Kathleen Leitao received a call in 2013 that her 83-year-old mother, Irene, had fallen and broken her clavicle. With no questions asked, she immediately booked a plane ticket from Massachusetts to California to check on her mother.
However, it didn’t take her long to realize her mother needed more than just temporary physical care and assistance.
“She was an immaculate housekeeper, but the house was in complete disarray,” Leitao said. “She was also forgetting things. In 2012, my mother stopped driving, so in 2013, she would take a cab to the store or wherever. But it became a point where she got into the cab and forgot where she was going.”
As most loved ones would do, Leitao called her mother’s doctor regarding her concerns and other things she was noticing. After a few exams with a neurologist, Irene was later diagnosed with dementia.
“I spoke with my other sisters and told them that I needed to bring her back with me to Massachusetts and figure out what we’re gonna do with mom,” she said. “She can’t live here alone anymore. It’s not safe.”
Taking on familiar responsibilities and learning to make sacrifices
After Irene was diagnosed with dementia, it was almost instinct for Leitao to become her mother’s primary caregiver. That’s in large part because she has more than 44 years of experience as a registered nurse.
“I’ve always assumed the role of taking care of others and helping others; that’s probably what led me also to taking care of my mom. It’s always just kind of been my way with life,” she said.
Although her new role was somewhat “familiar,” Leitao said that contributed in some ways to her becoming the designated daughter for her mothers’ care—which often made her feel alone during the process.
“I do have other siblings (only one lives in the same state as me), but they kind of assume since you’re the nurse, tag you’re it,” she explained. “As soon as you say that you’re going to be the one doing it, you are the one doing it, and others don’t chip in. They may periodically, but not for any length of time that’s going to help you.”
The full-time responsibilities and lack of extra help caused her to make sacrifices in her life, including leaving her job even though she wasn’t quite ready for that.
While Leitao does not fault or blame anyone for her role, she cautions others who may be in similar situations: “Once you assume that role, that role is yours forever.”
Navigating the most challenging parts of caregiving
For most caregivers and loved ones, one of the hardest parts of caregiving, especially for someone with dementia or Alzheimer’s, is the emotional component. When her mother progressed with the condition, she lost her ability to do simple day-to-day tasks, experienced memory loss, and went through personality changes.
“For example, by four o’clock, my mom would become a different person. She would go to the window looking for her children, but I would tell her, ‘I am your child. I’m right here,’” Leitao explained. “She would respond and say, ‘No, I have five children. Why are you keeping me here?’ To me, that was more awful than anything else.”
Additionally, Kathleen struggled to find time to take care of herself because her mother required extensive attention and supervision, largely as her condition worsened.
“It’s kind of like raising a child because they become very childlike, so you have to find things that you know she likes in order to keep her occupied,” she said.
Her mother’s decline – including bouts of forgetfulness and aggressiveness – was something new that Kathleen had to learn how to deal with. Even though it took a toll on her emotionally, she relied on her husband and her faith for strength and for navigating some of the most challenging parts of her role as a caregiver.
“I found it very hard to take care of myself, I just didn’t have time. But my husband was here and was very helpful,” she said. “That was my saving grace, that he was able to help take care of my mom with me and calm her down.”
Have a plan and get educated
Looking back, Leitao said even though she was a nurse and had experience in care, she was not fully prepared for what the latter stages of the disease could present. She recommends that other families and caregivers get educated about the condition, how it progresses, and the best ways to care for someone with the condition before a loved one starts to show any signs or symptoms.
She recommends that other families and caregivers get educated about the condition, how it progresses, and the best ways to care for someone with the condition before a loved one starts to show any signs or symptoms.
Based on her experience, Leitao added it’s also crucial for families to discuss care, wishes, health, finances, power of attorney, and other matters with a loved one while they’re still able to communicate properly.
“Don’t wait. Try to find out as much as you can before they go through these different phases where they’re unable to communicate,” she said. “Before the stages get later and later, it’s best to know what to expect and try to get as much information ahead of time.”
Irene died two years ago at the age of 90. Ever since, Leitao has been taking time for herself, focusing on her mental health and traveling.
“Knowing that life is so short,” she said, “I try to live each day doing something that makes me happy.”