A Day in the Life of a Dementia Caregiver

I have a planner that I try to keep a log of my caregiving duties. I started this because I was so surprised by the sheer number of minutes and hours spent on caregiving every day.

Every caregiver's situation is different based on the unique needs and situation of the person and their family. I've had experience caregiving from out of state, caregiving for my mom in my home for 2 years, and now caring for Mom in her senior retirement home down the road. In all those different roles, caregiving took time, just in different ways.

Caregiving takes time

My kids started school this fall, and I've been looking forward to some time to get work done and chip away at my to-do list. Instead, many days I find myself out of time after caring for my mom, who lives with Alzheimer's.

For example, during one short window when all kids were at school, I only succeeded at completing one very long phone call trying to track down an appointment with the correct mammogram clinic for Mom.

Do you also feel this way, caregiver? You're not alone. According to the Alzheimer's Association, there are 11 million Americans who provide unpaid care for people with Alzheimer's or other dementias. In 2021, these caregivers provided an astounding amount of care - more than 16 billion hours.¹

Where do the hours go? What do we do all day? Here's a snapshot of what my days looked like in all those caregiving roles.

Long-distance caregiving

When Mom was still living in her home independently, states away from me, my caregiving hours went to phone calls, scheduling appointments, and communicating with family members.

I tried to call Mom daily to talk to her and see how she was doing. She also suffers from anosognosia, a condition alongside her dementia that makes her unaware of her deficits. So I also had to call or email other friends and family close to her to see how she was doing.

I helped her get her legal and financial affairs in order, which required a number of trips to visit her in person for appointments.

I coordinated my schedule to book flights and transportation to get to Mom (who no longer drives). We helped her countless times with house projects, clearing out a rental property, and moving things into and out of storage units.

We drove her to specialists at hospitals in bigger cities to get better evaluations and care. She had some other health issues that required surgeries and long recovery times, and I helped coordinate care for her from afar.

The anxiety of long-distance caregiving

Balancing all those demands with my own life and my kids' busy schedules and needs was time-consuming. Sometimes I had to answer a phone call from Mom's doctor right in the middle of a school event or an important meeting.

But the most hours I spent as a long-distance caregiver were worrying. I was endlessly worried about how Mom was actually doing because I couldn't see her with my own eyes. I was anxious that she might fall and wouldn't get help immediately. I had to rely on and trust her nearby caregivers to let me know what was happening. Those unknowns were the most challenging part of long-distance caregiving.

Caring for a loved one in your home

During the pandemic, Mom moved in with me, my husband, and 3 young kids. This required a big long-distance move and shifting her life from one community to another. Thankfully, we had already established care for her with excellent doctors in our city.

We organized the packing, moving truck, and actual pickup of my Mom and her dog from states away. We spent hours communicating with friends and family members who were upset or emotional about the move. And once Mom arrived, we spent months getting her settled and comfortable - not an easy feat for someone living with dementia.

Once she was settled, I spent most caregiving hours arranging her schedule, coordinating transportation, and so much cooking and cleaning (Mom doesn't do either anymore). I juggled appointments, exercise classes, and fun outings for my kids and mom. I helped take care of her dog and organized vet appointments and dog food deliveries. I booked her travel plans so she could fly back and visit our family.

Many times we'd sit down at the end of a long day only to be asked by Mom for a new lightbulb or batteries or something to be fixed in her room. It was exhausting in a new kind of way, a hands-on way.

But I no longer went to bed wondering what Mom was doing or anxious about the unknowns. I was thankful to know exactly where she was and how she spent her day.

Caring for a loved one in a care facility

Now that Mom is in a senior home, my time has shifted to be spent in other ways yet again.

I still spend time booking appointments and organizing her travel and activities. But now I don't have to wonder if Mom forgot to turn off the stove at my house or worry because dinner is late that night. I know she is being spoiled with a diverse menu of balanced meals for her to choose from at the exact same time every day, which satisfies Mom's desire for routine.

I check her apartment regularly and help tidy up. Dementia has made my mom, formerly one of the cleanest people I know, not remember the last time the toilet was cleaned or notice the crumbs on the counter. But I no longer have to add deep cleaning to my tasks because the senior home cleans her apartment once a week.

Instead of spending hours trying to find dementia-friendly activities and coordinate transportation for her, I know Mom is very engaged and stimulated by the many amazing programs at her retirement home. She is happy to be independent and choose what she feels like doing that day. And I can take a break and sometimes work on my tasks when my kids are at school.

A day in the life

It's been an adventure being a caregiver for my mom in all these different capacities, sometimes challenging but always fulfilling. I'm grateful to care for her and help her live a full life after an Alzheimer's diagnosis.

And I'm curious to know from other caregivers: What do your days look like? Tell us about your experience in the comments below, or share your story with the community.