COPD, A Family Disease
When I was first diagnosed with COPD I heard the phrase “COPD is a family disease.” Over time, and talking with COPDers and family, as well as other support people, I came to understand it.
We COPDers can go through so many things. Those who are near the COPDer can see how COPD is affecting their loved one. They can see the loss or gain of weight, they can see the change in breathing and for some a struggle, they can watch their COPDer walk across the room and stop to cough, they can see the struggle to clear mucus.
For some family/support persons, they might notice slight changes, for others it may be alarmingly fast.
For those who live farther away and don’t get to see their COPDer very often, they may hear changes over the telephone. They might hear wheezing, coughing or a rattle on the other side of phone line. They can ask about it, however the COPDer might change the subject, give a quick response of a “bad day” or do the “just peachy”. Hey COPDer, have you ever said “just peachy”? I know I have.
When you first hear about COPD, you might wonder what it is. Asking your family member, likely gives limited information, he/she may not really understand it at all. You have found out though, that COPD stands for Chronic Obstructive Pulmonary Disease. The doctor maybe didn’t give enough information and you didn’t know what to ask. Often, the next step is the internet.
There is some great information on the internet, there is some that isn’t very good and some that is deceptive. Finding a reputable and knowledgeable site is important. It’s good to take notes and ask someone that knows what COPD really means. Call the doctor’s office and talk with the doctor or his/her nurse to find out what it really means. They might have a brochure that you can pick up.
For the COPDer, it’s important to have a support group.
It gives you an opportunity to share what you are going through and to talk to others who do understand. Even though it looks like everything is the same for others, realize that it isn’t. You and others are in different stages of COPD. You have a different family history, you likely have other health issues going on, you are probably taking different medications and even live in a different climate. Arizona is so different from South Dakota.
For the Support Person, it’s important for you too, to have a support group.
It gives you someone to talk with, too. You often experience through your COPDer what they are going through, what you can see and hear. Yet you know you don’t always know, because if your COPDer doesn’t share, you can only speculate what you see and hear. But you are experiencing things too. All of this can affect your own health. Maybe you don’t eat right, because your COPDer doesn’t have an appetite. Maybe you stopped going to church, to your yoga classes or even out to your weekly card game, because you don’t think you should leave your COPDer alone and don’t have anyone to come in. So, find a support group that you fit into. It’s important that you maintain some things in your life and that you are taking care of you.
Sometimes it’s hard for you to talk with each other; it might be emotional or even angry.
It might be loving and caring. It’s important to realize that managing COPD can be like riding a roller coaster - there may be ups and downs. He might say “you don’t know what it’s like to struggle to breathe” and you may respond “if you would get up and do something once in a while, it might help!” It happens where we all feel misunderstood, not appreciated, judged. A prisoner in our own lives. This is what makes COPD a family disease, because it does affect all.
It is important to exercise, maybe that’s something you can do together. Sometimes diets vary, because your loved one needs to gain weight and you need to lose. You should be able to work something out that you can both eat. You may need to limit your portion, whereas he/she can only eat small portions, so they should do 6 meals, which can include healthy snacks. It may seem challenging to sort it all out, yet you can do it. Talk with a nutritionist. His/her doctor can refer you. You too can honestly reply, “no I don’t know what it is like to struggle to breathe, can you tell me, so I can understand?” There can be a lot of living to do and quality of life is so important. Both of you, live life to the fullest. There may be limitations, so maybe just change your way of doing things, to be able to have a fulfilled life.
Living with or near COPD can be hard and frustrating. It can also give purpose.
November is National COPD Awareness month. This is the time that you can help educate others on COPD. Share an article on Facebook, so that others know that it exists and what it’s about. Print an article and share with others so that they gain some understanding into the life of COPD. You can grow together as a family. Take pictures, write about your treasured memories and build new memories along the way. If you are up to it, help others to do the same.
Have you taken our COPD In America Survey yet?