Lived Experience
A letter to family caregivers in a family with someone with bipolar illness, schizophrenia, or clinical depression
by Larry DeAngelo on 12/16/18
Dear Family Caregiver,
I am addressing those caregivers that have a loved one with a diagnosis of bipolar illness, schizophrenia, and/or clinical depression. These ill-defined illnesses are spectrum disorders. Patients with these diagnoses have a range of symptoms: some experience single episodes of depression, psychosis, and mania and others chronic, multiple, and severe symptoms. This document addresses the latter, families dealing with serious and persistent mental illness. Most of the ill family members have had multiple hospitalizations and half of them are abusing substances. Although most people with mental illness are not violent, violence and/or the threat of violence is present in these families, (I include the threat of suicide). Some peers have cognitive deficiencies. Having mental illness in your family has a terrible financial, emotional, and structural impact on your entire family.
Your Situation
Your goals for your ill family member are different from their goals. Your focus is on the well-being and safety of your ill family member. You see medications and hospitalization as good things. You live in a constant state of despair worrying about the possible suicide of your family member. You worry that they will be homeless, destitute, or incarcerated. You feel that your ill family member’s life will improve if they accept their illness and accept treatment. You live with constant guilt that you caused this illness and you do not have a clue on how to end this nightmare. Many of you are depressed, anxious, and in need of therapy.
Your ill family member’s situation.
Your family member with major mental health issues wants a life not a pathology: a job, relationships, housing, financial independence. Frequent hospitalizations and current treatments can be traumatic and disabling. Your family member’s world is a world of stigma and the resulting discrimination. Their life is on permanent hold. Their peers are married, have a job, in school and/or, have a family. While your loved one is trapped in your house with no job and no future. They want and deserve a better life. They cannot get there because they are ill.
The Mental Health System
Your mental health system is underfunded, the clinicians are well meaning, overworked and underpaid. Clinicians place huge barriers between you and your ill family member. Many clinicians feel you are part of the problem and refuse to make you part of the solution.
Given that the above description is your situation, what can you do about it?
Educate yourself on all aspects of mental illness and the mental health system. Education gives you personal power and the confidence to communicate with professionals. NAMI’s Family-to-Family education course saved our family. In Family-to-Family, you learn to develop a variety of coping skills, problem-solving techniques, hone communication skills, share the burden with others, and learn acceptance. You learn that you cannot fix mental illness, and to forgive yourself for mistakes that you have made. You learn what treatments are effective, and where to find mental health resources, and to understand disability benefits. You will need all the knowledge you can acquire. This is a lifelong assignment!
Take Care of Yourself. Your wellbeing is important to yourself and your family. Your mental health system forces you to be a case manager, health plan coordinator, and advocate. You cannot do an effective job without knowledge of mental illness and the mental health system. NAMI’s Family Caregiver Support Group offers a safe, supported environment allowing you to share your innermost fears and learn from the wisdom of a group of people in your same situation. The level of your compassion and effectiveness in helping your ill family member is directly related to your energy and physical and mental health. Stress, poor health, exhaustion make you a combative, angry, guilt ridden person. Depression and anxiety are rampant among caregivers. I know I have been there.
You have to learn to let go
Understand that letting go does not mean abandonment
Accept the reality of your situation (Reality-based hope)
Reset your expectations
Know that you have done your very best
Understand that you have an obligation to yourself, your partner, and other family members.
Understand that YOU cannot fix it
Understand that YOU cannot control the behavior of others but can control YOUR behavior
Share the responsibility with others
Collaborate with your ill family member and STOP enabling. Listen, Empathize, Agree, and Collaborate.
Learn to set limits and mean it
Communicate don’t engage
Understand that to let go is not to care for, but to care about
Larry DeAngelo is a NAMI Massachusetts Affiliate President, NAMI Basics and Family-to-Family teacher, State Family-to-Family Trainer, and Support Group Facilitator.
