A Letter to Our Caregivers

To Our Family and Friends Who Are Caregivers:

Thank you. Thank you for being our friends and caregivers (or carers). This disease is so very hard and everything you do makes it easier for us.

You're in an interesting position, being affected by COPD without actually having it. You might be afraid, concerned for the future of your loved one, confused, frustrated, in denial—or feel all of these. I think they're all perfectly normal reactions.

If your loved one has just been diagnosed and you don't know what's going to happen and you're not sure what your role is, I hope this article helps you.

1. Research COPD and Stages

The first thing you should do is some research. You have a lot to learn and knowledge really is power.

You may be wondering if this means your loved one is going to die soon. You may be wondering how long they have left. You may be scared of the answers. Well, I can answer that a COPD diagnosis is not a death sentence. I can also answer that for most cases, patients can live for a very long time (several decades) after that diagnosis, especially if they follow a good care plan. That means things like taking prescribed medications; exercising; possible pulmonary rehab; and if they smoke, quitting the habit.

There are some wonderful websites like COPD.net, The COPD Foundation, The Mayo Clinic , and the American Lung Association, with helpful information. There are even more articles about COPD, including ones by and for caregivers.

Probably the most useful information after a diagnosis is to know what the four different stages are, who fits into which stage—more or less; remember these are just guidelines as every patient is different—and what to expect in each one. If your loved one has had a pulmonary function test (PFT), make sure the doctor explains what the numbers mean in regards to your loved one's lung function.

The second topic you will probably want to research is on caregiving itself—what others went through, what to expect, and encouragement for the people who do it. There are many books on the subject. You can find these at your library, on Kindle, and Google Books. There are also many wonderful articles and blogs online as well. Just search for “COPD caregivers” or even just “caregivers” and you will find a lot of information. COPD.net also has a forum you can join.

2. Comorbidities of COPD

Comorbidities are additional diseases or health problems that a patient has simultaneously with COPD.

The website for the Respiratory Health Association of Metropolitan Chicago (RHAMC), lists possible comorbidities as heart disease, osteoporosis, diabetes, and lung infections. It states: “Two heart problems common in people with COPD are pulmonary hypertension (high blood pressure in the lungs) and cor pulmonale (heart failure that results from lung disease).” Osteoporosis, RHAMC says, is associated with risk factors such as smoking, low vitamin D levels, and use of steroids such as Prednisone. Diabetes may be connected with COPD because of the involvement of inflammation for both diseases. Probably the most common health problem consistent with COPD is lung infection, such as pneumonia.

For me, I also get a hoarse voice from the inhalers, a 'brain fog' sometimes, depression, anxiety, and pain in my rib cage.

3. Our fatigue is real.

I sleep so much that my bed and I have an understanding.

With all the beauty sleep I take I should be Miss Universe.

Naps have a special place in my daily routine.

The Sandman and I are on a first name basis.

As you might have guessed from my statements above, I am TIRED. Fatigued, even. Sometimes just plain exhausted. And it is not a case of sleeping so much that I just feel tired. No, my body is genuinely fatigued. Depression is also a factor.

We rest a lot, need quiet times. The fatigue is real. And it is a huge hindrance to our activities. There are several methods that the medical community uses to describe the level of fatigue their patients experience called the Manchester COPD-fatigue scale.  It measures 27 different items in the context of physical fatigue, cognitive fatigue, and psychosocial fatigue.

A 2004 study by Thander, et al, revealed that 47% of COPD patients reported being fatigued every day in the prior month, while just 13% of those without COPD reported the same. Also from the study: “44% reported that fatigue was either the worst or one of the worst symptoms they had, compared with 18% and 10% in the control group. The patients reported a significantly greater impact of fatigue on cognitive, physical and psychosocial functioning compared with the control group.”

COPD.net's 2016 In America study also found fatigue to be the second most frequently experienced symptom for respondents.

4. Adapt to the new normal.

When I was diagnosed I was in the early stages and could still do the things I liked and go where I wanted. I know many people with COPD who function well and whose disease progression has been slow. So your loved one might be the same way. Whatever they can do, they should do.

But when I got sick I went downhill pretty quickly. I have a lot of limitations now, after only 4 years, and I and my family have had to adapt to them. I can't play sports or be den leader in the Scouts with my son. I can't go on walks or go dancing with my husband. We can't go to the store or on any errand without a lot of planning. I can't always cook and bake, both things I loved to do when I was healthy. I can't work.

This is the new normal for us.

We have adapted, though it's not been easy. We are continually adapting, to find other ways and other activities we can do together. I sit in a chair in the yard and pitch to my son while he practices batting. My husband and I have found we like watching documentaries together. We like talking to each other. The three of us discovered new board games we like—my kiddo is a wiz at chess, I am Nancy Drew when we play Clue, and my husband is ruthless in Monopoly.

Times together like these are good for all of us.

Learning to adapt to a new and changing 'normal' is a concept that can be difficult to grasp. It can be frustrating to have to do it. It can be daunting, annoying. But it's so very important. Because we, COPD patients, are not going to get better. This is a harsh truth. The good news is that humans do tend to adapt to new situations. It may not be easy but when it happens it's the best thing for everyone, easing a lot of stress and depression and anxiety.

5. It's Tough.

There will be tough days ahead. Your load will be heavier.

You may also have depression and/or anxiety because the disease is frustrating. Or because you are watching your loved one go through that struggle for breath, that struggle with fatigue. Or because you do so much but maybe your efforts are ignored in favor of the patient's health problems. If you do become depressed and anxious, make sure to get some help from a professional. But you can get through these times. You will find that inner strength to do it.

6. There can still be good memories and good times.

And the good times are definitely not over, despite the tough times. Do the things you can do together. Find new ways to have fun. Discover new interests. You can still have the laughter, the discussions—the intimacy—you used to.

7. Take care of yourself.

You, as caregiver and as a human, deserve some time to yourself. You deserve a respite and a sense of normalcy. Have some time away from home. Hang out with your friends, take in a movie, sit outside in the sun and read in the quiet morning.

Take care of yourself too. Exercise, good food, rest--all that you do to make yourself healthy and feel good—this is even more important when you're a caregiver.

As the disease progresses and your loved one becomes more and more limited and more and more dependent on you, the more you will have to do. The more you will lose of the way your relationship used to be. Have someone you can talk to, vent to, who will listen to you. Support groups can be a great place to do that. There there are people who are going through what you are. They will understand.

***

You are so important to us.

Your efforts mean so much. Your understanding and encouragement and sympathy help us more than you can know.

So thank you, again, for all you do for us. I leave you with this perspective by Tia Walker from her book “The Inspired Caregiver: Finding Joy While Caring for Those You Love”:

“Caregiving often calls us to lean into love we didn’t know possible.”

May you lean into love.