You’re not alone – caregivers share their stories

Even when it’s a labor of love, caring for an aged, seriously ill or disabled friend or family member can be hard, and you may wonder whether anybody can understand what you’re going through. Actually, many people can relate to your situation—did you know nearly 66 million Americans serve as caregivers? It’s difficult to wrap your mind around a number that large, which is why we created Caregiver Stories.

Meet James Patterson. James became a caregiver to his wife on New Year’s Day 2005, after she was hospitalized with complications from chronic obstructive pulmonary disease (COPD). As with many others in his situation, he didn’t just wake up that day and choose to become a caregiver. “It’s a very long process, becoming a caregiver, and you never realize you’ve begun until you have a chance to reflect.”

According to James, being a caregiver is a big responsibility, one that can be isolating. “I think men, in particular, tend to think they can handle everything themselves and are not as comfortable asking for help,” he says. “That’s a mistake—it’s important to get help when you need it and have support structures in place.”

James suggests that caregivers take some time for themselves when and if they can. Two or 3 times a week, he has a caregiving helper come and stay with his wife for a few hours.

“These breaks are extremely important because I can get chores or errands done or go play a game of golf,” he explains. “As a caregiver, you can never really get away—you’re always there. But, if you can find time for something else and get away from your daily routine even for a short while, it can be very rejuvenating.”

Although the physical demands are great, he also notes the emotional weight that many caregivers carry. “A struggle I deal with as a caregiver is that you don’t always get a ‘thank you’ for your hard work because it becomes expected and part of the routine, which can sometimes make you frustrated or angry. However, my actions are just part of our way of our life, so ‘thank-yous’ aren’t needed or expected anymore, and when one comes along, it’s a really big deal.”

His “best advice” for new caregivers: “Be patient and be in it for the long haul. Get as much information as possible and know that people are there to support you.” James describes the resources at Ask Medicare and the National Institute on Aging as invaluable. “They cover everything from bathing to hygiene to incontinence. I’m learning something new every day. I can show the materials available to my wife and we can read them together so she can help me help her.”

If James’ story inspired you or gave you food for thought about your caregiver experience, then please consider sharing your best tips and lessons. Write about your experience and send a photo to caregiverstories@cms.hhs.gov–we may add your story to our website!