How to Be a Great Caregiver to Someone With a Chronic Illness

How to balance maintaining your loved one's autonomy and being an adovocate
How to Be a Great Caregiver to Someone With a Chronic Illness

Contributor: Jame Abraham, MD

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Taking care of someone with a chronic illness like cancer poses unique challenges.

But millions of parents, children, siblings, partners, friends, neighbors, sisters, daughters and sons put their lives on hold to take care of someone they love. Every day, they put someone else ahead of themselves and sacrifice their own personal priorities.

Walking the fine line

Caregivers drive to appointments, spend hours in waiting rooms or hospitals and listen to the doctors meet with their loved ones.

Every day they walk the fine line of being an advocate while at the same time maintaining a respectful autonomy.

They pause before asking the questions, they think twice before making statements; sometimes they suffer in silence and weep with helplessness. Sometimes they wish they could bear all the pain by themselves, so that their loved ones are spared.

They explain to their supervisors about taking extra time off from work, fill out complicated Family and Medical Leave Act papers, talk to insensitive insurance representatives and complete complicated insurance papers.

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They sacrifice their own health and share the financial burden.

As an oncologist who interacts with many family members and caregivers of my patients, I clearly see these struggles every day.

Being a great caregiver

How do you become a great caregiver? I don’t have all the answers. But these are my thoughts.

1. Be a good listener. Only one person understands the pain of being a patient, and that is the patient. None of us know what it’s like to be in his or her shoes until we walk in those shoes. A person with a serious illness and those without live in two different worlds. Listening is one way of connecting those two worlds.

2. Have a frank conversation with the patient about his or her illness. Try to understand his or her view about the price they are willing to pay when dealing with a life-threatening illness. Discuss quality of life vs. quantity. Each person will have a very unique approach to these very difficult questions.

3. Respect the patient’s autonomy. Always remember, at the end of the day, the person who has the highest stake is the person who is suffering from the major illness.

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4. Respect the patient’s privacy. You will be the person who is charged with setting the boundaries with other family members or friends to protect their medical information.

5. Be a strong advocate with the healthcare team for the patient. Everybody needs a champion. Once you have a great understanding of tips one through four, it’s up to you to stand up and advocate for your loved one. You can serve as the eye, ear and mouth for the person who is suffering. If done properly, this will help the patient, and the doctors will respect your voice.

6. Be a good navigator. Health care is a very complicated place and a complicated process. Navigating through the system alone is a challenge for anyone, even the savviest of patients. They need someone to help them navigate this process.

7. Try to understand the illness as much as possible. Ask the right questions to the doctors and nurses, and try to understand the unique nature of your loved one’s illness. Try to filter the noise from the websites, literature and chatter from neighbors, friends and well-meaning experts.

This post is based on one of a series of articles produced by U.S. News & World Report in association with the medical experts at Cleveland Clinic. 

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