The stress of caregiving and grief led to brain fog I didn’t notice at first
I thought that staying on top of things would keep my husband's ALS at bay
When my late husband, Jeff, was diagnosed with ALS in 2018, I knew it would bring emotional challenges for both of us. I expected — correctly, as it turns out — that we’d feel scared, anxious, and sad. I recognized the immediate and lingering shock it brought in different ways.
What I hadn’t expected, and frankly, didn’t even realize at first, were the concentration challenges I faced while living with Jeff’s ALS. There’s even a term for it: brain fog. Only in my case, it felt far more dense than fog — brain clouds, perhaps, or brain blizzards. I began to experience trouble focusing, remembering things, and occasionally even communicating.
I’d always considered myself a reasonably intelligent person — I was capable of understanding complex concepts and recalling important things. I’d done pretty well in the school subjects I was most passionate about, and had a job that demanded some intellectual capacity. I certainly wasn’t going to be winning any Nobel Prizes, but I could get along OK — until ALS entered the picture.
At first, I didn’t even realize that caregiving and living with the daily realities of ALS were affecting my concentration. I missed an important appointment with someone I loved, and when she gently reminded me, I realized that not only had I missed the appointment, but I also didn’t even remember making it. That was the first jarring moment when I realized that my brain might not be operating the way it had in the past, and I had to consider that our circumstances might be part of the reason.
Only so much brain capacity
The Cleveland Clinic notes that brain fog is a common group of symptoms that affect how people think, remember, and concentrate. It suggests that brain fog can make performing ordinary tasks challenging, and while it is usually temporary, it can persist for years.
This resonated with me when I first read about it after Jeff died. When he was diagnosed, I was convinced that staying organized and on top of things would somehow keep ALS at bay. I assembled into binders the deluge of pamphlets we’d been provided upon his diagnosis, and created calendars of symptoms and appointments to track every aspect of his disease. I recognize now that these actions were, in part, an effort to claim some sort of control while feeling none. This strategy, of course, didn’t work.
Instead, I had to gently let go of the idea that I could intellectualize away any aspect of ALS and come to terms with the idea that, just like Jeff was not entirely OK, maybe I was not OK, either. I was frightened of both the present and the future — fearful of not being a good enough caregiver, and in despair over the outcome of losing Jeff, who was experiencing a faster-than-average progression of his disease. Stress, I have learned, is one of the many causes of brain fog.
I remember that while Jeff was living with ALS, I was more apt to forget conversations, mundane tasks, and even birthdays. Something could come into my head and be gone in the same moment, especially if I didn’t write it down. I would routinely start things and not finish them — reading magazine articles, ordering something online, or responding to a text.
During caregiving, I was so immersed in both the big picture and the minutiae of ALS that I didn’t recognize how frequently I missed details of life outside of ALS. It wasn’t until some months after Jeff’s death in May 2020 — 19 months after his diagnosis — that I realized those things. And grief comes with many attendant challenges, including brain fog of its own. I remember feeling pretty hard on myself for observing that my mind had been on partial hiatus during caregiving and early grief.
On the other hand, I recognize that during those years I was also learning and growing. Even through the exhaustion, I was learning to take care of another person in complex and challenging ways. I was developing knowledge that was helping someone I loved stay safe and cared for. In retrospect, it makes sense that my brain only had room for so much. In that way, I have been able to be a little less judgmental and a little more kind while living with a sometimes foggy brain, both then and now.
Note: The Cleveland Clinic suggests letting a healthcare provider know if you experience brain fog, especially if it’s disruptive to your daily activities and routine. It reports that brain fog is common, and a healthcare provider can help you determine what’s causing your symptoms.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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