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The Many Faces of a Caregiver

Editor’s note: This article was written by UAB employee Rita Stewart-Hampton. Her husband, Chad, is a UAB Medicine patient who has kidney disease and is on the waiting list for a donor organ.

Chad and Rita

Chad and Rita Hampton

As a kid growing up in Guntersville, Ala., I remember family members taking care of other family members when they were sick. I remember my stay-at-home mother taking care of my daddy when he was sick with cancer. My parents were older. I always pictured a caregiver as someone taking care of an elderly person. In 2016, I realized that was not the case.

That year was the beginning of my caregiver journey for my husband, Chad, who needs a kidney transplant. It has had its highs and lows and its twists and turns. Let me first introduce Chad and our life. We have been married for 20 years. I am a working professional in the UAB Collat School of Business Career Services Department. Chad served nine years in the National Guard, and he has been employed at Mercedes-Benz U.S. International in Vance, Ala., for 20 years. Chad and I have an active 12-year-old son, Seth, an honor roll student who loves sports, reading, and playing video games.

The Silent Fight

Since the age of about 33, Chad has fought like a warrior against diabetes and hypertension. In 2012, as a result of these conditions, Chad was diagnosed with chronic kidney disease. Despite everything he tried, his kidneys were functioning at only 20%. His commitment to regular exercise, diet management, keeping regular doctor’s appointments, and taking all medications as prescribed allowed him to slow the progression of the disease until this point.

For the past three years, Chad has helped coach our son’s basketball team. Last year, he had the pleasure of helping coach his sixth grade football team. They did not win many games, but his time with Seth and his teammates was priceless. He continued doing all of these activities as his kidneys were failing.

When Chad was first diagnosed with kidney disease in 2012, my role as caregiver was mostly limited to accompanying him to The Kirklin Clinic of UAB Hospital for regular appointments with his nephrologist. In 2016, my caregiver journey got real – real serious that is. We were told that Chad’s kidney function (as measured by his glomerular filtration rate, or GFR) was declining rapidly and that he would need to start dialysis or receive a kidney transplant to stay alive. Of course I went through the normal emotions of asking why this is happening, crying, denial, and being mad at everything and everyone. I was even mad at the doctor because she never explained GFR and what that meant during those regular checkups.

So in 2016, we started the journey of trying to get placed on several kidney transplant waiting lists. I spent many days and nights researching how this process works. I thought that if Chad could be listed at several transplant centers, he would have a better chance of getting a kidney. After many phone calls and much persistence, we were referred to four kidney transplant centers.

I then started using my organizational skills and started four notebooks of different colors so that I could organize all the information from each of the hospitals, which included UAB Medicine, Vanderbilt University Medical Center, Emory University Hospital, and the University of Mississippi Medical Center. You would think each hospital would have the same tests. Some do, but many of them want their tests to be done at their facilities. This meant many nights in hotels and traveling to each transplant center while trying to still live a somewhat normal life.

The Illusion of Normalcy

During this time, Chad was still working a rotating shift at Mercedes-Benz. His GFR continued to drop. Chad rarely missed a day of work, but now he was beginning to use numerous sick days because he did not feel well. He continued to help coach youth football and do other activities. Why? Because he wanted to feel normal. He wanted to make everyone feel that everything is okay, when it really was not.

As for the caregiver, I continued to work, be a mother, a wife, a sister, participate in church ministries, be a good friend, a good employee, and an encouragement to other people. I posted pictures on Instagram and Facebook, but I felt like I was dying inside. Why? Because I wanted to feel normal like everybody else.

It does not help when people see Chad and say, “He does not look sick to me.” But he is. What people don’t know is that he was up all night throwing up, or that I was up all night with him rubbing his legs. We spent a lot of energy trying to be normal and trying to convince others – and ourselves – that everything is okay in our life.

This is the new face of many caregivers – ordinary people who wear multiple faces and try to make things feel normal again.

Waiting Game

In January 2016, our first call came from Vanderbilt, asking us to visit their hospital for testing and to get listed on their kidney transplant list. After many visits and setbacks, we finally made the Vanderbilt kidney transplant waiting list in April 2017. The next call came from UAB to go through the testing process, and we were added to UAB’s kidney transplant waiting list in August 2016. The next call came from Emory. We went through the process but did not pass all the requirements to make their list, which was very disappointing. In April 2017, we got a call from the University of Mississippi regarding testing at their facility, and Chad made their kidney waiting list in July 2017. Now what? You wait! You wait for your name to be called. Some of these hospitals’ waiting lists are 3-8 years long.

In March 2017, Chad’s kidney function reached the point at which he had to begin dialysis. He wanted to continue working, so he started dialysis during the day before switching to night dialysis three nights a week. Currently he is doing dialysis treatments at home five days a week.

So as you talk to someone who is a caregiver, remember that caregivers are working very hard to make things as normal as possible for everyone around them. Don’t be afraid to offer help! If the caregiver is anything like me, the face of caregiver is one of the many faces he or she will wear that day!

Learn more about UAB Medicine’s Comprehensive Transplant Institute and how you can share the gift of life by becoming an organ donor. Read more about Chad’s journey to a kidney transplant on his Facebook page.