I used to work in long-term care. When my mom needed memory care, that experience helped me navigate the costs.

• Aurora McKenzie shared how planning and Medicaid eased her mom's costly memory care in Illinois
• McKenzie sold her parents' home and assets to cover nursing and memory care expenses
• Amid grief and her husband's cancer, she urges caregivers to seek support groups and self-care

This as-told-to essay is based on a conversation with Aurora McKenzie, 47, who lives in Illinois. McKenzie cared for her mother, who had lived in a memory care facility in the last two years of her life. She said planning ahead helped her family mitigate many of the long-term care costs. This interview has been edited for length and clarity.

I had to handle all of my mom's financial management while she was in care. I also used to work in long-term care.

My career has largely been in the accounting realm. I've held a variety of roles ranging from staff accountant to CFO of a long-term care company. I'm currently the director of human resources at a law firm.

Right now, it's just my husband and me at the house. I have two children, a sister, and a bunch of nieces and nephews. But before my dad died in 2024, we cared for him at his house. We also cared for my mom for two months before she went into memory care in 2024.

My parents were self-sufficient until 2024

My parents met while serving in the Navy. My mom did weather observations for the Navy, and my dad was a Navy airplane and helicopter mechanic. My mom worked as a medical assistant before returning to weather observations for airports. My dad worked for American Airlines as a chief head of inspectors and eventually landed an airline mechanic role. They both retired early because of various disabilities.

My dad was diagnosed with cancer, and he worked part time until his treatments became too much. My mom had multiple sclerosis but was functioning. Until 2024, my parents were self-sufficient, though they couldn't drive very well. The caregiving was minimal, mainly checking in on their payments and making sure they were fine.

In 2024, my mom had a massive stroke. My dad did not know how to process that. The nurses said that my mom would not be allowed to go home with my dad. My sister wasn't in the position to take care of my mom, so she temporarily went to a neurocare unit and was transferred to a nursing home.

My mom's memory never really recovered

There was a short period that Medicare paid for a skilled nursing facility. During that time, she went from not being able to speak at all to being able to speak some. She regained function in her arms and hands. She was able to stand with assistance. Her memory never really recovered after that, and her short-term memory took a major hit. She frequently thought it was the 1980s.

My sister brought her to me because she felt our mom could be left at the house while I was working, and I could hire someone when I was in the office. When my mom came to stay with me, though, that wasn't the case.

She didn't realize that she wasn't in Michigan and that we were in a busy area, so she couldn't just open the door and let the dogs out. She couldn't remember that she couldn't walk downstairs. She became very combative about baths and other things she could no longer do on her own. She would fall when we weren't there to help.

I couldn't let this happen. When she had come to stay with me, my dad was still alive, and we were working on getting her approved for long-term care Medicaid. States like Illinois have a publicly available reimbursement rate for long-term care services.

We were gathering information on their bank accounts, assets, and everything under the sun. In Illinois, you can be approved for Medicaid if your spouse is still alive and living in the community, provided that spouse is staying in the house and has one car. Illinois also allowed my mom's Social Security money to go to my dad to pay for the house and groceries.

Mom got $80,000 from Dad's life insurance

Throughout this process, he was getting exhausted. He had a massive heart attack in November 2024 and died. Mom received about $80,000 from Dad's life insurance because he had taken out a loan against it to pay for some of Mom's other medical bills.

Mom had gotten provisionally approved for long-term care Medicaid and got into a memory care unit near me. She received Medicaid coverage for only 4 months, and the rest of the time was private pay. You can burn through $100,000 in less than a year, and most people don't realize that.

We had to get the house appraised and sell it for fair market value. I sold their vehicle and consolidated their bank accounts. I also coordinated payments between the VA, Medicare, Medicaid, and private pay. They didn't have any other retirement or assets left for them.

That account paid for her care facility and any bills that weren't covered by insurance. I visited the facility just about every day to check on her. It helped that I've worked in long-term care before, so a lot of the terminology and treatments were somewhat familiar to me.

I worked as a business office manager for a supported living facility, and we accepted Medicaid as a payer, so I understood almost everything. I've also done tax prep in the past, which was a huge help when managing my parents' taxes. My pastor was the one to tell me caring for my mom at home wasn't sustainable and gave me recommendations for facilities.

I haven't fully processed their deaths

I don't exercise a lot, but I did a lot of meditation, which helped protect my mental health. My dogs also helped me as stress relievers. My husband was there with me along the way.

I had visited a few days before she died, and she seemed fine even though she was sleeping during the day, which was odd. I came back the next day, and she was not well. Her face looked like she'd had another stroke. She couldn't move her arms or talk.

She was having sepsis from an infection. When I came back the next day, she was screaming in pain from an infection. I could hear it down the hall. They transferred her to hospice for pain management, and she died a few days later in August.

I still don't know if I've fully processed Dad's or Mom's passing. We recently found out my husband has esophageal cancer. Mom's funeral arrangements were drawn out because we had two memorial services, one near me and another in Michigan. The flag passing among veterans is extremely difficult.

It's really weird not having to visit her place anymore. I miss her as a person, but the person she was for the last two years is not who she was prior to her stroke.

I advocate for joining a support community, whether in person or virtual. Even though she wasn't diagnosed with Alzheimer's, I was a member of some virtual Alzheimer's groups. It's important to have a strong community because when somebody's in long-term care, the more people who can stop in to check on them, the better the outcomes.

It's also crucial to set small goals and track them. You have to give yourself grace during those tough moments and know that making small progress is still progress.

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