Basics For Caregivers: Terminology
What exactly is a caregiver? A caregiver is defined by the Merriam-Webster Medical Dictionary as “a person who provides direct care (as for children, elderly people, or the chronically ill).”
Adapting to your role as a caregiver
If you are just starting your journey with the patient, it is hard to see the depth of the caregiver job. It can become quite overwhelming medically, but it can be incredibly rewarding, knowing that you are helping someone live life as fully as possible.
One thing that will help you communicate and care for your patient most is understanding the vocabulary. You will be constantly learning new things as you progress, but getting a grasp on a couple of basic things will help you in the beginning.
Learning the ins and outs of COPD
If someone asks you what COPD is, you should be able to explain it. I don’t mean the in depth, medical response. I mean the basics. You could respond something like this: "COPD stands for Chronic Obstructive Pulmonary Disease. It is a disease that makes breathing increasingly harder for my (wife, mom, husband, child, etc.). Just as the name says, it is chronic and it gets in the way of the flow of air. It means that my ‘patient’ will begin having a hard time doing the things that we are used to doing, and we would appreciate your understanding if we cannot join you as usual."
This knowledge will help with caregiving
Once you are able to explain it to others, you are closer to understanding the limitations for the one that you are caring for, but let me be very clear. You will never truly understand what they are going through, and deep down they don’t want you to ever fully know what it is like.
Get familiar with COPD terminology
You will also need a decent understanding of some of the basic words related to COPD. Here are just a few of the basics from the Living Life to the Fullest with COPD booklet that many doctors give to patients.1
Commonly used terms in a COPD diagnosis
Spirometry - This is a pulmonary function test that will provide measurements for the amount and how fast you can exhale.
Exacerbation - An exacerbation is time of worsening symptoms. This may be caused by any number of things: infections, colds, flu, etc.
Pursed-Lip Breathing - This is a breathing technique that will help exhale the air from the lungs.
Edema - Gaining weight too quickly could be a sign of edema, or swelling from fluid buildup. If you have edema, you may be given medication to remove the excess fluid from your system.2
Huff - This is not what someone does when they are upset (*smile). This is a coughing technique that helps clear the airway.
Acronyms to note around COPD
There is one acronym that you should know early in your journey with COPD.
SOB - This is not what someone might call the rude guy down the street (*smile). It stands for Shortness of Breath. It is important to know this one as you are reading forums.
As you get deeper into your journey you will hear a few other acronyms. The following are a few that we encountered a great deal along the way.
INR - This is the number value that represents the thickness or clotting capability of your blood. If you are on certain blood thinners, you will have a test that will monitor the thickness of your blood often. It stands for International Normalized Ratio.3
FVC (Forced Vital Capacity) - This is the measurement how much air you can force out of your lungs after taking as deep a breath as possible. Your doctor will have this measurement from the Spirometry test.4
FEV1 (Forced Expiratory Volume) - This is the amount of air that you can push out of your lungs in one second. This measurement also comes from the Spirometry test. This number along with the the FVC will give your doctor a good picture of where you are in the span of the disease.4
Understanding is key for the caregiver and patient
If you do not understand the words, it is a very good chance that you do not understand the situation. If you have been thrown into a caregiving situation, make learning the core terminology a goal. Your patient is trying to process the weight of everything being thrown at them right now. Add to that the fact that they are probably already SOB, and comprehension is not as good. If you have a good understanding of the words, you can help them understand too.
How has your experience been navigating the healthcare system as someone with COPD?