Juggling the Responsibilities of Alzheimer’s Caregiving

November 6, 2024

Anica Leon-Weil is a licensed therapist and caregiver to her mother who lives with Alzheimer’s.

“I want to stay in my home. I want to die here.” These were words my mother, Barbara, repeated to me many times over. I was fortunate to grow up in a family that talked openly, including about aging and death. And when my father, Bob, had a major cardiac incident in 2014, I was confident he did not want to be on sustained life support, and so my mother and I made choices based on that information. It was clear, and I felt grounded in the way we honored his wishes. But when my mother developed Alzheimer’s disease a few years later, I found that things are not always so straightforward. 

At the start of the pandemic my mother started having medical issues and showing signs of cognitive decline, but it was unclear what was grief, medication related, or the stress of the pandemic. In August, 2020, I moved back to my hometown of Santa Cruz, California to be closer to her and offer support. I accompanied her to medical appointments where we chased treatments and answers for an array of issues, and for a while things appeared to be improving.

Mom seemed to be returning to her old self, and so I moved on with my own life: at the age of 34, I was healthy and had a good career and I used a donor to conceive a child.

Not long after I became pregnant, my mother had a sudden increase in challenges. She started having difficulty managing her finances and began giving away increasingly large sums to people she met on the internet. She seemed confused by how to prepare food, lost track of time, and began to have difficulty driving to familiar places.

It took two years for my mother to be officially diagnosed with Alzheimer’s disease, and by the time that diagnosis arrived, it was a relief. At least there were answers. But by then I was a solo parent looking after a newborn, and now I was also a caregiver, desperately trying to keep my mother healthy and happy — all the while balancing a full-time career as a therapist.

I desperately wanted to honor my mother’s wishes to remain at home. I installed camera systems to communicate with and monitor her when I couldn’t be there. I set up Meals on Wheels and delivered groceries. I hired outside caregiving support. I looked into various community housing exchange and adult day programs, and arranged a live-in caregiver. But despite these attempts, every week there were new crises.

The live-in caregiver situation was immediately untenable. The caregiver we hired showed up very differently than she had in her interviews and was neither reliable nor open to feedback around how to meet my mother’s needs. In the same timeframe, my mother’s neighborhood flooded several times and she had to be evacuated and a man she knew began harassing her for money. I was as present as possible — either physically with her, or watching the cameras and providing remote support.

Between caring for my mother and my daughter, most nights I hardly slept. I carted my baby in rush-hour traffic across town after work in order to make sure my mom ate dinner. I got everything done that needed to be done, but it was much more than I could handle alone. 

Within the chaos there were good times too. We laughed and smiled and had adventures. Then in May, my mother broke her arm. I had been in contact with her all day and watched the cameras, but somehow, despite our interactions, I arrived on Mother’s Day and realized something was very wrong. An obvious break in her arm had occurred the day before, but she had no way to articulate that there was a problem. 

After the first weeks, she began to recover well, but the following month there was a marked decline — this time caused by a case of Covid, which impacted her more cognitively than physically.

With Mom’s increased needs, my daughter and I began to sleep there every night. But my mother would wake my daughter up wandering around at all hours of the night. I prepared every meal for the three of us, managing soaked bedding and laundry, and still worked remotely from her house.

It became clear that no one was thriving; we were all barely hanging on. And due to the high costs and complexity of trying to hire in-home care, it seemed more financially feasible and logistically manageable to look into moving her into a care facility where she could be safe and well cared for by a team, rather than just me. We were fortunate that she owned her home and so, with the sale of the house, we had resources to pay the high rates of assisted living for a few years.

Not surprisingly, when I proposed the idea, my mom’s reaction was one of resistance, but we went to tour a place near my house and she was amenable. She never said it out loud, but I have the sense that somewhere in her, she recognized things were not working. 

To involve her in the moving process, I encouraged her to take part in some packing and decorating tasks and provided a lot of reassurance. I visited for hours every day the first weeks. She adjusted well and began to stabilize with a more regular routine, company, community, and more support with meals and medications. 

She loves the twice weekly music sessions, and nothing lights me up more than seeing her tapping her feet and singing along. I feel tremendous relief and, while I am very involved in her care, I am no longer her sole support person and am able to take better care of my own health, care for my daughter, and manage my business.

Occasionally, I feel guilty, but I am able to remind myself that while I wanted to honor my mother’s wishes, I also had to make the best choices for her safety and the wellbeing of our family.