I’m a worrier. I’ve really tried over the years to develop more of a devil-may-care attitude but it’s just not happening. The thing I probably worry about the most is Lauren’s care. The future is a looming cliff which will one day either provide shelter or crash down upon her without warning, destroying Lauren’s life as she knows it. Too dramatic? Too accurate, I think. I try and deal with my sense of impending doom by planning and preparing as much as possible. One of the tools I use is what I call Lauren’s Lifecare Book. It’s a three-ring binder that contains all the information someone would need to take over Lauren’s care if something should suddenly happen to me. I’m not just talking about the daily physical care (although there is info on that in the book as well). I’m referring more to the general management of Lauren’s life – the legal stuff, lists of doctors’ info, our wishes for Lauren’s future, etc.
The book is divided into seven sections:
1. A Vision Statement – This would tell someone what we envision Lauren would like the structure and quality of her life to be like. Here is her current statement:
Lauren will be recognized as a valuable and worthy member of her country, state, and community and the services that will allow her to function as a member of that community will be provided to her.
Lauren will be able to share her love of life and people by spending her days involved in projects that reflect her interests and allow her to give back to her community.
Lauren will be able to make choices about where she will live and with whom she will live with the same autonomy she would have had without disabilities.
Lauren will continue throughout her life to be a valued member of her immediate and extended family and will be included in all family activities.
Lauren will develop friendships that will enrich and widen her life experience.
2. Providers – Here I list the specialty, name, address and contact info for all doctors and medically-related providers. I also list all public and non-profit agencies that participate in Lauren’s services, and several of my fellow parent advocates that could help provide guidance.
3. Daily Care Info – In this section I list all the natural supports that her father and I provide. I also provide details on her schedule, medication, feeding, diet, and food preparation, bedtime routine, bathroom schedule, shower routine, communication needs, seizures, and other details - like the fact that she is left-handed.
4. Copy of our Wills – I want someone to be able to get their hands on this info quickly.
5. Guardianship – Copies of Lauren’s Letter of Guardianship is included here.
6. Power of Attorney – If we go away for more than a day I add a General Durable Power of Attorney. I keep a basic form in my computer that I can update with dates and names. So I can fill it out quickly, have it witnessed, and add it to the book when we need it.
7. Letter of Intent – Wills, guardianship documents, and powers of attorney only go so far. If something happened to me tomorrow who would I want to step in, how would I want things handled, what are our wishes for Lauren’s care? The person who will be her guardian may not be the best person to oversee her daily care. Should she stay in our home or should other arrangements be made? Making sure that your wishes are known and ensuring that people don’t assume that they know what you would have wanted is very important. This document is a tangible indication of your wishes.
I make sure that this book is always accessible. My family members know where it is kept. I make sure to update it as needed. It gives me a sense of security. It would speak for me if I could not be there. It is my attempt to protect Lauren from the day when that cliff begins to fall.