Care partners play a crucial role in the lives of people who live with chronic health conditions. They are an invisible, unpaid workforce supporting the foundation of our healthcare system, providing 80% of all home care services. Not only do they provide valuable unpaid services, many must juggle employment responsibilities along with caring for a loved one. Others lose significant amounts of lifetime earnings and social security benefits so they can stay home with a family member.
Care partners have their own needs when their loved one is diagnosed with a chronic disease, and they need the supportive understanding of other myositis care partners who understand what they are going through in the same way the myositis patient does. TMA provides a number of opportunities for myositis care partners to find this support:
TMA’s Care Partners Forum includes a section just for care partners. The Forum is a safe, private, password-protected chat room where TMA members share their stories and resources with other myositis patients and care partners. Participants are very responsive and sensitive to the needs of others, and many develop the close connections of a support group.
MyoCon: TMA’s Global Myositis Patient Conference happens every year, usually in September. It always has a number of sessions geared toward care partners. While you can share this experience with your myositis patient partner and learn everything you can about her or his disease, you can also meet and talk with many other care partners who are experiencing similar feelings and concerns. The following videos may be of interest to care partners:
Emotional concerns of care partners are often overlooked. We urge you to be aware of how you are feeling and take advantage of these coping strategies when needed.
Practical resources – TMA has curated these resources that can be important for care partner as well as patients.