When Jeffrey experienced the recurring infections typical of Primary Immunodeficiency, there were so many lonely nights in the hospital. It was heartbreaking to hear our child ask us to Do Something! when we were doing everything we could to keep him healthy and well.
Being a caregiver, whether for a child or adult, is a long-term commitment and can be overwhelming at times. It’s important to find ways to adapt to changes in your life and ask for help when you need it. Call on friends, family members, and stay connected to your community. Here are our top tips for where to find caregiver resources and support:
Local Organizations and Support Groups
It may be beneficial to step outside your regular community to gain new perspectives. Search out local organizations or support groups to connect with other likeminded people. These groups may encourage you to develop new ways to manage stress and frustration, prevent you from feeling isolated, and help you to find additional valuable contacts you may not know about.
Social Media
Social media is a great place to connect and communicate with other caregivers. You might find it helpful and eye-opening to share experiences, suggestions, and accept support from others in similar positions. Try searching Facebook for caregiver support groups where people share skills and experiences that they’ve gained overtime. You may learn something new!
Blogs and Online Resources
Blogs (like ours!) offer valuable information, recommendations, and guidance based on experience for caregivers and patients alike. There are many online resources available to help to educate your community about your patient’s disease, quality of life, expected longevity, and more. Be sure to pass along your knowledge by sharing your own story and resources you find helpful with other caregivers!