• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

It's life Jim - but not as we know it!

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
My husband had his cataract operation today and is home again. We were waiting around for four hours before he went to surgery and that was tiresome with me having to stop him from getting dressed many times and constantly answering the many questions as to why we were there.
He was drowsy for quite a while after the op and that was the easiest time. Once he was more alert then the problems started with him removing the eye patch and pulling at the needle in his hand. Now he's home I'm just having to watch him and stop him from rubbing his eye. Even with the patch on he manages to get his finger to his eye. I can only do my best.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
My husband had his cataract operation today and is home again. We were waiting around for four hours before he went to surgery and that was tiresome with me having to stop him from getting dressed many times and constantly answering the many questions as to why we were there.
He was drowsy for quite a while after the op and that was the easiest time. Once he was more alert then the problems started with him removing the eye patch and pulling at the needle in his hand. Now he's home I'm just having to watch him and stop him from rubbing his eye. Even with the patch on he manages to get his finger to his eye. I can only do my best.
Good luck , I had both eyes done a couple of years ago & I kept finding myself forgetting & giving my eye a rub!
No learning curve!!!
There are soo many layers of stitches I was told not to worry too much.

Maybe put drops in each time he itches, if he doesn’t like having drops put in it might dissuade him?
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
Good luck , I had both eyes done a couple of years ago & I kept finding myself forgetting & giving my eye a rub!
No learning curve!!!
There are soo many layers of stitches I was told not to worry too much.

Maybe put drops in each time he itches, if he doesn’t like having drops put in it might dissuade him?
Thanks @DesperateofDevon that's helped to make me feel a bit happier.
I also think that his cataract was giving him so much hassle before, they said it was very dense, that rubbing his eyes has become a habit.
Did they tell you to put the eye patch on at night? If so, do you know why?
When I ask him this morning how well he can see, his answer changes all the time. Sometimes he says he can see perfectly well and other times he says he can't see at all. Yet he can tell me how many fingers I am holding up.
Of course, this morning he doesn't even remember going to the hospital yesterday.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Thanks @DesperateofDevon that's helped to make me feel a bit happier.
I also think that his cataract was giving him so much hassle before, they said it was very dense, that rubbing his eyes has become a habit.
Did they tell you to put the eye patch on at night? If so, do you know why?
When I ask him this morning how well he can see, his answer changes all the time. Sometimes he says he can see perfectly well and other times he says he can't see at all. Yet he can tell me how many fingers I am holding up.
Of course, this morning he doesn't even remember going to the hospital yesterday.
The patch at night is to stop you from subconsciously rubbing your eye!!!
I know don’t laugh.
Try not to worry the op is done & all we’re aware of your husbands dementia.

Xx
My mum literally poked her eyes daily & her sights good!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Thanks @DesperateofDevon that's helped to make me feel a bit happier.
I also think that his cataract was giving him so much hassle before, they said it was very dense, that rubbing his eyes has become a habit.
Did they tell you to put the eye patch on at night? If so, do you know why?
When I ask him this morning how well he can see, his answer changes all the time. Sometimes he says he can see perfectly well and other times he says he can't see at all. Yet he can tell me how many fingers I am holding up.
Of course, this morning he doesn't even remember going to the hospital yesterday.
The patch at night is to stop you from subconsciously rubbing your eye!!!
I know don’t laugh.
Try not to worry the op is done & all we’re aware of your husbands dementia.

Xx
My mum literally poked her eyes daily & her sights good!
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
I'm adding my post here tonight for my own benefit, just to keep a record of how things are.
For the past few days my husband has almost abandoned the TV. He turns it on and calls for me to tune into "something interesting". After I've done that he has it on for not more than five or ten minutes and then turns the TV off. Then he is just pacing around from one room to the next. Then he'll go and sit down and turn on the TV, then he calls to me again as he doesn't want what's on even if it's still what he selected before. But it's all this pacing around that gets to me, puts me on edge. And how can he walk so much around the house when he can hardly put one step in front of the other when we go out? Just had to put my thoughts down here.
 
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Fishgirl

Registered User
Sep 9, 2019
134
Oh I do know what you mean, my OH has started behaving like that,
He’s not following me around as much, although he still wants to know exactly where I am, but he’s started going up and down the stairs every few minutes or he’s in and out of the house, trying to engage total strangers in conversation that are just passing, when I ask him who he was talking to, he says oh I’ve known him for years:rolleyes: but when we go to the park to walk the dog, which I really enjoy, he won’t talk to anyone and after 10 minutes he says his sciatica ( new one on me) is hurting and we’ll have to go home!:mad: xx
 

Roseleigh

Registered User
Dec 26, 2016
297
Oh I do know what you mean, my OH has started behaving like that,
He’s not following me around as much, although he still wants to know exactly where I am, but he’s started going up and down the stairs every few minutes or he’s in and out of the house, trying to engage total strangers in conversation that are just passing, when I ask him who he was talking to, he says oh I’ve known him for years:rolleyes: but when we go to the park to walk the dog, which I really enjoy, he won’t talk to anyone and after 10 minutes he says his sciatica ( new one on me) is hurting and we’ll have to go home!:mad: xx
Mine too does a lot of pacing and up and down stairs. It does my head in. After his weeks respite in the care home I had two days of peace when he seemed happier to sit and watch TV but today has been hard work, hallucinating about ppl coming to the house wanting to kill us earlier,:eek: then later pacing and up and down stairs.
 

