No cognition

[Chuggalug]

Hi everyone.

This is really hard to describe. My hubby can still talk, but he cannot seem to understand anything I say when I answer. If I could give a one word answer, it might work. But the responses to things like: "I can't get my computer to work (he still uses XP) are hard to reply to.

He doesn't actually USE the PC. It became habit just to power it up, as that's what he's done for many years! I still find him sitting in front of the screen, occasionally, but he doesn't have enough cognition to know what to do with it, now.

He is very deaf, but does dementia affect how a person hears as well? Has anyone else come up with the difficulty of not being able to reply to their OH?

Man, but it's difficult, this disease

 

[pamann]

Hello chuggalug, l am struggling this morning my OH doesn't absorb information, the brain can't work out what l am saying so frustrating, as you know, my OH is a little deaf which doesn't help ♥♥♥

Sent from my GT-P5210 using Talking Point mobile app

 

[BeckyJan]

Hello,
During the middle/late stage my husband could not concentrate enough to understand anything but a simple reply. Mostly I would solve things by showing him. For instance if he could not get the computer to work I would start from the beginning and set it up for him. Then he usually got bored and changed the subject; probably a way of not showing himself up too much.

During the late/end of life stage then we were lucky to exchange just a few simple words - enough to let him know I still cared etc. I think deafness complicates things but I believe in my husband's case it was inability to concentrate.

Others may be along soon with similar experiences.

 

[Rageddy Anne]

It's different times of day with my husband, Sundowning, bedtime and all night he's utterly baffled, but daytime he can be guided through simple things like ' take the rubbish out to the bin' ( I have to go with him to point out the bin) . Around midday he can just about manage to make an instant coffee, though he poured my friend a tea yesterday,into the milk jug. He can settle into doing something routine, like filling jugs and watering garden tubs and birdbaths. He too says he can't hear, but I think sometimes it isn't that he can't hear, but more that he wants to hear what's been said for a second time, to try and make sense of it.

 

[Sue J]

Hi everyone.

This is really hard to describe. My hubby can still talk, but he cannot seem to understand anything I say when I answer. If I could give a one word answer, it might work. But the responses to things like: "I can't get my computer to work (he still uses XP) are hard to reply to.

He doesn't actually USE the PC. It became habit just to power it up, as that's what he's done for many years! I still find him sitting in front of the screen, occasionally, but he doesn't have enough cognition to know what to do with it, now.

He is very deaf, but does dementia affect how a person hears as well? Has anyone else come up with the difficulty of not being able to reply to their OH?

Man, but it's difficult, this disease

Hi Chuggalug

This disease is very difficult. I have periods when my cognition and understanding are better, they are now, but when they are poor my own struggle with words reflects my inability to understand or take in others responses and all I need and can cope with are one word or few word answers eg. in your example I could cope with a reply like 'No, not today', this for me would show me that someone understood I was struggling, that it was a bad day and therefore not a good one for tackling anything too much with high cognitive demands.

I have learnt, am learning that 'habit' e.g your husband powering up the PC is a useful tool for me and try to have realistic habits to maintain some daily structure e.g. making my bed (prior to my symptoms I did this too but it never bothered me if it didn't happen) now it helps me to maintain abilities and regain some that were lost at the start of all this. I am aware I am younger than a lot of people with this disease so it may be harder in years to come.

When I was first affected I lost so many skills on the computer and realised my brain was under onslaught so gave myself simple things to do on the computer like online puzzles with not too many pieces, I think it was vital for me to retain some computer skills, or any cognitive skills. I wanted to and did get rid of most of my books as I could not longer read, that has improved, which I never thought it would, but is variable.

I wonder if your husband now has no computer skills what would happen if the computer were moved out of sight? Maybe it would make things worse?

My hearing is affected, I went for hearing tests to be told nothing is wrong, however, this too is worse at some times more than others - hence people's misperceptions at times when they think I am ignoring them on purpose, I am not.

Sorry if not helpful. It is so challenging.
Best wishes
Sue

 

[Saffie]

Sue, I'd like to thank you as your insight into this illness is so very valuable.
Many times I wished I could have seen into my husband's mind to know just what he felt or was thinking.
You are helping me understand a little of what he felt and I am so grateful.
Your contributions to this forum are invaluable.
I just wish that you didn't have to have this insight - if you see what I mean.

 

[Chuggalug]

Hi Chuggalug

This disease is very difficult. I have periods when my cognition and understanding are better, they are now, but when they are poor my own struggle with words reflects my inability to understand or take in others responses and all I need and can cope with are one word or few word answers eg. in your example I could cope with a reply like 'No, not today', this for me would show me that someone understood I was struggling, that it was a bad day and therefore not a good one for tackling anything too much with high cognitive demands.

I have learnt, am learning that 'habit' e.g your husband powering up the PC is a useful tool for me and try to have realistic habits to maintain some daily structure e.g. making my bed (prior to my symptoms I did this too but it never bothered me if it didn't happen) now it helps me to maintain abilities and regain some that were lost at the start of all this. I am aware I am younger than a lot of people with this disease so it may be harder in years to come.

