Workshop Prepares Aging Parents To Provide for Mentally Ill Children
For older parents whose adult children have serious mental illness, the future is riddled with uncertainty, and a single question is enough to provoke many sleepless nights: What will happen to my child when I can no longer care for him or her?
Although some anxiety can be allayed by planning for the child's future, many parents in this position are overwhelmed at the thought of creating such a plan—they may be struggling with their own health problems and preoccupied with their child's mental illness at the same time.
Parents must also face difficult barriers before they can begin planning for their child's future, according to Agnes Hatfield, Ph.D., director of the National Alliance for the Mentally Ill (NAMI)-Maryland Older Caregiver's Project and mother of an adult son with mental illness. (The advice in this article also applies to other caregivers of relatives with mental illness, such as siblings.)
Hatfield is a longtime NAMI member whose concerns for her own son's future spurred her to action six years ago.
It was then that she created a four-hour workshop to help caregivers“ make the relative's period of transition away from dependence on parents to dependence on themselves and others in the community as smooth as possible,” she said.
There are many cases, Hatfield noted, in which a parent has been providing for an adult child with mental illness yet has made no plans for his or her future, including preparing that child emotionally for a time when the parent will no longer be around.
When the parent becomes critically ill or dies, the child may experience a mental health crisis so serious that he or she needs to be hospitalized, she said.
In the workshops, Hatfield addresses issues such as the need to prepare the son or daughter for the loss of the parent, the role of siblings, the selection of an advocate for the relative, and creating a trust or will for the child with mental illness.
Hatfield leads the workshops with an attorney. The Maryland Mental Hygiene Administration funds the workshops, which are held in more than five counties around the state several weekends a year.
In her experience leading the workshops, Hatfield has noted that “the biggest obstacle to developing a plan for the relative's future is procrastination.”
That procrastination may result in part from unresolved feelings parents may have toward their child's mental illness, making it especially difficult for the parent to start planning for the adult child's future.
“Parents may feel overwhelmed when they think about a loved one coping in the world without their love and support,” Hat-field said.
She said she can empathize with many of the parents who attend her workshops. “They speak about great anxiety or pain because they acknowledge that their hopes for their child's complete recovery have died.”
She noted that some families insist they are not able to develop a plan for their relative because they have very little money to leave him or her. However, “it becomes even more important to plan when resources are limited so that what is available can be used as wisely as possible,” Hatfield pointed out.
Determine Need
To create a plan for the son or daughter, parents must first assess their child's needs and note how each of those needs are currently being met.“ Caregivers need to take special note of all the things they do for their relative during the course of a week or month,” Hatfield said, because someone else will need to do those things in the future, “even if that someone else is the disabled family member himself or herself,” Hatfield said.
Caregivers must then identify resources for meeting the needs of a disabled relative. Most of the services will probably be found in the public mental health system, she said.
Hatfield pointed out that it is wise for the person with mental illness“ to make the transition away from dependence on the family to care in the public system while parents are alive and able to support the person during the transition process.”
Families should also be acquainted with services provided by their local social services departments, such as food stamps and medical assistance.
In addition, some religious institutions and civic organizations have programs for people with disabilities, Hatfield noted.
Another option for families who can afford it are private-pay services such as PLAN of Mary-land-DC, a nonprofit organization staffed with social workers who take over many of the roles families once assumed.
Select an Advocate
Once a parent or caregiver has outlined a plan for their relative's future, he or she must select an advocate who will ensure that the plan is carried out, Hat-field said.
Their job is to “oversee services in the community and to go to bat for the person when there are difficulties,” she noted.
Whenever possible, it's a good idea to identify more than one person to serve as an advocate so that they can share the job. “One person may have a better understanding of mental illness, another may be more competent with money, and another may be closer to the person who needs help,” Hatfield said.
Part of the workshop addresses the role siblings play in the life of a brother or sister with mental illness. “How siblings feel about caring for a family member and what roles they are willing to assume will vary considerably from family to family,” she said.
Variables such as the relationships between siblings or the culture in which the siblings grew up can influence their sense of obligation to family members.
Create a Trust
One of the most important things that family caregivers can do for their relative with mental illness is to arrange a trust or will on behalf of that person.
Nonetheless, parents ought to be aware that “leaving money directly to disabled children who are receiving `needs-based' government benefits such as Supplementary Security Income could result in a loss of those benefits,” Hatfield said.
However, some forms of government benefits such as Social Security Disability Income and Medicare are not needs based and thus not affected if a person receives income directly by inheritance.
“Families should consider indirect ways of providing for the relative's financial needs,” Hatfield suggested.
One way to do this is to disinherit the child with mental illness and leave assets to a sibling with the expectation that the sibling will provide for the relative, which may be a risky approach, she acknowledged.
Another option is to set up a trust, which is a legal arrangement under which property is owned and managed by one person for the benefit of another. The trust may provide for dental care, recreation, travel, and transportation, for example.
“Attorneys usually advise the use of discretionary trusts,” Hatfield said, “to benefit the disabled relative without causing the person to lose certain types of government benefits.”
These trusts stipulate that benefits may be used only to supplement government aid and cannot be used to replace government entitlements, she emphasized.
Once a trust is established, it is important for parents to communicate their future plans openly to the rest of the family. “It is better if caregivers can deal with potential conflicts when alive rather than have the conflict arise when the will is read,” she said. ▪
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Published online: 20 August 2004
Published in print: August 20, 2004
Notes
A Maryland-area workshop helps aging parents face the fact that they may not always be around to care for their adult children with serious mental illness and assists in planning for their children's future.
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