Saturday, December 24, 2011

Caregivers of Family Members with Schizophrenia: Planning for the Future

By Judith Moss


Schizophrenia affects 2.2 million people in the United States and 51 million worldwide. The illness often interferes with a person's ability to think rationally about their condition or make healthy choices. Coupled with this, about half of all people with the illness also have anosognosia; they do not recognize or accept that they are sick. These factors make it incredibly difficult for caregivers to plan for the future. Who will provide care? Where will my loved one live? What resources are there to help us? Every caregiver struggles with these concerns, and while planning can seem overwhelming, starting now will help relieve anxiety and stress.

Agnes Hatfield, former president of the NAMI (National Alliance on Mental Health), conducted a study of nearly 200 caregivers. Hatfield found that only 11 percent made plans for the future that they considered "definite." Seventy-six percent indicated that they would like other siblings to step in to care for the loved one when they became unable to do so, but only a quarter felt that this was likely to happen. Seventy percent of the caregivers said that their schizophrenic children were too scared or too comfortable to leave home, which made planning all the more difficult.

One of the obstacles to planning is the question of where their family member will live and who will take care of them. This presents a problem for a host of reasons: the loved one does not want to move; there are financial concerns; and often, there is a lack of mental health resources.

There are many situations in which it is not advised, or healthy, for someone with schizophrenia to live in his family's home, such as when the main caregiver is ill or elderly or when the illness interferes with the family's chance to lead a normal life. In this case, outside options, ranging from supported living to nursing facilities are recommended.

For those who need assistance with basic living skills and medicine compliance, a residential or 24-hour care home is the best option. This is also the best place for those suffering with an acute psychotic episode. Transitional homes can help patients like this reengage with society and gain a bit more independence while still getting skills training and rehabilitation services. Boarding homes are similar, providing both structure and independence, and finally, supervised living situations are excellent for those whose schizophrenia is well-controlled with medication.

Most families are concerned with cost as caring for someone with schizophrenia can be very expensive. It is essential that they find the help they need now. There are organizations that can help, including:

* Federal and state programs, including food stamps, Medicaid, Medicare, and SSI. * Assertive Community Treatment, or ACT, programs. * SAMHSA, or the Substance Abuse and Mental Health Services Administration can help direct you to resources and support. * Section 8 housing assistance can be beneficial for those who can live independently. * HUD, or Housing and Urban Development. Section 811 provides housing assistance for those with disabilities, including mental illnesses. * NAMI. The National Alliance on Mental Health is a tremendously helpful organization for caregivers. In addition to programs like PLAN, NAMI offers support, information, and other valuable resources.

Taking steps for the future now is important because demand for housing is greater than the supply. Financial resources can also be limited, so to ensure a safe future, consider working out guardianship issues now, taking out a life insurance policy, and/or starting a trust fund for your loved one.

Caring for a family member with schizophrenia can be difficult on a day-to-day basis; thinking about the future can seem overwhelming. Remember that you do not have to do it alone; organizations like NAMI or SAMHSA are there to help you get the support you need and point you towards the resources that can help secure a safe future for your family member.




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