White Rose

Registered User
Nov 4, 2018
359
I'm adding my post here tonight for my own benefit, just to keep a record of how things are.
For the past few days my husband has almost abandoned the TV. He turns it on and calls for me to tune into "something interesting". After I've done that he has it on for not more than five or ten minutes and then turns the TV off. Then he is just pacing around from one room to the next. Then he'll go and sit down and turn on the TV, then he calls to me again as he doesn't want what's on even if it's still what he selected before. But it's all this pacing around that gets to me, puts me on edge. And how can he walk so much around the house when he can hardly put one step in front of the other when we go out? Just had to put my thoughts down here.
Hello Jenniferjean - it seems like our OHs might be at a similar stage, mine does the same pacing around and disinterest in things. He sleeps more on the sofa now but if I let him sleep too much he doesn't sleep so well at night. His mobility and walking when we're out is much better since he's been seeing a sort of 'personal trainer' twice a week. I wrote a poem, which you can find in the poems forum - you might recognise a similar pattern in you husband in other areas as well as the pacing.
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
Hello Jenniferjean - it seems like our OHs might be at a similar stage, mine does the same pacing around and disinterest in things. He sleeps more on the sofa now but if I let him sleep too much he doesn't sleep so well at night. His mobility and walking when we're out is much better since he's been seeing a sort of 'personal trainer' twice a week. I wrote a poem, which you can find in the poems forum - you might recognise a similar pattern in you husband in other areas as well as the pacing.
Hello @White Rose, yes they do seem similar. My husband seems to sleep well at night regardless of how much he sleeps during the day, although just lately he's not sleeping during the day much. I say "sleep" but it's not a heavy sleep, day or night. The slightest thing and he's awake.
I have read your poem, you write well and it would be good if others who are less aware of dementia could read it and understand what we are dealing with.
 

White Rose

Registered User
Nov 4, 2018
359
Hello @White Rose, yes they do seem similar. My husband seems to sleep well at night regardless of how much he sleeps during the day, although just lately he's not sleeping during the day much. I say "sleep" but it's not a heavy sleep, day or night. The slightest thing and he's awake.
I have read your poem, you write well and it would be good if others who are less aware of dementia could read it and understand what we are dealing with.
It has occurred to me that a collection of poems (or verses or essays) written by carers going through this could be published in a book with two aims: to raise money for research and to raise awareness of what we're all going through, because others who've not had to be a carer to a person with dementia don't have a clue do they.
 

maryjoan

Registered User
Mar 25, 2017
1,397
South of the Border
It has occurred to me that a collection of poems (or verses or essays) written by carers going through this could be published in a book with two aims: to raise money for research and to raise awareness of what we're all going through, because others who've not had to be a carer to a person with dementia don't have a clue do they.
I like this idea a lot - I wonder if Alzheimer's Socy would give advice on how to go about it???
I like to write what I call 'impromptu verses' - just type them out without overthinking ! Count me in if you get any further with it.
 

White Rose

Registered User
Nov 4, 2018
359
I like this idea a lot - I wonder if Alzheimer's Socy would give advice on how to go about it???
I like to write what I call 'impromptu verses' - just type them out without overthinking ! Count me in if you get any further with it.
Thanks, good to know. I have emailed someone at the Alz Society so let's see.
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
While out today we came across a bit of a problem. We were heading for the bus stop and my husband had his stick with him rather than his walker, he doesn't like taking the walker on the bus. We came to cross the road, he asked me if it was clear to which I said yes. He put one foot on the road, and his stick, but couldn't move the other foot onto the road. I tried to coax him to move forward but he physically couldn't move.There he stood with one foot on the pavement and one on the road. Soon there was traffic and the only thing I managed to do was to get him to put the foot he had moved back onto the pavement. We stood for a while and then slowly walked a bit (he only does very slowly). After a while I tried again and he managed it this time. I've never known him to freeze like that before.
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
We were having new flooring put down in the new bathroom this morning, and I needed to keep my husband occupied or else he'd 'need' the bathroom.
So I gave him some cards that represent different countries and show their flags and their capital cities. As he looked at each one he read out the names of the countries and sometimes the capital cities. After he looked at each one he placed it at the back of the pack. When he reached the last one he just continued, over and over again. Because his short term memory is so short now that he didn't realise he'd already read each one. It kept him entertained for quite a while.
 

Roseleigh

Registered User
Dec 26, 2016
297
We were having new flooring put down in the new bathroom this morning, and I needed to keep my husband occupied or else he'd 'need' the bathroom.
So I gave him some cards that represent different countries and show their flags and their capital cities. As he looked at each one he read out the names of the countries and sometimes the capital cities. After he looked at each one he placed it at the back of the pack. When he reached the last one he just continued, over and over again. Because his short term memory is so short now that he didn't realise he'd already read each one. It kept him entertained for quite a while.
What a lovely idea!!
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
Well I've just saved myself a lot of money with our new bathroom. I was about to pay the builder when I suddenly thought about the VAT element. I asked the builder whether it was possible to deduct this and he contacted his VAT office. I wasn't expecting anything to come from it but the answer from the VAT office was yes. I have a form to fill in and I've given him a copy of the form listing his ailments from the doctors.
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
Back in September I spoke to the doctor about my husband having a continence problem and he said he would have him referred to the continence clinic. Yesterday I received a letter saying they would carry out an assessment on 2nd January, which may or may not be by telephone.
The letter also included a questionnaire asking for information,but also asking for my husband to complete a fluid chart for three days, giving a record of all fluid intake and bladder output. He would need to measure his urine using a plastic measuring jug. I explained this to him and he states he will not do it. And I know he won't. So where does that leave us? Will they not be able to give any assistance with this problem?