A Caregiver’s Sacrifice

By: Emily Wisner

In 2010, Kerri Leo’s mother was diagnosed with Alzheimer’s disease at age 63. The family quickly abandoned them, and Kerri was left to single-handedly care for her mother. “Overnight it seemed I had to manage her finances, do all the cooking, drive her everywhere, manage her medications, and arrange care for her,” she said. From the beginning, Kerri had to make many sacrifices for her mother’s care. “All of my vacation time had to be used to take my mom to the doctors,” she said. “I gave up running marathons because training for them took me away from my mom too much. I had to quit graduate school because I couldn’t spend enough time on school work and work full-time and take care of my mom. My life really started to revolve around my mom.”

Meanwhile, Kerri’s sisters were unsupportive and uninvolved. “Both of my sisters wanted to put my mom in a nursing home as soon as she was diagnosed, but I knew that was the worst thing for my mom, so I refused to do it,” Kerri said. “My sister Kris said that there was nothing wrong with my mom, and she was just acting out for attention. She refused to accept my mom’s diagnosis and refused to have anything to do with our family when my mom was diagnosed. My sister Kim still visited for a while, but hasn’t made an attempt to see or talk to my mom since Christmas 2013.” Kerri’s relationship with her sisters is now nonexistent. Her mother’s brothers have also withdrawn themselves. A couple of them visit on occasion, but two of them cut Kerri and her mother out of their lives completely. “Alzheimer’s is a very isolating disease, which is hard on both the patient and caregiver,” Kerri said.

Luckily, Kerri found a great support system in her friends. “My friends have been amazing,” she said. “Most of them are incredibly supportive and always there for me, but it’s hard that I often have to cancel plans because something happens with my mom, or I couldn’t go out when we couldn’t get a caregiver. It’s a lot like being a single parent, only it’s not as well understood.”

In 2014, her mother’s disease starting to progress more rapidly, and consequently, the financial burden increased. “I was being called home from work on a weekly basis because of some emergency with my mom,” Kerri said. “My boss told me I needed to ‘do something, like put her in a home.’” She decided to quit her job so she could take care of her mother full time. “I didn’t work for a year, which of course did affect me financially,” Kerri said. “When I did return to working full-time, I purposefully took a job that was a step down from my previous position because I needed to make sure I could be available more for my mom.”

That same year, Kerri made the difficult decision to move her mother into an assisted living facility. “It was no longer safe for my mom to live at home,” she said. “I had to baby proof the house. I couldn’t take a shower without her wandering away. She had to be watched at all times.” Even though this was the right choice for her mother, it was still extremely hard on Kerri. “It was the hardest decision I’ve ever had to make,” she said. “I felt like a failure and I constantly wondered if I was doing what was best for my mom, or just being selfish. I felt like I was letting her down.” To get through such a difficult time, Kerri relied on the support of her friends. “They took turns ‘babysitting’ me,” she said. “Every night I had someone different to go out with, so I wouldn’t be left home alone feeling guilty. I couldn’t have survived that time without them.”

At this point in her mother’s journey, the financial burden is overwhelming. “My mom has spent her entire savings on her care,” Kerri said. “We had in-home caregivers for four years before it got too dangerous for her to continue to live at home. She’s now in a nursing home that costs about $98,000 a year just for her care. Since her diagnosis, we’ve spent over $700,000 just on her care, which doesn’t include doctor visits, medication, or hospice.”

Throughout her mother’s journey, Kerri has found support through the Alzheimer’s Association. She worked for the Association early in her career, and she feels that it helped her to be more prepared. “As soon as my mom was diagnosed, I went on the Alzheimer’s Association website and read through what steps we needed to take to make sure she had the proper legal paperwork in order,” Kerri said. “I routinely would check back on the website and look at the seven stages of Alzheimer’s disease, trying to determine where my mom was.” In addition, she found the 24/7 hotline to be helpful. “When I needed advice on how to handle certain behaviors, or needed to know how to tell when my mom needed to be in a secure facility, I called the 24/7 hotline,” she said. “I was so grateful to have that resource available. It makes a difference just to know it’s there.”

Kerri wants other caregivers to know that although Alzheimer’s is incredibly isolating and misunderstood, they are never alone. “Most people don’t know that the patient will experience behavioral changes in addition to memory lapses, which are harder to manage,” she said. “No matter what, I think it’s important for caregivers to know there are resources available to help them. They don’t have to do everything alone.”

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