Nobody Told Me: Love in the Time of Dementia

by S.R. Karfelt

A heartfelt story of respect, heartbreak, and love…

Saffi falls in love with and marries her mad scientist, never expecting to find the most profound friendship of her life with his mother, Gummy. She doesn’t particularly care for the woman, and the feeling seems to be mutual.

Thrown together by circumstance, they forge a bond based on necessity, animosity, and begrudging respect. Neither knows it will last long after they no longer recognize each other. Memory loss changes more than the person who can’t remember. It changes those who can’t forget.

Nobody Told Me is the story of a complicated and powerful relationship—the love between two women who love the same man and the struggle to hold on as dementia erases past, present, and future.

252 pages, Hardcover

Published May 19, 2017

About the author

Before writing full time, S.R. dabbled in the engineering world. She co-founded a high-tech company with her husband before returning to the other love of her life, writing. S.R. writes wherever the wind blows her, but currently calls the soaring capital of the world home. To learn more about S.R. visit her website at www.SRKarfelt.com

Reviews

[Aleena · Rating 5 out of 5]

Love is the nurses and aides who get hit and scratched by patients with dementia, and taken in stride.
Love is people who take time out of their days to spend time with people who suffer from this disease. Especially those who give so much of themselves to Gummy.
I just love her, they say.
Maybe she can't remember their names, but she remembers the love part.
Because people are people and love isn't forgotten, even when particulars are. People suffering dementia still need love. It doesn't look anything like the Hollywood version; it looks like work. Feels like it too.
Real love is messy and hard sometimes, but it's all we've got.

This memoir is easily one of the most heartbreaking and beautiful things I've ever read.
Real talk: I'm going to gush, so hang in there for a sec. My Grandma had dementia, and we watched as she declined and it was pretty heartbreaking. When I came across S.R. Karfelt telling her story of putting her mother-in-law, Gummy, into memory care, it sort of broke my heart all over again.

I suppose hiding memory issues is normal. Most people wouldn't hide a gaping would in their body, but if it's in their head they do.

Gummy is a firecracker. So is Saffi (Karfelt's family nickname), so they're a fantastic pair. These pages are an homage to their relationship-- which wasn't always perfect, but was so, so full of love and respect. These pages are also an homage to Gummy, who just sounds like one heck of a woman. And so does S.R. Karfelt, for the record. Her selfless servant-heartedness is as inspiring to read about as the strong but deteriorating Gummy herself.
The thing about Karfelt's writing is, it's freaking hilarious. Finding out what mischief Gummy got into this time is just so much fun. And I think we all need that-- an honest, heartbreaking but laughter and hope-filled approach to this topic that so many people have to suffer through on one end or the other. So if you're there too, or if you want to know what it's like, or if you just want some therapeutic tears but also a 6-pack from laughing so hard-- check out this book.

Thanks once again for the labor of love, Ms. Karfelt. Your hard work has meant so much to me personally, and I know it has and will mean the world to many others.

[Eva Hnizdo · Rating 5 out of 5]

Brilliant. It is a love story, a daughter in law and her mother in law with dementia. I am a doctor, so know a bit more about patients with dementia, and caring for them. It is hard. However this patient had love, respect, fun all given to her first and then written about it by a smart, kind, very witty woman. A very good woman and writer. S.R. Karfelt

[InD'tale Magazine · Rating 4 out of 5]

3.5/5.0

Ms. Karfelt holds little back in this heart-felt account of mother-in-law Gummy's losing battle with dementia.

Read full review in the 2017 November issue of InD'tale Magazine.

[E.D.E. Bell · Rating 4 out of 5]

This is a remarkably honest book. That feel of honesty is enhanced by its informal, familial tone and almost chat-style flow (which took some getting used to). The best way I can describe Nobody Told Me is that it’s like sitting down with a friend, sharing a bottle of wine, and laughing and crying together about dementia, about each others’ lives, and the range of moments (good, bad, and totally inappropriate) that made them so special. That’s what really affects me about this book—right or wrong (I’m still not sure which!) memory loss is talked about in these blunt terms by everyone. It’s just usually in private.

I knew that Karfelt has an irreverent streak and also a sharp, dark sense of humor, so I had to see what she would do with all of that in light of the subject matter. She slings serious subjects around in her jokes, and hits issues right in the nose. Mostly, I loved that candor in this context. Her comments about nursing homes could be off-putting to people for whom that’s the most viable option, or about the need for full-time caregiving when some people don’t have that time or energy to offer. But, this is her honest story, and candor isn’t always comfortable. You can say what you need to during that private conversation on the couch. Just, we’re all invited.

While Karfelt decries the trials of memory loss, she ensures we know her respect for those affected. This dichotomy—are we allowed to talk about memory conditions at the potential expense of the dignity of those affected—is one aspect of why these conditions are so horrible in the first place. So, talk about it, or don’t? Well, maybe it’s ok to talk. Or maybe some people need to be brave enough to do it, to let others know they are not alone. I don’t even know. But, wow, I respect the author for going for it.

So that’s really what it comes down to. This is not a clinical or censored look at dementia, as she warns the reader right up front. It’s a woman, her stories, her touching and sincere love of her mother-in-law, and the recognition that if we have to deal with it, we might as well talk about it. The sad, the happy, and sometimes even the funny.

[Patricia Vogel · Rating 5 out of 5]

You don't want to miss NOBODY TOLD ME. I had the luck to hear snippets of this book before publication and knew I wanted and needed to read it. This summer, I read it twice. The first time because I wanted to hurry and finish it; the second time for pure enjoyment.

I cried and I laughed. This moving memoir, love story, and family chronicle is full of jewels of wisdom, scenes of heartbreak, moments of great sacrifice, huge disappointments, mind boggling frustrations mixed with anger and tears.

Read this book by S.R. Karfelt. It will move you - to tears and to laughter. Whether you are dealing with a loved one with dementia or not, I recommend this book for both its honesty and for the insights into a disease taking the world by storm.

[Lisa Shambrook · Rating 5 out of 5]

Dealing with Dementia with humour, happiness, and grief.

Alzheimer’s is the thief of time, stealing memories and lives with no compunction at all – my words not the author’s, but we are on the same page. If you have ever experienced Dementia/Alzheimer’s in any way you need to read this book. Author, S. R. Karfelt, has been and is going through it all and eloquently puts her experiences on paper.

For anyone facing dementia within their families, this is a book that will show you that you’re not alone. You’ll know you are part of a growing number of people dealing with this disease and staring it right in the face with defiance – and humour – you have to laugh, and you’ll cry too. Lots.

I adore this book with its raw honesty, the beauty in its characters, and I love the way it skips and wanders through the past and present – just like dementia does.

So many stories in this book tickled me, made me smile, and made me belly laugh, because I’d been there. You have to attack Alzheimer’s with humour, wit, and love, they give you the strength to carry on. This book will make you stronger.