Tell Your Story: Documenting Preferences and Preparing Advance Directives
HD interferes with the ability to learn new things and recall old memories. But you have years to tell your story before HD starts shutting your abilities down.
Take time to communicate, in writing or video, what’s important to you. Think about the following topics:
- Where do you want to live when the disease progresses?
- Who do you want to help take care of you?
- Who do you want to take care of your children?
- Do you want someone to monitor your ability to work?
- Describe some signs of when you think you should stop working.
- Do you want someone to monitor your ability to drive?
- Describe some signs of when you think you should stop driving.
- Are you worried about depression or suicide? Talk about your desire for someone to help you get treatment.
- Describe what’s important to you spiritually.
- Describe your values and what makes you unique.
Legal documents such as Advance Directives, Living Wills, or Medical Power of Attorney will provide a legal outline for the type of care you want.
Five Wishes is a legal directive that can help you designate your chosen health advocate as well as explore deeper conversations around your personal, emotional, and spiritual needs through illness and end of life. It is recognized in all but four states; Kansas, New Hampshire, Ohio, Texas as these states require state approved forms with state approved language. Preview an example of the Five Wishes document here.
Conversations around end-of-life wishes are hard and emotional. Consider that communicating your wishes now, will make it easier for your loved ones when these types of decisions need to be made.