When I was first affected I lost so many skills on the computer and realised my brain was under onslaught so gave myself simple things to do on the computer like online puzzles with not too many pieces, I think it was vital for me to retain some computer skills, or any cognitive skills. I wanted to and did get rid of most of my books as I could not longer read, that has improved, which I never thought it would, but is variable.

I wonder if your husband now has no computer skills what would happen if the computer were moved out of sight? Maybe it would make things worse?

My hearing is affected, I went for hearing tests to be told nothing is wrong, however, this too is worse at some times more than others - hence people's misperceptions at times when they think I am ignoring them on purpose, I am not.

Sorry if not helpful. It is so challenging.
Best wishes
Sue

Wow, such incredible responses. Thank you all.

Sue, it's incredible to get an answer from someone who is actually suffering from this. My heart goes out to you. Your response, and answer is the longest one. Kudos to you. (Thumbs up!)

Removing the PC is a definite no-no. That would cause: "Someone's been in here and stolen my computer." Everything has been in the stolen list for most of hubby's struggle. Losing things has been another big factor. You wouldn't believe some of the things that have happened, or, at least I hope not!

Mu husband is a tea addict He has always been able to make himself a cuppa, but he does, now struggle as he'll make two cups, or put one in the microwave, forget it's there and make a fresh one. There's things like using a knife to put butter and jam on some bread, then stick it back in the drawer without washing it. Nightmare The incommunication, I guess, is just another factor I'm having to deal with. Thank you so much for your response, Sue, and well done to you for the way you are structuring your own days. I offer you my greatest respect.

RaggedyAnn: I'll take the timing thing into account. Never thought of that. He doesn't sundown as he's the same at any time of day, but that's very useful.

Pamann and BeckyJan: Thank you both for your responses, and so sorry for your struggles.

Much appreciated everyone. Thank you again

 

[Chuggalug]

Sue, I'd like to thank you as your insight into this illness is so very valuable.
Many times I wished I could have seen into my husband's mind to know just what he felt or was thinking.
You are helping me understand a little of what he felt and I am so grateful.
Your contributions to this forum are invaluable.
I just wish that you didn't have to have this insight - if you see what I mean.

Completely agree with you, Saffie.

 

[Sue J]

Sue, I'd like to thank you as your insight into this illness is so very valuable.
Many times I wished I could have seen into my husband's mind to know just what he felt or was thinking.
You are helping me understand a little of what he felt and I am so grateful.
Your contributions to this forum are invaluable.
I just wish that you didn't have to have this insight - if you see what I mean.

Dear Saffie

I am thankful it helps you, it is why I post. At times I wish I didn't have the insight but maybe it has been given to me for a reason.

There is much in my life that I understand retrospectively and I think that is true for all of us and hopefully it leads to greater compassion for ourselves and others.

Hope you are doing OK?
love
Sue

 

[Sue J]

Removing the PC is a definite no-no. That would cause: "Someone's been in here and stolen my computer." Everything has been in the stolen list for most of hubby's struggle. Losing things has been another big factor. You wouldn't believe some of the things that have happened, or, at least I hope not!

Thought as much, I'd be the same he's really saying, 'Someone's stolen my ability to use the computer'

Believe you me, I would believe what has happened - I have been saying for a while now to some, 'If you find my head can you bring it back to me?'

He too says he can't hear, but I think sometimes it isn't that he can't hear, but more that he wants to hear what's been said for a second time, to try and make sense of it.

For me it is a bit of both, I really can't hear (Yet I also hear things that disturb me - that are real - but appear not to bother others) in a bad phase and sometimes I need to hear something again to be able to process it.

Mornings are definately better for me, as is the month of July, or so it seems going by the last two years. Sun, daylight has a big influence.

Glad it helps others by sharing it

 

[Chuggalug]

(Yet I also hear things that disturb me - that are real - but appear not to bother others)

Glad it helps others by sharing it

That's very interesting, Sue. Some time back, one of the mysteries was that hubby could 'hear' the electricity flowing through the wires in the house! I couldn't. It was an agonising time It happened when he used a particular one of his hearing aids.

 

[SoyHJ]

Hi Sue, I just want say a big thank you too. You can have no idea how much help you provide us by sharing your perspective on things with us. Your explanations of how you feel 'inside' make me stop and think and wonder if that's how my husband feels sometimes. He was never one for doing 'feelings' at the best of times (!) so you are the one who often helps me understand just a little bit better why he sometimes says or does things. xxx

 

[stanleypj]

I agree with the responses to Sue. Sue, you make a very distinctive and invaluable contribution to TP. I hope you know this. It is so sad to hear about how you suffer at times. Glad to hear July is good for you.

 

[SoyHJ]

That's very interesting, Sue. Some time back, one of the mysteries was that hubby could 'hear' the electricity flowing through the wires in the house! I couldn't. It was an agonising time It happened when he used a particular one of his hearing aids.

