Each year in November, COPD Awareness Month and National Family Caregivers Month are nationally recognized. COPD, or chronic obstructive pulmonary disease, is a term used to describe progressive lung diseases (including emphysema and chronic bronchitis, among others) that make it difficult to breathe. Nearly 16 million Americans have been diagnosed with COPD, and because it is incurable and progressive in nature, it takes more than the right treatment to keep a patient feeling well. Caring for someone with a chronic condition is about both their physical and emotional well-being. It takes a caregiver.
To shed light on what it’s like to be a caregiver for a loved one with COPD, we sat down with Amy Jenner, Vice President, Commercial Operations at AstraZeneca, to learn about her important role outside of the office – a caregiver to her mother, Jane.
Could you describe what it was like for you when you first learned your mother had COPD?
My mother had so selflessly cared for her family all her life, including myself and my three siblings, as well as my father who had struggled with Alzheimer’s disease in his final years. When I learned she had COPD, I desperately wanted to return the favor – to show her the strength and support she’d always shown me. But it was difficult to know how to help, or even how much help she wanted.
When your parent has an incurable, chronic disease, it is overwhelming. The love you have for your parents is so profound. You hold onto the hope that, if you can push through, the right treatment will come along. That's what innovative medicine is all about, and that’s what inspires me to get up in the morning and do what I do.
How would you describe your role as a caregiver?
When people hear the word caregiver, I think they often envision someone playing a role like that of a nurse. But for me, particularly since my mother is still able to live a relatively independent life, it’s about more than just her physical ailments. It’s about providing support, hope, a connection. It’s hard to describe, it's all very personal. Being a caregiver is about surrounding someone with the comfort they need and giving them the confidence to persevere through the hard times so that they can enjoy the good times. It’s intervening when the person who is ill cannot do it on their own.
I also believe that caregiving is a community effort. One can be a caregiver in many ways. My mother lives on her own in Florida for most of the year, but stays with me further north during the summers due to the Red Tide - this is an annual phenomenon whereby algae blooms release toxins that can be detrimental to the health of those with COPD. I consider the security guard at my mother’s building in Florida a caregiver because he offers to walk her dog on the days she is too unwell to do so herself. It’s the large and small gestures together that make a true difference.
How has being your mother’s caregiver affected your relationship?
Being a caregiver is extremely fulfilling. I love my mother more than anything in the world. I want the best for her because she always wanted the best for me, and returning the favor is a blessing and an honor. I won’t deny it comes with its challenges, for both of us. She has her own life and doesn’t want to be a burden, and she may find me to be overly attentive and worrisome at times. But I’m incredibly fortunate to have such a close relationship with her and I believe we’ve grown closer in many ways since her diagnosis.
What advice would you give to others caring for loved ones with COPD?
An estimated 12-15 million people in the U.S. have COPD and don’t even know it. So, my first bit of advice is to be aware of the signs and symptoms of COPD, including breathlessness, chronic coughing, and wheezing. If you have a loved one experiencing these symptoms, encourage them to talk to their doctor.
If you’re caring for a loved one that has already been diagnosed with COPD, I would stress the importance of finding a good pulmonologist; one that can connect with your loved one on a personal level, take the time to educate them and truly become part of their support system.
Lastly, I have learned through this experience that our instincts as caregivers are powerful and generally right. Loved ones suffering from a chronic disease don’t always articulate if their symptoms are worsening, or they simply don’t want to complain. When you have an intuition, act on it!
For additional information and resources for those living with COPD and their caregivers, visit the Save Your Breath page on Facebook.