Challenges of Caregiving: A Personal Experience

This conversation features Alison George, a 52-year-old from Raleigh. After caring for her father, who passed away in 2023, she is now focused on her mother, who suffers from late-stage dementia. The financial burden of caregiving has been overwhelming, leaving her in a state of anxiety. The following account has been condensed for clarity.

I work in project management within the print industry. I’m married and have two kids, aged 14 and 12. My two sisters also live here in Raleigh, and together we help with my mom’s care. They don’t have kids, which allows them a bit more flexibility to assist.

Both my parents had college degrees; my mom was a teacher, and my dad was an architect. They worked hard throughout their lives, yet divorced in 2001. My father battled dementia and died last year, while my mother was diagnosed with Alzheimer’s a few years prior. She also struggles with aphasia, which leaves her unable to speak coherently—sometimes, it’s like she’s babbling, with a few words breaking through.

My parents had saved a good amount and had pensions, so they managed well until these diseases stripped them of their independence. We had long urged them to invest in long-term care insurance, but they declined, thinking it would never happen to them. It’s frustrating, and sometimes I feel guilt for my feelings of anger towards their situation.

My dad suffered from Lewy body dementia, which led to hallucinations. At one point, he believed people were breaking into his apartment. His living space became disheveled—quite a change since he was always tidy. He couldn’t hold a conversation, and concerns arose when my sister, who moved from Michigan, noticed he hadn’t been eating.

Since 2021, my mom’s long-term care has already cost around $389,000 for room and board in her two memory care facilities, without even counting medication or therapy.

Getting Involved in Care

I started overseeing her care in 2014 when she was uncomfortable living alone. My husband and I converted a small office space in our home into a guest suite, costing us about $45,000—an expense we viewed as an investment.

Initially, I was her primary caregiver. She could still perform basic tasks like writing checks and driving, but she struggled with medication adherence and maintaining friendships. I frequently had to take time off work for her appointments. Reflecting on it now, I can see her gradual decline, although at the time I hesitated to acknowledge it.

As time went on, her demeanor shifted. She felt I was not allowing her independence, claiming she wanted to be “closer to people.” The name-calling hurt, and there was little I could do.

A Move to Independent Living

In early 2019, she moved to an independent living facility, costing $2,400 a month, which she funded from her savings. During that period, our communication was minimal, and she stopped taking her medications altogether. Some residents reached out to express their concerns. Sadly, she fell into deep depression, and right after Thanksgiving 2020, she was discovered unconscious in her apartment, having neglected her health.

I tried contacting her multiple times, but she had lost the ability to use a phone effectively. When she was discharged, major decisions fell to me; we brought her back home, and my sister moved in to help.

She could no longer remember how to take her medications and was convinced someone had stolen her car. Simple tasks turned challenging; she would try to make coffee by just heating water in a mug.

At that moment, my sister decided to focus on Dad, while I concentrated on Mom, as trying to manage both was overwhelming.

Six months later, she transitioned to a memory care facility in July 2021, after living with us. Shortly thereafter, we also moved my father to the same facility—though they were placed in different wings. He declined quickly, making it tough to devote the necessary attention to him. I was also juggling a full-time job and raising two kids during this time. Unfortunately, we had to move my father to a Medicaid facility due to financial constraints, and he passed in 2023.

My mom remained at the memory care facility until January 2025, when her savings could no longer sustain the $7,800 monthly cost. We relocated her to the same Medicaid facility where my father had resided. While she doesn’t qualify for Medicaid, the private-pay rate was more manageable, and this place was the best option within a reasonable distance.

Current Situation

At this point, my mom resembles an 82-year-old infant. She can’t feed herself and, although she can walk, the facility prefers she use a wheelchair due to past falls.

She briefly entered hospice care but improved enough to return. Now, her $4,000 monthly income and savings cover $5,500 of her care costs. My sisters and I monitor her situation closely, visiting regularly since she can’t advocate for herself. We hold her power of attorney, allowing us to make necessary decisions.

I honestly don’t care about inheritance; what matters most is my mom’s well-being. After my dad’s death, we inherited almost nothing. Each month, I review her finances; it looks like she can afford care for another two to three years before the money runs out.

It feels incredibly unjust that she lives without a meaningful existence, even though she receives decent care. It infuriates me to think that my parents have been reduced to mere financial figures.