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Tips for Carers

Discussion in 'Supporter Discussion' started by Kathy, Aug 15, 2007.

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  1. Kathy

    Kathy I'm a VIP

    I have compiled a large list of tips for carers, taken from various sources. I felt they might be helpful to list here, as many come here uncertain what to do with their family members. Please feel free to add more tips to this list. I apologize that they are not very organized, however I may be able to organize them better at a later date, especially if others contribute more.
    • You cannot cure a mental disorder for a family member.
    • Despite your efforts, symptoms may get worse, or may improve.
    • If you feel much resentment, you are giving too much.
    • It is as hard for the individual to accept the disorder as it is for other family members.
    • You may learn something about yourself as you learn about a family member's mental disorder.
    • Separate the person from the disorder. Love the person, even if you hate the disorder.
    • Separate medication side effects from the disorder/person.
    • It is not OK for you to be neglected. You have needs & wants too.
    • The illness of a family member is nothing to be ashamed of.
    • Don't forget your sense of humour.
    • It may be necessary to renegotiate your emotional relationship.
    • It may be necessary to revise your expectations.
    • Success for each individual may be different.
    • Acknowledge the remarkable courage your family member may show dealing with a mental disorder.
    • Your family member is entitled to his own life journey, as you are.
    • Inability to talk about feelings may leave you stuck or frozen.
    • After denial, sadness, and anger comes acceptance. The addition of understanding yields compassion.
    • Mental illnesses, like other diseases, are a part of the varied fabric of life.
    • Shed neurotic suffering and embrace real suffering.
    • Symptoms may change over time while the underlying disorder remains.
    • The disorder may be periodic, with times of improvement and deterioration, independent of your hopes or actions.
    • Identical diagnoses of two individuals do not mean identical causes, courses, or symptoms.
    • You have a right to assure your personal safety.
    • Don't shoulder the whole responsibility for your mentally disordered relative.
    • Mental health professionals, family members, & the PTSD sufferer all have ups and downs when dealing with a mental disorder.
    • Forgive yourself and others for mistakes made.
    • Mental health professionals have varied degrees of competence.
    • If you can't care for yourself, you can't care for another.
    • The needs of the ill person do not necessarily always come first.
    • It is important to have boundaries and set clear limits.
    • Learn as much as you can about PTSD. Knowledge is power.
    • Recognizing that a person has limited capabilities should not mean that you expect nothing of them.
    • Don't be afraid to confront your family member, especially if you suspect they are planning to hurt themselves.
    • Your conflicted relationship may spill over into your relationships with others. You may unconsciously reenact the conflicted relationship.
    • 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.
    • Eventually you may see the silver lining in the storm clouds: increased awareness, sensitivity, receptivity, compassion, maturity and become less judgmental, self-centered.
    • You are not alone. Sharing your thoughts and feelings with others in a support group is helpful and enlightening for many.
    • The mental disorder of a family member can be an emotional trauma for you as well. You pay a price if you do not receive support and help.
    • It is difficult to accept, however PTSD alters the personality of your family member permanently. You may see glimpses of the person you once knew from time to time, but it is important one accepts this "new" person, and not expect them to ever return completely to how they were before the trauma.
    NomadHeart, Jim and becvan like this.
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  3. Nicolette

    Nicolette ♡ Supporter Admin ♡ Supporter Admin Sponsor $100+

    Brilliant information Kathy.

    I hope others can add more......
  4. Kathy

    Kathy I'm a VIP

    I have a nephew with schizophrenia, and the following information is from a pamphlet on handling a crisis with a family member with schizophrenia. However I have altered it slightly and used the tips myself in my own home (with Evie) and found them useful. Of course each person is an individual, cases vary so not all the tips may be helpful to everyone.


    Don't Threaten - This may be interpreted as a power play and increase fear or prompt assaultive behavior.

    Don't Shout - If the person isn't listening, raising your voice will not help. In may in fact increase their stress and escalate the situation.

    Don't Criticize - It will make matters worse; the person is likely not completely in control of their behaviour or doing it or purpose.

    Don't Squabble With Other Family Members
    - over "best stratiegies" or allocations of blame. This is no time to prove a point.

    Don't Bait the Person - Into acting out wild threats; the consequences could be tragic.

    Don't Stand Over the Person - If he is seated. Instead, seat yourself.

    Avoid Continuous Eye Contact or Touching

    Comply with Requests - That are not endangering or beyond reason. This gives the person the opportunity to feel somewhat in control.

