Nobody Told Me: Love in the Time of Dementia, S.R. Karfelt

AFTER MILLENNIA OF marriage and centuries of children, I thought I understood love. Dementia is teaching me so much more about it. It reminds me of that quote from Alan Bennett in The Lady in the Van, “Caring is shit.” It’s said while he’s fussing about the problems with the homeless woman living in a van in his driveway. Low brow as it might sound, I found it rather profound. Shit. You have to put up with a lot of it for love. You give it and you get it. Marketing and movies focus on the pretty parts of love, but there are all sorts of love and a whole lot of it isn’t pretty.

51dushu4z4l-_sx337_bo1204203200_Love is hiding in the lounge at assisted living and writing your mother-in-law’s name on her underthings so they can be sent to the laundry.

Love is Juan, after weeks of international travel, dragging his jet-lagged bones to assisted living and sorting through the hodgepodge of his mother’s clothes, teacups, and papers, and taking down all the wall art he spent hours putting up.

Love is Plan B or C or D or whatever we’re on now. It’s a Spartan plan. That means no decorations, just a couple boxes of pictures. 

Love is realizing that making Gummy’s new home like her old one was our ideal. We don’t know Gummy’s ideal, and she can’t remember it.

Love is realizing what used to comfort doesn’t anymore. Gummy’s been giving her teacups away. She doesn’t recognize that they belong to her. She hides them in drawers to keep them safe. Later she panics because they are disappearing.

Love is the nurses and aides who get hit and scratched by patients with dementia, and take it in stride.

Love is adult grandkids who get slapped by a grandmother who’s doted on them, and forgive, and comfort their grandmother in her dementia-fueled anger.

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. Yes, we love her, and, yes, she’s giving us a hell of a lot of shit. (loc 1561)

My grandparents were diagnosed with Alzheimer’s (both grandfathers) and dementia (both grandmothers) way before anyone else we knew was heading down this particular medical rabbit hole. My parents – both only children – were under the crippling burden of caring for their parents just as all of their friends were enjoying becoming empty nesters. I got to witness, for over a decade, two of the very best people I know share a terrible weight as they watched the people they loved best in the world slip away in agonizing fits and starts.
As my mother sometimes jokes (now that the worst of it is over, and their parents have passed on to what I dearly hope is better than the hell that is dementia), “At least we got a book out of it!” And we did. It’s called Caring for Ourselves While Caring for Our Elders, and she and I wrote it in partnership with a psychotherapist named Leann McCall Tigert in 2007, when we were still in it neck deep with my grandmothers. In the book, my job was to document what it was like to watch the so-called Sandwich Generation deal with the enormous stress of caring for both parents and children. Spoiler alert: it’s tough. It’s not, however, anywhere near as difficult as being the person doing the caregiving (a fact I grasp much more fully now than I did ten years ago).
I often think about my grandparents, who were so integral to my life, as I watch my parents and in-laws with my children. I remember them as the vibrant people they were when I was a child, and I also remember them as the vulnerable, sometimes difficult people they were in their late eighties and nineties – the deaf (my father’s parents) and the blind (my mother’s), the memory deficient (all), and eventually, the frail. I loved them all fiercely, and I was also angry at them because caring for them aged my parents just when they were supposed to be free.
The worry was everpresent. Every time the phone rang, disaster lurked. Trips were few and far between. Vacations were nonexistent. It was very much like having a baby, except that it was heartbreaking. These intelligent, compassionate, fascinating people were left greatly reduced by dementia, and yet even at the very end, there was so much love and appreciation on both sides.
I’ve never read a book that conveyed the balancing act better than Karfelt’s did. I put off reading it for a few months because I didn’t want to be sad; when I finally started though, I couldn’t stop. I must have recommended it to twenty people by the time I finished. I put countless bookmarks in it. I highlighted. I laughed. I read passages aloud to my husband to explain why I was weeping. I called my mother up multiple times and told her, “This was you! She’s you!”
When I finished, I felt as though a piece of my soul had been seen and recorded. The loneliness of dementia – of caring for a person with it, of having it, of hurting as it erodes familiarity – she captured it all. She made me think again about what it must have been like for my parents, about how deeply loving and present they were for so many years, about what a gift that was to my grandparents, and to my brother and me, even when we struggled with it.
Because people are people and love isn’t forgotten, even when particulars are.

5 thoughts on “Nobody Told Me: Love in the Time of Dementia, S.R. Karfelt

  1. Reblogged this on Gifts in Open Hands and commented:
    My daughter Maria Mankin hosts a remarkable blog of book reviews every other week. It is called Books J’Adore. I usually find at Books J’Adore the beach read, the quirky memoir, the best young adult fantasy, the new poet. This morning I found this and want to share it as my guest post this Thursday. Thank you Maria.

  2. Ah, Maria. Thank you. I will look for this book. I didn’t get double-whammied like your folks; it was just my father-in-law (Mom had the opposite issue, mind sharp as a tack while her body relentlessly unwound). The agonizingly slow leave-taking of a mind and personality. In the end, love prevails.

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