Building a Care Team
A care team is the group of people who you’ll partner with and rely on to provide you help, care, support and connection throughout the course of the disease. You are in the center, but you are not there alone.
Importance of building a care team
The help provided by others can minimize stress and feelings of being overwhelmed. Developing your own network of helpers may help you lead a more productive, active and engaged life while living in the early stage of the disease.
Getting people to help you with certain tasks works better with a well-thought-out plan rather than trying to find help in an emergency situation. This plan will provide you — and the people assisting you — with confidence that the assistance you need will be there when you need it.
Who should I include on my care team?
Family, friends, neighbors, professionals and your community are all part of your care team. Start building your team by identifying a decision-maker you trust. Often this person is a family member or friend. Have a conversation with this person about the type of help you may need and your long-term priorities. Build up your team with other helpers.
Your care team should include:
- Family members, whether living with you or living across the country
- A close friend(s)
- Neighbors or others who may help with your day-to-day tasks
- Your general practitioner, neurologist, counselor and/or other specialist
- A volunteer from a community organization, members of your church or other social group
Your care team circle
You are at the center of the care team with those closest to you with you. Regardless of who is with you as you start the process, you will expand your inner circle as you tell others about your diagnosis, as well as add the additional circles of medical care professionals and community resources with time.
Tips to develop your care team
- Identify which friends, family and neighbors may be willing to help you.
- Discuss the help you may need. Have a conversation with each person who may be willing and able to assist you.
- Be specific. State clearly what help is needed or may be needed in the future.
- Ask if you could do things together. Examples include shopping or preparing meals.
- When asking for help, seek individuals who are willing to listen and who care. Avoid people who seem judgmental, critical or blaming.
- If someone isn’t able to help you, don’t blame yourself. It's usually not because of anything you did, but has more to do with what's going on with the other person.
- Say thank you! Everyone likes to feel appreciated, and thanking people makes it more likely that they will help again in the future.
Next: End-of-Life Planning