Hard Truths of Chronically Caregiving

What happens when you wear both hats?

As many of us know, someone has to be on the receiving end of caregiving, like many of us living with rheumatoid arthritis (RA) or other chronic illnesses. Our friends and family show up to help us in moments of need, such as during a flare.

Undoubtedly, the support makes a challenging situation easier. However, what happens when you wear both hats?

The care receiver becomes the caregiver as well. A delicate balance of accepting help and providing help to another is put into motion. These hard truths tend to weigh heavily on the scales when you are caregiving and need care yourself.

Time is of the essence

Bottom line: 24 hours in a single day never feels like enough time when you’re acting as a caregiver-patient duo. Between providing help for your loved one and managing the complexities of your own care and medical appointments, time runs out.

I often feel like I have to make a choice: make dinner for my loved one or call to schedule my own followup appointment. It’s one or the other — but never both. It’s a continuous balance of doing what is priority, asking others to help lighten the load, and making sure you keep your own well-being in mind.

Emotional spoons are finite

The popular "Spoon Theory" explains how each person wakes up with a finite set of spoons. Everyday activities, like taking a shower, cost a certain amount of spoons.¹

For people with chronic illnesses like RA, simple tasks can cost more spoons, and your supply of spoons runs out more quickly. The emotional cost of caregiving can also be viewed through a "Spoon Theory" lens.

Spotting the signs of caregiver burnout

Seeing a loved one in pain, having a difficult conversation, or navigating a stressful doctor visit all cost "emotional spoons." There comes a point when the emotional drain of caregiving has its limits and can lead to burnout.

Signs of caregiver burnout include:²

• Feeling sad, angry, or overwhelmed
• Fatigue
• Sleeping too much or not enough
• Gaining or losing weight
• Losing interest in things you once loved
• Having physical pain like headaches
• Abusing alcohol or drugs
• Missing your own medical appointments

For someone with RA, an increase in fatigue, joint pain, stiffness, or swelling may be a signal that burnout is on the rise. Closely monitoring your own emotional state while caregiving should be made a priority to keep yourself healthy.

Taking breaks is necessary

The most unhealthy mistake a caregiver can make is to think that they can never take a break from their caregiving duties. Practicing self-care and taking respite from the often draining duties of caring for someone else is vital to your well-being, both physically and emotionally.

There may be a lot of guilt associated with taking time to yourself. But the truth is, as the saying goes, you can’t pour from an empty cup. Sometimes even a small break, such as taking a walk outside or meeting to have lunch with a friend, is exactly what you need. It’s a good idea to reach out to the patient’s doctors or social worker for local organizations that can help offer respite care for caregivers in your area. Take care of yourself, too!

Are you a caregiver with RA? How do you manage both roles? Share in the comments below!