An attorney can assist with navigating legal concerns around guardianship and advise you on whether to involve a financial planner. A psychologist, social worker, chaplain, and/or spiritual leader can provide a space to talk about emotional and logistical concerns. Palliative care clinicians are also a good resource for guidance.
Guardianship
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As a child reaches legal age (18 in most US states) their primary caregivers no longer have full authority over medical or other decisions, whether or not the adult child is capable of making those decisions. Maintaining your role as decision-maker and advocate and ensuring continuity and ensuring access to high-quality, developmentally appropriate services for your dependent adult child takes careful advance planning, generally beginning in mid-adolescence.
Parenting is a lifelong process, particularly if the child’s chronological age does not correspond to their developmental age. When your child is a minor, you can make all medical decisions for them. But at adulthood their legal status changes, and parents no longer have decision-making authority regardless of whether the child has the capacity to make their own decisions intellectually and independently.
Many problems can be avoided if you petition the court in advance to become your child’s legal guardian. Having guardianship allows you to make medical decisions for your child and provide uninterrupted access to medical care and support. It is a continuation of what has already been established over the years as you’ve cared for your child: that you are in the best position to understand, interpret and clearly state your adult child’s needs. Planning for guardianship should begin when your child is in their mid-teens, and preparation to file for guardianship should ideally take place in the year before they reach adulthood (18 in most states).
While the court process involved with guardianship is in place to protect adults with significant needs, it can feel invasive, inconsiderate, and unjust. Family dynamics and individual capabilities may also raise questions about who will be the most appropriate legal guardian(s): one or both parents, a sibling, another adult, or some combination? You deserve and will benefit from guidance and support as you work through the practical details and emotional aspects of the guardianship process. A social worker and/or palliative care team can help you. An attorney can assist you or find another source of legal counsel.
As your child ages, you too are aging. You may be facing your own health concerns and have questions about whether you can physically continue to care for your child. If you are reaching retirement age, you may have financial concerns. You may also feel sad or angry as you see your peers experiencing the freedom of having an empty nest. And if they are living, your parents—your child’s grandparents—are also aging. They may be less able to offer support and may need help themselves.
All of these concerns may prompt questions of how to increase in-home support, and/or whether it would be beneficial to consider out-of-home placement or programs for your adult-child. As you navigate these concerns and questions, there are no right or wrong answers. It is important to remember that you are doing the very best that you can in making decisions for your child and family.
Your role as guardian comes with new responsibilities. Guardians are accountable to the courts, and are required to file paperwork and to report on any concerns they have. These new expectations may frustrate you as you come to understand that you are not the only one now involved in your child’s care. The challenges and losses will take time to navigate. You may experience grief or anger.
Your child’s transition happens within the context of your family system, which is likely also changing. Siblings may be moving out of the home, impacting the family dynamic. They may have helped in the care of their sibling but are no longer present to assist and offer respite. You may have limited social contacts with others as you participate in fewer activities with healthy siblings. It may also be difficult to explain a sibling’s absence to the adult-child who has limited understanding of these events.
On the other hand, depending on your family’s situation, you may have to ask others to become more active in your child’s support. For example, if your own health or some other concern makes you feel unable to take on the guardian role, another family member may be the best option. Or, you may have to appoint a legal guardian outside of the family circle. The prospect of giving over control may make you feel anxious and vulnerable, perhaps guilty. Always remember that you are doing what is best for your child.
