Steven is a 63-year-old single man who resided in the home he lived in with his mother and father before they each passed. Throughout the years Steven lived with his folks and did not seem able to maintain employment. He was, however, able to achieve a bachelor’s degree as well as a master’s, leaving his parents hopeful that Steven would get on his feet and make his way. Years rolled through decades and Steven did not make his way. He continued to live with his parents and transitioned to Florida with them when they retired. They would reason that Steven’s inability to get a job and live on his own was because his skill set did not lend itself to market trends, the economy was bad, or he relocated to Florida and the job market is different than the Northeast and so on.

On the other hand, Brian, Steven’s younger brother flourished. He became a successful attorney, raised a family, and took his place in his local community. Over the years, Brian would express his concerns about Steven to his parents and encouraged them to get professional help for Steven to address his inability to manage his own life. Each time, his parents would minimize the issues and drop the conversation. Steven and Brian grew to have a good deal of resentment toward each other. Brian unsuccessfully continued to engage his parents in planning for Steven after they were gone. All the while, Steven was left with the impression that his folks would always take care of him, and he had nothing to be concerned with. Unbeknownst to Steven or Brian, their father lost the lion share of his portfolio in high-risk investments leaving Steven without any safety net for the future.

Their father passed first and after their mom’s death in 2019 Brian felt a sense of responsibility toward Steven and chose to be more active in his life. Steven seemed to be managing his own complex health needs, including in-home dialysis as well as financial responsibility for monthly expenses. Brian was cautiously optimistic and would do his best to engage Steven in his affairs without discouraging him and Steven would continue to state that he had everything under control. However, Steven received a foreclosure notice that the courts would pursue legal action regarding foreclosure of his home dating back to 2019. Brian had no knowledge the home was in foreclosure. Luckily, the hearing was delayed because of Covid-19 restrictions and Steven’s case was postponed, giving Brian an opportunity to help his brother. Steven repeatedly refused Brian’s help because, as he explained, he did not want anyone having authority over him. Steven has significant chronic health issues, no financial wherewithal and would have no place to live once the home foreclosed.

While there are many painful, emotional problems that arise for parents and siblings of children with mental illness, it seems that most often the caregiving responsibility falls largely on the parents and as the child with mental illness ages, so do the parents. Aging parents may begin to face the additional challenges of their own aging process which can significantly impact their ability to maintain the role of primary caregiver.
In our work with families of adult children with mental illness, it is not unusual to find that the aging parents have not planned for the future of this child and may assume that siblings or other family members will take on the role of caregiver after their death.

There are tangible steps parents can take that will ensure that their adult child with mental illness or special needs will be properly cared for once they have died and their other children can be actively involved without feeling so burdened. However, it requires that parents recognize there is an issue and make future caregiving decisions before the family is in crisis, an aging parent becomes incapacitated or dies. The fact is that the lack of planning can have significant consequences for the entire family.

1. Have they had ‘the conversation’ to make clear the roles other children or family members will play in the life of their child with serious mental illness once they have passed or can no longer serve as the primary caregiver?

2. Where will their child live when they can no longer take care of him or after they are gone?

3. How much can they afford to provide for their child’s ongoing care and maintain their own growing care needs?

4. How much will be left for their child’s ongoing care once they have passed away?

5. What legal documentation have they executed to support the long-term planning and ongoing care of their adult child with serious mental illness?

6. How does their estate plan impact the lives of their other children?

7. Do they have strategic alliances with key professionals to problem solve and help them plan for their child’s future?

a. Care Manager
b. Elder Law and Special Needs Attorney
c. Guardianship Attorney
d. Estate Planning Attorney who has strong relationships with Guardianship and/or Elder Law and Special Needs Attorneys
e. Financial Adviser

These are some of the critical questions we address with our clients facing the issues of long-term planning for their adult child with serious mental illness. I encourage anyone facing these issues to be proactive, well thought out and seek proper guidance. It can be so difficult, but the lack of planning can be daunting to those left to pick up the pieces.