Home
Session Ten - What to do when your help is turned away

 Materials Needed:
Handout R:"What To Do When Your Help Is Turned Away"
  1. What can family members do when their help is turned away?
    1. Patients can reject help in two primary ways:
      1. Patients can reject caregivers' offers of help directly:
        1. Ignoring you when you offer assistance.
        2. Becoming angry in an effort to distance themselves from help.

      2. Patients can reject treatment:
        1. Refusing to take prescribed medications (not taking the medications as the doctor prescribed or not taking them at all).
        2. Refusing to participate in treatment / therapies / classes.
        3. Drinking alcohol and/or using illicit drugs such that prescribed treatments are ineffective.

    2. Family members often experience the refusal of treatment as very frustrating. Caregivers may take the choice personally, even if the decision has nothing to do with them.

    3. Failure to obtain adequate mental health care is actually quite common. The Surgeon General of the United States, David Satcher, M.D., Ph.D., reported in his publication on mental health that nearly half of all Americans with a severe mental illness fail to seek treatment (Satcher, 1999).

    4. Research has found that depressed people reject support more often than do non-depressed people. Depressed people also ask for help more indirectly (e.g., sulking, picking fights, distancing emotionally or physically) than do non-depressed people (Rosen & Amador, 1996).

  2. Why do patients reject help? (parts adapted from Adamec, 1996; Rosen & Amador, 1996; Torrey, 1988)

    • In some ways, the issues surrounding rejecting help and advice are not unique to patients with a mental illness. People commonly fail to comply with doctor's orders, even when they know that the directives are good for them. For example, the media and health care professionals repeatedly remind us to exercise regularly, decrease our intake of fats, limit our use of alcohol, eat more fruits and vegetables (etc.). Diabetics are urged to modify their diets and monitor their glucose levels. Even with the knowledge of what is "good for us," we commonly make unhealthy choices that can have long-lasting negative effects on our well being. As the popular adage states, "common sense isn't always common practice."

    • In addition, some factors pertain more specifically to mental illness.


          Discussion Question:

    • What are some of the reasons that your loved ones have refused help (either in the past or currently)?

    1. Denial
      Accepting help actually involves three steps (each of which is significant):

      1. Admitting to yourself that you have a problem.
      2. Admitting that you cannot deal with the problem on your own.
      3. Developing the courage to share your problems with someone else.

      • Patients may know that they have a problem, but their pride and need to be independent may prevent them from accepting help. Asking for help can make people feel vulnerable, "weak," (e.g., not "man enough" to deal with it on their own) and ashamed.


    2. Pessimism
      People who are depressed often describe a negative or pessimistic view of the self, the world, and the future (Beck, 1967). Therefore, patients may experience outside help as intrusive and useless. Due to cognitive distortions commonly associated with the mental illness and/or bad experiences with previous treatment, patients may feel hopeless that anything will help.

    3. Impaired insight
      Some patients genuinely believe that they do not need any help. Insight and judgment are commonly compromised with thought disorders, so patients may not believe that anything is wrong. Patients may discontinue their psychiatric medications because they feel better (and think they do not need the drugs anymore), failing to realize that the medications are managing some of the symptoms.

    4. "Forgetting" to take the medications as prescribed
      The medication regimen that the doctors prescribe can be quite complicated, and patients may feel overwhelmed with the confusing schedule. Patients may also be forgetful, so compliance with the daily routine can be difficult (weekly pill boxes can be helpful with this issue). Caregivers are encouraged to consider other possible reasons for "forgetting" if providing structure and support do not improve the patient's compliance.

    5. Discomfort with feeling dependent
      Patients may struggle with allowing someone else to take care of them, especially if the patient has typically played the role of the caretaker in the family system. Accepting help inherently changes the hierarchy and roles in the family, which can result in greater stress.

    6. Delusional thinking
      Patients may have paranoid thinking (e.g., believing that the medications are poisonous; believing that the doctors can read their minds) which can adversely affect treatment compliance.

    7. Poor relationships with doctors
      Patients may feel that their doctor/provider does not really care about them and/or does not really listen. Therefore, the patients' trust in the doctor and in the quality of their treatment may be damaged.

