The COPD Caregiver

A Crucial Person in the Patient's "Shared Care" Team

The role of the caregiver is an important one. Often, it is the greatest expression of love that can be offered. Caregiving can be hard, particularly when the person you are caring for has a progressive condition like chronic obstructs pulmonary disease (COPD). Some people become a caregiver suddenly and without warning. For others, the role evolves slowly over time. Being a caregiver for a spouse, parent, friend or other loved one takes a lot of time It bring intellectual and emotional challenges for both the caregiver and patient. However, the situation may also strengthen the relationship. It may provide a chance to grow even closer. The attitude of the caregiver may also change the patient's attitude. A positive outlook by the caregiver can do wonders for the patient.

It is important to realize that you're not alone - there are 65 million family caregivers nationwide. Family caregivers provide an average of 20 hours of care per week, with many providing care around the clock.

As a COPD caregiver, your main focus will naturally be on your loved one. However, your own well-being is vital for both of you. You must remember to take care of your own needs. Whether you recently became a caregiver or have been caregiving for a while, it's easy to get overwhelmed. You may be unsure of where to turn for information. It's also normal to have a lot of questions. You may want to know:

  • Where should I look for help and support?
  • How do I keep track of medication and doctor visits?
  • What are the signs and symptoms that show an exacerbation - a flare-up of my loved one's symptoms?
  • How will I know when it may be time to change my loved one's disease management plan?

What You Need to Know as a COPD Caregiver

Caregiving can disrupt that person's life. Especially in the early stages of the new relationship with the patient, it is not uncommon for both the patient and the caregiver to feel a loss of control. The patient may feel that they are becoming a burden. They may feel that they have lost self-worth because they cannot do activities that they once enjoyed. For the caregiver, the new duties can challenging. One of the most important things you can do as caregiver is to be informed. Educating yourself about COPD and your role can help you feel better prepared for your duties as a caregiver. It will ultimately benefit the overall health and well-being of your loved one. There are many resources available to support caregivers and help them stay informed. Family, support groups, and caregiver companies can offer services and advice.

Caregiving and the Shared Care Team

One of the best resources is your loved one's health care provider (physician, nurse practitioner or physician's assistant). Working as a team with your loved one's health care provider is helpful for both the caregiver and patient. The "shared care" treatment approach lets patients, caregivers and health care professionals work better together in helping to manage your loved one's COPD. As a caregiver, you play an important role in your loved one's shared care team. The caregiver and the patient must act as the "best advocates" for the patient's health. No one else knows how the patient is feeling daily.

Your Role as Caregiver in Helping To Manage COPD

By tracking symptoms and finding triggers that worsen the disease, you can also help your loved one and your loved one's health care provider recommend a treatment plan. A COPD patient's treatment plan may include pulmonary rehabilitation, daily medical treatments and/or oxygen use. COPD medication devices need to be used in the correct way to make sure the patient receives the right amount of medicine. The caregiver should know the proper way each device is used and help your loved one as needed. If your loved one has any problems using a COPD medication device, you and your loved one can speak with his or her health care provider about considering other treatment options.

COPD is a progressive disease which means it will get worse over time. As a caregiver, it is important that you are aware of the signs of COPD progression. Some signs t at COPD has become more sever include:

  • Symptoms, such as shortness of breath, wheezing or chronic cough, have worsened
  • Increased tiredness
  • Reluctance to exercise or do activities that were done more easily
  • Experiencing more frequent flare-ups and trips to the hospital or clinic to treat COPD
  • An increased struggle in getting around the home, such as going up and down stairs
  • Trouble doing daily activities, such as dressing or showering
  • Increased depression or anxiety, especially when faced with stress of any kind
  • Not leaving home due to COPD symptoms

If you notice your loved one's COPD has gotten worse, you and your loved one should contact his or her health care provider to discuss these changes and new treatment choices.

Taking Care of Yourself as Caregiver

Remember that both the caregiver and the loved one have choices in how they approach their situation. Caregiving can be rewarding on many levels, but it can also be.challenging. It is hard to see someone you are caring for struggle with their health. In addition, caregiving can change families and sometimes lead to disagreements about how best to care for the patient. There can be great sadness, hopelessness feelings of aloneness. Caregivers can also experience much stress as the demands of caregiving take away leisure and personal time. It is not easy to stay positive despite a chronic progressive disease, but a good attitude Na sense or will do wonders for everyone involved!

If the patient and caregiver. can try to be kind to one another, to offer thanks for whatever thoughtfulness or efforts are offered, the burdens of all concerned can feel much lighter.

It's important to take the first step to improve the quality of life for both your loved one and yourself, and to find the support you need. By feeling better, you can help your loved one feel better.

Is Caregiving Putting Too Much Stress on You?

With so much time devoted to caregiving it can be easy to forget about yourself. It is also easy to overlook warning signs that you're under too much stress. Common signs of caregiver stress to watch for include:

  • Feeling sad or worried
  • Low energy level, feeling tired
  • Trouble sleeping or sleeping too much
  • Gaining or losing weight
  • Losing interest in hobbies or social activities
  • Becoming easily angered

If You Feel Overwhelmed...

It's not unusual to feel overwhelmed as a caregiver. Talk to your family health care provider and/or clergy about your feelings. Try to take time to do something for yourself - whether it's a hobby, a phone call with a friend of just taking a long walk. Stay in touch with your friends and family members, and ask for help in giving care.

The COPD Foundation offers resources such as COPD360social, an online community where you can connect with patients and caregivers and talk to others who are living well with many of the same challenges you face. You can also call the COPD Information Line, a toll-free hotline for anyone seeking information or support on COPD. The information line operates Monday through Friday from 9AM to 6PM Eastern Time. You can call toll-free at 1-866-316-COPD (2673) to speak to an individual with COPD or caregiver. These types of activities will let you share your story and listen to others, like yourself, about how they are living with the disease.


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Quick Tips for Caregivers Preparing for Doctor Visits

  • Bring a daily diary of your loved one's symptoms and how the patient responds to treatments and medications to the appointment
  • Keep your loved one's medical history as detailed as possible
  • Make a list of any questions you and your loved one may have for the health care provider
  • Take a notebook or even a tape recorder to learn new information
  • Don't forget to have your loved one's insurance and Medicare cards with you