Caregivers need
self-care too
You’re dedicated to ensuring your loved one receives the best care, from keeping up with medication and coordinating appointments, to helping them stay on track with their treatment plan. You’re there when the pain is severe, or other symptoms flare up. You manage family relationships, handle bills, juggle responsibilities, and often, you worry.
The stress, guilt, and burnout you might be feeling are understandable, and can take a serious toll on your own health. It’s stressful to provide around-the-clock care, and chronic stress can lead to a variety of physical and mental health symptoms. It’s easy to get caught up in the cycle of focusing on the needs of others and neglecting yourself. Yet it’s important to remember that support and self-care are just as essential to your mental and physical well-being as it is for the person you’re caring for.
Much of what can help improve your health and ability to effectively manage stress is tied to the strategies of managing your loved one’s chronic illness: balanced nutrition, physical activity, social connection, and regular sleep routines. Incorporating a few additional strategies to stay on track with your mental wellness can make a big difference in how you manage the challenges of caregiving, build resilience, and find balance.
Ask for help. It’s okay to say you’re not okay.
It can feel as though there aren’t enough hours in the day to accomplish what needs to be done. The demands can quickly add up, leaving you feeling rushed, exhausted and wondering where the day went. To make the most of time and effort dedicated to caregiving, it’s essential to be organized.
- Prioritize your tasks; break down larger tasks into smaller steps.
- Likewise, have a daily routine that is divided into manageable parts.
- Keep medical information updated and in a quickly accessible file.
- Use a planner, or app. Write down a schedule for the week to help stay on track with appointments, medications, and symptom tracking.
- Create a checklist for appointments that includes questions about symptoms and treatment. Take notes during the appointment, or consider exploring health apps that you can add to your cellphone.
- Have a detailed plan for emergencies.
- Delegate tasks among family members and encourage everyone to come together as a team to take care of responsibilities and know their roles in an emergency.
Creating a schedule and using other organization skills contribute to a better sense of control and accomplishment. Instead of feeling overwhelmed, you’re able to see the challenges ahead of you more clearly and plan for the unexpected. This can help you feel more in control each day, as you prioritize what’s important and develop a routine that works best for you.
Keeping the Family Strong
As you care for your loved one, you might also worry that your spouse or other children may feel neglected. Caregiving takes up so much time and energy, it can be tough to balance when you also want to be mindful of the needs of other family members.
- When you make an effort to set aside time for your partner or other children, it benefits you as well. Your relationship becomes stronger, and mutual support happens naturally.
- Even just a few minutes spent on a walk, a one-to-one activity, and sharing a meal together can encourage connection and lift everyone’s mood.
- Think about extended family members as well. Aunts, grandparents, or cousins can help you feel loved and supported, and may even be able to lend a helping hand at times. It’s true that sometimes family members don’t always know the best way to help, even if they mean well. Yet you can always share updates and experiences, and just having the support of other family members – in whatever form it comes – can be invaluable.
- Make it a point to check in with each other regularly, and ask how everyone is feeling. SCD impacts the whole family, so it’s natural for others to feel worry or frustration, or even helplessness.
- Be willing to truly listen when someone expresses their feelings, without judgment. It’s natural to want to offer solutions, but it’s okay if there aren’t any. Sometimes it helps just to voice how you feel.
- It’s also important for everyone to understand the condition and how they can rally to support not only your loved one with SCD, but each other as well. Share updates, openly talk about stress management strategies, and encourage a collaborative, team approach. When everyone works together, it promotes a sense of support and discourages feelings of isolation.
- Remind family members to engage in healthy social connections by reaching out to friends, and participating in hobbies or activities they enjoy.
- Encourage them to seek support when they feel anxious or sad, and share SCD-related resources with them as well. Taking time for self-care and seeking support when it’s needed strengthens the family dynamic by helping everyone’s ability to cope.
- Keep track of each accomplishment and reflect on your progress. Remember that success comes in many forms. Talk about it, offer praise, and enjoy the feeling of positively reinforcing everyone’s efforts. Enjoy a small celebration, like a special meal, or treat everyone to a special activity. It’s a great way to stay motivated and keep spirits high.
- A strong family unit helps balance the emotional and physical demands that come with managing SCD. By working together, you can strengthen your focus on one another, improve communication, and build a strong family support structure. Daily challenges are easier to handle when you know you’re in it together.
Self-care is vital for anyone who is taking care of a loved one. In order to safeguard your health and ensure that you’re able to cope with the daily challenges of caring for someone with SCD, take time to address your own health and well-being. In addition to lifestyle strategies, include approaches to stress management that can further build resilience.
Effectively managing stress can improve your mood and help you sleep better. Even small things can make a big difference in how well you handle stress. Some examples include:
Being a caregiver can take an emotional toll, and it’s not unusual to experience symptoms of trauma, anxiety or depression. If you’re struggling with the impact SCD is having on you or your family, it can be very helpful to find a mental health professional to talk to.
Therapists are there to listen without judgment, and help you find new strategies for coping and building resilience. It’s especially vital to reach out if you’re feeling hopeless, excessively sad, or noticing extreme mood changes or having thoughts of suicide.
Asking for help doesn’t mean that you’re weak or not doing a great job. Reaching out for mental health support can sometimes feel difficult, especially for caregivers. You’re used to managing things on your own, and take pride in your strength. Asking for help doesn’t mean that you’re weak or not doing a great job. Everyone needs support at times, and it’s important to remember that you don’t have to face every challenge by yourself. You are not alone, and there are resources that can provide information and support.
Caring for your mental health can take many forms: caregiver support groups, peer support, talking to your pastor, or even a trusted friend. You have choices.
Grief, anger, and sadness, and fear are all natural responses to the reality of a sickle cell disease diagnosis
These emotions may feel very intense at times and lead to symptoms of depression. Prolonged stress, exhaustion, and the fear you feel when your loved one experiences a sickle cell crisis can make things worse. It’s okay to feel these emotions, and it’s not a sign of weakness. It may be tempting to avoid thinking about it, or to seek comfort through alcohol or substance use, or by mentally 'checking out' through excessive time spent scrolling through social media. But these approaches don't help in the long term, and typically only make things worse.
Thinking about action and purpose can help you cope with the weight of caregiving. Accepting what your family is going through is a crucial first step in managing the chaos that chronic illness can bring. Acceptance means acknowledging the effects of sickle cell disease on your life and loved one, as well as the emotions that come with it. It doesn’t mean that you’re not sad or frightened sometimes, or that you won’t or shouldn’t feel grief. It simply means recognizing the challenges as you navigate the future and find ways to manage them.
As time goes on, think about how to move beyond grief and sadness. The emotional toll is real and can feel overwhelming at times, but it is not in vain. Consider whether the challenges you've faced have led to personal growth, such as discovering an inner strength you didn’t realize you had, building connections that you value, or finding a sense of purpose in your role. These realizations can be fulfilling and emotionally healing. While sadness may never fully go away, it doesn’t have to define every moment.
You deserve compassion too
Compassion isn’t just for others – it’s something we all need. After all, you can’t pour anything from an empty cup. Take time to explore available resources, make a list of stress management strategies that work well for you, and prioritize self-care. Don’t be hesitant to accept help if it’s offered, whether from family, friends, or a professional. Accessing support doesn’t take away from your strength, it adds to it, providing you with tools for resilience.
Find support online or in your area.
Call the NAMI Helpline at 800-950-6264 or text “NAMI” to 62640
