What is brain fog like? How can I better understand as a caregiver?

I have 24 7 brain fog from long covid and having brain fog is really described in 2 parts. I hope this will make sense. First, it’s the head sensation that your eyes and top of head is heavy/pressure like your wearing a helmet. When you look around, it’s like your head is in a bubble. You look around and your vision is clear, but your head is foggy. Your reflexes are slower. It’s like going to bed for a few hours and waking up or the feeling when you wake up from anesthesia or you’ve taken a bad drug. The second part is the short term memory loss, difficulty with attention, focusing, multi tasking. Then lastly, from this you can get exertional fatigue from things you do mentally and physically. Hope this helps.

Thank you @collenyoung for highlighting this discussion and for your good explanation of how brain fog can feel.

As a lymphoma patient (DLBCL) who completed chemotherapy in April 2024, I am still struggling with brain fog today. This brain fog affects my short term memory, ability to focus, and causes trouble multitasking.

Being a software developer for 40 years (retired after cancer treatments), this lack of mental sharpness is an ongoing challenge. I do try to find acceptance and some humor in the brain fog issues but it is frustrating at times. I continue to work on it and remind myself each day how very fortunate I am to be here.

Reading of others who are struggling with brain fog and sharing my own experience in this community is comforting. It helps me remember I am not alone in this. Thanks to all the members who have shared their experiences here.

In case anyone missed this educational posting by Mayo education on brain fog after cancer, including the link here. The information below was encouraging to read in that brain fog can improve in some cases and provided some information on things that might help. Best wishes to all dealing with this.
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/your-brain-after-cancer-what-to-expect-and-how-to-help/

Correction to name above….Thank you @colleenyoung for highlighting this discussion and for your good explanation of how brain fog can feel.

I have had it twice. Once, after a serious lupus episode. That brain fog left me helpless and almost childlike. I couldn't remember what you said at the beginning of a sentence you made. No matter how hard I tried, I just couldn't hold anything in memory. My speech was garbled. Luckily, that faded.
The second episode was 2 years ago after a craniotomy. I simply lose words and I have lost a lot of memory. When reminded, memories come back. But I do know something is not right. I can hide it and I hope it also fades. I work on this all the time by reading and writing. I read hard, big books and challenge myself.

Brain fog can be from chemo and also Covid brain from long Covid. I have chemo brain and covid brain. With chemo I have problems remembering faces and names. Been going to chemo for 5 years and cannot remember names of most of the nurses. I just smile and say hello when they say hello to me. Chemo also affected my hearing. Hearing is not just from eardrums. Brain is part of hearing. Sound travels from eardrums to brain and brain sends info back. Drugs said could affect hearing but was not expecting what I have. My hearing fluctuates. My tv volume varies from 23 to 42 depending on what the brain is doing.
Covid brain fog is different. My brain feels like its floating and can't think logically. No dizziness - just a lightheaded feeling. I never do important financial things when I have covid brain fog. Before covid I could remember the name of my piano teacher from 70 years ago - I can picture her in my mind but brain wont give name. But it gives me the name of the janitor in elementary school 75 years ago! When I'm talking all of a sudden the brain does a reboot and I have to try to remember what I was talking about. Sometimes comes back right away, other times have to wait a few minutes. I can picture something in my head and tell you what it does but brain won't give name. Then later on the name will just pop into head. Can't remember amounts in recipes when cooking. Always have to look up recipe to be sure I'm using the right amount of seasoning, etc. Can't remember how to do things in some computer programs so have to look in manual to see how to do things that I used to do before. Have to look at camera manual to see how to do settings for different things. Use to be able to take good pictures of moon at night, now I'm still trying to figure out what settings I used.
Brain fog is not the same for everyone. Everyone has an experience that is peculiar to their body and health.

As for me I’m 9 years post stage IV treatments. Brain fog for me has been; loosing focus during a conversation as my mind is wandering. Forgetting what I was going to do. Forgetting what I was supposed to do. Slow reaction. I seem to be more temperamental or emotional which I have never been.
I also suffer from chronic migraine caused from the radiation so maybe that causes brain fog?
So many things have changed for me and so many of you but at least we are ALIVE!
Fight the good fight.
Jody

@sandy8043
Hello I have that and I’m so frustrated. I’m on Hydrea 500 mg 2xa day.
Can that chemo cause it.
Someone said it feels like a weight is sitting on your brain. Yes true. I am so frustrated. It’s not all the time. Everything that is said. Is what I’m going through.

@dts68, that sounds frustrating. Hopefully the really important things resurface again. Have you ever tried making up a ryhme or other memory aid as you reach for the notepad. For example, if the 3 things are: order concert tickets, call pharmacist, put out the garbage, could you recite TPG or tickets, pharmacist, garbage repeatedly until you get to the notepad? Do prompts help?

For so many of us who have brain fog, here is some advice that helped me through my episodes:
1. Carry a notepad. Takes notes. Write down your thoughts and schedule.
2. Photograph where you parked your car in the parking lot. I've gotten lost so many times.
3. In the cases in which you really do lose your thought (as in ordering at a cafe with a long line of impatient people behind you), point to your brain and say ''Old Brain!'' That breaks the tension, buys you time while other people contribute their own stories of forgetting. And everyone has a story, believe me.
4. I am pretty sure I've forgotten everyone's names. When I meet up with them, I just laugh and say, I'm having a hard time remembering names, could you help me?
5. Last but not least, read books. My memories slowly returned when I started reading regularly. And don't fret, the brain is plastic and it can heal.

@julymt - I'll describe my experience with brain fog, as it varies for everyone. I was receiving classic chemotherapy for leukemia, and it hit me like a brick a few months into therapy. Very suddenly, I started having difficulty finding the words I wanted. I knew the word was there, but I'd have to talk around it ("dysnomia" or "anomic aphasia"). I'm now ten years out, and it has gotten better, yet I still experience it occasionally. It's TREMENDOUSLY frustrating.

I also found difficulty "multi-tasking." (I know; no one really multi-tasks. We switch from one task to another and then go back.) I realized I had difficulty keeping track of what the previous task was. I would need to complete the task I was on. If someone (like my spouse who was - and still is- my primary caregiver) asked me to do something, I would need to ask her to hold on to the request for a moment until I reached a good time to respond. As with the dysnomia, it's no longer as bad but it's still there.

I found I absolutely NEEDED to write myself notes and set reminders to keep track of things. I bought a large quantity of post-it notes. Now (ie, in 2026), I still write lots of notes but how I do it has changed. Yes, I still use post-it notes. I also use the notes app on my iPhone. We use Alexa at home and there's almost never a day that I don't need to set a reminder on Alexa for something - later that day; another day; or even another week or two.

The tool I use to keep my gratitude journal (certainly has been a help for me to keep my spirits up), lets me set reminders to tasks - I use that, too.

In addition, I set alarms on my watch to remind me of critical things. Simple exmple - to remind me to take my anticancer drugs every morning.

I also use a pill reminder on the bottle of my anticancer medicine so I can see if I have taken the medicine on a day.

And yes, I often set myself several different reminders in different ways.

In other words, the memory problem flows into all areas of my life - and while it's not as bad as when it first developed (I'm no longer on the chemotherapy drugs that caused it), it absolutely is still there. I have had to develop an entirely new and expanded set of external tools - my "peripheral brain" - to stand in things that my mind used to do easily, but which it no longer does.

It looks exactly like some of the symptoms of dementia (because they are the same symptoms), except for me, they were 100% side-effects of the medicines to treat my cancer.f