Is This How It Ends?
Will This Be The Death of Me?
I opened my pantry doors and sighed in defeat. My carefully organized system had been upended. I thought to myself, Is this how it ends? Will this be the death of me?
The shelves were in complete disarray. Canned salmon sat in the rice bin. I certainly didn’t put it there. The pistachios were in the walnut bin. The chocolate my partner ordered online was strewn across multiple shelves instead of tucked inside the bin clearly labeled CHOCOLATE. Deep in the pistachio bin, I discovered a covert bag of chocolate chips.
At the beginning of the year, I lined the shelves with new shelf paper, hopeful about what the new year would bring. I bought clear plastic bins and meticulously labeled them: Rice, Pasta, Nuts, Protein Bars, Chocolate, Biscotti. I didn’t realize our lives would soon be upended by my partner’s latest diagnosis of Stage IV kidney disease, a condition that requires careful monitoring of one’s diet.
Despite carefully cataloging the nutritional values of our meals—both on index cards and online—I found hidden snacks behind the bins. Snacks I didn’t know about. Snacks whose potassium, phosphorus, and sodium levels I hadn’t calculated.
For better or worse, my partner is a relentless snacker.
He eats a great variety of snacks, and I am overwhelmed. So far, I have categorized and calculated food values for over 25 individual snacks. Forget about so-called regular food.
I feel the control slipping. Recently, he wrote out an index card for cinnamon crunch bagels I’d already cataloged. Even our attempts to help each other were creating more work.
I stepped away from the pantry in frustration. Our next appointment with the dietitian is in early August, and I feel this relentless need to have every single food item cataloged. I’ve managed the meat, dairy, and vegetables, but the snacks are never-ending. This will be the death of him and me.
Can this man just survive a few hours without a snack, for Christ’s sake?
Part of me wants to cry. How am I supposed to keep up with this? I’ve handled cancer (my own), spinal surgery (my own), stroke (his, although I consider myself a survivor of it, too), and mild cognitive impairment (his). I’m a strong person, but this endless calculating of phosphates, potassium, sodium, protein, and calories for every individual food item feels like the thing that will finally break my spirit.
At the beginning of this latest health care battle, we agreed I would calculate the food values for each food item, and he would log what he ate in his food journal. It sounded good in theory. Yet, I didn’t realize the sheer volume of food and snacks we ate or the staggering amount of administrative work hidden behind this plan. Believe me, it’s a project, and I don’t get paid for this shit.
I also underestimated how difficult it would be to find phosphorus values, even on the USDA website, which can feel impenetrable. I faced the daunting task of hunting down nutritional data for things as small as mustard and garlic.
I don’t know who to blame for this arduous task. Do I blame myself for trying too hard and being a perfectionist? Or do I blame my partner, who can’t break his eating habits despite a team of medical professionals telling him he must?
Filled with overwhelm, I decided to temporarily walk away, head into town, and get myself a grilled cheese sandwich. I sat at a table and stayed in the summer sunshine for as long as I could, watching people run errands and lead normal lives. I needed to remind myself that life still existed beyond the four walls of my apartment and my life as a caregiver, that this was just a moment in time, a season. Everything is temporary.
Then I went home and corralled all the chocolate into one place. I reorganized the shelves and bins. Everything is in its place for now. I told my partner that he CANNOT buy any more nuts or chocolate or biscotti until at least September. We have enough to open our own small store.
But can he even comprehend this? Am I spinning my wheels, going nowhere, with this rhetoric?
I decide the dietitian is just going to have to help me with the phosphate information. If I can’t find it, I can’t find it. I’m at the tension point between control and surrender. I know control is an illusion, but surrender feels like defeat.
Still, I’m not going to kid myself. I’m going to try to log the nutritional values for his legion of snacks and then I will show the dietitian what he is eating. Show, not tell. If she sees a photo of my pantry, along with an online printout and the 75,000 index cards (a slight exaggeration), perhaps, she’ll see what is going on here.
Where do I draw the line? Am I being too hard on him? Am I not being tough enough? Am I going to be the food police forever?
Beyond the battle between control and surrender, I am left with this question: What part of this belongs to his mild cognitive impairment, and what responsibility still belongs to him as a grown-ass man who has to accept the consequences of his choices?
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A rock and a hard place. I'm sorry you are dealing with that, on top of the grinding day to day struggles we all have. I'm thinking of you.
Hi Carolyn. This particular diet is always hard for everyone to calculate thoroughly and to stick with. You are giving this heroic attention and your partner is very fortunate that you are such a capable and dedicated person able to support his health and deal with the CKD diet. It does not help either of you that that he has memory issues as well.
When I was a medical social worker case manager I often witnessed challenges in households between patients with a chronic disease that had a medical order for a specialized diet balanced against the patients’ wishes/self perception of quality of life. I have no idea how diminished your partner’s cognition is at this point but I have not heard you mention that he lacks capacity. Now may be a good time to for both of you to have a discussion with your primary care provider about the definition of “quality of life” for your partner IF he has enough capacity to understand that deviating from this CKD diet has the potential for serious medical consequences. Likely a happy medium ground can be found. I can state with certainty from years of experience in my work that as patients experience cognitive decline and their world starts to get smaller, normal everyday things, like treats, take on increasing significance in promoting a feeling of happiness. It is worth a chat with the MDs re how to manage the CKD well enough vs optimally. Sometimes it is also possible to find non edible diversions for some patients that generate a feeling of happiness without or with fewer food treats.
So sorry you and your partner are in this situation together.