Tips for Helping Your Caregiver Help You With Your COPD
When you have COPD, life can be challenging at times. Having a caregiver can help when times get tough. However, a truly effective caregiver needs to understand how COPD affects you and how to best assist you. There are so many ways to improve COPD awareness in the community, but why not start by increasing awareness at home? One way you can help is to make your caregiver more aware of your particular COPD needs. Here are a few tips to help along those lines.
Share information with your caregiver
Share your experience and expertise with your disease. Every chronic illness, COPD included, has both unique and common features. Start by helping your caregivers understand what COPD is, what symptoms to expect to see, and common treatment methods. The National Heart Lung and Blood Institute, a division of the National Institutes of Health, has a number of helpful publications for both you and your caregivers.2
You might also invite your caregivers to accompany you on any physician office visits. This can give them an opportunity to get answers to any questions they might have from a health care professional.
But everybody is different, and your experience with COPD may vary greatly (or slightly) from someone else's experience. So, help your caregiver understand you by sharing the specifics of how COPD affects your everyday life.
- What symptoms are unique to you?
- What are your challenges?
- What helps and what doesn't?
Make your caregiver part of your healthcare team
You are not a victim of your disease. Instead, think of yourself as a proactive and essential warrior in fighting your COPD in search of your best life possible. Dealing with a chronic disease successfully, though, should be a team effort. This team includes all the members of your health care group, including your physician, his or her staff, a respiratory therapist, nutritionist, and possibly an oxygen supplier.
It also should include any personal caregivers involved in your life, whether that's a spouse, child, or even a friend or neighbor. As mentioned above, caregivers should be included in visits to the doctor. The more they know, the better they can help you!
Keep a written COPD care plan
Your COPD care plan might be complex. For a start, it might include:
- A meal plan
- Variety of oral and inhaled medications, given at various times and/or for various reasons
- Supplemental oxygen
- Breathing exercises
- Activity/rest plan
- Pulmonary rehabilitation
- Emergency action plan
So, communication about whichever of these items are pertinent to you is essential. One of the best ways to maintain this communication between you, your caregiver, and the rest of your health care team is by putting it all in writing. You might have an overall written plan developed with the help of your doctor. You might also keep a written journal. It's up to you. The important thing is to keep everyone on the same page as much as possible.
Talk about it
Earlier in this post, we emphasized the importance of helping your caregivers understand how COPD affects you. But, if you really want them to be the best caregivers for you that they can be, then you need to be open and honest in sharing how you want them to help you.
It's not always easy to accept help, especially if you've been independent all your life. But when you can admit you need help, the quality of your life with COPD can be much easier and happier. Some caregivers might want to do too much for you. That can make you feel disempowered. On the other hand, caregivers can sometimes be afraid to offend you by trying to do more than you want them to.
The solution to these dilemmas is to just talk about it. Tell them what you need and what you don't. Suggest how they can best be of assistance to you, while still empowering you to do all that you can on your own.
Caregiving can be complex. Sometimes you may need help with household chores or errands. Other times you might need help with your daily living activities, such as meal preparation, personal hygiene, etc. And then there may be times when all you need is emotional support to cope with the blues, frustration over symptoms, or other challenges.
One final note
Each person's journey through COPD is different. You might live years with mild disease, or you might have a faster, more severe progression; or you might have a combination of those two.
Eventually, though, anyone with a chronic illness faces the end of life decisions. This could be decades away for you, or it might be only months. When you do get closer to that stage, it's important to discuss what you want with your caregivers, from a medical standpoint. Think about making a living will (also known as an advance directive), where you can specify exactly how aggressive you want treatment to continue to be if your condition worsens.3
These conversations can be uncomfortable. But talking about it with your loved ones now helps make sure that your wishes will be carried out in the future, when you may no longer be able to communicate.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to COPD?