Brain fog

Hello Lyon, oh yes! I know this so well! The treatment for prostate cancer disrupts the ‘couple relationship’ in so many ways. My husband has always been my rock. Suddenly, instead of walking through life with him being’always there’ and the person who thought through everything, remembered everything, saw every little nuance while I blundered my way through life it felt like I had lost my rock! , I was having to do the thinking for both of us! I wondered at times when it was at its worst if he was developing dementia! 

since ceasing hormone therapy in May, he has gradually been ‘returning’ - until this week! He has several health issues and one flared up, out of control, this week involving another dash to hospital. The brain fog has enveloped us again! So, I’m now wondering if this is my husband’s own natural response to anything going wrong with his body and not the cancer treatment ? Do we all do this when ill?? Do us wives and partners ‘see’ something in our menfolk’s behaviour that others don’t see ?

As for dealing with it, i don’t think there is anything else we can do but be the ‘parent’ until the brain fog clears, sadly. But, it’s hard! Fortunately my husband doesn’t become angry or frustrated. He becomes quiet, withdrawn, forgetful, distant - just ‘not here by my side’ in the same way as he has been since I was 17 when we first met. It’s hard! 

I guess this is a price we all have to pay as the ageing process takes hold? It will be interesting to hear how the men posting here experience this brain fog and what might help them.

in the meantime, I hope that things get better for you both. 

Hello Lyon. I can recognise your husband's anger and frustration as I have seen it in my husband. We try and laugh it off but have had to implement little coping strategies like having post it notes, a calendar which we make notes on, making lists, keeping his mind active with puzzles. I have to make a conscious decision not to behave in parent/child mode at times and remember that it is not his fault, it is a side effect of the treatment which he has been on for 4 years. On the positive side it has not got worse in that time. I have attached a link which might give you some more ideas.

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/practical-emotional-support/hormone-symptoms/sex-hormones-thinking-memory

Good morning Lyon 

I know the feeling about "Brain Fog" - I had a bad couple of weeks where it flared up and I was bad - now I put it all down to old age as it's not got any worse!

On your next 3 monthly review it's worth telling your team about this - I am aware it's a general condition of HT but sometimes a change in medication can affect the side effects as we all react differently to the brands of HT.

Best wishes - Brian.

This is a side effect that I find interesting.

I am aged 71, and have suffered some of the normal memory effects of aging (you know, "Have you seen thingy lately? You know. whatshisname?") As far as I can tell. This happens to everyone.

Since starting hormone therapy this kind of thing has changed, and my coping methods have had to change with it.

I am used to the idea. My 40 year old daughter has had ME/CFS for 20 years, and brain fog is a major symptom. We all have to help her with, and if you are surrounded with good people who understand and make allowances, then life is well regulated. In my daughter's case you could say that it has become our problem, not hers.

In my case, I had been used to working on a task list, and with a calendar, for the whole of my working career. My family ask me to do things via WhatsApp Or even email, and that goes straight into a task list. I then set a reminder if it needs to be done at a certain time.

Since I used my phone to measure the amount of brisk walking I do in a day (NHS Active 10 app) it almost always with me.

The real problem is that my train of thought can so easily get derailed. We'll. Not so much derailed as turned onto a different track and happily progressing to an entirely different destination.

For example, I am supposed to be washing up now.

Over 40 years working for a bank, I got so used to thinking in terms of process, appointments, schedules and deadlines that I actually think like a series of bullet points. If something occurs that disrupts that I have great difficulty in remembering where the original track was, let alone which direction I was going in.

My daughter calls it an "Ooh shiny, moment".

So, I have to be reminded to put things away, close doors, do shopping. Anything anyone wants done gets put into a list.

I am perfectly capable of doing even the most complex tasks provided no one interrupts.

It is not the same all the time. Many days I go by with no problems at all. Then the fatigue which is also a feature of hormone therapy kicks in, and I am up the creek without a paddle. Or even a boat, sometimes.

However, my whole family have seen this, what with the menopause affecting my wife, and ME/CFS affecting my daughter, we try to find the parts of it that are amusing. They do exist. The key to memory, I have found, is not to pursue what you are trying to remember, but to relax and get on with life. It will come back to you while you are doing something else.

Here is a reminder Steve - washing up has to be finished, empty the washing up bowl, squeeze out the dishcloth and hang up, then drying up, crockery and cutlery put away, close cupboard doors and drawers, hang up the drying up cloth and RELAX.

