An Idea...re Brain Fog etc...

[DrunkJam_UK]

Hey lovely LCers. Hoping the weekend finds you well? (as much as possible)

I have been struggling with helping DH with his Brain Fog and deafness. This seems to be cancer related, and is definitely getting worse, (he is on his third cancer diagnosis so, it's not surprising)

But it's very lonely here knowing that he won't hear what I say until I repeat myself two or three times (and sometimes until the Children have joined in too) and that even if he hears me, his ability to join what I have said to any of his existing knowledge is greatly impaired (imagine trying to make surreptitious Christmas plans!)

Of course this is not in any way his fault, which doesn't reduce the loneliness.

So I am wondering whether I could work on a booklet of ideas and helpful ways to work with this to make communicating actually work. maybe e not a booklet, maybe a set of counselling sessions?

I don't know. I just feel like we need *something* specific to this issue?

Ideas anyone?

[MeNotDavid]

Dear Drunken Jam. How I sympathise. My husband David has just died, not of anything CMM related (his diagnosis), but of somethig else that seems to have had to do with his brain. So I was struggling with the same kind of communication problems - only slight deafness, but much more mental deterioration, which made me seek, and not really find, some kind of counselling as to how to communicate with him. I'm deep in the aftermath of our loss right now so couldn't contribute much, but there is a definite need there. Maybe later I could come back to it? But certainly you have my sympathies

[DrunkJam_UK Administrator in reply to MeNotDavid]

Oh, my lovely, I am SO sorry for your loss.

I am reassured to hear that there is a need, and not just me!

Please do feel absolutely free to come back to this when / if you feel able, and drop me a message if you need a chat or anything

[MeNotDavid in reply to DrunkJam_UK]

Thank you, Drunk Jam, for your sympathy, I will be back.

[2003UK Champion]

Hi, I am struck with how isolating and very lonely this must be for you, my buddy.

Not to take this away from you but my OH has had blocked ears just today and is Mr Grumpy and I am aware of either saying things in my usual tone and I get either 'what' or 'I can't hear you'. so I either shout or the moment has gone. I am in danger of not saying anything in the first place. As it's Sunday I walked miles to get him ear drops today and got home with my purchase and all he said was that another brand was better. And I have only had one day not 365 a year as you have.

As for brain fog that is a more difficult one, perhaps a diary for Christmas might help in one way, Colorful sticky notes might help so each of you has a different colour. Then it makes it a family thing and not just another frustration that he cannot remember thing.

As for tying things to any of his existing knowledge as it is greatly impaired again so frustrating for him. that is more difficult. Perhaps suitable puzzle books depending on his interests. Jig saw puzzles that he could do with the children, even helping them with their homework, if you think that it would benefit all!!!.

I wonder if a cancer charity could give you ideas or his medical team.

My experience is that if my OH is angry, cross or frustrated it is me he takes it out on and that really hurts me so I cannot imagine what it is like for you.

I don't know if I have been any help at all or given you ideas for Santa this year.

And we are here for you as always and I will be about over the festive season for you to say how it is for you xxxxxxxxx

[DrunkJam_UK Administrator in reply to 2003UK]

Thank you! Honestly, it's driving me barmy. He's always struggled with listening, but, now he has implemented RULES

I have to

1) ALWAYS be in the same room

2) Establish that I wish to say something

3) Make sure there is no other noise

4)Make sure he is LOOKING before I speak

And then he still gets angry because he doesn't understand what I mean or why I am speaking.

(and it's a pain in the butt if I am in the middle of cooking or helping a child or something else room specific, because *I* have to switch everything off, find him, get him to understand me, then apply his answer, even if the question is only "do you want broccoli with your dinner?")

Then add int he fact that if I say something he will have genuinely NO idea that it relates back to another thing I have said. Like, "have you got the thing out of the attic" does not in any way join together with the fact that I asked him to get the elf on the shelf down from the attic in time, but I can't ask specifically in front of M. Or the number of times he can't find something because he cannot remember me SHOWING him where I put it. Or "have you added your insurance details to the holiday paper? In no way does this connect to that fact that I gave him a one page guide to our holiday with day by day plans and reservations etc, so I have to explain AGAIN, LOUDLY, that I gave him a page that includes all the travel plans, dates times transport, and food etc, and the insurance contacts for me and the kids, but HIS insurance is separate, so HE needs to add the details

At NO point can I speak to him while the telly is on, so there is no point watching anything together (and he has regressed to ONLY watching war films, Star Trek and the news anyway - nothing new is of interest

I know he is worried, and I know he can't help it, but, it's incredibly lonely, and I am also sick of being shouted at because he is angry about either the fact he can't understand OR the fact that I am speaking at all, I can't tell anymore.

(I have got myself Christmas gifts since he doesn't like to have to think about it, and last time I left it to him, he just told the kids I was on the naughty list, which upset them)

[2003UK Champion]

Oh, I should not laugh at the Implementation Rules but what can I say.......

Why are his priorities so more important than mine. Up to my elbows cleaning the toilet and he wanted to know what to write in his sister's Christmas Card !!!!

Yes, as for when the TV is on, that certainly is a No, No.

You must feel like a verbal punch bag, which must be so wearing and exhausting.

Great idea getting your own Christmas presents at least you get what you want.

Just lock yourself in the bathroom, a lovely hot bubbly bath and scream into your towel.

I am watching a couple of TV programmes on Freddy Mercury on TV. Time to get into my PJ's and bed socks that are currently on the radiator.

Keep posting my friend xx

[Ghounds]

I honestly don't know how you keep going. I would have done him (or myself) serious harm by now.This might be a silly suggestion but I'm sure the caregivers of dementia patients have suggestions made to them with regard to communication? I'm not for one second saying DH has dementia but the challenges sound a little similar in that he isn't currently making connections and is frustrated (as anyone would be).

I do hope you can get a little respite here and there.

[DrunkJam_UK Administrator in reply to Ghounds]

THank you.

Apparently, there *is* support for post treatment cognitive impairment.

Unfortunately, you have to be post treatment for that to kick in, and since he is currently in further investigation and being treated, that is not him. His GP is hoping the might get there one day!