Well Meant Words
Now that you have become a caregiver, you will find that everyone has an opinion. Not only are you hearing these opinions, but your patient is hearing them as well.
It can be as simple as: "I heard that disease only effects smokers" "If your loved one would just start this diet, his/her breathing will get better" or "If he/she would just exercise more, it would be easier to breathe." The people who say these kinds of things mean well. It usually comes from someone trying to make nervous conversation. However, it ends up causing a certain amount of frustration.
Your loved one knows that if they will exercise, it will help. They know that excess weight keeps them from breathing well, and yes, they regret the years of smoking (IF they did) and not understanding exactly what it was doing to their lungs.
The fact is that no one truly grasps what is happening until you live through it.
Sometimes even in the thick of it, the caregivers have a hard time really understanding everything. There will be times that you will try to push, and you will be met with tears or fighting. It is important to understand that as much as you want to believe that you understand what your loved one is going through, you really don't.
I remember one time in particular that my mom's general physician recommended that she take a hot shower and allow the steam to relieve the horrible cough that she had developed. I remember the look on her face as she told me about this. He was a very caring doctor. We both appreciated his care through the years, but this time, he did not have a handle on her situation specifically. At that time, she had to take warm (not hot) showers because the steam of a shower would send her over the top. She felt as if she were smothering, and the cough would become worse.
The best thing to do is to remember that statements made by others are often times meant to encourage and offer a new way of looking at the situation. Sometimes it may seem as if they are not listening to the situation, and if they are, you may think that they don't care. It is best to try to think the best of others, until you are proven wrong. It just comes down to the fact that they don't understand.
Remember that even other COPD patients may not totally understand.
With COPD patients in different stages and with different combinations of medications and conditions it could make it very difficult to truly understand what each individual is going through. My mom was dealing with so many things: COPD, asthma, severe anemia, and horrible skin tears. There were other things as well, but those were the things that she had to deal with the most. It was her set of conditions that gave her the symptoms that she dealt with, just as a different set of conditions may give someone else more or less symptoms.
Just remember, the nice lady at your church that has never even heard of COPD and tries to tell you that your loved one needs to spend time with people outside in the fresh air, has no idea that being outside is one of your patient’s worst triggers. The man at the check out in the grocery store that tries to tell you to that your loved one needs to lose 25 lbs because he is breathing better now that he has lost the weight, doesn’t know that your patient has already lost 30, and breathing is still difficult. The point is that you, as the caregiver can be the filter and the diffuser in these situations. It is up to you to remind your patient that most of the comments are well-meaning, and it is up to you to gently explain the basics of COPD to help some of the people understand. We have all stuck our foot in our mouths at least once, and in most cases, it is seasoned with regret for something that has been said. Extend a little grace to each other.
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