Alison George and her sisters care for their mother with late-stage dementia.Alison GeorgeAlison George, 52, manages her mom's costly late-stage dementia care after caring for her late dad.Her parents saved money but lacked long-term care insurance, worsening financial burdens.George's mom moved to a Medicaid facility as savings dwindled, yet costs remain high.This interview is based on a conversation with Alison George, 52, who lives in Raleigh. George cared for her father, who died in 2023, and is now a caregiver for her mom with late-stage dementia. The costs of care have been astronomical for her, and she said her current situation is one of fear. This interview has been edited for length and clarity.I do project management in the print industry. I'm married and have two children, ages 14 and 12. I have two sisters who live here in Raleigh, and we work together to help manage my mom's care. Neither have kids, so they have been a little more flexible.My parents were college-educated. My mother was an elementary school teacher, and my father was an architect. They worked their whole lives but got divorced in 2001. My dad had dementia and died in 2023, and my mom was diagnosed with Alzheimer's a few years ago. She also has a condition called aphasia, which means she can't speak. When she does, it sounds like a baby babbling, and every now and then, a word will come out.They saved their money, had pensions, and were able to support themselves until these terrible diseases took away their ability to care for themselves and be productive members of society. We encouraged both of them to get long-term care insurance for quite some time, but they refused. They didn't believe that this could happen to them. But dealing with the frustration and anger makes me feel like I'm betraying them, so I try not to be angry about their situation. Are you paying for your own or your loved one's long-term care? Do you have thoughts to share about long-term care in the US? To share your story with a reporter, please fill out this quick form. My dad had Lewy body dementia. It got to the point where he hallucinated a lot. He would think people were breaking into his apartment and talk to them. His apartment was a mess, which was concerning because he had always been really clean throughout his life. He couldn't hold a conversation, and my sister, who had moved from Michigan, thought he hadn't eaten in quite some time. My sisters and I cared for him until we couldn't.To this date, my mom's long-term care has cost about $389,000 for her room and board between her last two memory care facilities since 2021, and that's not including medication, copays, therapy, and other care.I first became involved with her care in 2014My mom wasn't comfortable living alone, so my husband and I found a home with a guest house, which at the time was more like a tiny office building. It was about $45,000 to convert, which my husband and I paid for ourselves, seeing it as an investment in our home.I was her primary caregiver. She was still fairly independent and could write her own checks, drive her car, and run errands, but was inconsistent in taking her medication and keeping friendships. It was really hard for her to meaningfully engage with people. I often had to take off work to transport her to appointments. Looking back, I recognize her declining steps, though at the time, I may not have wanted to admit that was what was happening.Toward the end of her time living with us, her personality changed. She felt I was holding her hostage, and she wanted to live somewhere else where she could be "closer to people." She would call me names, and there was nothing I could do.She moved across town to an independent living facility by herselfIn early 2019, she moved to an independent living facility for $2,400 a month and lived there for 19 months, which she paid for out of savings. During that time, I had little contact with her, and she completely stopped taking all of her medications. A few residents called me expressing their concerns about her. She became very depressed, and just after Thanksgiving in 2020, she was found in her apartment unconscious on the bathroom floor. She had gone so long without taking her medication that she had blood pressure and thyroid issues and was admitted to a hospital.I had tried calling her multiple times, but by then, she didn't know how to use a phone anymore. It was very hard to stay in touch with her. When she was released from the hospital, I had to make her life decisions. We brought her back to the converted apartment at our home. My sister moved in with her so she could be monitored.At that point, she didn't have the capacity anymore to know how to take her medication. She continually thought somebody had stolen her car. When she wanted to make coffee, she would put water in a coffee mug and heat it up on the stove.My sister, who had moved back from Michigan, decided that she would
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