Bookworm, replying to Necion's comment here about my hubby. Yes exactly that (I believe she would never be patronising). I have been telling hubby's medics that "his brain is not seeing what his eyes see and his brain is not hearing what his ears hear". Not been just telling them, writing in many letters. Somehow "their (his medics) brains are not hearing what I am saying and their brains are not reading what I am writing". Lx
Does he know he has dementia?
- Thread starter Bookworm
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Not hearing & not seeing
Got to smile really....same here - EXACTLY the same - got his peripheral vision checked as he could not "see" (turns out cannot PERCEIVE) items at the edges of it - say if loading dishwasher, in fact at times the way he behaves you'd think he has a cone on like a cat or dog who has had an operation & he uses his head as if he sees through a tunnel - so moving head instead of eyes as we would; also got ears checked - yes - bit of wax - but after wash out, UNDERSTANDING no better - nothing at all wrong with hearing - in fact he can hear and process things I'd rather he didn't hear from 1/2 a home away spoken quietly.......seems tuned in to the odd, the possible risk to himself, possible criticism but simple sentences spoken directly to him, instructions if you like, prefaced by his name to ensure I have his attention - well you can see by the glazed look that he hasn't a clue what I've just asked him to do.....
Hi all, hope everyone's coping today.
Sue, it's intersting what you say about the difference between 'see' and 'perceive'. A perfect description.
When we read posts from eg Norrms, Miss Cool and many others, they highlight things first-hand, but of course these things are still difficult for us to understand without having been there.
It's wonderful that we have friends like these who are selflessly willing to to share with us, I'm afraid I'm just not too good at learning!
I hope we can keep this thread going, to share our new 'observaions' and learn from each other. This is so very complicated, if the medics don't understand it all, I think we can all be forgiven for struggling a bit,
Wishing everyone a peaceful day, take care all,
Love, Necion. x
Sue, it's intersting what you say about the difference between 'see' and 'perceive'. A perfect description.
When we read posts from eg Norrms, Miss Cool and many others, they highlight things first-hand, but of course these things are still difficult for us to understand without having been there.
It's wonderful that we have friends like these who are selflessly willing to to share with us, I'm afraid I'm just not too good at learning!
I hope we can keep this thread going, to share our new 'observaions' and learn from each other. This is so very complicated, if the medics don't understand it all, I think we can all be forgiven for struggling a bit,
Wishing everyone a peaceful day, take care all,
Love, Necion. x
When we talk about seeing and perceiving, I am in a quandry. Mum is virtually blind and constantly blames her forgetfulness on not being able to see. Sometimes that is true, but as I keep questionning, what about all the things you learned when you could see, the things that you did unthinkingly, why does not being able to see mean you have to phone me 4 times in an hour to ask me the day or the month. Being able to see shouldn't mean that you forget that January comes before February, or that your Granddaughter's baby should have been born 8 days ago. I know the reason she forgets, she thinks she would remember if she could see. Of course I don't say all of the above to her each time, that would be a complete waste of time and effort, so it's "Friday Mum, January 28th, yes it's 2011".
You raise a very interesting point Maureen. It makes me wonder if people with cognitive impairment, for instance, do have some sort of disruption between eye and brain (as I have been describing to hubby's medics). Hubby's Grandma used to say that she could not hear when she had her glasses on - and maybe there is something in that - but what? (answers on a postcard please or via this thread!!. I hope baby arrives soon. Lx
Addenbrookes Hospital has the most advanced Neurosciences Critical Care Unit in Britain (there are only 3 at this level in the world) and there is no doubt that they save many many lives when people have had accidents/strokes or whatever which have caused brain damage. I would think the consultants there are very knowledgeable about how the brain works or doesn't work. Scientists from the university are often involved with patients and do extra scans with very sophisticated equipment to try and understand what's going on. However, in my admittedly limited experience, you get an awful lot of 'we simply don't knows' from them.
What I'm trying to say is that on the whole, your average neurologist is fumbling in the dark and whilst they do their best to work out exactly what's going on they often have to fall back on the most likely explanation. Unfortunately, dementia isn't sexy or newsworthy which is why all the people on here (and the Terry Pratchetts of this world), who try to help the rest of us to understand what it feels like to have dementia are generally more important (and useful) than the scientists.