My husband suffers from aphasia thanks to his stroke many years ago which means that he has a problem getting words out and gobbledegook results in him barking like a sealion, especially if he tries to think of more than one thing at a time. I find I can make him laugh by oinking like one and flapping my flippers (hands) in imitation. As the saying goes 'Little things please little minds and bigger fools look on in sympathy'.

Oh Yes!

I know about brain fog!

I'm nearly 6 months free from HT and nearly 18 months on from RT - but my brain doesn't see it that way... I'm currently working on analytical statistics, and spent much of this morning staring blankly at a sheet of figures. I couldn't work out what was what or the relationship between any of them. I finally chucked the papers on the floor in total disgust with myself. 

I couldn't remember what I had done, so far... and I couldn't remember what the next stage in the process should be!  I have opted to go to the pub and have a quiet pint while I try to regain some sense of order...

Andy

I've had brain fog every since starting HT 10 months ago, it's incredibly frustrating.

I feel like I went back to have a brain of a 5 years old. I keep forgetting things, the other day I forgot to unload the washing machine and found it out the next morning. I find myself using the wrong keys trying to open things (use the shed key to try and open the house) or trying to put the wrong lid on boxes in the kitchen and getting frustrated why they wont fit, until I notice it's the wrong lid. These are all things that NEVER happened before. Things that I would never treat as "a puzzle" now require conscious effort to do and get right. If previously, if I wanted to do something, my mind would just automatically make a list of what is required and in what order, it doesn't do that with brainfog and I end up missing basic things in what used to be previously on autopilot. It really gives you a feeling you've lost your cognitive capacity, as you don't mange do to very basic things.

At work I find it very hard to concentrate on technical data, and I function at a fraction of my pre-HT capacity. 

Everything has to be managed in lists and marked calendar entries. 

I use daily an app call Elevate to try and get extra "brain exercise", sometimes I feel it just highlights what I cant do, but it's supposed to help.

I'm not sure there is anything you can do directly to help, except being extremely tolerant. Maybe break questions to single topics/stages, as unbundling a long/complex question into elements becomes a real chore with brain fog, and more often then not you just don't remember half the question.

Sorry for the rant, but this topic does hit a nerve with me.

G

Thank you all so much for your replies, reading which I have both laughed and cried. At least I know we're far from being alone and I very much appreciate your advice and tips in coping with this. I too hate seeing the change in OH, now shuffling  and bumbling and, on occasions, shouting in frustration  I will indeed make sure it's mentioned at his next phone review in October. Meanwhile, thank you all again for taking the time to care. It means such a lot.

"Here is a reminder Steve - washing up has to be finished, empty the washing up bowl, squeeze out the dishcloth and hang up, then drying up, crockery and cutlery put away, close cupboard doors and drawers, hang up the drying up cloth and RELAX."

This is so close to an actual event that happened 2 weeks ago - so I will use your words to illustrate the sort of things brain fog can do.

In fairness, I was left unsupervised whilst my wife went out with the ladies that coffee.

• Washing up has to be finished
• Empty the washing up bowl
• Squeeze out the dishcloth and hang up
• Then drying up
• Crockery being put away
• Come across a jam pot I don't remember seeing for a long time.
• Small panic - my wife has re-organised the kitchen and I don't know where is goes.
• Wander around looking for inspiration.
• Find a cupboard, put jam pot in.
• Turn away to re-start.
• Forget to close cupboard door..
• Find something else to put away and turn back - striking head on corner of cupboard door, hard enough to draw blood.
• Swear incoherently.
• Leave kitchen to find something to put on head
• Find first aid box - extract plaster.
• Use mirror to place plaster on top of head.
• Remember a moderately important email I intended to send (this is an "Ooh shiny" moment).
• Nip upstairs to my study/hovel and send email.
• For a moment feel unreasonably pleased with myself.
• Look at time, remember wife is due back shortly and I haven't cleared up the kitchen
• Hurry downstairs without killing self (success).
  
• Cutlery put away close cupboard doors and drawers
• Hang up the drying up cloth
• RELAX.
• Wife returns.
• "Why have you got a plaster stuck to your head?"
• Explain. Muted giggling.
• I make her a cup of tea.
• I forget to tell her where I put the jam pot....

This thing changes you. It is annoying.

It doesn't actually affect your intelligence, but you become very easily distracted, and lose concentration.

I am glad that I had a manager earlier in my career who showed my how to use a "brought forward" system, the idea of which has helped me. He taught me not to rely on my memory.

I am investigating various "second brain" apps and websites, to see if they will help. Oddly, it seems that the least hierarchical that might.

Thank you so much Alwayshope .

You bring some extra light into the dark. 

I think that is a highly intelligent response.