At the age of 56, a single parent from the baby boom age, my youngest son is now 26, and at this time in my life I need to plan for my retirement.
In a few years I will be heading toward the twilight of my life, so I need to take into account how that affects the life of my son, Kyle, who experiences Down Syndrome. Just like many families who live with and care for their adult sons and daughters for most of their life, it is my responsibility to share vital information that I might be the only one who knows, such as how, what, when, and where services are to be received. This way all the hard planning that has made his routine and the quality of life possible can continue even when I’m no longer able to care for him or myself as I age.
Up to this point most families don’t plan for such events, thinking that they will outlive their loved one with a developmental disability, brushing aside thoughts of what the future might hold for them. If I don’t think about it won’t happen. So usually what happens is when the parent or care giver has a medical emergency there is no plan of care or support for themselves or for their adult son or daughter with a disability, leaving both in need of a plan of care. It will be important to identify who it is left to sort through the maze of services, or lack of services, to help during this very vulnerable time.
Person Centered Planning is a tool that is used to help people plan for the future. Just as you plan along awaited trip you use a simple guide to help you make the journey comfortable to enjoy your precious time you have set aside. When it is time to plan, bring together the people who will be in the family’s life at that critical time. Usually, it is left up to siblings who have not been very involved in their sibling’s day-to-day care. Their parents did a really good job of caring for their sibling, but most find out the hard way what the daily routine looks like for their sibling.
By using the Person Centered Planning method, you have a document on hand so that you are able to have input into a plan of care before a crises.
Aging parents must start thinking about drafting a will and learning about trusts for your peace of mind. Think about the use of Person Centered Planning as a tool, as it can help relay your wishes and concerns. Share information about their care, like who their doctors are, what their care plan is, and other things like a living will. This is in case the parent loses their ability to share vital information to the people who care and to service providers who need to plan action steps. What history of care has been provided, what are the needs, who can help, what is the plan of care when you or I are not able to communicate the needs of our adult sons and daughters? As we age, the plan becomes the family plan, not just for the individual but for the whole family, including the network of support and those who will be left to sort things out.
The process helps pull together all their important information so that people who come in and out of the person’s life have something with which to help plan a positive quietly of life for the individual and their family.
Pierce County Parent to Parent has also put together a care notebook that helps families keep important information together for when the parent is no longer able to speak for themselves or share information that is important, not just for the individual with the disability, but for the family itself.
Reunited photo courtesy Jenn Durfey via flickr