Wednesday, January 3, 2018

From the AlzAuthors Blog: S.R. Karfelt, author of Nobody Told Me - Love in the Time of Dementia

By S. R. Karfelt

Writing about memory loss wasn’t something I’d planned to do. I’m a fiction writer. But when my mother-in-law could no longer live on her own she moved in with me and my husband, her son.

That same husband and son had to go work in Asia soon after she arrived, leaving me alone with Gummy for a short but difficult while. His parting words were, “Do whatever it takes to survive it.”

What do writers do to survive? They write.

Even then I didn’t plan to write a book. I had my next fiction book lined up. My grand plan was to get Gummy settled, on medication, and used to her life here. Then I’d get back to writing. I’d blocked off a couple months to accomplish this.

Is it even possible to get someone used to losing their memory? I was so young and naïve last year. Gummy couldn’t remember where she was or why. She packed to go and asked questions non-stop until she’d drop from exhaustion, and later wake up panicked and deep into sundowning in the middle of the night.

At some point I wrote a desperate post on Facebook. The tsunami of support that came from others who were going through the same thing, or had, surprised me. It helped knowing I wasn’t alone. I continued writing about Gummy privately. Eventually I told my publisher the expected book wasn’t going to happen. I could barely take the time to go into the bathroom alone, let alone write.

       Saffi? Saffi? Where’d you go?

             I’m in the shower, Gummy! I’ll be right out!

       Hello? Is anybody here?

My publisher is the first one who said, “Why don’t you put those Facebook posts into a manuscript and see if you can turn it into a book?”

It makes me laugh now to remember my thoughts then. Wow. I could do that. I’ll just whip out a little memoir, and fulfil my publishing obligation in no time. That won’t be too hard. Talk about naïve. I rewrote that book eighteen times before it even went to the editor. Then there were another ten revisions with her. I cried over that book, and occasionally laughed like a lunatic.

Trying to help Gummy during the day and then write about it at night was an emotional bloodbath. Pawing through my memories of us and laying them bare for the world made this the hardest thing I’ve ever written.

Gummy is one of my favorite people. I adore her. As I say in the book, I’ve been married to her son for eighty billion years. I know her. She knows me. Even now, as bad as the disease has progressed, I cannot look her in the eye and lie. She knows. Over the years we’ve had little in common but our dry humor and stubbornness, and that is the one thing that hasn’t changed. That’s why it took so long to write.

By the time I began writing the book, Gummy had gone into a local memory care facility. Then I turned my focus and time into helping her get comfortable there. At night I wrote and rewrote that book until I found hope and humor in this godawful situation. It may have taken a few years off my life, but I found it.

* * *

Update: The humor Gummy and I shared feels like it went with her because she died at Thanksgiving. Her ending came abruptly. A UTI took her down a notch and she quickly lost the ability to swallow and then breathe. It was the worst of times and the echo of it is still very fresh. I remind myself that we were lucky to have had such a good-natured soul in our lives, lucky the very worst didn’t drag on, lucky the disease (Alzheimer’s and vascular dementia they say) didn’t make her mean. I almost believe me. Now my hope lies in the future and a cure for everyone else’s Gummy.

About the Author

An entrepreneur, wife, mother, and novelist, S.R. Karfelt helps care for her mother-in-law, Gummy. S.R. authored a memoir about their relationship, for better or worse—a daughter-in-law’s journey, it’s entitled

Instagram: srkarfelt

Pinterest: S.R. Karfelt


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