HI SUE ,i think Brucie is spot on with his reply ,When Jim was at the same stage as Steve appears to be ,i use to try getting him to do puzzles and such ,i was quite shocked to find he could hardly sign his name ,so set about little exercises,Name and address and simple sums ,this deteriorated rapidly ,i use to stop as soon as i saw him getting worked up ,I discussed this with the consultant ,who said it served no purpose and just caused him more stress by realizing how much he could NOT do ,i know she was right ,well i am glad you are managing the posting now ,it helps to get things of your mind ,and make the most of Steve sleeping well ,it gives you a few hours to call your own ,ANGELA
Hi Twink!!
- Thread starter Sheila
- Start date
Hello Sue
No problem about asking about Jan, I find that sharing information about her condition over the past 15 years helps me, and if it helps others as well, then at least someone is winning!
Not long after the doctors had figured out what was wrong [about 8 years into the problems, and five years after I had diagnosed her, but they wouldn't believe me because of her young age], Jan had lost her ability to write. Maybe a year or two after diagnosis. Maybe less.
Looking at her, as a friend or a stranger, you wouldn't have known anything was wrong. She looked great. Until she acted strangely, or said something inappropriate. I knew of course, and generally let people know beforehand if possible. I didn't want Jan embarrassed or further confused.
It is so difficult as it varies from person to person, both in effect and in timing. Most doctors don't actually know either, because they don't experience caring for someone day after day. Talking Point helps because when people relate their experiences, one can relate to them - or not.
No problem about asking about Jan, I find that sharing information about her condition over the past 15 years helps me, and if it helps others as well, then at least someone is winning!
Not long after the doctors had figured out what was wrong [about 8 years into the problems, and five years after I had diagnosed her, but they wouldn't believe me because of her young age], Jan had lost her ability to write. Maybe a year or two after diagnosis. Maybe less.
Looking at her, as a friend or a stranger, you wouldn't have known anything was wrong. She looked great. Until she acted strangely, or said something inappropriate. I knew of course, and generally let people know beforehand if possible. I didn't want Jan embarrassed or further confused.
It is so difficult as it varies from person to person, both in effect and in timing. Most doctors don't actually know either, because they don't experience caring for someone day after day. Talking Point helps because when people relate their experiences, one can relate to them - or not.
embarrass
Hi Angela,
That's of course why I seem to sneak about muttering to people that Steve has AD because I don't want him to be embarrassed and also don't want the people we are talking to to be either.
Steve can't count money anymore. He can have a pound coin and some silver in his hand and he doesn't know how much is there and as you say, I wouldn't want to try and get him to do things that would embarrass or confuse him so I guess I should leave it, he can't do things and that he won't be learning again so let it go. You tend at first to think if I remind him, he will be able to do it again. It's hard to think they won't. When we moved to this house almost 2 years ago he could never remember the phone number so I have written it down in big letters and if he needs to give it out, he can just look at it and read it but he hasn't had to do that for a while as I usually answer the phone now and speak to anyone who might want the phone number for any reason. I really do appreciate my time on my own. Having said that, I'm still reading up about AD and posting on here!! lol. As I keep saying, he was just never here and it takes some getting used to now.
regards,
Sue
Hi Angela,
That's of course why I seem to sneak about muttering to people that Steve has AD because I don't want him to be embarrassed and also don't want the people we are talking to to be either.
Steve can't count money anymore. He can have a pound coin and some silver in his hand and he doesn't know how much is there and as you say, I wouldn't want to try and get him to do things that would embarrass or confuse him so I guess I should leave it, he can't do things and that he won't be learning again so let it go. You tend at first to think if I remind him, he will be able to do it again. It's hard to think they won't. When we moved to this house almost 2 years ago he could never remember the phone number so I have written it down in big letters and if he needs to give it out, he can just look at it and read it but he hasn't had to do that for a while as I usually answer the phone now and speak to anyone who might want the phone number for any reason. I really do appreciate my time on my own. Having said that, I'm still reading up about AD and posting on here!! lol. As I keep saying, he was just never here and it takes some getting used to now.
