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04/16/2012 05:54 AM

COPD: Life Skills Tutorial

ThomasHope
ThomasHope  
Posts: 1915
Senior Member

A diagnosis of chronic obstructive pulmonary disease (COPD) for you or a loved one can seem like devastating news. A life with COPD is different than a life without COPD and coping with these changes is a significant challenge to overcome. The good news is that people with COPD continue to live active, full lives. We offer six steps that will help you to better understand and manage your life with COPD.

To get the most out of these pages, we recommend that you print these pages or write your answers on a blank piece of paper.

Step 1: Your Life With COPD

Step 1: Your Life With COPD

As we set out to explore your personal experience with chronic obstructive pulmonary disease (COPD), we will look at:

The challenges that the illness presents to you and your family.

Common related problems to watch out for.

Ideas for what you, your family and your doctor can do to help you to live the life you want to live.

Let's start by comparing you and your family before and after the illness. Write down the things that are important to you that have changed since you became ill. Some of these changes may be things you now have difficulty doing or abilities you have lost; others may be ways that COPD has changed the way you look at your life, some even for the better (for example, a new appreciation for the time you spend with your children).

Write down:

What things were most important to me before COPD?How have these things changed since my COPD?

Things important to my family's life before my COPD include...

How have these things changed since my COPD?

Step 2: Experiencing Loss

After writing down how having COPD has affected important aspects of your and your families' life, you may experience the feeling of loss. It is important to understand what the loss means to you. This will help you avoid giving the loss a meaning that is not entirely true.

When you experience loss, you naturally feel sad. Feeling sad is okay. Feeling guilt ridden is not okay. When you give loss a meaning that isn't entirely true, you may unnecessarily beat yourself up and feel even worse about your disease. Here are some examples of how a loss might be given a meaning that might not be true:

Loss

Meaning That is not True

I can't work...

therefore...

I'm not valuable.

I can't travel...

therefore...

I'm a burden.

I don't look good...

therefore...

I'm scary to the kids.

I am afraid to have sex...

therefore...

I'm half the person I was.

On a piece of paper:

List any changes that feel like losses that you wrote down on the previous page, "Your Life with COPD."

Leave a few spaces below each loss you list.

List your losses in the order you feel most able to do something about, to what you are least able to do something about.

Now that you've listed some of your personal losses, it's time to figure out steps to take to make them better. Below each loss you listed, try to think of one step that you could take today to move toward making that loss feel better - even if it's only a tiny step.

Don't worry if you can't think of anything yet. You can always come back later. The following pages are full of ideas that have helped many others. Some can help you.

One step that is often a huge help for people with COPD is to start using supplemental oxygen.

Step 3: The "Mark" of Oxygen

Using supplemental oxygen is common for chronic obstructive pulmonary disease (COPD) patients and is referred to as "wearing oxygen." This helps manage COPD symptoms, but also means some big changes.

Changes to Expect When You Start Wearing Oxygen

Here are some of the things we have heard many people say about "wearing" oxygen:

"When I wear oxygen, people view me as a sick person."

"Using oxygen means jumping through lots of hoops with insurance and the medical supply company."

"It is a constant, heavy, tangling companion."

"It frightens children, or at least I worry that it does."

"It can be uncomfortable, even painful to wear and use."

"I worry about supply. What if I run out? How will the airlines handle it? Will I be able to get it where I'm going?"

"I feel it's the only thing people can see when they look at me."

Things You Can Do to Make Wearing Oxygen Easier

These are all very real concerns that need to be addressed. We all need oxygen and it is a challenge that you need to get it this way. Yet, there are things that can make it easier:

Give it time: Can you do more with it on? Once you experience some of the positives that go along with supplemental oxygen, you may focus less on the drawbacks. If the positives don't outweigh the negatives, then don't keep it a secret. Talk to your doctor about this.

Talk to others: Talk to other COPD patients, join a COPD support group, and talk to your friends and family. Then take these ideas up with your doctor.

Don't stop wearing your oxygen: Unless this is advised by your doctor.Acceptance of Oxygen

Wearing oxygen will make you feel less short of breath and more energetic. However, no matter how much supplemental oxygen improves your COPD symptoms, you will not be able to do as much in one day as you did before COPD. It is important to acknowledge this, accept this, and then learn to accept help from your family, friends, and healthcare providers.

Step 4: Accepting Help

Step 4: Accepting Help

With chronic obstructive pulmonary disease (COPD), you may feel less able to do many of the tasks that you have always done for yourself. This can lead to a feeling that you're not "pulling your weight." People vary in the amount of support they need from time to time, and they vary in their ability to accept help. It's important to recognize that, even if it is only from your doctor, you do need help. Finding and accepting that help is an important part of caring for yourself.

Take some time to think about the following questions and write down your answers:

Is there someone who has been trying to help that you've turned down?

Have you thanked those who have helped or are helping you? Can you think of a new way to say thanks?

What makes it hard for you to ask for or accept help from others?

