I moved back to my hometown in Louisiana from Biloxi, Mississippi in 2023 after 35 years on my own. It was the solution to two problems: I was recently divorced and had nowhere to go, and my father needed help caring for my mother, who had dementia.
It would be temporary. Respite care for him, sanctuary 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, in pain, and trying to figure out what would come next. Moving back home felt strangely familiar, like I was a teenager again. Unfortunately, I sometimes behaved that way too.
My mother and I had a hard time during those first months. I tried to help, but she didn’t want my help. And while my father appreciated the extra hands, he was often in the middle of it. I understood dementia intellectually, but emotionally I felt rejected by my own mother.
The author and her parents found a rhythm living together. Thanks to Jeanni Ritchie
We would make agreements about, for example washing schedules and a carved-out office space for me. I scrupulously followed my mother’s wishes, but dementia often made them null and void. My mother forgot our conversations and became frustrated when things were not as she remembered.
The laundry room became our biggest battleground.
When my clothes were in the washing machine, she would often get upset and insist that she had “lost her house.” The clothes weren’t really the problem. Dementia was changing the rules, and the laundry room became the place where she felt most clearly that she was no longer in complete control of her own home. It didn’t matter that I was her daughter; it felt like another woman had moved in, and dementia made it hard to understand that I was there to help.
It took time, but I learned the new rules of the house
Over time, I learned to deal with my mother’s unspoken signals and emotional needs. A closed bedroom door meant she needed space. An open door often meant it was a good day. I became a calm pair of hands in the background, easing the physical strain.
I learned when the kitchen fairy had to sneak in after everyone was asleep to preserve Mom’s dignity. Most importantly, I stopped taking everything personally. For someone who had worn her heart on her sleeve for a lifetime, that was no small lesson. My mind always was dementia understoodbut it took time for my heart to catch up.
Over time, the author came to see caregiving as a gift. Thanks to Jeanni Ritchie
During my second year at home, I began to understand the power of co-regulation. I was cured of the aftermath of my divorceand I experienced a joy I had not known in years. It spread throughout the house.
The progression of dementia did not stop, but the atmosphere in our home changed. There was more laughter, more music, more outings and more happiness woven into our daily routines.
My father and I have become real caregiving partners. He felt comfortable taking night assignments at work while I was home with my mother, and I was able to travel when I had a taking a break from care. I did all the cooking and cleaning, and even stocked the fridge with cooked meals before traveling. I ran errands and ran errands.
The trade-off was open banking 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
In the third year, this temporary solution worked so well that it became our permanent plan.
Informal care did not 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 change: a chance to spend time with them, help care for them, and repay a small part of what they brought into my life.
The author and her father leaned on each other as they cared for her mother. Thanks to Jeanni Ritchie
I sang ‘Cinderelly, Cinderelly’ while laughing cleaned the house and cooked meals, but I also got to live Cinderella’s life after the ball. Having no living expenses allowed me to travel. I got to go on long-awaited adventures and we all got a little breathing room.
When I was home, Mom and I enjoyed theater productions and movies together, and she became somewhat of a local celebrity when she appeared in videos of our adventures. Whenever I went on a trip, I would leave “surprise boxes” for her. Sometimes they had little presents to open every day. Other times, cards had to be opened every morning, each carefully dated and filled with funny cartoon clips or a heartfelt memory inside.
When she and dad traveledI would use the time to deep clean the house, reorganize the kitchen cupboards and put things back in their rightful places, or just rest.
When we became frustrated or worried, Dad and I could lean on each other. When one of us became angry, the other took on the role of confidante and comforter. That was perhaps the biggest advantage for the tag team.
Dad and I knew there might come a day when we would have to recalibrate as the disease progressed. Dementia continued to change the rules, but we had chosen to enjoy each season as it came.
One week into a planned seven-week road trip, I received a call from my sister. My mother had a massive stroke and would not survive. I drove straight home and we spent the next nine days at her bedside. Her best friend told us that she confided that as much as she hated what dementia was doing to her mind, the past year had been the happiest year of her entire life. I had to hold on to those words as she was lowered into the ground. Dementia may have taken some of her memories away, but not love.
Caring for her became one of the greatest honors we could have had.
