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.
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 2014
My 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 herself
In 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 focus on our dad, and I would focus on our mom, because it was just too much for both of us.
Six months later, she moved into a memory care facility in July 2021
After living back at home with us for six months, she moved into a memory care facility in July 2021. Within eight weeks of that, we had moved my dad into the same facility. We made sure they didn’t live in the same wing. He had declined rapidly as well, and it was such a struggle not to be able to focus on him. At the same time, I was working full-time and raising two kids. We moved my dad to a Medicaid facility due to his financial situation, and he died in 2023.
She stayed in the memory care facility until January 2025, after which her savings could no longer cover the cost. It was about $7,800 a month. We moved her into the same Medicaid facility my dad had lived in. She doesn’t qualify for Medicaid, but the private-pay cost was lower. It was the best we could find without driving two hours away.
Since then, my mom has continued to decline
She’s an 82-year-old infant at this point. She cannot feed herself. She can walk, but the facility prefers her to be in a wheelchair for safety reasons because she has fallen at times, fracturing vertebrae.
She was briefly in hospice care for a few weeks, but she got better, so she went back to the Medicaid facility. My mom’s $4,000 monthly income and savings cover the $5,500 out-of-pocket cost of her care each month. My sisters keep tabs on her, and we have a regular visiting schedule. She has no way to advocate for herself, so someone has to be with her. We have her power of attorney, so we can make decisions.
I don’t care about getting an inheritance, but I want my mom to be taken care of. My sisters and I got practically nothing when my dad died. What else were we supposed to do? I look at my mom’s finances every month. She has about 24 to 30 months left of care before we run out of money.
She does not have a meaningful life, and it’s unfair. She does receive good care, but it’s a shame it’s so expensive. I’m incensed by the fact that both of my parents have been reduced to a dollar amount.