This made me think of my Dad (non dementia). It was always a struggle to persuade him to use his hearing aid but when I was successful (!) occasionally he'd say it wasn't 'right'. I remember holding it close to my ear (found later it was on the wrong setting or whatever you call it) and the noise I could hear could be likened to a sort of electrical sound - something similar to what you hear if you stand under a series of pylons. If you put dementia into the equation then I can imagine only too well that this could be interpreted as the electricity running through the wires in the house.. Just a thought...

 

[SoyHJ]

If I could interrupt Chuggalug's thread for a moment to ask you a question, Sue? I found what you said re noise very interesting. My husband is obsessed by anything he considers to be 'noise' (could be music on the radio, distant music playing somewhere, loud conversations, the fridge motor etc) and often becomes very agitated about it. Though some noise is annoying generally I often find that what seems reasonably quiet and acceptable to me seems a big problem for him. Do you find that when you have a bad phase, things like this can seem much louder to you and not at other times?
Thanks to you and to Chuggalug whose thread this is!

 

[Sue J]

If I could interrupt Chuggalug's thread for a moment to ask you a question, Sue? I found what you said re noise very interesting. My husband is obsessed by anything he considers to be 'noise' (could be music on the radio, distant music playing somewhere, loud conversations, the fridge motor etc) and often becomes very agitated about it. Though some noise is annoying generally I often find that what seems reasonably quiet and acceptable to me seems a big problem for him. Do you find that when you have a bad phase, things like this can seem much louder to you and not at other times?
Thanks to you and to Chuggalug whose thread this is!

Yes when in a 'bad phase', as I put it, (I actually think my brain is fitting even if it doesn't appear so and think EEGs would show what is happening) I am hypersensitive to things that don't bother others (and don't me when I am OK) so it is not so much they are just louder to me - if that makes sense? - but that my brain is almost like in an 'unprotected state' and my conciousness is altered too. This is why sufferers are much better off in a quieter environment.

I think mine is caused by vascular changes and sometimes it is OK and sometimes not which is why, as I see it, that sometimes sufferers will use a hearing aid, or glasses and then not. My vision changes too in a bad phase. When I am in a better phase I see all the dirty marks I have left uncleaned etc. and then get obsessed about doing it whilst I can see properly but wonder how I could have missed it before. I witness this behaviour in my older friend too, she is unaware of it though but displays similar behaviours.

 

[Chuggalug]

This made me think of my Dad (non dementia). It was always a struggle to persuade him to use his hearing aid but when I was successful (!) occasionally he'd say it wasn't 'right'. I remember holding it close to my ear (found later it was on the wrong setting or whatever you call it) and the noise I could hear could be likened to a sort of electrical sound - something similar to what you hear if you stand under a series of pylons. If you put dementia into the equation then I can imagine only too well that this could be interpreted as the electricity running through the wires in the house.. Just a thought...

I'm impressed with the way this discussion has opened up, and of course, if it gets people talking and discussing and if it helps us all, then, get stuck right in. You're all welcome, and thanks for all the helpful responses.

 

[Sue J]

That's very interesting, Sue. Some time back, one of the mysteries was that hubby could 'hear' the electricity flowing through the wires in the house! I couldn't. It was an agonising time It happened when he used a particular one of his hearing aids.

I have a friend who now has hearing aids and they do take some adapting to as the brain has to adjust. I think if I wore an aid in my bad phase it would magnify the sounds which I was already hypersensitive to and would be unbearable. So I can understand when you say it was an 'agonising time'.

A few days ago I noticed I kept putting the sound of my TV up more than usual and have considered getting a TV aid to help when I am like that so that it only picks up the TV and hopefully not magnify other sounds as well. I don't wish to disturb my neighbours but also feel I need some aid sometimes but not always.

 

[SoyHJ]

Thank you, Sue. When OH is like this it's difficult to understand but I think I get what you mean. It's not that the noise seems louder so much as that the brain can't deal with it as well as it would normally do. Have I got it? One other thing you said about possibly the brain is 'fitting'. I know that in some cases, immediately prior to a seizure, senses can seem heightened eg you can feel much more sensitive to light or other external stimuli - so that would fit in with what you say. Bless you for your help!

 

[Kijo]

I have found I have to slow down my questions to my husband so he has time to answer them - he is in mid-stage. By that, I mean one question at a time and count to about 20.
A doctor described it by saying I can grab an answer out of my head by going in a straight line to retrieve the information. He, on the other hand, has to wander through a maze of non-functioning brain cells to find the filing cabinet that holds the information. On the trip through the maze he may forget the question and have to ask again in order to know what to look for in the filing cabinet. And, sometimes the answer is hidden in those non-functioning brain cells so he just won't find them.
This visual, for me, helped me realize why he takes so long to answer or repeats questions - unfortunately I still have to keep reminding myself to slow things down as I am not used to it - even after a few years.
He tries to do word searched every day and it may take 3 hours or more but he can still usually find 3-6 words depending on the day. One thing he mentions is that he needs absolute silence, bright lights, and it is better in the morning.
Another thing I have noted is that on full moons he usually has an "odd day" and cannot focus as well as other days.