Many of us avoid advance care planning because we’re fearful of giving up control of our care. But developing an advance care plan is actually about taking control.
This is especially true for people who have been diagnosed with a neurological disorder, such as Alzheimer’s or Parkinson’s disease. Losing the ability to make decisions for ourselves is scary to think about. It’s also upsetting to think people might make decisions at odds with how we would like to be cared for—especially well-meaning decisions that may end up causing us to suffer.
The best first step is to talk with your family about your wishes and preferences for your end-of-life care. This is not easy, but if you fail to create an advance care plan, you leave all the decisions to your family members or doctors.
By creating an advance care directive document and designating the person you would like to carry out your wishes, you make those decisions for yourself while you are able.
Here are some questions to think about and discuss:
- How do I want to be treated in my last days?
- Do I want to receive life-extending care even if it means causing pain for myself, or anguish for my family?
- If I don’t want extraordinary measures taken to extend my life, how do I make that clear to my family and my doctor?
These are sensitive and emotional questions to consider. But now is the time to empower yourself. Clarify and document your end-of-life wishes with an advance care plan. Make copies of that plan and designate someone you love and trust to stand up for you when you no longer can.
Talking with a professional and your loved ones at the same time can make it a little easier. Collaborative Care Nurses on each Primary Care team can help you talk it through. Trained volunteers are available in Cheshire’s lobby a few times a month to give you more information or make an appointment to help you and your family consider these important decisions.