The Emotional Challenges of Being a COPD Caregiver

Whoever says being a caregiver for someone with COPD is easy doesn't know what they're talking about. I speak from experience. I was thrust into the caregiving role quite unexpectedly for my mother in the latter stages of her life. And it was not always easy.

My journey as a caregiver

At the end of 2006, my mom finally quit smoking for the last time, because she needed to go on supplemental oxygen. It was a battle she'd been fighting for years, even after watching my dad pass away from respiratory failure because he refused to quit smoking or even get treatment for his COPD. She could no longer deny the need, but at that point her health was still fairly stable.

However, that all changed a few months later, when she got a puppy and was spending time out in the February cold during winter. Her health began to decline. By the end of 2007, she'd been hospitalized 5 times in 10 months for 2 broken hips (at different times) and a few COPD flares. It was a difficult year and it became apparent that she'd need more help on a daily basis.

Luckily, in the summer of that year, we had moved to the area she was living in so that my husband could take a teaching job. After her 4th hospitalization, we moved her in with us in our new home. She had to give up her own "showcase" home that she loved, which was a difficult transition. However she was grateful to have my help and I was thankful to be able to be there for her.

Caregiving role reversal

When a child takes over caregiving responsibilities for a parent, there is a role reversal that must happen. That's not always easy for either side to accept and adapt to. I know it wasn't for us. My mom was used to being in charge, and I was used to deferring to her. So that had to be worked through, because I needed to take more of a leadership role. And she needed to give up some aspects of her independence, though not all of course.

Open, honest communication is essential when making these types of transitions.  You can work through it successfully; we did.

Caregiving takes an emotional toll

Caregiving can be stressful, for many reasons. First of all, it's hard to watch someone you love struggle every day to breathe. As a daughter, it was hard to watch my mom have to leave the home she loved to live in one small bedroom in my home. It was also hard to watch her health deteriorate over the 4 years I cared for her. Thankfully, during about 18 months of those 4 years, her health was actually quite stable.

It's also stressful for the caregiver to have to adjust their lifestyle to accommodate their loved one with COPD. I was fortunate to have a career that I worked from home, but caregiving duties such as running to the pharmacy or going to doctor visits did cut into my productive daytime hours. So I often had to make up the time late at night after Mom went to bed.

I also had to adjust to having my mom living in my space. I am definitely not the dedicated homemaker my mom was, so that sometimes created some conflict. There were other generational differences too that we had to work through.

Anger, frustration and guilt are OK

Caregivers can often run through a gamut of emotions, and that's all right. There are many reasons why you might be angry:

• You might be angry that your loved one didn't give up smoking soon enough
• It might be hard to deal with your loved one's own emotional turmoil that can accompany chronic illness
• Perhaps you resent your own loss of freedom

Not all of these feelings might be totally justified, but feelings are feelings and should be recognized.

Frustration is another aspect of anger, annoyance and resentment. You might be frustrated that you can't do more to help your loved one feel better or get better. Feelings of overwhelm are also common. They sure were with me.

And then there's guilt. Let me count the ways you can get sucked into guilt feelings.

• You should have helped them take on a healthier lifestyle sooner
• You have no right to be angry or frustrated--look at what s/he is dealing with just trying to breathe
• There aren't enough hours in the day to get it all done

All of these feelings are valid. They may ebb and flow. The fact that your loved one has COPD doesn't mean you're not allowed to struggle too.

Anxiety and depression are more serious

Anxiety and depression are well known complications of chronic illness, including COPD.¹ But here's the thing--caregivers can also suffer from anxiety and depression.²

It's important to address these feelings if they come up, because you will not be able function effectively as a caregiver if you don't. Be sure to talk with your own doctor about medication or counseling. Both can be extremely helpful and enable you to continue to thrive in the caregiving role.

Tips to help you cope

First of all, acknowledge how you're feeling! It's OK to feel however you are feeling. Caregiving can be extremely rewarding, but there's no question that it's also tough at times.

Also, take care of yourself. Focus on your own healthy lifestyle. Eat right, get exercise, get plenty of sleep. Don't self medicate with alcohol or other drugs.

Take time off. No one can be a successful caregiver 24 hours a day. When my mom came home from the hospital on a CPAP machine and needing continuous care, that was one of the things that terrified me most. When would I get a break? As it turned out, she passed away the next night, so I never got to find out. But we all need time off to ourselves. So, if you can arrange for a back-up caregiver, even if just for a few hours. If you can get a few days off, even better.

In Summary

The focus of this article is the emotional toll that caregiving takes, but in no way am I missing how rewarding caregiving can be too. I am so thankful I got those last 4 years with my mom. We had many good times, when we relived memories of happier times together or laughed over silly stuff. She and her puppy became beloved parts of our household and family. It was a wonderful time and I was sad to see it end so soon. So treasure the good moments when you can, but also accept that not all time are good times. And that's OK.

I'd love to hear from other caregivers in the comments. What do you struggle with emotionally? What have you found that helps?