    Don't Block the Doorway - But keep yourself between the person and an exit, if you are concerned about them harming themselves.
  5. Kathy

    Kathy I'm a VIP

    Tips for Day to Day Living
    when a relative is acutely ill or recovering from being ill

    1. Provide a structured, supportive, tolerant, low stress environment. Set clear expectations of behaviour and review them carefully. Give your relative clearly defined tasks, but keep expectations moderate. Learn to expect and tolerate some degree of "deviant" behavior. Have a set routine in the household with regular hours for meals, tasks, and other activities.

    2. Keep home atmosphere as calm as possible. Each family member should speak for themselves and be allowed to finish what they are saying. Don't "mind-read" what another family member is thinking or feeling. Allow each family member to handle their own communication with another family member. Don't ask one person to tell another. Do it yourself. Remind each other of that.

    3. Do not get emotionally overinvolved with your relative. Give them psychological and physical space (e.g. let them go to their room or take a walk). Keep criticism and over enthusiastic praise to a minimum. Don't be overly intrusive of your ill relative's thoughts or feelings, like saying, "you wouldn't like that kind of work" or "you really don't like so and so". Expect that they may rest or pace a lot, and have daily ups and downs. Allow this. Adopt an attitude of "benign indifference" and a decreased focus on the details of the ill person's behaviour.

    4. Put limits on hostile behaviour. Often hostile behaviour will decrease if the person is told, in a non-emotional way, that it is not appropriate. If your relative has paranoid ideas (like they feel people are out to hurt them) don't argue them out of it. Just sympathize, saying it must be upsetting to feel like that. Be very clear but calm about the consequences of continuing with disruptive, hostile, or aggressive behavior.

    5. Help in providing stimulation and treatment. Recognize changes in the person that signal they are ready for more independence, or need more help if doing less well. Inform doctors, therapists, etc. of changes in person's condition. Provide stimulation without stress. Visits, outings, etc. are good only if the ill person is interested and can function acceptably. Discovering this is a trial and error procedure. Families can help explore available community programs. Become a knowledgeble aggressive advocate and your relative will get better care and do better.

    6. Take care of yourself. Families must take care of themselves. Share your frustrations with others. Enjoy outside interests, too. Increase your outside social contacts. Make sure all family members have their needs met, not just the sick person.

    7. Remember: The future is unpredictable and stay with the present. Reduce expectations for a rapid recovery. Reduce pressure on your relative for performance. Modify overall expectations and strike a reasonable balance between realism and hope.
  6. Kathy

    Kathy I'm a VIP

    Questions to Ask the Psychiatrist

    Here is a generic list of questions for family members to ask the psychiatrist. Allow a long enough appointment to ask these questions (a 15 minute appointment will usually not be sufficient; try for a 30 minute or longer appointment). Alter the questions according to your needs, and have a paper and pen handy to write down all pertinent information:
    1. What is your diagnosis? What is the nature of this illness from a medical point of view?
    2. What is known about the cause of this particular illness?
    3. How certain are you of this diagnosis? If you are not certain, what other possibilities do you consider most likely and why?
    4. Did the physical examination include a neurological exam? If so, how extensive was it, and what were the results?
    5. Are there any additional tests or exams that you would recommend at this point?
    6. Would you advise an independent opinion from another psychiatrist at this point?
    7. What program of treatment do you think could be most helpful? How will it be helpful?
    8. 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?
    9. Who will be able to answer my questions at times when you are not available?
    10. What kind of therapy do you plan to use, and what will be the contribution of the psychiatrist to the overall program of treatment?
    11. What do you expect this program to accomplish? About how long will it take, and how frequently will you and the other specialists be seeing the patient?
    12. What will be the best evidence that the patient is responding to the program, and how soon will it be before these appear?
    13. What do you see as the family's role in this program of treatment? In particular, how much access will the family have to the individuals who are providing the treatment?
    14. If your current evaluation is a preliminary one, how soon will it be before you will be able to provide a more definite evaluation of the patient's illness?
    15. What medication do you propose to use? (Ask for name and dosage level and write it down.) What is the biological effect of this medication, and what do you expect it to accomplish? What are the risks associated with the medication? How soon will we be able to tell if the medication is effective, and how will we know?
    16. Are there other medications that might be appropriate? If so, why do you prefer the one you have chosen?
    17. Are you currently treating other patients with this illness? (Psychiatrists vary in their level of experience with severe or long-term mental illnesses, and it is helpful to know how involved the psychiatrist is with treatment of the kind of problem your relative has.)
    18. When are the best times and what are the most dependable ways for getting in touch with you?
    19. How do you monitor medications and what symptoms indicate that they should be raised, lowered or changed?
  7. Kathy

    Kathy I'm a VIP

    Advocating for Your Relative - Do's and Don't's

    Here are some do's and don'ts for advocating for your family member with a mental illness. This particular guide is tailored for countries where Medicare is universal (such as Canada, the UK and Australia) so a small amount of the advice may not be pertinent if you reside in another country, such as the USA.

