Seeing light in a dark time: Brianne Grebil shares her mom’s Alzheimer’s journey in ‘Love Doesn’t Care If You Forget’

When her mother entered the final stages of Alzheimer’s disease, Brianne Grebil knew that their time together would be difficult.

Grebil had decided to help care for her mom, Jaylene Grebil, who was diagnosed with early onset Alzheimer’s in fall 2015. It progressed quickly within a few years.

“My poor father was practically killing himself trying to do it all,” Grebil, 40, said.

In June 2019, she and her husband packed up their lives in L.A. and moved back to Grebil’s hometown of Kellogg so she could help with her mom’s increasing careneeds.

The next year brought both heartbreak and challenges that pushed her to emotional limits, Grebil said, but it also delivered a deeper love and grace in their relationship.

Grebil has since described that in a short book, “Love Doesn’t Care If You Forget,” published in June by One Idea Press. Her mom died in July at age 67.

“I was kind of walking this journey with her, and she was leading – though she didn’t know that – but as difficult and as very challenging as it was, I realized that she was teaching me things along the way about how to be with her and how to care for her.

“Then I realized it’s not just about me and Mom. Actually, the things she was showing me were that there is a lot of love available even in extremely challenging circumstances.”

As an example,Grebil didn’t hold back in the book describing some of the “ugliness” of Alzheimer’s along with the moments when she said both love and grace showed up.

“I remember one of the worst nights I had with her,” Grebil said. “It was when we had to move her into a nursing home. … She actually had grown quite cruel and mean, which is not the mother I grew up with. I was with her late into the evening.”

Grebil was the only person who could help her mother to wind down and get to sleep, but not on that night. Her mom kept pacing and yelling while banging on walls.

“She was calling me names and being incredibly cruel to me. I broke down on the floor, crying, and I just wanted my mom to see me and say, ‘It’s OK.’ I had quite a few really bad situations with her, and a lot of bad days, and that was the worst I could remember.”

Grebil described that moment as feeling utterly broken while thinking she couldn’t keep doing this or how anybody could. At some point later, she picked herself off the floor, and her mother eventually went to bed. The next morning, she returned to visit her mother and found her all smiles. They laughed a lot together that day.

“And it occurred to me then that there’s always something after the worst parts,” Grebil said. “There are the worst parts, but life doesn’t just abandon you there. It may not be as quick as a few hours; it may be a longer phase of those bad parts, but life never just stops there.

“The next time I had a really bad moment with her, I remembered I was with her at my absolute worst moment we were together, and there was still something to smile about later. That kind of carried me through.”

Alzheimer’s is the sixth leading cause of death in the U.S., and there is no cure, according to the Centers for Disease Control and Prevention.

The progressive disease is the most common type of dementia, which is a general term for memory loss and loss of other cognitive abilities serious enough to interfere with daily life.

Alzheimer’s disease involves parts of the brain that control thought, memory and language. The disease might affect mood and personality changes, along with bringing confusion, suspicions, depression and being fearful or easily upset, says the Alzheimer’s Association.

Grebil said she hopes her book will help others see some light within what can be a dark time while caring for a loved one with dementia or Alzheimer’s.

“There is something other than just the challenges, the heartbreak, the struggles,” she said. “That’s what I want people to see because it’s really easy to get lost in something so difficult and let it drag you down and make it really harder. It’s to let people know if you keep your heart and mind open to something else, there is something really beautiful that can be seen.”

Grebil is a writer, life coach and teacher. After returning to Kellogg, she worked during the early morning hours or when her mom was sleeping.

After her mom’s diagnosis, Grebil said she had most dreaded the first time her mother would forget who she is.

She writes in the book about how grace appeared in that moment, instead of her sadness or fears, when she realized her mom didn’t know her. It was during a holiday visit home a few years ago, and her mom was up in the middle of the night – confused and fearful.

“When that moment arrived, the way I explained it in the book is it was almost like Brianne wasn’t there,” Grebil said. “The only word I have for it is that grace took over. It was something that knew just to love her and not worry about that she didn’t know who I was. And we had this beautiful embrace.”

She said similar experiences happened time and time again despite bad moments.

“I became more connected with my mother. The two words I have for the beautiful side of the experience are love and grace. I was completely focused on her. She was really scared and insecure.

“I can’t tell anybody how to do that, but what I can say is any moment that you are focused on love rather than what you might feel is like a lack of love, that will only help.”

COVID-19 restrictions threw another curve into Grebil’s story, too late for the book, when she and her father saw Jaylene less and only just outside the facility, distanced and all wearing masks. Her mother’s verbal skills declined quickly.

Although it was too late to describe those impacts, every chapter in the book is designed to point toward thoughts to explore, she said. Grebil also recommends that caregivers get support. She found solace in a Facebook group called Alzheimer’s and Dementia Caregivers Support.

Additionally, Grebil invites people to share stories on her website, loveanddementia.com, which also carries the book for sale.

It’s difficult to accept what Alzheimer’s robs, such as shared history, experiences and previously consistent affection, Grebil said, but she says that you can still find love.

“If you can, find a way to tap into love or to focus on love rather than insecurity, fear or pain. It’s not that those are going to disappear – I don’t even think they need to because it’s kind of a packaged deal with this experience – but underneath those things, there is still always love.”