    8. Adverse side effects
      Some medications have unpleasant side effects (e.g., fatigue, weight gain, headaches, stomach upset) that are obstacles to compliance. More specifically, some anti-psychotic medications can result in tardive dyskinesia (tremors and other involuntary movements), and some anti-depressants can adversely affect sexual functioning.

    9. Ego-syntonic (pleasant) symptoms
      Patients with bipolar disorder often struggle with medication compliance with the mood stabilizers (e.g., Lithium) because the manic or hypomanic symptoms (high level of energy, increased productivity, elevated self-esteem, etc.) can be pleasant. Patients may dislike the flattening of affect that is often associated with these medications, so may discontinue the drugs in order to enjoy the "highs" associated with mania. In addition, some patients with schizophrenia find their hallucinations and delusions to be enjoyable and therefore discontinue their antipsychotic medications.

    10. Discomfort with loss of control
      Some patients experience taking psychiatric medications as a loss of control over their thinking and behavior. Patients may fear being "locked up" and being forced into treatments that restrict their freedom. These fears are usually unwarranted, as state laws mandate that patients are only coerced into treatment if they are an immediate danger to themselves or others.

    11. Uncertainty about how to obtain services
      Patients (and caregivers) often struggle with knowing how to navigate the complex mental health service delivery system. Patients may not know where to turn and often experience frustration with the overwhelming and fragmented system (Satcher, 1999).

    12. Stigma
      Our society continues to attach a significant stigma to seeking mental health treatment. This barrier can affect patients' willingness to both seek help initially and to comply with ongoing treatment. Caregivers and friends may understand the need for short-term intervention, but may become impatient and want the patient to "get over it" quickly.

    13. Finances
      Financial issues can be a major barrier to patients seeking and staying in mental health treatment. Sadly, most insurance plans continue to have a great disparity in coverage for mental health treatment in comparison to other illness (Satcher, 1999). Dealing with restrictions on insurance coverage and inadequate finances can be very stressful for family members (Pollio et al., 1998). Finances may be less of a deterrent in certain agencies (e.g., VA system).


  3. Consequences of having your help turned away

    1. When family members' help or professional help is rejected, caregivers may experience numerous emotions.

            Discussion Questions:

      • How have you felt when your loved one has refused your help?
      • Or professionals' help?

      Caregivers often experience the following feelings:

      frustration helplessness
      disappointment hopelessness
      resentment depression
      confusion powerlessness


    2. In the midst of these emotions, caregivers may be inclined to distance emotionally and physically from their loved one. Consequently, the patient may feel alone and unsupported, which may in turn result in an increase in symptoms. This cycle can be very frustrating for both the patient and family.

    3. Family members may become consumed with monitoring the mental status of the patient and worrying about his/her stability. Consequently, less time and energy are available for taking care of themselves. When caregivers neglect their own needs, their ability to take care of the patient is compromised.


  4. How to cope when your help is rejected

    1. Remember that you are not responsible for the patient's behavior. You are only responsible for your own thoughts, feelings, and behavior.


    2. Remind yourself that your loved ones are not rejecting you - rather, they are having difficulty allowing others to help them. Reflect on why they may be pushing you away instead of personalizing the behavior.


    3. Seek support for yourself and continue with your own activities as much as possible.


    4. Calmly express your worry and disappointment to your loved one about his/her choice and the potential implications of it.


    5. Allow your loved ones to face natural consequences for their choices (unless they are in a dangerous situation).


    6. Remind the patient of the availability of others who care and who could be of help (e.g., hotlines, professionals, other family members, friends).


    7. Remind the patient of how well they were doing (and how proud you were of them) when they were taking their medications and/or participating in treatment in the past. Also note how they have decompensated when they discontinued their treatment. Ask the doctor about the option of injections rather than pills, especially with patients with schizophrenia. Compliance can be much better with regular injections than with daily pills.


    8. Remain emotionally available to your loved one. Don't give up. Try to be patient.


    9. Ask your loved one if there are any specific ways in which you could help.


    10. Remember that mental illness often has ups and downs.


    11. Remember the 3 C's from Alanon: Cause, Cure and Control
      • You did not cause the mental illness,
      • You cannot cure it,
      • And you cannot control his/her behavior.
      • Ultimately, the decisions are up to the patient.