    Families coping with a mental illness need to know:
    • How to be effective in getting help for someone who is seriously ill
    • What questions to ask
    • Who to see and where to go
    • How "the system" works and how best to interact with it


    Try to keep a record of everything —Nothing is unimportant!
    • Keep a list of names, addresses, phone/fax numbers, etc.
    • Start keeping a notebook or diary. The ability to be precise about dates and times of incidents, who said what, and what subsequently happened is crucial.
    • Keep all notices and letters you receive
    • Keep copies of everything you mail

    When someone is mentally ill, patients and families are often so overwhelmed by the experience that vague information or jargon gets accepted as substantive. Family members need honest, direct information. They also need specific, practical suggestions about how to cope during acute and stable phases of the illness.

    To get positive results:
    • Be polite. Keep all conversations to the point. Ask for specific information and write it down.
    • Get the name of the primary case manager—the person who knows the most about the patient. Arrange for an appointment with this person. Request that the psychiatrist or physician in charge also attend. During the meeting, ask to review your relative’s treatment plan. Ask to participate in the development of the Plan.
    • Help keep meetings short—come prepared with a list of specific questions. Some sample questions might be: "What symptoms should we he most concerned about? What can we do to help the patient deal with these? What medications are being prescribed? How much? How often? How is medication monitored? Are there possible side-effects?" (Also, if the patient is in hospital - "When can we meet to talk about discharge planning?")
    • Keep the patient informed of everything you plan to do.
    • Be polite but assertive. As a taxpayer, you are entitled to information, respect, and courtesy. Your taxes go to pay health care employees. You are not asking for gratuities or special treatment! You are simply trying to help get the job done.
    • Educate yourself about the mental health system, starting now. Learn about the departments involved, and about the chain of command in each department relevant to your relative’s needs. Familiarize yourself with services and resources outside the mental health centre.
    • Write letters of appreciation when warranted. Write letters of criticism when necessary. Send these to the head of Mental Health Services or to the hospital concerned.

    • Some actions are effective — others are counter-productive
    • Most professionals want to do a good job
    • Many direct-service staff are over-scheduled
    • These points hold true throughout the system — mental health centres, supervised housing facilities, hospitals, and forensic institutes. Direct staff (those who work directly with consumers — social workers, therapists, nurses, doctors, continuing care workers) sometimes have unreasonably heavy caseloads. Knowing this can help you maintain some perspective on what to reasonably expect.
    • Always start by assuming that the staff care and want to help your relative recover.
    The following will help both you and the professionals:
    • Do not be late for appointments
    • Do not make excessive demands on staff, or harass them with special requests
    • Do not call all the time, or have long phone conversations filled with elaborate details
    Avoid things that DON’T WORK!
    • Dealing with people just because they are accessible, but who actually have little or no power (i.e., secretaries, receptionists)
    • Always criticizing and never acknowledging mental health professionals for their good intentions and hard work
    • Only calling when there is a crisis, rather than establishing and maintaining a relationship with case workers, social workers, psychiatrists, etc.
    • Always expecting immediate attention and blowing up if you don’t get it.
    Courtesy is something we all aim for. Do not, however, overlook the fact that professionals must also be accountable:
    • Don’t feel you should know the meaning of technical terms or phrases.
    • Don’t hesitate to ask for clarification in plain language, if you are unsure of specific issues.
    • Don’t accept vague answers or statements that are confusing. If someone says "We are observing your daughter carefully"— they are providing you with no information!
    • Don’t be afraid to ask for an explanation of procedures. Try to understand who does the observing, exactly what is being observed, how this information is documented, if and when you can obtain a progress report, and so on.
      Don’t allow yourself to be intimidated (and don’t try to intimidate others.)
    Finally, NEVER allow guilt or shame to play any part in these proceedings. Your goal is to help obtain proper medical care for someone who is suffering from a neurobiological disorder. Outdated notions of stigma have no place here.
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