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REQUIRED READING FOR CAREGIVERS, FAMILY, AND FRIENDS OF LUNG DISEASE PATIENTS.   I MEAN IT!  I WANT YOU TO READ THIS AND UNDERSTAND IT AND TALK TO YOUR PATIENT ABOUT IT!  DO NOT MAKE ME COME OVER THERE!

March 16, 2017

 

Over the years, I have written about a lot of subjects related to COPD, lung disease of other kinds, and the processes that the patients and their caregivers experience.  However, there is one subject that I have not addressed directly.  I have tip-toed around the edges in other articles, but I have not just said it.

     I keep seeing posts from patients pleading for answers, any answers to how they can get their caregivers, family, friends, and acquaintances to understand what they are going through.  The posts are pretty sad, actually.  They speak of misunderstanding, of disappointment, of isolation.  They talk about the frustration of watching their life as they knew it slowly slipping away.  And that is one of the problems, one of the sources for all of the misunderstanding.

     Lung disease, as a general rule, comes upon the patient so very gradually that they themselves barely notice it, especially in the early years.  It is such a slow, insidious thing that the majority of patients are not even diagnosed until they are deep into the disease.  There are four stages of COPD, for instance.  The vast majority of patients are not even diagnosed until late stage two or stage three.  They go through the early symptoms, to be sure.  However, they blame the cough, the excess sticky mucus, the shortness of breath with exertion, on growing older, on being overweight, on being out of shape.  All of these things, or some of them, may be true, but there just might be something else going on.

     So, we have established that the patient goes through a slow process as their lung disease takes over more and more of their life, their activities, their thoughts.  First, there is just the occasional episode of wondering.  “Is my smoking starting to catch up with me?”  “Dad had emphysema before he died.  Are breathing problems hereditary?”  “It can’t happen to me!  Should I check with my doctor?  Do I really want to know?”

     Then, the exacerbations start.  “Exacerbation” is a big word for the lung infections, the pneumonias that plague those of us with weak, compromised lungs.  They are the bumps in the road that really slow us down, that keep us from doing the things that we want to do, that we are usually able to do.  These periods of illness, of weakness, are obviously noticeable to those close to us, those who are accustomed to spending time with us.  Thing is, in the early years of the disease, we are able to fight them off, to “get better”.  So, from the point of view of those close to us, we are all better now, and we can go play.  We can do all of the things we have always been able to share with them, shopping and partying and such.  This is the behavior that they have learned to expect from you, and logically figure that you will continue to be your old self.

     Trouble is, the exacerbations take something out of us.  We never totally recover from them.  We can come close, given good doctors and compliance with our meds and maybe even some exercise, but we will never again be quite as strong as we were before.  Our friends and family will have no idea that anything is missing.  Neither will we, initially. 

     As time passes, our lungs will grow weaker.  That is just a fact.  But again, it happens painfully slowly.  Day-to-day or even month-to-month, we notice no difference, given the absence of the dreaded exacerbation.  We go on with our lives, just as we are expected to do.  Realistically, if we don’t notice any changes, it is unlikely that anyone else will do so.

     But then the day comes when the gang plans to go shopping/go out to eat/go dancing, and you are having a bad day.  You decline, to the surprise and disappointment of everyone involved.  What in the world?  Are you upset?  Are you just being lazy?  What is going on?  You feel terrible, because you didn’t want to let everyone down, and frankly, you physically feel terrible.  The shortness of breath is getting worse, and you have to stifle the cough more and more as time goes on.  It is becoming harder to get through your days, but you don’t want to burden anyone with the chilling idea that this really isn’t going to go away.

     During the years when I was losing my lung capacity, (and we are talking about twenty years from the time that I quit smoking to the day of my diagnosis), my ability to do stuff gradually diminished.  It was so gradual that I really had no idea what was happening, but the dark specter of emphysema did make its way to the surface a couple of times.  I pushed it away, and actually did not notice as Mary, the greatest caregiver in the known universe, (my opinion) developed the habit of stopping more often on our walks to look at the scenery or smell the flowers.  It was really handy that she did so, because it gave me a chance to catch my breath!

     We had friends and family members in those days who did not really understand what I (we) were going through.  There were days when I could barely wiggle.  There were days when I felt pretty good, but they became more and more rare as the years passed.  I am certain that there are still those who have no clue what it was like for me to spend the majority of my time fighting for breath, and for Mary to watch me go through it.  Some of them, the ones who cared enough to ask, who really listened to the answers, had some inkling of what was happening in our lives.  They were, and still are, in the minority.  Until the day when we finally get up the nerve to be seen by friends and family wearing our oxygen cannula, until the day that there is finally a visible sign that we are sick, how are those close to us expected to understand why we can no longer run and play with the rest of the world?  We barely understand it ourselves.

     You will fight that day.  You will avoid, at all costs, the idea that you have fabricated in your mind that the cannula makes you look weak, vulnerable, sick.  You will risk harming your heart, you will put your brain cells in jeopardy, just to avoid the anticipated looks of pity, the stares of little children.  Or big children.  I did.

     However, I quickly found that the cannula became helpful in ways other than keeping my body healthy, or enabling me to do stuff that would otherwise render me breathless.  For those who cared, it became a conversation-starter.  We had learned as much as we could about COPD, and we were therefore able to explain exactly what was going on.  The people who were close to us knew that I was trying my very best to stay as healthy as I could for as long as I could, that I was exercising and using the oxygen when I was supposed to do so.  Finally, they also realized that I was sick, that my occasional reluctance to join them in activities had a reason.

     So, in case it is not obvious by now, I want you, as the patient, to communicate with those close to you about your disease.  In order to do that, you must learn as much as you can about it.  Read the posts in the online support groups.  Talk to your medical personnel.  I want you, as the caregiver, to know as much or more about the disease as the patient.  It will be useful in dealing with the changes that will eventually happen, and it will help you to explain to others.

     If you are a friend or family member, if you give a damn about the patient, take the time to learn.  Ask questions.  Offer to help, and mean it!  Get it through your heads that the patient would love nothing more than to join you in your activities, but that there will be times when they just cannot do so.  If you really do care, plan outings that the patient will be able to handle, given their shortness of breath.  One of the symptoms of lung disease is social isolation, partly because of lack of understanding from you.  Please make the effort to understand, to help.  If you have taken the time to read all of this, you will likely be willing to take the next step. 

     Please learn.  Please understand.  Please be the kind of friend that you would like to have if you are ever faced with a disease that will limit your activities.  If you cannot find it within yourself to take that time, you may well become part of the problem.  It is that reluctance to admit the existence of the disease, the refusal to believe that there is a real reason for the patient’s reactions, that leads to the sadness, the loneliness, the isolation.  Please don’t be that person.

Uncle Jim

 

 

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