In my work at the NAMI HelpLine, I have come to realize the important role that grandparents play when mental illness affects the family. Normally, grandparents play a special, dynamic and important role in the lives of their grandchildren, frequently providing unconditional love. They are often a link to the family’s history or act as a buddy, hero, mentor or role model. When serious mental illness occurs in the family, however, there are times when grandparents have to step into a new and unexpected role—raising their grandchildren while caring for their adult child living with a mental illness. In this case, grandparents can become the family anchor.
My conversations on the HelpLine have introduced me to grandparents who are juggling the needs of an ill child with the stability and structure their grandchildren require. At the same time, they must attend to their own emotions—the grief of losing the existing family structures as well as grief for the losses their child is experiencing.
Grandparents may not know where to turn for basic information, support, counseling and respite. They must confront privacy laws that keep them shielded from a loved one’s mental health care. These seniors are left to raise children in a world that is very different from the one that existed the first time around.
Grandparent caregivers should try to balance caregiving responsibilities with self-care strategies as outlined below.
- Get legal advice about custody and financial planning. While having only an informal agreement with your child may feel more comfortable, in a crisis you may face challenges enrolling grandchildren in school, obtaining medical and mental health services or insurance. State laws vary, but often temporary custody or obtaining the status of a foster parent, will give you a measure of legal security that will help you maintain a balance of power between yourself and the child’s parents. Find more information about legal referrals on the NAMI website.
- As they will allow, keep the lines of communication open with your child. Let him or her know that they are you are all partners in the grandchildren’s care and their own mental health care. However, stability for the grandchildren is the top priority. Bouncing back and forth between a grandparent’s house and that of an unstable, relapsing parent is very disruptive. When this happens children get confused about where they belong and fearful that their living routine will be disrupted.
- Take care of yourself both physically and emotionally. Go to a support group or talk to a counselor to find coping strategies for the fatigue, anxiety, shame, fear and frustration that may come up from time to time. And—even with your new busy schedule—try to make time for regular exercise and health care. Keeping yourself in good health is imperative to the success of the family.
- If your adult child is willing, ask him or her to prepare a psychiatric advance directive (PAD). This would allow them to have instructions in place regarding future mental health treatment or allow you to make decisions about their treatment should they become unable to do so.
- If they will not prepare a PAD, be sure to have a plan for dealing with acute episodes of instability. Know where to find help, whether it be a crisis intervention team or by calling 911. Your local NAMI affiliate may be able to help you identify resources for managing a crisis.
As you face the challenges of this new role, remember to put together a network of support. You may have to educate those around you about what you are doing so that your efforts will be supported and respected. Be sure to stay informed about mental illness. Create a network of support that includes family, friends, church family and others who are going through similar situations and can truly relate. The NAMI HelpLine can help you identify resources in your community, such a support groups, as well as educational opportunities like NAMI’s Family-to-Family program.
Finally, several grandparents have mentioned that while this new family dynamic can be challenging, it can also be highly rewarding. HelpLine callers have shared that they receive comfort knowing that their grandchildren are safe with them. They learn over time that they have strength that they never knew they had and realize there is no greater gift than the love and respect of their grandchild as they watch him or her evolve into healthy, happy adults.