This year, we are publishing several print and digital articles about caregivers, each with different backgrounds and the challenges they face. This is one of those stories.
Department of Maryland, Unit 91
64 years old
Caregiver for son, David
From a young age, Cynthia Adams-McGrath took care of her younger siblings while her parents worked, ultimately preparing her for a life of what was to come.
At 26 years old and only six and a half months pregnant, she was rushed from her hospital in Cambridge, Md., via helicopter to Fairfax, Va., where hospital staff were better equipped to handle a baby born prematurely. David came into the world at 2 pounds, 7.5 ounces in 1983.
“As you can well imagine, that was a shock,” she said.
When David came home from the hospital, he weighed only 5 pounds. He was so small, he had to wear a Cabbage Patch Kids doll outfit because there weren’t infant clothes that size.
As a baby, Adams-McGrath noticed David wasn’t hitting developmental milestones as the months passed. At 18 months old, he was evaluated by several professionals, including a neurologist, psychologist, and orthopedist. He then received a formal diagnosis of cerebral palsy (CP).
According to the Centers for Disease Control and Prevention, CP is a group of disorders that affects a person’s ability to move and maintain balance and posture. Additionally, many also have related conditions such as intellectual disability, seizures, problems with vision, hearing, or speech, changes in the spine, or joint problems. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.
Adams-McGrath knew nothing about CP and went to her local library to learn more.
“I had my hands full to deal with what I was dealing with,” she recalled. “I had very few friends. At that point, I was not one to reach out. I was shy.”
Learning more, she found it affected people differently.
“It can be as slight as a limp and as fully involved physically as David is,” she said. “He uses an electric wheelchair. He cannot do anything for himself but operate his wheelchair. I am a complete caregiver for everything else.”
David also has spastic quadriplegia, which affects both arms and legs and often the torso and face.
To provide Adams-McGrath assistance, a paid caregiver comes in to help five days a week for two hours. He has been with David for 19 years.
“David hasn’t had the experiences of a man who is almost 38 years old,” she said. “But he is wildly witty, intelligent. He is very amazing.”
David hears his mom’s comments, laughs, and adds his two cents about himself: “I’m a wonderful guy to be around and I’m not bad-looking either.”
Every day in the life of caregiving is different, but there are some basic tasks Adams-McGrath regularly completes. There is an intercom in David’s room to let his mom know when he’s awake. She helps with several tasks throughout the day that many people take for granted being able to do on their own — getting him dressed, cooking, feeding him, changing the TV channel, and helping him with the bathroom.
“She’s a good cook, good parent, and good at everything,” David said about Adams-McGrath. “She cooks the best spaghetti.”
Although Adams-McGrath certainly enjoys time with her son, like many others who are caregivers, it can be mentally and emotionally draining.
“I feel like I’m a positive person,” she said. “Some days are frustrating, and I wish things were different. I feel fortunate I can talk to David, and he can understand. This is not about him; I am just frustrated. Some days I do wish he was different, but I know that God gave him to me the way he is and he’s a blessing. I wouldn’t be human if I didn’t feel sad occasionally. Every parent has dreams for their child, and this isn’t how it would be. But we were chosen by God for each other.”
Her son has ultimately helped her in some dark times of her life.
“David saved me,” she said with thick emotion. “I had depression when I was in my mid-30s. I didn’t think I could come out of it. David gave me purpose. I had to take care of him even though I didn’t feel like taking care of myself. Something inside of me said that taking care of him will get me through what I was feeling.”
Like most caregivers, those who care for children with special needs usually take care of themselves last.
“They put the needs of their children ahead of their own,” Adams-McGrath said. “Then they realize they have to maybe have extensive dental work done as they have dental health on the back burner. Or they haven't been to their primary care physician in years. It isn't that they don't care for themselves; it is so overwhelming to care for their children. Surgeries, meds, doctor appointments, as well as day-to-day care. If they have other children who are non-disabled, it can be so overwhelming. It took me about 20 years to realize I needed to take care of myself physically, emotionally, and mentally. It was a slow process, and I received professional counseling to help me.”
Although caring for David is Adams-McGrath’s No. 1 priority, having been a caregiver for a couple decades now, she eventually understood the importance respite time has in her life so she can continue being the best caregiver she can to her son.
For time to herself, she works on her book, often walking to a nearby river to write, and participates in an exercise class twice a week, among other activities.
“Caregivers have to care for themselves, or they burn out,” she said. “I can’t afford to burn out.”
For those who are caregivers or may be someday, Adams-McGrath offers advice.
“Take time for yourself and be gentle with yourself because you are doing the best you can,” she said. “Be the best advocate you know how to be. Find the support where you can get it. Sometimes, I feel swallowed up in caregiving. I feel like I’m drowning. Every once in a while, I feel like I can’t breathe. When I get to that point, I do what I need to do for myself. It took me a while to realize I had to care for myself. It’s not easy, but it’s worth it.”
By Sara Fowler Staff Writer