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Patient InsiderHey, I’mNikki.Caring for my momwith Alzheimer’s meant being partners.

Portrait of Nikki

I thought my mom just needed a day off

My mom was my best friend and we were extremely close. She was a nurse for patients with Alzheimer’s and dementia, and it was very stressful for her. She always looked very tired and started to forget things. I remember saying to her, “Mom, maybe you should take a day off.” We were on the phone talking one day, and she couldn’t remember how to get home from work. I asked her to tell me what was around her so I could help guide her. She was three blocks from our house. Shortly after, my mom was diagnosed with Alzheimer’s at 58 years old.

Making changes together helped us both feel empowered.

Everyone deserves dignity of care

At diagnosis, my mom was laughing. She said, “We’re going to beat this. This ain't nothing.” I was bawling my eyes out – she seemed fine. But one night, a few weeks later, my mom started to cry. She said, “So I really have Alzheimer’s.” It hit her, and she understood. I told her that she wouldn’t be alone. I would be there. We would be a team. We would partner through this and change our lifestyle.

This involved creating a home that was more Alzheimer’s-friendly. I looked for ways to be intentional about the things my mom was having challenges with. I used color therapy — like using kitchen items in her favorite color, red, to help encourage her to eat. I relied on scents like lavender on her pillow at night to help keep her calm. I also used smart devices and AI technology to set reminders, play music and podcasts, and create routines.

I had to become the mom, making sure she ate and used the bathroom. Even though our relationship was changing, she was still a person. She was MY person. Learning that we were in a transition period helped us to get to a point in the care journey where we both felt like we were being seen and appreciated.

I advocated for my mom all the time. At appointments, doctors would talk to me while my mom was sitting right next to me – even when she was still able to communicate how she was feeling. I would say, “Hey, listen. My mom’s right here. You can talk to her.” And my mom would say, “Yeah, damn right. Let’s do this!” My mom was still worthy of dignity of care.

Being a caregiver means being an equalizer of care.

From burnout to balance

There’s a balance in being on this journey together. You give care to your loved one, and you also have to give care to yourself. It’s a partnership. We have a tendency to neglect ourselves when we are taking care of our loved ones. We have to change that.

A nurse once asked me, “How are YOU doing in managing her care? Are you making sure to take breaks, too? What do your breaks look like?” I had no idea anyone cared. It’s a life-changing experience when it feels normalized to take a break and practice self-care.

How do we find the time? Figuring out what your days are looking like and where you’re feeling exhausted can help you explore ways to create more time and better systems for yourself. Are you a night person? Do the next day’s prep at night when you have the most energy. During the busy times, we can take care of ourselves in small ways. Take a multivitamin or wear a moisturizer with SPF. Even stretching counts.

Portrait of Nikki

My Reading List

Every Alzheimer’s journey is unique, but we’re not alone. Learn more here.

Oh, and follow more of my story.