About six years ago, Russell’s family in Puerto Rico called him in Chicago. He needed to do something, they said, because his mom was forgetting things on the stove and showing other signs of cognitive decline.
Russell went to Puerto Rico to bring his mom back to Chicago, despite her resistance. “Honestly, there was nothing I could do because I work,” he says.
When she first moved in with him, Russell says, “She did not like the fact that her liberty, her freedom of being her, was kind of being taken away a bit.” Sometimes she didn’t know who he was, and she often thought she was still in Puerto Rico. “It was really hard for me because my mom was never psychologically evaluated, so it was something new for me and something new for her.”
When she started talking about suicide, he had to admit her to the hospital. It’s been difficult over the years to watch her cognitive decline, especially when she stopped speaking about a year and a half ago, Russell says. “I’m Puerto Rican, and all my life I’ve talked to my mom. I still have my mom’s voicemail.”
She now needs assistance with personal care, eating, and walking.
About a year ago, Russell’s husband, Luis, became his mother’s paid caregiver because Russell works full time and his two siblings, one of whom lives in another state, are not involved in their mother’s care.
“I am very selective when it comes to the care of my mom,” he says.
Russell explained that he had to do his homework to find resources. Initially,
he didn’t think having his mother in his home would work because of her difficult behaviors and repeated elopement attempts. He couldn’t sleep, so she moved into a nearby nursing home. Within three days, the nursing home staff said they could not handle her. Russell then took her to a psychiatric unit.
The psychiatric staff referred Russell to nonprofit social services agency Solutions for Care, which did an in-home evaluation. Russell worked with the agency to find someone who could provide care. Eventually, he found a woman he trusted.
“I’m Puerto Rican, and all my life I’ve talked to my mom. I still have my mom’s voicemail.”
“Once she came in the door, I could literally go to work with no worries,” he says. As his mom’s needs increased, the care was increased to 40 hours a week, but then the care worker had to leave due to her personal situation. At that point, Luis decided to take a leave of absence from work and eventually quit his job to become her full-time paid caregiver.
Now, Russell and Luis attend a support group in which Russell says he is a fixture. “All of the information I have researched I make available to those at the support group,” he says.
What Policymakers and Society Need to Know
“There are so many people here that are suffering because there are no resources,” Russell says. “I’m talking about homeless people, people with mental health problems, veterans with no or little benefits.”
For Russell, society needs a complete change in focus. He wants policymakers to understand that caregivers need help, resources, and care workers who under- stand how important the work is. He feels that home care companies should train people who are passionate about caregiving, not just anybody. And care workers need extensive training on how to handle people with mental decline because the role goes well beyond housekeeping and companionship.
Russell says he wants society to know that it is “essential that we keep other people in mind. It isn’t until you go through something like this that you understand exactly what it takes to care for an elderly person. Society needs to understand that this is real. The services need to improve.”
Caring for someone, Russell says, “is about the person’s well-being and providing dignity for that person. You have to be a special kind of human to do that.”