When a Loved One Has RA: Tips for Caregivers

Caregiving for a loved one with rheumatoid arthritis (RA) can be a 24/7 job. That’s stressful! You may often feel sad, lose sleep, or get headaches. Nobody can do it all, even you. Set limits for what you can manage and still take care of yourself. Hate to say no out of guilt? Practice saying it in front of your mirror. Focus on what you can do. If something seems like too much, ask for help.

People with RA often take multiple drugs. Keep a list of all over-the-counter and prescription treatments your loved one takes. Vitamins, too! Bring it to every appointment so the doctor can keep an eye out for interactions. Jot down when drugs need to be refilled, or set phone alerts. Write down what each medicine is for and instructions for when to use it.    

Caregiving can lead to burnout if you do too much. Take a break from time to time. See if your loved one’s insurance covers a home health aide. These pros can come to your house to help prepare meals, offer rides, or do small chores. Volunteers in many towns offer these services at no charge. Treat yourself to lunch out with friends, a movie, or a long walk.

Doctor’s appointments often seem too short to get the answers you need. Make a list of what you want to ask before you leave the house. Need to know about sex, drug costs, or if it’s OK to make a baby on methotrexate? Don’t be embarrassed! Your doctor has heard it all before. Nurses can also be a great resource. They may have more time to listen to your concerns.

Life with RA is hard to predict. Make an emergency plan so you’ll know what to do if a scary symptom or drug side effect crops up. Storms or snow could make it hard to get to the doctor’s office or hospital for urgent care. If you can, keep back-up supplies of drugs on hand. If biologics need to stay chilled, call your power company in an outage or buy a generator.

Caregiving is hard work. You need to stay healthy and keep your energy levels high. Keep healthy snacks on hand, like fruit or nuts. They’ll be a better boost than a candy bar from a hospital vending machine or fast-food coffee. Exercise can ease stress and help you sleep better. Even a 30-minute walk on most days will do the trick and keep you healthy, too.

Care for your relationship, too. Talk openly with your loved one about guilt, anger, or fears about RA. Make sure you feel like equals, not just the “sick one” and the caregiver. If it’s a spouse or partner, sex can help you stay connected and relax. If they have stiff joints or pain, enjoy a warm shower together before bed. Make time to be alone together and just talk.

New technology can help you stay organized. Keep doctors' phone numbers, insurance information, and prescriptions in one place, whether it’s a notebook or your smartphone. Use apps to remind you it’s time for your loved one to take medications.

If your doctor suggests a treatment or procedure that worries you, speak up. Ask for a referral to another specialist so you can weigh all your options. Find out what any procedure or drug will cost before you order it. Your doctor’s office or pharmacist should be able to ask your insurer what’s covered. Fewer surprises may mean less stress for you.

Reach out to your network of family members, close friends, or neighbors to help with some caregiving chores. Make a list of easy tasks someone else can take on once in a while: cook one meal a week, pick up a prescription, drive your daughter to dance class. If someone asks you how they can help, you’ll be ready to offer simple options and get much-needed relief.

You don’t just provide support, you need it from time to time, too! Explore local or online meet-ups of fellow caregivers. There are many people out there who are also caring for loved ones with RA or other chronic illnesses. Share your concerns, ask questions, or just vent. Some online forums let you post without using your name if you’d rather keep it private.

If you think your loved one may need a wheelchair at the clinic, airport, or hotel, call ahead and reserve one so it’s ready when you arrive. The Air Carrier Access Act requires airlines to offer assistance to people who need it, free of charge. If they're traveling alone, you can arrange help to get them through security, check luggage, or board and depart the airplane.

Caregivers, especially women, are at higher risk for depression. This isn’t just feeling down in the dumps. Depression can be harmful to your health. Signs may include crying often, drinking more alcohol than you used to, sleeping too much or too little, or body aches. If you think you’re depressed, seek help now. Talk to a therapist or psychologist about your feelings.

Biologic drugs for RA can raise the risk of serious infections. Even bugs from eating certain foods can trigger illness. Make sure your loved one doesn’t get dishes made with raw eggs or unpasteurized, soft cheeses. At the family cookout, heat up meat to a safe temperature before you serve it.

Keep your loved one’s RA drugs safe and secure. Put a lock on the medicine cabinet if there are children in the house. Kids may not realize colorful pills or liquids could be harmful. Teens may steal the drugs to see if they can get high or mix the pills with alcohol. Don’t toss old or unused drugs in the trash. Ask your pharmacist about safe disposal options.