Vectra Voice

Caring for Our RA and the Others Who Need Us, Part 2

November 28, 2016

November marks National Family Caregiver’s Month. This month’s theme is “Take Care to Give Care.” For some caregivers, this theme has a deeper meaning, because, in addition to being caregivers, they also are RA patients. Last week we heard from Christy, who shared her perspective on being an RA patient with caregiving responsibilities. We conclude this special two-part post with Heather’s view.

I am a caregiver. I have been my whole life. It’s what I know and a role in which I feel comfortable. So it’s very important to me to manage my RA so that I am able to care for the people I love. I care for my mother, who has dementia and lives in an assisted living facility, and for my two school-aged children living at home. I also have a college-aged daughter.

I’ve had RA for more than 20 years and have been through all the therapies that are out there. My doctor uses the Vectra test to see where my baseline is and whether my treatment is working or not. I am grateful we can use the Vectra blood test to plot a long-term course and account for what I can’t see or feel. We look at the different panels that are included in the Vectra test score to see inflammation pathways. The Vectra test and the other rheumatoid arthritis tests that I take are part of a wide, very inclusive picture.

My RA challenges are often physical. For 17 years, I worked as a respiratory therapist in acute care at the hospital. That job was a great fit for me, but it was not a great fit for my body. In an eight-hour shift, I could easily put 6 – 8 miles in walking.

Toward the end of my time there, I worked two days a week but would be in bed for three. Finally, a good friend told me, “You need to make a decision: your kids or your job.” It was so hard to make that decision though I knew it was the right one. I had a period of grief.

One of the hardest things with a chronic disease, like RA, is accepting that you’re not superhuman, saying no and prioritizing yourself. If you can take care of yourself, then you can take care of others. You end up feeling better about yourself because you can do things.

Through my years with RA, I’ve learned – sometimes through trial and error – how to take care of myself so that I can care for my loved ones. I’m happy to share them with you:

  • Access your support network: My partner, Nathaniel, and I work as a team to keep the household running. He also helps me help my mother, like when he picks up my mom’s laundry so that I can wash it. We hire someone to clean for my mom. My brother and I share her guardianship, and my sister-in-law sets up her medication for the week.
  • Know your limits: I now work part-time for a housing non-profit. I work every other day and manage my hours so that I can take a nap each afternoon. If I don’t rest, I’m not able to help my family in the evenings. On my off days, I plan only one doctor’s visit for myself and one for my mother. The unexpected always happens, and I’m better able to deal with it if I haven’t already used up all my energy.
  • Take it easy: I order my mother’s clothes online. I cook with pre-cut veggies. I use paper plates when I’m tired. I feel okay about it because we eat at home, and we eat together.
  • Stay in the mix: I do what I am able. If I plan the dinner, I have contributed even if others are cooking. In our family, I make menus and grocery lists, keep calendars and organize details. Nathaniel shops and runs errands.
  • Take a long-term outlook: Some days as soon as I try to get out of bed, I know that things are going to be rough. Other days I wake up and know that I feel pretty decent. I try to take the long view of how the week overall has gone.
  • Use the gifts wisely: On the days that I do have extra energy, I choose how I’ll use it to be more present with my family. I might go to my son’s cross-country race instead of just picking him up when it’s finished. Or I might do pottery with my other son. Being able to share those experiences is a big thing for me.
  • Finally, I would add to get involved. I wasn’t able to find the resources I needed, so I chose to start and lead a local chapter for Arthritis Introspective.

For more information about National Family Caregiver’s Month and tips for caregivers, please visit this link: http://caregiveraction.org/national-family-caregivers-month