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A Parents Perspective

By: Carrie Morris

Long-term planning—the very phrase conjures up images of gloom and doom. Most of us avoid long-term planning until catastrophe strikes and we have no choice but to consider the future.

As the mother of an adult son who sustained severe traumatic brain injury in 1995, I’ve experienced the stages of grief—the same stages experienced by a person who loses a loved one to death. I’ve lost my son, too, but there is a vast difference—he is still alive.

I’m beyond the stage of denial. I’m beyond the stage of thinking I can do it myself. I’m now into reality. And reality is long-term planning. For 8 years, I’ve been besieged by thoughts of what will happen to him when his parents are gone, and there is no one to address his everyday needs. There is no one who knows him as we do. He has difficulty expressing his needs. That is partially my fault, because I anticipate his needs and accommodate them without his participation. I recognize that he will need someone to do this for the rest of his life. And who will accept this challenge? It’s time to plan.

Life goes on. That’s easy to say, but it’s hard to visualize his life without his parents. Our challenge is to identify his future needs and plan how they will be met for many years following our deaths. There are legal implications, financial ramifications, and emotional issues. It all seems too hard! But it must be done.

We attend seminars on long-term planning. We meet with our broker to determine how much money will be available in the future. We identify who will care for him, and first and second alternates. We specify who will serve as his legal guardian, and first and second alternates. We set up a special needs trust. The more we explore options, the more we realize we should have started sooner.

But who knows what the future holds? We plan when we realize the need. And the need is compelling for those of us with a loved one who has sustained catastrophic injury or illness. The first step is to begin talking, gathering information, and planning for this reality that faces us, our family, and loved ones.

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