If you are a
caregiver for someone with a chronic
illness, there can be a lot to manage, both for your loved one and when
it comes to maintaining your own mental health. It is not uncommon for
caregivers to feel overwhelmed or stressed—particularly when the person they
are caring for is someone they love. As such, it is important that caregivers
not take on too much so that they can continue giving quality care.
Chronic illnesses like COPD are ongoing, meaning they can continue to progress for some time. A patient may need significant care from a caregiver for a while before they require full time medical assistance. While a caregiver’s primary focus is taking care of their patient, it is also essential that caregivers maintain awareness of their own well-being to ensure they can keep doing their job as well as possible.
As a caregiver, there are a few guidelines you can follow to make sure that you are keeping your loved one’s health, as well as your own health, at the forefront. Read on to learn more about successfully navigating caregiving for a loved one with a chronic illness like COPD.
Prepare for being a caregiver thoroughly by getting and staying educated.
Before you begin providing care, learn as much as you can about your loved one’s chronic illness. You can find a great deal of information about most chronic illnesses, like COPD, at accurate and trustworthy websites run by reputable medical organizations like the National Institutes of Health, the Mayo Clinic or the Centers for Disease Control and Prevention. You can also ask to attend doctor’s visits with your loved one or contact their providers (with their consent) to get as much information as possible. Bring a notebook with you to any visits or phone calls you are able to participate in so you can take notes, and ask health care providers if you can contact them (or who you should contact) if you have additional questions or concerns. Keep a list of contacts and any important information with you at all times.
Make sure you know how to use all special medical equipment.
Depending on your loved one’s chronic illness, it is likely that they will require some kind of special medical equipment along the way to help keep them comfortable or provide necessary treatment. If your loved one uses any special equipment, like an oxygen concentrator or a hospital bed, it is helpful to contact the provider or manufacturer to make sure you know how to use and care for the equipment properly. Ask about proper cleaning, storage, replacement parts and any other information you may need to operate the equipment correctly. You should also ask about how to troubleshoot any issues that may arise. Make sure you keep record of a contact that can answer questions about this equipment in case anything comes up.
Know when you should be concerned
One of the most nerve-wracking aspects of caregiving is recognizing when a situation becomes worrisome. Unfortunately, when it comes to chronically ill patients, it is not always crystal clear when you should be concerned and when certain symptoms or situations are just a part of the chronic illness. With progressive diseases like COPD, this can be especially true as symptoms may change and progress naturally over time, no matter what you do.
This is why caregivers must stay educated about their loved one’s chronic illness. You should be prepared with a variety of procedures to help your loved one with their symptoms. However, sometimes they will need more than what you can offer. Make sure that you have a conversation with a health care professional about when you need to seek medical attention for your loved one, or when you should call a doctor for advice. Ask them to talk to you about specific signs that are concerning and what you should do for each worrisome symptom, including knowing when you need to call 911. Regardless of the particular chronic illness, it is helpful to be familiar with the general signs of infection (fever over 101°F, feeling especially fatigued, swollen lymph nodes, headache and worsening symptoms) as they are often a concern for people with chronic illnesses. People with COPD, for example, are at particular risk of COPD exacerbation, which can be life threatening. Be prepared to watch for worsening symptoms and know what to do when they occur. This will not only help you provide the best care that you can, but it will also help ease anxiety for your patient and for you as a caregiver.
Understand your limits as a caregiver.
Though you are providing care for your loved one and may even have been trained in certain aspects of caregiving for chronic illness, remember that you are not a doctor or a nurse. As such, you should not be carrying out aspects of care that should be provided by a medical professional, and you should not expect yourself to have that level of knowledge or proficiency. There will be times when you need additional help or assistance, and that is okay. It is important to recognize that you cannot do it all. You are only one person and you will need to take breaks and care for yourself sometimes. As hard as it can be with a loved one, it is important to set some limits for yourself so that you do not become overworked, overwhelmed or overly stressed.
Take care of yourself so you can provide the best care possible.
You can only provide quality care if you take care of yourself, too. That means understanding and respecting your limits to ensure that you do not become depressed or wear yourself out. Providing care for a loved one with a chronic illness is hard work in and of itself, but it can also be difficult emotionally. Watching your loved one go through discomfort, pain or suffering is extremely difficult, and it is important to acknowledge how hard that can be for you as the caregiver. Make sure to allow room for any feelings you may have—sadness, grief, frustration, anger, resentment—to minimize the likelihood that they will build up into clinical depression. You are allowed to experience complicated emotions about this difficult job, and it is important to have an outlet to express these feelings. Ensure that you have someone to talk to about your experiences and emotions while caregiving. A therapist or counselor is ideal, but even having a trusted friend who can listen is extremely helpful. Do not try to do it all on your own. Caregiving is bound to be really difficult sometimes, and you need to make sure you have the space to process everything.
Be prepared for your life to change, but do not stop doing things you enjoy.
Many people who become caregivers for their loved ones feel that they must give up everything their loved ones can no longer enjoy, too. Not only is it unnecessary, but it can lead to further unhappiness and resentment as a caregiver. You will likely need to adjust your life—particularly if you live with the person you care for—but it is also important to maintain some normalcy and continue to participate in activities you enjoy. Continue to spend time with friends and get exercise. See the movies and read the books that you are excited about. Go out sometimes and enjoy your life. Make sure that you do not become isolated or consumed with your caregiving duties. Providing care for a loved one with a chronic illness is an essential job, and while you should take caregiving seriously, you should also continue to live your life.
Do not hesitate to ask for help when you need it.
Everyone needs help sometimes, but this will be especially true for you as a caregiver for a loved one with a chronic illness like COPD. Know that you can and should ask for help whenever you need it. Rely on the health care professionals in charge of your loved one’s care to guide you and step in when the care your loved one needs is beyond what you can provide. Do not hesitate to contact doctors, nurses, therapists or equipment providers any time you have a question or concern. You cannot provide all the care your loved one will need all by yourself, so make sure you seek help any time you think you might need it. Ask another caregiver or home health nurse to step in if you become overwhelmed, overworked or overly stressed, and schedule time to take care of your own health. Chronic illnesses can be complex and they can require a lot from any caregiver. Asking for help is a strength, not a weakness, and it will help you provide the best care possible for your loved ones.