I moved back to my Louisiana hometown from Biloxi, Mississippi, in 2023 after 35 years on my own. It was the solution to two problems — I was newly divorced with nowhere to go, and my dad needed help caring for my mom, who had dementia.
It was supposed to be temporary. Respite care for him, refuge for me. A year or two, tops.
We almost didn’t make it through the first six months.
It was difficult at first
I was angry, hurting, and trying to figure out what came next. Moving back home felt strangely familiar, like being a teenager again. Unfortunately, I acted like one sometimes, too.
My mom and I struggled during those first months. I was trying to help, but she didn’t want my help. And while my dad appreciated the extra hands, he often found himself caught in the middle. I understood dementia intellectually, but emotionally, I felt rejected by my own mother.
We would make agreements about things like laundry schedules and a carved-out office space for me. I would carefully follow Mom’s wishes, but dementia often made them null and void. Mom would forget our conversations and become frustrated when things weren’t the way she remembered.
The laundry room became our biggest battleground.
If my clothes were in the washer, she would often become upset and insist she had “lost her house.” The clothes weren’t really the issue. Dementia was changing the rules, and the laundry room became the place where she most clearly felt she was no longer fully in control of her own home. It didn’t matter that I was her daughter; it felt as though another woman had moved into her space, and dementia made it difficult to understand I was there to help.
It took time, but I learned the new rules of the house
Over time, I learned to navigate Mom’s unspoken cues and emotional needs. A closed bedroom door meant she needed space. An open door often meant it was a good day. I became a quiet pair of hands in the background, lightening the physical load.
I learned when the kitchen fairy needed to sneak in after everyone was asleep to preserve Mom’s dignity. Most importantly, I stopped taking everything personally. For someone who had spent a lifetime wearing her heart on her sleeve, that was no small lesson. My mind had always understood dementia, but it took time for my heart to catch up.
During my second year back home, I began to understand the power of co-regulation. I had healed from the aftermath of my divorce, and I was experiencing a joy I had not known in years. It was spreading throughout the house.
The progression of dementia didn’t stop, but the atmosphere in our home changed. There was more laughter, more music, more outings, and more happiness woven into our everyday routines.
Dad and I became true caregiving partners. He felt comfortable accepting overnight assignments at work while I was at home with Mom, and I was able to travel when I needed a break from caregiving. I’d do all the cooking and cleaning, even stocking the refrigerator with cooked meals before traveling. I did the grocery shopping and ran errands.
The trade-off was open bank access, a gas card, and a travel credit card. I didn’t have to worry about money; Dad didn’t have to worry about Mom.
It became our permanent plan
By the third year, this temporary solution was working so well that it became our permanent plan.
Caregiving didn’t feel like a burden to me. It felt like a gift.
For years, I regretted my rebellious teenage years and taking my parents for granted. I was given an unexpected do-over — a chance to spend time with them, help care for them, and repay some small portion of what they’ve poured into my life.
I’d laughingly sing “Cinderelly, Cinderelly” while I cleaned the house and cooked meals, but I also got to live Cinderella’s life after the ball. By not having household living expenses, I was able to travel. I got to go on long-awaited adventures, and we all got a little bit of breathing room.
When I was home, Mom and I enjoyed theatre productions and movies together, and she became somewhat of a local celebrity when she’d appear in videos of our adventures. When I traveled, I’d leave “surprise boxes” for her. Sometimes they had small gifts to open each day. Other times there were cards to be opened each morning, each carefully dated and filled with funny cartoon clips or a heartfelt memory inside.
When she and Dad traveled, I’d use the time to deep clean the house, reorganize the kitchen cabinets and return things to their proper places, or just rest.
When we grew frustrated or worried, Dad and I had each other to lean on. When one of us got angry, the other took the role of confidant and comforter. That was perhaps the greatest tag-team benefit of all.
Dad and I knew there might come a day when we’d need to recalibrate as the disease progressed. Dementia continued to change the rules, but we’d chosen to enjoy each season as it came.
One week into a planned seven-week road trip, I got a call from my sister. Mom had a massive stroke and would not survive. I drove straight home, and we spent the next nine days by her bedside. Her best friend told us that she’d confided in her that, as much as she hated what dementia was doing to her mind, the last year had been the happiest of her entire life. I had to hold on to those words as she was lowered into the ground. Dementia might have taken some of her memories, but it couldn’t take the love.
Caregiving for her became one of the greatest honors we could’ve had.
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