like Surviving Schizophrenia: A Family Manual by Dr. E. Fuller Torrey and Overcoming Depression by Dr. Demitris Papolos and J. Papolos.

  2. From Surviving Schizophrenia: “Schizophrenia randomly selects personality types, and families should remember that persons who were lazy, manipulative, or narcisstic before they got sick are likely to remain so as schizophrenic.” And, “As a general rule, I believe that most persons with schizophrenia do better living somewhere other than home. If a person does live at home, two things are essential–solitude and structure.” And, “In general, treat the ill family member with dignity as a person, albeit with a brain disease.” And, “Make communication brief, concise, clear and unambiguous.”

  3. It may be therapeutic to you to help others if you cannot help your family member.

  4. Recognizing that a person has limited capabilities should not mean that you expect nothing of them.

  5. Don’t be afraid to ask your family member if he is thinking about hurting himself.

A suicide rate of 10% is based on it happening to real people. Your own relative could be one. Discuss it to avoid it.

  1. Mental disorders affect more than the afflicted.

  2. Your conflicted relationship may spill over into your relationships with others. You may unconsciously reenact the conflicted relationship.

  3. It is natural to experience a cauldron of emotions such as grief, guilt, fear, anger, sadness, hurt, confusion, etc. You, not the ill member, are responsible for your own feelings.

  4. Eventually you may see the silver lining in the storm clouds: increased awareness, sensitivity, receptivity, compassion, maturity and become less judgmental, self-centered.

  5. Allow family members to maintain denial of the illness if they need it. Seek out others whom you can talk to.

  6. You are not alone. Sharing your thoughts and feelings with others in a support group is helpful and enlightening for many.

  7. The mental disorder of a family member is an emotional trauma for you. You pay a price if you do not receive support and help.

  8. Support AMI/FAMI and the search for a cure!

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Some of these are incomplete, outdated or inaccurate in my opinion. NAMI is especially biased toward the medical model and is financed/lobbied in part by powerful pharmaceutical companies and funded by donations of caregivers, so I feel they tend toward narratives that favor those paying the bills.

You need to take some of this with a grain of salt, not to say there isn’t good information here.

I’m commenting on a few that stick out to me…

Perhaps not, however, I found my delusions were moderated by psychoanalysis. Gaslighting any talk of delusions can lead to loneliness and subsequent anger and delay treatment.

Understanding delusions can be valuable to all parties, if discussions are civil. Talking about how they make the ill person feel, and possible environmental changes to moderate them can be helpful.

I think this flies in the face of the LEAP process and is bad advice. Do not underestimate the power of feeling heard, regardless of factual agreement on delusions.

Maybe for the disease itself. This does not mean that caregivers and people with the illness(es) can do whatever they want. No one is blameless for their behavior after the fact. There are good ways and bad ways to deal with the illness, and certain environments can be ‘toxic’ to some sufferers. Research points to an causal interaction between genetics, environmental and behavioral/social factors. If you accept this, then changes to the environment of the sufferer to remove stressors would be helpful. This could mean changing behaviors and attitudes of family members the sufferer lives with or grew up with.

I’m not sure how this is any more absurd than thinking you can correct them with medication. Medications are helpful tools, but they do not ‘correct’ illnesses. They can treat them with varying effectiveness, but do not fix underlying causes and are not a cure. The brain is different from your pancreas in that it has neuroplasicity and can partially rewire itself and learn new behaviors. There’s a bias present here that discounts talk therapy as only addressing social issues, where CBT has been show to help reduce symptoms. My opinion is both treatments are valuable if tolerated and affordable. Talk therapy is not especially useful without insight, but then again without insight sufferers often don’t take medications unless forced.

This bears no relation to the dynamics in my family with one child with bipolar disorder and another with SZA and two seemingly ‘well’ siblings. I wouldn’t give this much credence and am curious of the source of this generalization.

I’m not sure these roles are particularly relevant to the discussion. What’s more relevant are the roles of primary, secondary and non caregivers and how you navigate respective dual roles and how these change over time as people abdicate their roles.

Maggotbrane,
Yes, some of this may be outdated. I dont have the energy for debate or research. All I know is that I love NAMI because that family education was the best support and education I had during my time of great need.

Yes, some individuals both professional and not don’t like NAMI for their own personal reasons and so be it.

Just as there are your antipsychiatry and antimedication folks. Such is their choice in life.

Some of these tips bring me peace and speak to my lived experience and are reminders to me.

Some of this speaks to me in way nothing else does. I can talk to some of your points you brought up but sorry I just don’t have the energy for it at this time.

Wishing you the best.

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No problem, just some notes for the uninitiated.

I’m a consummate middle child, so I tend to see all sides.

Thanks for posting the list, as I said there’s some good stuff in there.

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Thank you. This is very helpful.