The Best and Worst Days: One Caregiver’s Journey

Cardinal Innovations Healthcare — November 30, 2020 — 4 min read
During her decades of caregiving, Sandra Brooks’ daily schedule was packed. Nearly 24-hours a day, seven days a week, Brooks would spend her time either caring for those in her home or working.

“I would get up in the morning, get their breakfast ready, and get them to their day support programs, and then I’d go to my fulltime job,” she said. “After work, I’d pick them up, come home, make them dinner, and then run their goals.”

For Brooks and her household, goals were the daily functioning activities they would practice most days. These could be things like learning to cook, do laundry, or clean their room. “These goals were usually run in the afternoon relative to their independence,” she said.

Since 1987, Brooks has been caring for those with disabilities while working full time. Though now she’s officially retired, Brooks still sometimes helps her daughters (both caregivers) with their workload.

“I do what I do for the disabled community because they literally saved my life. I was dying slowly from my divorce,” Brooks said.

Life Changes that Led to a Lifetime of Caregiving

When Brooks and her husband divorced, their two oldest children were in college. Her youngest was home with her. At the time, Brooks was working as the district marketing director for a national cosmetics company. The position required constant travel, which “you cannot do with an eight-year-old,” Brooks said.

In the middle of the 1987 stock market crash, Brooks decided to take a pay cut to settle down in one place. To keep her mind off her divorce and her tight finances, she started caring for a young girl with behavior issues. She soon gained a reputation for her patience and compassion.

Taking on the Toughest Caregiving Assignments

Meanwhile, within the disability community, one woman was searching for a caregiver. Brooks’ colleagues pointed the woman in her direction.

Brooks knew little to nothing about the young woman who needed care (we’ll call her Riley*) before she was brought into her home. She only knew that Riley had five seizures a day, struggled with incontinence, and was verbally and physically combative.

When Brooks agreed to care for Riley, the woman seeking Brooks’ services was skeptical. She asked why Brooks agreed to care for Riley so easily.

Brooks replied, “Well, it sounds like I need her more than she needs me. Right now, I need something else to think about—and she sounds like just what I need.”

After a month, the program that placed Riley with Brooks called for an update. Brooks was Riley’s only caregiver that had lasted that long. The program asked Brooks how she did it. “Everything that (Riley) needed, I have been trained for throughout my life,” Brooks said.

Riley stayed with Brooks for 18 months until she was placed into a foster home. After that, Brooks became known for her strength and resiliency. Because of her reputation for patience, she was often given the toughest cases. For example, Brooks would later care for a young man who was verbally abusive and even used racial slurs toward her, but Brooks still cared for him with that same level of compassion she had become known for.  

Caring for the Best of the Best

Brooks’ favorite memory involved caring for a little boy who didn’t have use of his arms or legs. The boy would often express his fondness for her. Like little boys sometimes do, he asked her to marry him.

“When I would pick him up in the afternoon, he would ask me how my day was—like a caring husband would,” she said. “And one day, he asked me if I would marry him. So, I responded, ‘What am I going to be, your grand-wife?’”

Of course, Brooks said she couldn’t marry him, but she thought it was sweet.

What Caregivers Want Non-Caregivers to Know

“There is very little time and a lot of stress,” Brooks said. “Sometimes you run close to burnout, or you ‘burn up.’ You suffer from ‘caregiver fatigue.’”

Caregivers can face insensitivity from others. One non-caregiver said to Brooks that a mother shouldn’t be paid to care for her own child, even if the child had severe physical and mental disabilities.

It’s all about empathy, Brooks said. “I just wish some of those people could walk in their shoes.”

*The name and identifying details have been changed to protect the privacy of this individual.
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