I'll shut up now
Teresa x
What I'm trying to say is that on the whole, your average neurologist is fumbling in the dark and whilst they do their best to work out exactly what's going on they often have to fall back on the most likely explanation. Unfortunately, dementia isn't sexy or newsworthy which is why all the people on here (and the Terry Pratchetts of this world), who try to help the rest of us to understand what it feels like to have dementia are generally more important (and useful) than the scientists.
I'll shut up now
Teresa x
Today
Hi Bookworm,It would be really lovely to know that your day has been less fraught than some of your recent ones. I hope that you and your husband have had some sun shining down upon you - even though it is likely to have been a very cold and crisp day. Lx
Hi Bookworm,It would be really lovely to know that your day has been less fraught than some of your recent ones. I hope that you and your husband have had some sun shining down upon you - even though it is likely to have been a very cold and crisp day. Lx
Thank you
I've cleared some work - still more to do - but on the "home straight" - so a little less fraught - thank you for asking & a worship concert to attend tomorrow night where they will make a live album recording will be good respite for son & I. & Volunteer role in local theatre organised for last night of a superb run of Beauty & Beast for next Saturday - someone is spoiling me - but don't we need & deserve a little spoiling when spouses don't do it!!
What about you dear Logan??
I seem to be very calm because I'm over tired!!! Perhaps that's the answer to compassionate communication - carer fatigue works too!! Well the nutritional supplement doesn't seem a good idea - as we only got 4 to try and he drank a whole one straight off and promptly went to leave house for 3 hours without food - so we would really need to think about principles of when or why they would be used. Turn again Whittington.....back he came for a snack!! But they do have vitamins in which would add balance!
I've cleared some work - still more to do - but on the "home straight" - so a little less fraught - thank you for asking & a worship concert to attend tomorrow night where they will make a live album recording will be good respite for son & I. & Volunteer role in local theatre organised for last night of a superb run of Beauty & Beast for next Saturday - someone is spoiling me - but don't we need & deserve a little spoiling when spouses don't do it!!
What about you dear Logan??
I am just going to have to let everything tumble down. When that happens the medics will have to do something - believing me and supporting me would be very nice. Hubby is ok just so long as there is nothing realistic or perceptive to deal with. Unfortunately there are things of that nature to be dealt with. It is then that I usually am told that I am ridiculous and need to get real etc etc. He has still not made a Power of Attorney. I would just have to go to the Court of Protection if needed. Been there once before when I was given Receivership for my mother who had not made a Power of Attorney either. This is my husband who has always been so willing for me to do all the business side of the marriage and has so many times said "oh you do all this so beautifully Logan". Now he does not trust me. Lx
Unravelling
Jennifer is probably right - he won't starve - not sure I'll get more of the drinks at present - but it is shocking to see how little he remembers to eat at times. Hair still over long - must surely be time someone close to us who currently doesn't accept it would say - "Hmmmm???" - Accountant in house yesterday didn't pick up on much - he gave her 3 coasters for her one mug, dealt moderately well with all my points/requests - though he was rolling his eyes behind her back at me for asking some things....& after he couldn't see the point of paying her to do his taxes & today when she said we wouldn't owe anything he was neither pleased nor displeased - just disinterested - but not doing the on-line form - would have been my 4th year - is such bliss for me!!!!! & when I mentioned about the camper van I had so bravely sold last summer - having never done anything like that from our drive before - it was such a "white elephant" - it only did 200 miles in about 7 years & cost such a lot in MOT, tax, insurance - all he could say to her was - I loved that van.....I said - it was a shed on the drive...... I think she was beginning to get the picture.
So - today - as no-one much thinks there is much wrong - i let him go out with his jumper back to front - he's never done that before......certainly looked eccentric. 6 months ago I would have rescued him......now I just long for others to be aware so we can move into the next phase where there is honesty....
Someone may see soon ??
Jennifer is probably right - he won't starve - not sure I'll get more of the drinks at present - but it is shocking to see how little he remembers to eat at times. Hair still over long - must surely be time someone close to us who currently doesn't accept it would say - "Hmmmm???" - Accountant in house yesterday didn't pick up on much - he gave her 3 coasters for her one mug, dealt moderately well with all my points/requests - though he was rolling his eyes behind her back at me for asking some things....& after he couldn't see the point of paying her to do his taxes & today when she said we wouldn't owe anything he was neither pleased nor displeased - just disinterested - but not doing the on-line form - would have been my 4th year - is such bliss for me!!!!! & when I mentioned about the camper van I had so bravely sold last summer - having never done anything like that from our drive before - it was such a "white elephant" - it only did 200 miles in about 7 years & cost such a lot in MOT, tax, insurance - all he could say to her was - I loved that van.....I said - it was a shed on the drive......
