This as-told-to essay is based on a conversation with Lori Bufka, 64, who is caring for her mother with dementia in Arizona. Assisted living became too expensive for her mother, so Bufka moved her into a trailer next to their home, where her mother would have enough space and safety. This interview has been edited for length and clarity.
I was a college professor and retired from a community college in Florida. I raised two boys, both of whom are married, and I have five grandchildren. I had retired to do van life with my partner, who has been with me for seven years. I realized, though, that you can only do so much van life before you need a place to come home to. So we bought a tiny house in Arizona.
I’m an only child, and my mom was in assisted living in California. When she went into assisted living, her veteran benefits and Social Security were enough to cover the cost of her care. She was in assisted living for over seven years, and she had sold her house and had some savings. The rate kept going up and up, and it was draining her savings.
The cost was about $4,700 a month, and it was about to go up to $5,200, which was a couple of thousand dollars more than what she earned.
She’s 88, and I wanted to keep her there as long as she could. When I got the notice that the rate was going up again, and that they were going to raise her quality of care cost because her dementia was getting worse, her savings were down to almost nothing. They said that she would be moved to a dementia unit with four other people, and I didn’t want that to happen to her.
Additionally, as her dementia got worse, she would get so many scam calls. She was savvy her whole life and worked as a lead for a law firm and a real estate agent, but it came to a point where I had to turn off her phone.
It was cheaper to take care of Mom at home
My partner and I decided that we could probably take care of her. It would be a lot cheaper. We started making the moves to bring her here so that I could take care of her. I brought my mom in to live by us in November.
There wasn’t going to be room for her and my partner, so I had to give her a little model home in the same trailer park. Hers is about 700 square feet and is about a minute’s walk from me. There are a lot of older people here, and the owner keeps a good eye on everyone. I knew that she wasn’t going to be with me, but she needed care as if she were.
The trailer was in the low five figures, and we bought it using two-thirds of her savings and one-third of my savings. The rent for the space a little over $500 monthly. It’s so much cheaper this way because my partner and I split the caregiving. Her utility bills run about $200 monthly in the winter and $70 in the summer. Caring for her started to become a little much for me, but because we’re in the mountains, there aren’t many home health organizations here, and none take her insurance.
She went into hospice care, and we hired someone to come for a few hours a week. It was supposed to be $37 for two hours, but when I got the bill, they tacked on mileage, so it became $92. We figured it wasn’t worth it, so now hospice volunteers visit every now and then, and hospice covers medically necessary appointments. We know we’re probably going to take care of her until she dies, unless she gets to a point where I can’t take care of her.
It was a huge change in our lifestyle
We haven’t been traveling since November, and I haven’t been away from her for more than three hours at a time. My mom is deaf, and it would’ve been challenging to deal with that from afar.
My mom is somewhat independent still. She can dress herself and go about her day. I wake up every morning and make sure she’s still in bed, then I turn on her coffee maker. I bring her breakfast over and leave notes about what she should do, like how to use the microwave. I check on her every half hour until she finally gets up. I come over before lunch to give her pills, eat lunch with her, and then sit with her until the afternoon, when she watches TV by herself. She can’t cook dinner, so my partner cooks all her meals, and we bring them over.
The trailer has a bedroom at the back, then a small bathroom, kitchen, and living room. The rooms are big enough for her to guide her walker through, and because of how narrow it is, it lessens the fall risk. They had an old-fashioned bathtub that you had to step over to get in, but the woman who owns the trailer park hired a guy to lower the height. We also had to install railings on the porch. The kitchen has an electric stove, which is great because a gas stove isn’t good when someone has dementia, because they can accidentally light a fire.
Tech has helped me take care of her remotely
One of the biggest nightmares is that people with dementia can’t work the TV and telephone. She got to the point where she could barely use the remote, and she would start pushing buttons and would not stop.
I had come across JubileeTV, a TV system that lets you change channels remotely. The price wasn’t prohibitive for us. The Jubilee remote replaced the Roku remote and came with a cover, so the buttons she can actually press are limited to volume and channels. If I’m out at the store, I can use the telescope function to see what she’s done with the TV and get it back to what she wants to watch.
I often call her, so it comes up on the TV, and she uses closed captioning so she can read what I’m saying. The app has an automatic connect function because my mom wouldn’t be able to answer a call or find the buttons to do so. The communication function also allows my sons to call her, and her hospice nurses can do the same.
I have used the app’s drop-in function to look in and see if she’s OK. I use that in conjunction with Blink cameras to make sure she doesn’t fall. Those have been important because my mom has fallen a lot since she moved here. I probably check on her three or four times during the night and frequently during the day. One time, she put Dawn dishwashing soap in her glass of water because she wanted to add flavor, so I’ve had to stop her from doing unsafe things a few times.
I also have smart plugs from Alexa that let her control her radiator heater and other electronics. She has a cheap laptop that I put the Google Live Transcribe app on.
Tech has helped me in so many ways, and seeing her age at home has been somewhat stress-relieving.
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