Pathways to Increasing Independence for Adults with Mental Illness

Main Line NAMI Forum — 8 November 2009, available at www.NAMIpaMainLine.org

These notes summarize the suggestions from our forum concerning ways to help an adult with mental illness become more independent. This summary is intended primarily for family members, so we will refer to an adult with mental illness who is moving toward increasing Independence as a “loved one”.

Bruce Fay, PhD, psychologist and parent of an adult with mental illness

• Since none of us is completely independent, it may be better to think in terms of interdependence.
• When a loved one’s brain has been assaulted with a mental illness, family members need to accept and respect that it takes a long time for the loved one’s brain and psyche to heal from the multiple traumas experienced. First, the developing mental illness has been a trauma to the brain; then, there often have been additional traumas, including possible contact with the police, hospitalization, becoming a patient in the mental health system, receiving a diagnosis and also adjusting to medication—often several medications before one or more are effective. It is to be expected that recovery is generally a slow process.
• Following the onset of mental illness, the process of recovery begins not only for the loved one, but also for the family members who also experience multiple traumas.
• The loved one must be ready, willing, and able to take steps toward independence/ interdependence. It is difficult, but very important to figure out which steps toward increasing Independence are challenging but useful goals at a given time, and which steps may be too much for your loved one at this time, possibly resulting in feelings of failure and even serious exacerbations of your loved one’s mental illness. This is an art, not a science, which requires sensitivity, gentleness, optimism and resolve.
• Moving toward independence is time-consuming and occurs in stages over time.
• Family members can foster the process of recovery by suggesting a new activity the loved one could try and then waiting (perhaps raising the idea periodically) until your loved one has had time to think about it and develop a willingness to try it. Patience is critical.
• Breaking down a problem for your loved one into manageable pieces can be very effective, as is recognizing and celebrating each small success.
• It’s best to focus on the person’s abilities (as opposed to their disabilities) in helping your loved one recover a sense of self. Finding one’s talent and passion are key to finding purpose in life.
• Recovery is not a smooth process, and your loved one may need more support from time to time.
• You can think of independence as a gift to the loved one. Both of you will have more peace of mind when the loved one is able to cope with life’s stressors more successfully and independently.
• It is also very important that your loved one develops a social network. Community is critical to resilience.

Nadine Hoch, MSSA, LCSW, Executive Director of Planned Lifetime Assistance Network of Pennsylvania (PLAN of PA) 110 Lancaster Ave., (the old Wayne Library), Wayne www.planofpa.org 610.687.4036

• “Independence” is relative—it may be easier to think in terms of varying amounts of support.
• The loved one should develop skills before moving out from the family home.
• Your loved one should be expected to complete daily activities in a structured way. These may include such items as calling a friend, going for a walk, personal hygiene, volunteering/working. Beware of too much unstructured time.
• Help your loved one to maintain a calendar to keep track of medical appointments, volunteer activities, social activities, etc.
• Plans must be made in advance for all activities of daily living–hygiene, cleaning, cooking, meds—as well as for what-if scenarios—a broken faucet, sickness, etc.
• If your loved one cannot pay bills or cope with the forms that come in the mail, someone in the support system can help with this.
• Your loved one ought to be able to take meds on her/his own but, if not, perhaps the case manager or another person in the support system can monitor this activity. It’s also critical that meds are refilled on a regular basis; perhaps a neighbor can go with the loved one to the pharmacy if s/he cannot handle this on her/his own.
• If there are sufficient funds, perhaps people can be hired to handle some chores (if the loved one cannot) such as food-shopping or cleaning.
• When someone who has mental illness moves out of the home, support comes from family, friends, neighbors, church/synagogue, case manager, and clinicians.
• A roommate is ideal when a person initially moves out on his/her own, but only if you can find a good match.
• One key goal is to work toward emotional independence. Sometimes that can best be done by spreading out responsibility (e.g. one person helps with paying bills and another helps with getting medications) and by helping the loved one to develop other supportive relationships. Family members may need to be “less available” at times to help promote this independence or perhaps this can be better accomplished by discussing the goal of emotional independence with the loved one and a therapist (who can be more objective). Independence is a gift and insurance policy we are giving to our loved one.
• Often a loved one has regular therapy with a clinician who is not a physician and periodic med checks with a psychiatrist. Trust is the key element in therapy.
• Even if the loved one with serious mental illness is not getting services through a Community Mental Health Center (CMHC), it’s a good idea to enroll, to establish contact anyway—especially if Medicaid is the insurer. Some services, such as supported housing, are typically only available when referred by a Case Manager from the CMHC.
• When having trouble getting appropriate/timely services from the CMHC, it’s a good idea to document the need in writing. In general, be a “squeaky wheel” if necessary to obtain services that will benefit your loved one.
• It’s very important to create a “control file” which includes documents and important information about the loved one and her/his support system. Include a copy of the loved one’s photo ID, birth certificate, health insurance, list of meds, and contact information for pharmacy, immediate neighbors, doctors, case manager, the rest of the loved one’s support system, and a calendar with important dates. This control file must be updated periodically.