Learning to Advocate for Yourself

Know your body, your symptoms, and the triggers for those symptoms. Never let anyone tell you how you feel. Know what the problem is and know when to ask for help.

Caring for yourself starts with self-care

One way to start this journey is by journaling your days and documenting information about you. Cover the why’s, how’s, and what’s. This is how I found out that if I eat too much beef, I will suffer from shortness of breath but that it will probably pass in time.

Care about you

Make the effort to get the best possible treatment for yourself. You deserve the best. If your doctor is dropping the ball, have a frank talk with him to find out why. Shop around and talk to others with COPD. Find out who has the best care and how they found it. Do your research on doctors in your area and find one that suits you. Then, ask all your doctors to play together. Have them chat with each other about the best treatments for you.

Caring for caregivers

Now that we have taken care of our medical needs, we have lifted a burden off your caregivers. Let’s talk about advocating with our caregivers. One of the biggest problems for caregivers is compassion fatigue. This fatigue results from watching a loved one suffering and not being able to handle the sensations and feelings. It usually results in having no more to give. It often leads to a lack of empathy.

Rearing its ugly head

Get in touch with your doctor asap and ask for the help of a social worker. She will be the buffer between you and your spouse. A social worker can:

• Identify support systems in your area that work for you and your caregiver, both online and in person.
• Link to community organizations that will provide proper care for both of you.
• Make it easier to interact with your doctor with clear communications between everyone.

Caregiver's caring

It is important that caregivers' needs are met and cared for. We know that without self-care, there is nothing left over for anyone else. Make sure the caregiver gets the attention they deserve and don’t be afraid to tell others, what a good job they are doing. Do not let the relationship become unbalanced, do what you can to lighten the load. When caregivers try to do it all alone, it means they don’t know how to ask for help. Know when that time comes and don’t be afraid to ask for help.

How I support my caregiver

We eat take out once a week and I cook once a week to relieve him of cooking duties. We order groceries online and he can pick up or have them delivered. We also try to declutter and get organized in our home. We purchased a robot vacuum cleaner and run it through the house daily. We're also lucky enough to be able to hire someone for lawn maintenance and snow removal. The day before I have to go out or have a task to do, I imagine the situation, anticipating what I will need and how I will get things ready, a little at a time.

Editor’s Note: We are extremely saddened to say that on January 7th, 2024, Barbara Moore passed away. Barbara’s advocacy efforts and writing continue to reach many. She will be deeply missed.