The FAQs of COPD Caregiving: Part 1

No two ways around it -- COPD caregiving can be challenging and sometimes thankless. However, it can also be rewarding, if approached with the right mindset. Are you a new COPD caregiver? Or maybe you've been at it a while, but it's become frustrating, exhausting or emotionally draining? I get it; I was my mother's primary caregiver for the last four years of her life. I've lived that role!

Whether you are brand new to the caregiver role or an experienced caregiver for a loved one with COPD, this series on the facts (or FAQs) of COPD caregiving may be useful to you. FAQ = Frequently Asked (and Answered) Questions.

There are 2 parts to this series. First, let's look at how you cope with the impact of caregiving on you.

1. Why is caregiving so hard?

The first thing to remember is that caregiving is hard for most of us. Sure, a few people are born caregivers who live to serve others. But most caregivers add caregiving to an already busy life filled with many other roles, such as spouse, parent, employee and so on. It's not unusual to feel sad, frustrated and stressed when caregiving impinges on your personal, work, and leisure time.

In addition, it can be so hard to watch someone you love struggle with their health, and even to breathe. It can be hard to watch them lose their independence and sense of well being. And as the years go on and their disease progresses, it can be hard to be a witness to their end of life too.

Advice: Acknowledge all the feelings. Whatever you're feeling, it's valid. Take care of yourself and focus on maintaining your quality of life. When you feel better, it's easier to help your loved one feel better too.

2. How do I fit caregiving into my already busy life?

I'll just tell you -- it's not easy, but it can be done. There are different levels of caregiving, of course. Perhaps your loved one is still fairly independent but just needs help with shopping, cleaning and running errands. Those tasks may be easier to fit into your other responsibilities.

But what if your loved one has to come to live with you or you need to move in with him or her? When I began caring for my mom, she moved in with me and my husband. I was working from home at the time and it wasn't too hard for me to squeeze in my caregiving duties around my flexible work schedule. Until she went on a blood thinner and I had to run to the pharmacy daily as the dose kept getting adjusted! Thankfully, that only lasted for about a week.

Advice: It can be difficult for one person to do it all when the going gets rough and the needs grow large. So don't be afraid to ask for help. Enlist the support of family, friends, neighbors, and perhaps even your church community. If those types of resources don't exist for you, then consult with a local social service agency or office of senior services to find help. You can even call the C.O.P.D. Information Line (1-866-316-COPD) to help you find resources (from the COPD Foundation).

3. How will I know if caregiving is too stressful for me?

Stress when acting as a caregiver is not uncommon, and it's certainly nothing to be ashamed of. While you may have taken on responsibilities as a caregiver, you also have a responsibility to yourself and the right to practice ongoing self-care. Here are a few signs of extreme stress to be aware of:

• Feeling extremely sad or experiencing mood swings
• Crying more often than is usual for you
• Having a low energy level
• Feeling isolated from family/friends or guilty if you take any time for yourself
• Having trouble going to sleep or staying asleep or waking up in the morning
• Not feeling like eating or using food to cope with your emotions
• Experiencing feelings of undue anger at the person you are caring for, at other people, or situations

Advice: If you start to notice one or more of these symptoms, it's time to take stock of where you are. Next, take concrete steps to lessen your stress. Remember, if you're not coping well with your life or the demands upon your time, then you're going to be less able to be an effective caregiver.

4. So what should I do if I am feeling overwhelmed or overly stressed?

It's easy to feel overwhelmed when you're caring for someone else. Sometimes, the stress is emotional, while other times it might be a physical burden. Or, it could be a combination of both.

Advice: The key, as mentioned above, is to examine where you are today. What is really going on, and what steps can you take to make the burden easier or more bearable?

• You might need to take a step back and ask someone else to assume the COPD caregiver role for a few days or even a few weeks.
• Sometimes, you just need to vent your feelings. You could talk with the person you're caring for, a friend or family member or your clergy or a trained counselor.
• Take time to do something for yourself. Perhaps a day at the spa, at the movies, or even at the gym, is in order. Pamper yourself, you deserve it!
• Ask others for help. You do not have to do it all yourself! Knowing when to ask for help is a sign of strength.

5. What If Those Stress Relievers Are Not Enough?

Day to day, taking time for yourself and self-care can go a long way toward relieving your stress and strengthening your coping, both physically and emotionally. But when the need to provide caregiving goes on for years or the demands increase, particularly as the disease progresses, those measures may not be enough. What then?

Advice: When things just become too much to bear, you may need to look into respite care. Respite care allows you some time off. It could be intermittent, as in a few hours a day once or twice a week, or it could be for a few weeks at a time.

If you're looking for regular, intermittent respite care, Adult Day Care might be the answer. Talk with your loved one's doctor or your local Office on aging or senior center to find out what is available in your community. Adult day care can be a fun experience for the person with COPD too, and a chance to get out of the house and socialize.

If day care is not available or feasible, perhaps you can hire someone to come into the home for a few hours a day or week to help out. Insurance may cover a home health aide or you can hire someone privately.

Once your loved one reaches the end stage of COPD, hospice care may become an option. Hospice is covered by Medicare, generally when the prognosis is 6 months or less and the person is ready to forego hospitalization and life-saving measures (such as resuscitation). Respite care is one of the covered services under hospice and can be helpful both to the caregiver and the person with COPD.

In Summary

We've covered some of the caregiving issues that have to do specifically with you and your ability to cope on a long-term basis with the caregiver role. In the second part of our series, we'll take a look more specifically at your role as caregiver and some of the questions that come up with your responsibilities around that role.