Can you think of some other sources of support you haven't utilized? How about support groups? Extended family? Religious community?Even though you may be the one with COPD, everyone who loves you and is involved in your life is also affected by your disease. They want to help you, and they want to help make your life easier because they care about you. By allowing the people around you to help, you will feel better because you have more choices, and they will feel better because you're doing better. It is very important to talk to your family and learn together the best ways to cope with your COPD.

Step 5: COPD and Your Family

Step 5: COPD and Your Family

While you may be the one with chronic obstructive pulmonary disease (COPD), everyone who loves you also suffers from the illness. They suffer because they hate to see you uncomfortable and unable to do the things they know you enjoy. In addition, stress levels can rise as roles change and family goals and plans have to be re-evaluated or changed.

Over the course of the illness, you and your family will face different types of challenges and will respond to these with different types of coping actions. Understanding how these coping methods are different, and learning when to use each type, can help families deal with the stresses of COPD.

General COPD Challenges and Coping Methods

The challenges of COPD typically begin long before the diagnosis. However, when you find out for sure that you have COPD, you are likely going to feel lots of emotions like sadness, fear, anger, guilt, and worry, and anxiety. This is an important time for you and your family. Be open about sharing these feelings with your loved ones. Talk it out, cry together, hug each other, talk about how the diagnosis may change your lives, then plan how to pursue treatment together.

Types of Challenges and Your Family's Response

Acute Challenges

One type of challenge is an acute challenge. This is when something happens suddenly that makes the situation worse. Acute challenges are usually brought on by your increased physical limitations.

Examples

Some examples of acute challenges are exacerbations such as lung infections, or trips to the emergency room due to some source of unusual excitement or anxiety.

Response to Acute Challenges

Usually, with a short burst of extra effort by you and by your support network, an acute challenge gets better or is solved. Family members rally together sacrificing time and plans to support you and each other.

Chronic Challenges

The second type of challenge is a "chronic" challenge. This is a long-standing, slowly progressive problem that is not likely to go away or be "cured." You may experience lots of frustration and guilt about not fulfilling your role in the family. You may find it difficult to accept that your role has changed. Examples

Some examples of chronic challenges are not being able to shop or cook for your family like you used to; not being able to do as many household chores like cleaning, or yard work, or shoveling snow; not being able to entertain over the holidays in as elaborate a fashion; having to carry supplemental oxygen; or, even managing your medications can be a new, chronic challenge.

Response to Chronic Challenges

For chronic challenges, the better coping response may be to understand what the loss has meant for you and your family. Once you determine this, try to find a way to recover the value of what was lost, rather than recovering the exact same activity. If you can't ski together as a family anymore, maybe you can enjoy family walks. If not walks, maybe scheduled family dinners or game night. The sharing and togetherness doesn't have to be lost, it may just take a different road to get there. The only way to do this is by engaging in reflective thought and open communication with your family and support group. Try to be proactive and creative - with the right attitude, you can solve the problems chronic challenges present. Managing Your COPD Together Over Time

It's important to recognize that, over time, managing your COPD will require both types of response - sometimes for the same event. For instance, if you become acutely ill at a family event, it may require an acute response, maybe even a trip to the emergency room. Not only will the family be concerned about your well-being, but you will all also be dealing with the disappointment of having to cut short your "play time" together. Once the immediate crisis has passed, you and your family will need to recognize when to relax your vigilance from the crisis and switch to finding a way to manage any changes for the long haul. This may include finding new ways to play together.

Step 6: Medication Effects List

Step 6: Medication Effects List

In addition to physical symptoms, COPD can cause a variety of problems with both your thinking and your emotions. When your breathing suddenly becomes more difficult, your brain may get too little oxygen or too much carbon dioxide (the "waste" gas that is expelled by the lungs). If these conditions last for an extended period of time, your brain can get "sick" or actually be damaged, decreasing your ability to problem solve and remember. Other illnesses that frequently occur along with COPD, such as infection, can add to the confusion and memory loss and make it difficult to pay attention.

Medication Problems

The medications that you take for your COPD can also cause problems. Oral steroids - most commonly prednisone - can cause many learning, memory and emotional problems. They can make you nervous, depressed, or more sensitive and irritable than usual. Some common antibiotics used in COPD can do the same things. When these side effects happen, it can be tempting to want to stop the medication. A better plan might be to let your doctor know what is happening so that he or she can either change the medication or find another way to relieve the problem. If you do have side effects, write them down and take them with you to your next doctor's appointment.Problems to Discuss with You Doctor

Write down any problems - either with your feelings, or your thinking, or your body - that you feel may be due to your illness or the medication. Bring the list and discuss them with your doctor at your next visit.

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04/16/2012 11:16 AM
auntdee
auntdee  
Posts: 2717
Group Leader

Thomas, so far, this has brought something to light for me. My spouse stopped taking me out. Not that he took me out all that much. Just once in a great while we would go out to eat. But now, my illness seems to be an excuse for him to sit by himself and drink all weekend, every weekend and not even talk to me. Well, i put a bandade on that wound and go and do for myself. yay!!!! God Bless us all.

Love and Hugs,

Doris

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