Caregiving for someone with a rare disease can be rewarding but stressful. It feels good to be useful and needed, but the demands and responsibilities of this role can take a toll on your health, relationships, and state of mind.
With so much to do, caregivers may not spend enough time taking care of themselves, but if you want to give someone the best care possible, you must take care of your own needs, too.
Self-care is not a luxury – it’s a necessity
Think about when you fly on an airplane. In an emergency, the flight attendant says to put your own oxygen mask on first before you assist others. That’s because if you run out of oxygen yourself, you won’t be able to help someone else.
Research shows that caregivers are less likely to stay on top of their own preventive health services. These include annual physicals, flu shots, and cancer screenings. Caregivers who neglect their own health are at risk for chronic diseases like high blood pressure or even premature death.
Maybe you’re so wrapped up in caregiving that you don’t notice when you’re struggling and need help. Or, maybe you’re ashamed to take time for yourself when someone you love is seriously ill and relying on you.
It’s time to let go of the guilt and put your oxygen mask on first.
Watch for these warning signs of caregiver burnout
- Are you overwhelmed, anxious, or exhausted?
- Do you feel irritable, impatient, or resentful?
- Do you feel depressed, powerless, or hopeless?
- Do you have headaches, pain, or other physical problems?
- Are you having trouble sleeping or not getting enough sleep?
- Are you skipping showers or other hygiene tasks?
- Have you lost interest in the activities you used to enjoy?
- Are you drinking, smoking, or eating more/less than you should?
- Are you withdrawing from friends, family, or others in your support network?
If you answered yes to one or more of these questions, this is normal. You are not alone. Even the toughest caregivers experience burnout at some point.
8 essential wellness tips for caregiver stress relief
Here are some ways to regain a sense of balance, hope, or joy in your life.
- Give yourself some grace.
Nobody said caregiving was easy. Give yourself permission to forgive your mistakes. Everyone has bad days. Everyone has lapses in judgement. If you catch yourself going down a spiral of negative thoughts, stop. Catch your breath. Think of one thing you did today that you are proud of.
- Figure out what self-care means to you.
Self-care means “me time.” It can be different things to different people. For some, it’s a bubble bath or a hot cup of tea. For others, it’s reading a book, playing video games, or watching episodes of their favorite show. Find 30 minutes each day to do an activity that helps you unwind.
- Take care of your physical and mental health.
Find ways to sleep better, move more, eat a healthy diet, and drink more water. Get the vaccines you need and regular health screenings. Tell your provider that you are a caregiver. Share any worries or symptoms you have. It might help to talk to a professional about your mental health. Find one here.
- Focus on what you can and can’t control.
Here are some things you can’t control: the past, the weather, the number of hours in a day, and other people’s actions. But there are things you do have control over – your attitude and how you respond to problems.
- Break chores down into small, simple steps.
If you feel overwhelmed or don’t know where to start, try making a to-do list. Then work through it one chore at a time. Break that chore down into small, manageable tasks. Instead of “clean the kitchen,” try “wash the dishes,” then “empty the trash,” then “sweep the floor.” Organize the list by what needs to be done now vs. what can wait until later.
- Celebrate small wins.
Small wins can be anything. You got out of bed this morning. You put your shoe on the correct foot. You made it through the day. The point is to retrain your mind to focus on the positive. Think about how caregiving has made you stronger. Think about how it brought you closer to the person you’re caring for.
- Build a support network.
Stay connected with friends and family who support you. Make time each week to leave your home for a social date. It can be a quick walk or coffee break. Consider joining a caregiver support group online or in person. They will know what you’re going through. They can cheer you on and help problem-solve.
- Don’t be afraid to ask for help.
Make a list of ways others can help you and divide up the tasks. Be flexible and let them choose how they want to help. Some ideas include giving rides to medical appointments, housecleaning, grocery shopping, or cooking meals.
