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 condition like chronic obstructive 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 brings 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 are not alone - there are over 40 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 important 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 be challenging. One of the most important things you can do as a 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 professional 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. The COPD Foundation COPD Pocket Consultant App is a resource to help you and your loved one get information and keep important information in one place.

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 create 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 disease which may progress over time 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 that the COPD has become more severe 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.

Palliative Care and Hospice Care

Being proactive about your health care can take different forms at different stages of illness. You may have heard about palliative care and hospice care but may not know the difference between them. These types of medical care are often misunderstood, and that misunderstanding causes people to shy away from using them for themselves or from discussing it with their family members.

Palliative care is a form of medical care that focuses on relieving symptoms and providing coordinated care for people living with chronic conditions. The main goal of palliative care is to improve quality of care and quality of life. Think of palliative care as a means to relieve suffering or symptoms that might occur with a chronic illness. People who participate in palliative care programs still receive medicines and therapies to treat their illness and prolong life. In most cases, palliative care will provide access to a variety of health care professionals to help improve the person’s physical, mental, social, and spiritual health. To be the most helpful to the sick person, palliative care should be started early in the illness. Ask your health care provider if palliative care is right for you

Hospice care is a type of medical care that is sometimes provided to people who are terminally ill. A person may receive hospice care in a hospital, at home, or in another type of care center. Typically, a person can begin hospice care when it seems that treatments are no longer effective, or when the decision is made to stop seeking treatments to cure the illness or prolong the illness. The major goal of hospice care is to maintain the highest quality of life possible for the situation, promote patient comfort, and provide a support network for the patient and their family.

An important point to note is that hospice care is always palliative care, but palliative care is not always hospice. A person can still seek treatments and cures while under palliative care, but when a person no longer wishes to pursue treatments and cures, hospice may be a good choice. Talking to your doctor or health care provider about your goals and wishes is important so they can help you make decisions about different levels of care.

For more information, contact Stephanie Williams, RRT — Director of Community Programs and Volunteer Management swilliams@copdfoundation.org.

Palliative Care and Hospice Resources:

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 disease, but a good attitude and a sense of humor 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 on 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.


Resources and Support

The COPD Foundation offers resources such as COPD360social, an online community where you can connect with patients, caregivers and health care providers and ask questions, share your experiences and receive and provide support.


Quick Tips for Caregivers Preparing for Doctor Visits