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Celebration For A Cure

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In 2018, Real Housewives of Atlanta star NeNe Leakes opened up about the ways in which husband Gregg Leakes’ Stage 3 colon cancer diagnosis had changed their lives.

“It’s definitely not easy,” she told The Daily Dish. “The moment we found out he had cancer, everything about our life changed. It was just hard. It’s hard on him. It’s hard on me. It’s hard on our entire family. It’s hard being a caretaker. It’s hard being a patient. It’s a lot of decisions you have to make, so it definitely has not been easy. It’s been probably the hardest thing — it really takes over.”

That’s not an understatement. Those who have been in the position of having to care for a loved one affected by disease, disability, mental illness and old age often share a similar story of how offering assistance to someone has taken over their lives. Unlike Leakes though, many people who are in the position of caregiver have held that responsibility for many, many years, and it takes a lot of fortitude and compassion to get through it. We talked to a few for National Minority Health Month.

In the case of Cassandra Porter, a Phoenix resident currently caring for her husband, it has been a long-term effort. Her caregiving experience first began when she was a teenager.

“When my father got sick with diabetes and, later, end-stage renal failure, I spent a lot of time taking care of him,” she said. “This meant accompanying him to medical appointments, making sure he was taking his medicine, ensuring he got to his dialysis treatments, and, ultimately, helping him with in-home dialysis care. Later, I moved out and started dating my husband. He has developed a rare brain infection that left him with multiple conditions, including seizure disorder and short-term memory issues. My previous caregiver training quickly kicked in. With my husband, I have to make sure he’s taking his medication. If he

has a seizure, I have to make sure he gets to the hospital.”

For 29-year-old Adrienne Henderson, she’s been handling such responsibility since she was a child.

“When I was in sixth grade my mother was diagnosed with multiple sclerosis. At that time I started caregiving for her,” she said. “It was difficult to watch my mom get sick over the years. I felt like I was her parent versus her parenting me.”

For Eboni Green, the 45-year-old Omaha native has been caring for one loved one after another for some time, but thankfully, assistance has helped her stay encouraged.

“My first experience occurred in 2009 when my daughter was diagnosed with a brain tumor,” she said. “She was 16 at the time and we were devastated by the diagnosis. As a result of the tumor, she started having seizures even though she was taking medications to prevent them. After countless doctor’s visits, consults, and hospital stays, we decided that it was in her best interest to have the tumor removed. She has been cancer free for ten years now.”

“The past three years my husband and I were caregivers for his mother who suffered a stroke and other complications after being infected by a virulent strain of the flu,” she continued. “She was in the hospital for a time and then moved to a long-term care setting to receive rehabilitation services. Her goal was to move in with her mother after therapy. Together my husband, sister-in-law, and brother-in-law made sure mom and grandma were cared for properly. My mother-in-law passed away in March 2018. The grief we experience as a family is tremendous.”

“My husband and I are now caregivers for his grandmother,” she added. “He takes the lead in caring for her, but I am here to support her and assist with medications and helping to explain medical issues.”

All three of these women are part of the Embracing Carers network of caregivers, an initiative of EMD Serono in collaboration with leading caregiver organizations around the world to increase awareness and discussion about the often-overlooked needs of caregivers. They seek to provide support to others who find themselves not only stressed out, but physically suffering from the impact of putting the necessities of their loved ones first. African Americans are reportedly 13 percent of Americans identifying as individual adult caregivers, and women are more at risk of the health effects of having this role, so these stories are more important than most of us realize.

For example, for Green, she found her weight increase and her blood pressure skyrocket in her caregiving experience, among other health issues.

“When I was caring for my daughter, I gained about 20 pounds and had increased anxiety,” she said. “Once my daughter was on the mend, I lost the weight and was on a healthy track again. Then my mother-in-law had a stroke and has now passed away. This time around I am about 40 pounds over my normal weight. Sleepless nights are a normal occurrence. My increased weight has impacted my blood pressure. I know that I need to take better care of myself. I am working on it.”
But effects are not just physical. For Porter, her other relationships faltered because of her commitments to her husband.
“The stress of the situation impacted my relationships,” she said. “I’ve lost friends because of how often I’ve had to cancel plans, and many in my life did not understand the full weight of the situation until they were around to witness a medical crisis like one of my husband’s seizures.”
As for Henderson, her aspirations had to be put on hold to be present for her ailing mother. As she put it, “I made a commitment to myself that I would graduate with a bachelor’s degree. That goal has not yet been met.”
With all that being said though, the women want people to know there are resources and overall, there is hope for those who take on the responsibility of being a caretaker for their loved ones. There are communities online that, in Porter’s case, she has been able to find solace in while caring for thirtysomething husband.
“I was able to find a community online that offered support. It was helpful to realize that there was a community out there,” she said. “They may not deal with the same disease processes, but they understand the issues caregivers face in a way that my friends and even my family didn’t.”
On top of that, Henderson recommends that people do their best to be patient and understanding, while also ensuring time is carved out to live their own life and see out their goals.
As for Green, she said you can’t go wrong when you have a circle of people you can seek assistance from that aren’t via the computer. It doesn’t have to just be family or friends, by the way.
“I am on my third caregiving experience now, so I would suggest asking for and accepting help,” she said. “There is no way that I wouldn’t be burned out by now if my family didn’t work together and support one another. In fact, I say ‘there is honor in asking for help.’ Invite family, friends, professionals and your faith community to help you as you care for your loved one. Take time to identify your gifts as a caregiver and get help with the things that you are not comfortable doing. Your longevity and the health and well-being of you and your loved one depends on asking for and accepting help.”
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