I think she was beginning to get the picture.So - today - as no-one much thinks there is much wrong - i let him go out with his jumper back to front - he's never done that before......certainly looked eccentric. 6 months ago I would have rescued him......now I just long for others to be aware so we can move into the next phase where there is honesty....
Someone may see soon ??
Sorry Logan
That ramble was meant to include some comment at some point about us being in similar positions.......trying to be caring but also needing to be strategic because so much (of personal lives) is at risk if we get this phase wrong......
That ramble was meant to include some comment at some point about us being in similar positions.......trying to be caring but also needing to be strategic because so much (of personal lives) is at risk if we get this phase wrong......
Trust
Yes - trust - you need that Logan - I guess I am fortunate that if I am sensible & ensure he has enough cash & guidance & gratitude for his help - he at present trusts me....but it hasn't always been like this - the van was £3000 wasted in 2003, there has been soooooo much financial waste - only this year I realised it was costing more to heat the greenhouse to 4 degrees C on gas than it was to heat the house oil.......doubled up on insulation now, all settled. Had to cancel about £500 journal subscriptions a few years ago - not reading them........money just slipping through our fingers like sand all because of his lack of insight & planning....
Back to thread title - he may know there is something wrong - but not the extent of the damage to so many aspects of life - appearance, nutrition, finances, relationships, business, friendships - I could go on......
Yes - trust - you need that Logan - I guess I am fortunate that if I am sensible & ensure he has enough cash & guidance & gratitude for his help - he at present trusts me....but it hasn't always been like this - the van was £3000 wasted in 2003, there has been soooooo much financial waste - only this year I realised it was costing more to heat the greenhouse to 4 degrees C on gas than it was to heat the house oil.......doubled up on insulation now, all settled. Had to cancel about £500 journal subscriptions a few years ago - not reading them........money just slipping through our fingers like sand all because of his lack of insight & planning....
Back to thread title - he may know there is something wrong - but not the extent of the damage to so many aspects of life - appearance, nutrition, finances, relationships, business, friendships - I could go on......
Hi Sue, your last post.....been there - still wearing the T-shirts with £s & ps beautifully embroidered!!
You initially asked - does he know he has dementia, only your husband can answer that of course, but I know my John is well aware there is something wrong, but more annoyingly for him (as I see it) is that he dosen't quite know what it is, regardless of whatever name the medics give 'it,' and worse, John dosen't know how to fix or overcome 'it.'
So much of the time, all I can do at present is to be there, and try to understand the unspoken. A huge learning curve, I know we're all in the same boat here.
Take care,
Love, Necion. x
You initially asked - does he know he has dementia, only your husband can answer that of course, but I know my John is well aware there is something wrong, but more annoyingly for him (as I see it) is that he dosen't quite know what it is, regardless of whatever name the medics give 'it,' and worse, John dosen't know how to fix or overcome 'it.'
So much of the time, all I can do at present is to be there, and try to understand the unspoken. A huge learning curve, I know we're all in the same boat here.
Take care,
Love, Necion. x
An update
My husband asked the new cleaner within a week of her starting (she started about 3 weeks ago) "Do you think I have dementia" - odd that he had managed to convince many people e.g. a GP, an ex surgeon at church, a psychologist etc that he doesn't yet turns to an unqualified person in the house to ask this question. Also odd that he is in total denial with me and indeed blames me for all that goes wrong. She gave what I think was the perfect answer - asked him why he was asking - he replied what you'd expect esp about very poor memory & she said "Well my mother has dementia & she is now in a home & she started that way" - so she rather cleverly let him think it through for himself rather than give a yes/no comment.
My husband asked the new cleaner within a week of her starting (she started about 3 weeks ago) "Do you think I have dementia" - odd that he had managed to convince many people e.g. a GP, an ex surgeon at church, a psychologist etc that he doesn't yet turns to an unqualified person in the house to ask this question. Also odd that he is in total denial with me and indeed blames me for all that goes wrong. She gave what I think was the perfect answer - asked him why he was asking - he replied what you'd expect esp about very poor memory & she said "Well my mother has dementia & she is now in a home & she started that way" - so she rather cleverly let him think it through for himself rather than give a yes/no comment.
Thanks Mary - too true, so very true - I've always said - here & elsewhere - when I'm quiet & not posting I am in most need. Don't all pm me as it sits at 98%!! Only room for one person in pm!!
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