On Becoming a COPD Caregiver - My Story
It's a fact... living with COPD isn't a fun experience, no matter how hard you work to maintain your quality of life. But I'm here to tell you that being a caregiver for someone who is learning to live with COPD isn't much fun either. I'm not here to whine about having to care for my poor, fragile mother, nor to rail against the life I thought I'd be living in my golden years.
I don't want my readers who have COPD to think, "Gee, she's pretty self-centered, isn't she?" But I do think it's important to recognize that COPD doesn't only affect the person with the diagnosis. Like most chronic conditions, it affects the whole family. And as the disease progresses, the demands and the stress on the caregiver increase accordingly. That's a dangerous situation, because if the caregiver folds, the COPDer won't get the support they need. And that can spell disaster.
But, let me step back a bit and tell you my story...
I grew up with four smokers; two were my parents, the other two being my mom's mom and my grandmother's sister (my great aunt). They'd all been smoking since they were teenagers. At some point in their elder years, both my great aunt and my grandma quit smoking cold turkey, without any real problem, and never slipped off the wagon even once, to my knowledge.
My mom and dad, however, waged repeated battles to quit smoking, to no avail. In his 60s, my father developed a frequent hacking cough and became visibly winded whenever he exerted himself. He claimed it was "just allergies," but to me (being an RN), it seemed clear he had COPD. It was his choice, though, to shield his family from reality right up until the week he died. He never received treatment for COPD, never stopped smoking, and never went on oxygen. I'm sure he knew he had COPD, but he never admitted to it openly.
When Dad died, I begged my mom to quit smoking, and she did, for a bit, but then went back to it once again. Fortunately, she found love for the second time a year or two later and her new husband was a reformed smoker who influenced her to quit, we hoped, for good. Turned out it lasted about 2 years, but when her marriage floundered, so did her nonsmoking resolve. Before long, she was nearly chain smoking.
Mom continued to smoke right up until she got her diagnosis of COPD, about 3 years ago, and was forced to go on oxygen. Then, finally, she declared she was ready to stop smoking. Not that she had much choice.
As a nurse, a daughter and a caregiver, it's been extremely hard to watch my mother self destruct through the years. I've felt fear, anger, guilt and helplessness, as I've seen her health steadily deteriorate to the point where she looks, acts, and feels far older than her chronological age. The toll on her, not only physically, but also mentally, emotionally and spiritually, has been steep.
When I moved west 3 years ago from southern NJ, my partner and I left behind 4 children who had all grown up and flown the nest, expecting to be in the prime of our lives and planning to live out our dreams of an outdoor-oriented life in the mountains, unencumbered by anything other than our own spontaneity. Unfortunately, life did not work out quite the way we'd envisioned.
Two years ago, my mom's health took a nosedive, starting with a bout of pneumonia, progressing through 2 broken femurs and a stay in critical care that almost resulted in her death - 5 hospitalizations in 10 months! But miraculously, she emerged on the other side of that horrendous period feeling remarkably strong and healthy, despite her COPD. However, she was no longer able to live safely on her own and came to live in our brand new, too small home. The plan that we'd each retain our own places, with me visiting her twice a day and cooking her dinner no longer seemed realistic.
So, that stimulated the dawning of a whole new era in our mother-daughter relationship, in many ways a complete reversal of roles, that has been a big adjustment for both of us. The role of a caregiver is often a thankless one. The person being cared for is both grateful and resentful at the same time. The caregiver experiences many of the same ambivalent feelings, as you feel your freedom slipping away, but are thankful for the chance to spend some precious last years with your loved one.
It's a situation very few of us plan for or embrace willingly, but one that many of us in the sandwich generation end up in, whether we want to or not. In the coming months, I plan to share deeper glimpses into my perspective on being a caregiver for someon with COPD. I hope it will be an opportunity for other COPD caregivers to come together in support and understanding. And perhaps it will also open the doors of communication
with those whom we love and care for.
In this series:
COPD Caregiver Perspectives I -- My Story