When you take care of someone with moderate to severe COPD, you may find that the word "caregiver" doesn't come close to summing up everything you do.
"I think of myself as my mother's guard dog," says Cheri Cavaleri. She quit her job in 2014, moved to Arizona, and became full-time caregiver to her 90-year-old mother with COPD (chronic obstructive pulmonary disease). She doesn't just help out with cooking and laundry. She talks to insurance companies, carts oxygen tanks, and keeps track of every single dose and doctor's appointment. It's not always easy, but it's rewarding, Cavaleri says.
Want to learn how to juggle all the tasks that go with caregiving? Follow some simple tips from folks who've been there: Plan ahead, stay organized, and get the support you need.
Be Prepared for Doctor Visits
"I see all sorts of people caring for loved ones with COPD -- spouses, siblings, adult children, and friends," says Meilan King Han, MD, a pulmonologist at the University of Michigan and a spokeswoman for the American Lung Association. "The most effective caregivers are the most engaged and organized. They almost play the role of managers."
Cavaleri always tries to go to appointments prepared. Her suggestions:
- Read up on COPD so you know about treatments before your visit.
- Write down your questions.
- Bring a list of the medicines your loved one uses.
- Ask the doctor to repeat anything you don't understand.
- Take notes, and ask the doctor to spell words you don't know.
- If the doctor gives you a summary of the visit, keep it for your own files.
Keep Track of Medications
If your loved one has COPD, he probably needs a lot of treatments -- inhalers, pills, and more. Cavaleri keeps herself organized. She sets out a week's worth of doses at a time and labels them clearly.
You can also check the counters on inhalers and keep track of medication refill schedules, Han says. It's a good way to make sure your loved one is remembering to take his medicine.
Don't forget that you can't do this all on your own. Get other friends and family to pitch in so you get time off. You can also contact your local Area Agency on Aging at 800-677-1116 to learn about resources in your area.
It's helpful to join a support group to learn from other caregivers. "Look for a group that's solution-focused and positive, so it's not just people complaining," Cavaleri says. "You'll feel much less alone and get useful advice. Afterwards, I leave the room feeling lighter than when I went in."
Make the Home Safe and Smoke-Free
If your loved one uses a walker or has trouble getting around, remove anything he could trip on, like cords and throw rugs. You also need to keep your loved one's air clean and smoke-free, which can be a challenge, Han says.
"Families tend to have the same smoking habits," Han says. "So even if the person with COPD isn't smoking anymore, they may be living in a home where family members still are." Talk honestly with your family about why it's important to keep tobacco smoke out of the house.
Watch for Signs of a Flare-Up
Cavaleri says that COPD can be hard to predict. "Most days, my mother is doing great," she says, "and then some days -- boom -- she's not." Caregivers need to be ready and know the signs of a flare-up. For instance, you may notice that your loved one:
- Wheezes more
- Gets increasingly short of breath
- Coughs more than usual
- Has more mucus, or it has a change in color
If you're not sure about your loved one's symptoms, call the doctor. If he's having a flare-up, Han says, the sooner you can get him treatment, the less likely he'll end up in the hospital.
Take Advantage of Pulmonary Rehabilitation Programs
Cavaleri agrees. After getting out of the hospital, her mother refused to go to rehab. Soon after, she was back in the hospital with complications. "I didn't have the guts to insist that she go to rehab, but we learned our lesson," she says.
Come Up With a Plan
"People with COPD can live a really long time," Han says. That's great -- and it's a sign of how well treatment works. But it also means that if you don't have a clear plan, your "short-term" job as caregiver could actually last years and years, Han says.
"I am so, so grateful that my mom is still alive," Cavaleri says. "But honestly, I didn't expect to be doing this more than 2 years later." She says all caregivers need to come up with a realistic plan for their lives.
Cavaleri is now getting ready for the next stage of her and her mother's lives. She's preparing to move back home to Wisconsin with her mother, set up a different type of care, and go back to work. But while Cavaleri knows that her role as a full-time caregiver is ending, she has no regrets about the choice she made.
"What I've been able to do, taking care of my mom, is priceless," she says. "That's what I want people to know. You will be frustrated sometimes, but you'll be so grateful for the time that you have together."