Caregivers or care partners are often family members or friends who provide important physical, practical, and emotional support to a person with health issues such as sickle cell disease.
Caregivers may have a range of responsibilities on a daily or as-needed basis. Caring for someone you love with the disease is difficult. At home, you are caring for a loved one–complicated by your racing thoughts. The words “without a cure” may strike panic, and there is related stress: “What about the rest of the family? What will we do if they become ill with sickle cell disease.”
If this is you, let me try to help.
I clicked and followed the links down all “the rabbit holes” of this website to evaluate the information provided. I am happy to report: it’s good. Click away—especially if any of the following topics interest you:
- Who Gets Sickle Cell Disease
- Common Symptoms of Sickle Cell Disease
- What You Can Do To Help
- Treatment for Sickle Cell Disease
- Pain Management
- Helpful Sickle Cell Disease Resources
The Hats of a Caregiver
There are many ways to be a caregiver.
For some, it may mean providing 24-hour care.
For others, it may mean researching medical information or arranging for help. Each situation is different, and no one scenario applies to all people with sickle cell disease and their families. Moreover, as the disease and treatment changes, so will the caregiver’s role.
Caregivers may live in the home, share responsibilities, or care from a distance. Remember that caregiving is a team effort. A caregiver is a member of an important team of family members, friends, volunteers, and the health care team.
Each member of the team offers different skills and strengths to provide effective care. If you are the main caregiver, help each team member express concerns, opinions, and emotions.
Also, make sure that the person with sickle cell disease has a central role in all discussions and decisions, if possible. It is very important for the person with sickle cell disease to feel like an active member in their care.