Caring for a Loved One With Rheumatoid Arthritis
Rheumatoid arthritis (RA) is a chronic autoimmune disorder that occurs when the immune system mistakenly attacks healthy tissue and other systems of the body. This causes painful swelling around the joints, which can damage cartilage leading to joint deformities and mobility challenges. In some cases, inflammation associated with RA can also impact the eyes, lungs, heart and other vital body systems. Early diagnosis and improved treatment have made severe joint deformities less common, but rheumatoid arthritis can still cause challenging physical disabilities.
Depending on the stage and severity of the disease, there may be periods of remission with no or few symptoms, followed by debilitating pain and inflammation during a flare. Living with RA can be unpredictable, frustrating and quite painful which can impact many aspects of a person’s life. Research shows that supportive caregivers can make a big difference in the quality of life for people living with RA. If someone you love is dealing with the physical and emotional challenges of this disease, here are some tips that may be helpful.
RA is sometimes described as an invisible condition because you can’t always see the inflammation, pain, fatigue or mental health effects. Learn as much as you can about the disease so you can appreciate what your loved one is going through and recognize when extra support is needed. Because it can be difficult to predict symptoms, understand that your loved one will have good and bad days and that their needs and abilities will fluctuate over time. This awareness and understanding will help you to cope and to be a more compassionate caregiver.
Despite the variability of symptoms, many well-meaning caregivers try to step in and take over most daily tasks. This can create conflict and negatively impact your loved one’s self-esteem. Instead, have open conversations about what the person in your life is struggling with. Encourage different ways to do things, investigate assistive devices and suggest tasks or responsibilities that you could easily take on. Let your loved one know that you can stay flexible to encourage them to ask for help when they need it or take on more on the good days.
Help With Documentation
Write down your loved one’s changing symptoms, make note of when a flare-up or remission occurs and keep track if symptoms aren’t improving despite taking medications. Sharing this with a rheumatologist will help you find the right medication dosage and identify potential triggers. Keep an updated list of all the medications your loved one takes including any over-the-counter medicines and supplements. Bring this list to every appointment so your doctor can watch for possible interactions. Also, write down any questions as they come up to make sure they’re addressed. Medical appointments can go by quickly and can feel overwhelming and this may help. You may also want to try using a caregiver app. Some of these store doctors’ phone numbers, insurance information and prescriptions all in one place and can be helpful for medication reminders.
Support Movement and Rest
For people living with RA, certain physical activity has been shown to reduce inflammation and pain. Staying active will also help lower the risk of heart disease, which is the number one cause of death for RA patients. Always speak to a doctor, but low-impact exercises like tai-chi, swimming, yoga and walking can strengthen muscles and improve cardiovascular health without joint strain. Encourage your loved one with RA to exercise by getting active together. Go for walks, livestream a fitness class at home, or sign up for a class in the community or at a gym. Just recognize that during a flare or on particularly painful days, rest will be just as important as exercise to reduce inflammation and help fight fatigue.
Stay Nourished Together
People living with RA have a higher risk of developing osteoporosis and the inflammatory effects of RA can spread to internal organs including your heart and lungs. Along with physical activity, a nourishing diet can reduce the risk of additional diseases and help maintain a healthy body weight to limit joint strain. You should always speak to a registered dietitian, but RA patients are usually recommended to eat a nourishing diet that is low in saturated fat and salt and high in calcium, vitamin D, complex carbohydrates (whole grains, beans, fruits and vegetables) and omega-3 fatty acids. As a caregiver, it can be so beneficial to meal plan and support healthy eating choices together.
Watch for Concerning Signs
It is common for people living with a chronic and debilitating illness to experience prolonged stress, anger and fear that can lead to depression and other mental illnesses. If your loved one has become increasingly isolated, is sleeping too much or too little, is experiencing hopelessness or deep sadness or has lost interest in the activities they previously enjoyed, they may have a mental health condition. Depression can also affect how a person copes with pain and other physical symptoms of a chronic disease. It can be helpful for those managing a chronic illness to talk to a mental health professional even if you haven’t seen concerning signs or symptoms.
Take Care of Yourself
Being a RA caregiver is a very demanding role, so your physical and mental health should be as much a priority as your caregiving duties. Look into respite care—either from family, friends or professional carers—to give you a much-needed break from your daily demands. Keep healthy snacks on hand, exercise regularly, find positive ways to cope with stress and try to do more of the things you enjoy. You may also find that sharing your experiences with other people in a similar situation can help you feel better supported and less alone. Look for online or in-person support groups, ideally for people caring for loved ones with RA or other chronic illnesses.
If you are looking for extra support for your loved one living with rheumatoid arthritis, VHA Home HealthCare may be able to help. Contact VHA’s private services team at (416) 489-2500 ext. 4649 or by email at firstname.lastname@example.org for more information.