I Love My Mom With Dementia. I Don’t Love Being Her Caregiver.

This as-told-to essay is based on a conversation with Angela Davis, 65, who lives in New Orleans with her 87-year-old mom with dementia. She said her mom’s at-home care is upward of $7,000 a month. This interview has been edited for length and clarity.

My mom and dad were never married. I grew up in New Orleans and went to an all-girls Catholic high school. My mom was a school teacher and bought a house in her 30s, which I recently transferred to my son. My dad was a math teacher, but left that to help his dad run a furniture moving business.

I went to Fisk University and moved to Texas, then Connecticut. I did my clinical fellowship at Yale University and had a son. I moved back to New Orleans because I didn’t want my grandparents and parents to be strangers to him. I worked as a licensed clinical social worker in schools before retiring. I’ve also earned income from real estate, as I own over a dozen rental homes.

I started noticing changes in my mom’s behavior

I have no brothers or sisters, which has made the last few years challenging. My parents were independent for a while. About eight or nine years ago, I started to notice some changes in my mom’s behavior. One time, I was following her car, and she missed the exit to go to her house. Another time, she called the police because she said someone had taken her dog from her car, even though the dog was home.

Then, it all accelerated. She went around telling people that I was trying to steal her house and her money. She changed the locks, which I found out when we couldn’t get in touch for three days. I literally broke into the house, and she was on the floor. She spent about two weeks in the hospital, though her services were extremely limited because she had stopped paying her Medicare premium. This was about two and a half years ago. She was diagnosed with dementia in February 2024.

I briefly put her in a facility, but it didn’t work out. The facility stated that my mom needed services that she hadn’t needed when I dropped her off. They were willing to provide additional services if I would pay $2,000 more. That being the case, I brought her back home with me, where she’s been ever since. I’ve tried to do as much as I could to make her comfortable.

She didn’t want caregivers

I’ve had a couple of caregivers. The last one was really good, but my mom didn’t want her there anymore. In the past three months, she would roll paper up and light it because she’s been craving nicotine. I had to take the knobs off the gas stoves at my house.

My mother’s godchild volunteered to stay with her for free. I’m going to give her $500 a week. It’s a struggle, though, because I inherited my mom’s dog, so I have two dogs, two jobs, and a mom with dementia who is depressed on a regular basis. I’ve had to worry about her roaming, too. She walked a block from the house and fell, and one of the neighbors called an ambulance, which cost $4,000.

Her condition is worsening, and she’s not taking in much food. She will not get out of bed. She sits on the sofa, and she’s up all throughout the night. Since she’s been out of the hospital, I’ve been sleeping on a loveseat downstairs. It’s not good for me because I am 65, but it’s what I have to do.

She can tell you my name, my son’s name, her goddaughter’s name, and her Social Security number. If you ask her on a Monday who her favorite president is, it’s Barack Obama, but if you ask her on Tuesday, she’ll tell you she doesn’t know. She can’t respond to questions about current events, but she can tell you about her condition.

She’s aware enough to know that something’s wrong, though she’s still in denial about her dementia. Her mother had it, and she and her sister took turns caring for her until it became too overwhelming. They put her in a facility, and she didn’t last long there.

We spend about $2,000 a month on her care

She only brings in $3,200 a month, but we spend about $2,000 a month on care, and the upkeep on the house is about $5,000 a month for electricity, taxes, insurance, alarms, and her car. Her money doesn’t cover it, so I do have to help her out. This doesn’t include food, new clothes, or other day-to-day things. At the end of the day, she pays 60%, and I pay 40%.

I continue to work, partly for my own mental well-being. The money is not going to make or break me, but it never hurts to have more. It gets me out of the house and takes me out of caregiving for a few hours.

I’ve also taken a few trips for myself. I went to Jordan, Lebanon, and Tunisia. I took a trip with my son to Rome.

There have been a few times when my son has come from New York to help me, even if it’s just cutting the lawn. He helped her move everything out of her facility, and he’s really stepped up. I do some of this to model for my child. I will want him to do his best to take care of me. But I’ve always had the attitude of not waiting for the diagnosis to live. You live now.

The other day, I was exhausted at night. I’ve never been a nap person, but I fell asleep on the love seat. When I looked at my phone, it said 7:05 the next day. I rushed to get ready for work, and the dogs were looking at me. Even my mom had asked me, “What’s wrong with you?”

For reference, I’m usually up by 4:30 a.m. at the latest because I have to commute 40 miles one way. I feed and walk the dogs, and it takes me 30 to 40 minutes to get her up and change her clothes. I’m grateful I have flexible settings where I’m not punching in a clock because otherwise I’d be unemployed.

I get off work at 2:30 p.m. and home at 3:30 p.m., though sometimes I have to show an apartment. I make sure my mom takes her medications. She has struggled with eating, and sometimes she’ll have food and not remember it 15 minutes later. I’m usually asleep by 11 p.m. The weekends are a little more relaxed.

Even though I’m a social worker, I’m not that kind of caretaker. I’m not the “I can wipe your butt and brush your teeth gladly” kind of person. Will I help her do this? Yes. But I don’t enjoy it. I’ve already made clear my own wishes, which is to not to go out like this. I wouldn’t wish this on many people. Of course, it’s harder for my mom than it is for me.

It’s death by 1,000 cuts, and in this case, you could say death by 1,000 memories every day.