When one takes aim at a system of privilege, some jump to the conclusion that you hate the people who stand to gain from that system and have no compassion for their struggles. Caregivers can make it hard on themselves and on the patient. They give twenty four hours a day seven days a week looking after people in severe episode. They neglect their own health. They grow weary and cross from all their over-involvement.
Our DBSA chapter feels that caregivers need their own place where they can talk about their issues and we have provided one. We do not tell them what they can and can’t talk about. We do not ask them to support certain laws or advocate for changes that they do not want. We don’t have a patient monitor the group to be sure that they act according to some unbearable standard of political correctness — people need to vent. We shelter them from people who may have an ax to grind (I have heard about other groups where caregivers were roasted over hot coals by angry patients) and who don’t appreciate how hard it is. We encourage them to talk to peers who know what it is like. We always ask them how they are feeling when they come to our patient-family support groups, reminding them that they, too, are important. We feel that their mental and physical health is as important as the patient’s and we tell them so.
I’ve been hit with some innuendo from some online caregivers who imply that I don’t care about the mentally ill. What I believe they are really saying is that I don’t care about caregivers. I do. It aches when I see a caregiver overburdened and I do my best to relieve that. Many have been the times when I have had a couple in a group and told the patient that she or he needs to realize that her or his manic state of mind is creating an extremely stressful environment for her or his spouse. How does this make me a foe of caregivers? I think much of the misapprehension stems from my opposition to Murphy’s Law, which I have explained at length elsewhere. It scares caregivers to hear me talk about sane privilege– just like it scares white people when we are talking about black people — where we who live with mental illness are left out of decisions about our treatment.
A useful distinction is caregiving versus caretaking. The qualities of the giver are enumerated in the following list; those of the taker are hinted at. The caregiver wants the patient to be as well as he or she can be. The caretaker needs the patient to be sick and often disparages self-help and support groups. I have known both in my life. It makes a big difference in my mental health if the person who designates herself as having primary responsibility believes in me and my recovery. I have seen this work its magic not only in my life, but in the lives of others stricken with my illness. There are no exceptions to this rule.
Here are some qualities that I feel make a good caregiver:
- She listens. She has Mental Health First Aid certification.
- He sees himself not as the leader, but as a member of a team which is dedicated to the recovery of the patient which includes the patient and the providers no matter how severely he perceives the patient to be afflicted. He remembers that the patient — if an adult — is not a child.
- She gives what the patient wants — as long as it doesn’t make the problem worse — when she can instead of trying to fix the problem. She encourages hope rather than despair. She believes in and celebrates recovery regardless how temporary it may be.
- If you ask him what does he want, he can give you an answer that doesn’t mean “I have to be here for her and only for her.” He has a life of his own. He does fun things for himself. He does not thrive on being seen as an “angel of mercy” but is himself.
- She gets enough rest so that she doesn’t lose her temper or become violent.
- He recognizes that she has times when she is asymptomatic and times when the illness is consuming her. He does not, therefore, treat her as always unable to care for herself.
- She avoids negative judgements. She exhibits a “live and let live” attitude.
- He makes a distinction between the information he needs to help the patient and all the gritty little details that psychiatrists and psychologists gather that he really doesn’t need to know about. He doesn’t probe into the patient’s private life except when it is directly relevant to the diagnosis and only when the patient is in episode. He earns access to the patient’s psychiatrist through trust.
- She has good boundaries. She respects them in her charge and sees that her own are respected, too. She is not afraid to draw lines when her charge is treating her poorly by kicking him out, calling the police, etc.
- He champions the interests of the patient when she needs a champion. He may do the shopping for her, cook, clean when she cannot do it for herself. He will help her fill out the forms for disablity insurance and housing if she needs the help.
- Her goal for the patient is stability and recovery, not dependence and continuous dysfunction. She fearlessly rejects ableism and sane privilege.
- He sees a psychiatrist or a psychologist himself.
- She attends caregiver support groups. If none exist, she creates one.
- He is kind. He doesn’t give with strings attached.
- She doesn’t hesitate to contact her charge’s psychiatrist when she notices something that might be a new symptom or if the patient is a danger to self or others. He watches for signs of over-medication and harmful side effects.
- He doesn’t use the stress or the authority of his position as an excuse for bad behavior. When he acts badly, he apologizes unequivocally. He can take criticism from the patient.
- She doesn’t nag. She doesn’t call the patient names or scold him for the mere fact of his diagnosis. She doesn’t get her way on the grounds that she is sane and the patient is crazy.
- He doesn’t interfere with treatment. He doesn’t suggest that the patient doesn’t need meds, doesn’t need to go to a therapist, etc. He lets the patient have the first say in who she will see as a psychiatrist or a therapist.
- She attends family therapy and couples counseling, where appropriate, with the patient. She is open to learning how to behave and communicate better with input from the patient and the therapist.
- He seeks out the roots of stigma in himself, does his best to eliminate it in his dealings with the patient, and educates others in the family and the surrounding community.
- She supports legislation and research which will better the life of the patient as seen by the patient.
- He surrounds himself with people who can help him look after the patient so that he is not overburdened.
- If the patient does not want her involved in treatment, she makes sure that the patient has someone he can trust to fill this role and then goes on with her life. She doesn’t feel robbed or betrayed.
- He doesn’t press for premature “recovery”.
- She never gives up on her ability to change and do better in his role.