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Caring for someone who lives with sickle cell disease (SCD) can be a rewarding labor of love, but it can also be demanding and overwhelming.
It’s a lot. When it comes to caregiver responsibilities, staying on track with medications, advocating for the healthcare your loved one needs, navigating insurance coverage, and managing pain and other complications are just the tip of the iceberg.
No matter your relationship with the person you’re caring for, it’s important to get the support you need to take care of yourself, too.
We’ll talk about some of the challenges involved in caring for someone with SCD, ways to handle complications, and strategies to care for yourself, too.
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Caring for someone with SCD can have both emotional and practical challenges. If you’re directly involved in caregiving, no matter your relationship to the person with the diagnosis or how often you care for them, your life can change, too.
This can feel especially overwhelming when the diagnosis is new, since the amount of education and support families receive can vary depending on where they live and where they get care.
On a practical level, caring for someone with sickle cell can mean managing many different responsibilities. Not every caregiver handles all of these tasks, but it’s common to:
These tasks can add a lot to a life that’s already full. While caring for a loved one can be rewarding, caregiving may also take considerable time and energy and contribute to emotional challenges.
On top of the practical tasks they handle, caregivers often face emotional challenges, too. Caregivers may feel guilt because they don’t think they’re doing enough, because they have to make hard choices, or because they sometimes feel frustrated or resentful about caregiving.
Research on siblings of children with chronic illnesses has found higher rates of emotional, social, and behavioral difficulties among siblings who do not have the illness themselves. If you’re a parent caring for a child with sickle cell, other children in the family may need additional support, too.
Caregiver burnout is another concern. Caregivers can become exhausted emotionally, physically, and mentally when caregiving takes most of their time and energy. This can make it harder to care for someone even when you love them and want to be there for them.
People living with sickle cell may experience a number of complications. Knowing how to manage them may help you feel more confident and prepared as a caregiver.
When sickled cells block blood flow, your loved one may experience significant pain. This pain, whether from an acute pain crisis or chronic pain, may be distressing to watch.
Different people with sickle cell may have different triggers for pain. Figuring out what triggers pain for your loved one may help you reduce their exposure to those triggers.
Common triggers include:
Once you know your loved one’s triggers, you can help them avoid situations that tend to make sickle cell symptoms worse.
When your loved one has pain that can be managed at home, there are some ways you can help. Different methods may work better for different people, so it’s worth trying things until you find what works best for your loved one.
Pain management techniques include:
People living with sickle cell disease can have other complications, too. It’s important to understand these and know how to manage them as a caregiver. Even experienced caregivers can face new questions if their loved one has a different type of SCD, develops a complication they haven’t managed before, or reaches a new stage of life.
High blood pressure can worsen some SCD-related complications. Caregivers can help their loved one keep track of blood pressure and follow their healthcare provider’s recommendations for managing it.
People with sickle cell disease may have kidney problems. Caregivers can help by making sure their loved one keeps recommended appointments and follows the care plan from their healthcare team.
People with sickle cell disease are at greater risk for blood clots. Your loved one’s healthcare provider can explain what symptoms to watch for and whether blood-thinning medication may be appropriate.
Many people with sickle cell disease deal with anemia (a shortage of healthy red blood cells) because sickled red blood cells break down more easily than normal red blood cells. Anemia can cause fatigue. Following the healthcare provider’s instructions can help manage it.
People with sickle cell disease may also be prone to serious infections because sickled cells can damage the spleen, which helps fight infection. In addition to routine immunization, people with sickle cell disease often need additional vaccinations, as well as antibiotics to prevent infections. Caregivers also need to stay up to date on routine vaccinations — such as the influenza vaccine — to reduce the risk of transmitting infections to their loved ones.
Sometimes, your loved one may need emergency care to manage complications associated with sickle cell disease. Signs that it’s time to seek urgent medical care include:
Confusion and sudden vision changes can be signs of a stroke, which is more common in people with sickle cell disease than in the general population. Other symptoms of a stroke include:
Always seek urgent medical care if you notice stroke symptoms.
Different people living with sickle cell disease will need different kinds of care. Apart from medical care, it’s important to support your loved one’s goals and responsibilities, like school and work, as well as their mental health. If you’re ever unsure what to do, talk to your sickle cell care team for guidance.
If you’re supporting a child, part of your caregiving role means teaching them about sickle cell and helping them manage it themselves in age-appropriate ways. Some sickle cell care programs offer transitional care, meaning that they help your child gradually learn how to manage their own healthcare as they approach adulthood.
These programs can help your child learn how to get the medical care they need, and you can also help them transition in other ways. Teaching them how to manage their triggers, take their medications, and talk to healthcare providers can help them achieve the independence they want and need.
Part of caring for your loved one involves caring for yourself. You may need both practical and emotional support throughout your time as a caregiver.
Support groups (whether in person or online) can connect you with others dealing with similar challenges. Taking time to do the things you love, asking for and accepting help, and practicing self-compassion are also ways to care for yourself and help you avoid burnout.
Keep the lines of communication open with your loved one’s SCD specialist and medical team. Never hesitate to ask questions about treatment options, new or worsening symptoms, or what to expect.
If you feel your concerns aren’t being heard, stay polite but firmly advocate for the care your loved one needs.
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