Confused by Alzheimer’s, the old man mistook the caregiver for a stranger and tried to hit her with a determined hand. His daughter rushed into the room, panicked. But, the caregiver didn’t flinch.
It wasn’t Maria da Silva’s first time in such a situation — and it likely wouldn’t be her last.
For caregiver Maria da Silva, such challenging moments like these are part of the job description in long-term care.
Unlike hospital staff, caregivers providing long-term care at home often stay in contact with patients for months or even years. They become a steady part of someone’s life.
Sometimes, this means giving medicine or helping with treatments. Other times, it means dealing with fear or confusion from not only the patient but also from family members.
“And that’s why before coming into this profession, you have to first learn how to truly love another human being. Otherwise, how can you ever do this job well?” da Silva said.
Da Silva learned the emotional burden of the profession from her first patient.
She endured the long hours of medication, weakness and pain while the old woman battled cancer. When da Silva had to leave at night, the woman would object and threaten to throw herself out the window. While the caregiver understood the danger of the situation, the family didn’t take it seriously.
“That completely destroyed my mental well-being,” da Silva said. “Every day I would go home praying that she would be alive the next morning.”
The bond between the two was so strong that da Silva almost quit the profession when the woman passed away. However, da Silva found the strength to continue after realizing the significance of her role.
“If we, as society, continue to pursue a job only for the money, how will the people in this situation survive?” da Silva said. “One time, a patient with Alzheimer’s held my hand and whispered, ‘thank you.’ He couldn’t recall my name, but he knew I was there for him. That is what keeps me going, not my paycheck.”
In another part of São Paulo, Brazil, Sueli Vizioli, another dedicated caregiver, was sitting at a hospital bed for 28 days and nights, watching a woman slowly lose her battle with cancer.
She was there when the woman took her final breath, holding her hand while whispering a prayer.
According to Vizioli, dealing with grief is a common part of the job, but in this case, dealing with the daughter’s response was the most difficult part. When she delivered the news, the reaction was cold: buy the cheapest coffin, buy the cheapest flowers and tell the hospital that she was out of the country.
“I couldn’t believe it,” Vizioli said. “She told me, ‘It took her long enough to go.’ I remember feeling sick to my stomach.” She refused to do what the daughter asked. “I told her, ‘No, that is not my role. I won’t do it.’”
Unfortunately, Vizioli stated that these situations happen more often than she would like to admit. Families often distance themselves, leaving caregivers to bear all the emotional burden.
“You feel anger and disbelief,” Vizioli said. “But I have to pray and ask God to take those feelings from me. The next morning, I still have another patient waiting for me. If you hold onto the anger, you can’t keep going.”
As an alternative, Vizioli went to work in clinics seeking to share the emotional weight of the profession with colleagues, but she soon realized it wasn’t much better.
“In clinics, people are forgotten,” she said. “When the family comes to visit, everything looks perfect. But during the week, they don’t even put underwear on the patients.”
Vizioli kept her experiences from the clinics with her. The neglect she had observed drove her determination to approach caregiving differently. Over time, she grew to adapt and find meaning in daily situations, maintaining her commitment to be in touch with her patients even when she wasn’t working.
“You have to love what you do. If you think you didn’t connect with a certain patient, don’t stay. If you stay, you have to give all of yourself,” she said.
That’s something Maria da Silva understood, too. At the end of one of her shifts, the same man who had once tried to hit her because of his Alzheimer’s reached out again, this time just to hold her hand. For her, it showed the power of a consistent and steady love.
Vizioli has seen the same thing. Whether it’s being there when someone takes their last breath or keeping an Alzheimer’s patient calm for just a few minutes, she knows that what matters most is showing up with love.
The two women admitted that long-term care is emotionally challenging, physically demanding and often overlooked by others. But, they also acknowledged their work is more than a job — it is a mission to provide dignity, affection and presence where families sometimes cannot.