regards,
Sue
twink
Goodness, 15 years is such a very long time. She does look great, I've been having a tour round and seen some photos, one of you both together. Steve hasn't acted 'strangely' yet but I suppose it can happen at any stage? I don't want to embarrass Steve by just announcing to people that he has AD which is why I seem to sneak about and tell them and they say oh dear how awful but I wonder how many people actually understand or know exactly what it means. I'm sure our friends and neighbours don't . I told our next door neighbour and he made a remark "for goodness sake, don't let him make a cup of tea if you're not around, he might put the kettle on the gas ring". What a stupid thing - in my mind - to say. I think he must have been watching Casualty on tv as there was a chap with AD who did that! People can say some really strange things when you tell them can't they. It proves they know nothing about it and why should they if it doesn't affect them. I didn't know a thing about it and still hardly do.
Sue
Goodness, 15 years is such a very long time. She does look great, I've been having a tour round and seen some photos, one of you both together. Steve hasn't acted 'strangely' yet but I suppose it can happen at any stage? I don't want to embarrass Steve by just announcing to people that he has AD which is why I seem to sneak about and tell them and they say oh dear how awful but I wonder how many people actually understand or know exactly what it means. I'm sure our friends and neighbours don't . I told our next door neighbour and he made a remark "for goodness sake, don't let him make a cup of tea if you're not around, he might put the kettle on the gas ring". What a stupid thing - in my mind - to say. I think he must have been watching Casualty on tv as there was a chap with AD who did that! People can say some really strange things when you tell them can't they. It proves they know nothing about it and why should they if it doesn't affect them. I didn't know a thing about it and still hardly do.
Sue
Twink, Bruce posted this explanation of how AD affects the sufferer, which I thought was SO good:-
It's so difficult to tell the difference, in an adult person, between "can't" & "shan't", simply because the evidence of your eyes for the past 10 years (or 20, 30) tells you that of course they are physically capable of doing this or that, so why, suddenly, can they not now? If they were a small child, it would be easier to give them the benefit of the doubt, wouldn't it. Sadly, many aspects of AD seem to slowly turn capable, intelligent adults back into toddlers who can't understand or remember the things we try to say to them, and it's a very unnatural state of affairs to try & get to grips with.
I thought Bruce's analogy with a faulty computer made the point very well.
**************************************
A second good idea I read on here was for the AD-sufferer (or his companion/carer) to carry a pre-printed card, explaining that
"he suffers from Alzheimer's Disease, which sometimes affects his behaviour.
Because if this illness, he may sometimes not reply when spoken to, or he may have difficulty expressing himself (or writing, or signing his name, or whatever).
Please speak to him normally, and don't be surprised if someone else answers for him."
(Obviously, details of Steve problems as appropriate, and in whatever terms you would find acceptable.)
This could be handed to a shop assistant/dental nurse/bus conductor (for example) to avoid loud or embarrassing explanations
Such a card would have different details for Steve than (for instance) one which my Mum would use, since their symptoms would be very different. Likewise one which you prepared today would probably not fit the bill in a year's time, due to changes in his condition, or perhaps (hopefully) even improvements in his symptoms brought about by some medication.
Best Wishes
Brucie said:
It's so difficult to tell the difference, in an adult person, between "can't" & "shan't", simply because the evidence of your eyes for the past 10 years (or 20, 30) tells you that of course they are physically capable of doing this or that, so why, suddenly, can they not now? If they were a small child, it would be easier to give them the benefit of the doubt, wouldn't it. Sadly, many aspects of AD seem to slowly turn capable, intelligent adults back into toddlers who can't understand or remember the things we try to say to them, and it's a very unnatural state of affairs to try & get to grips with.
I thought Bruce's analogy with a faulty computer made the point very well.
**************************************
A second good idea I read on here was for the AD-sufferer (or his companion/carer) to carry a pre-printed card, explaining that
"he suffers from Alzheimer's Disease, which sometimes affects his behaviour.
Because if this illness, he may sometimes not reply when spoken to, or he may have difficulty expressing himself (or writing, or signing his name, or whatever).
Please speak to him normally, and don't be surprised if someone else answers for him."
(Obviously, details of Steve problems as appropriate, and in whatever terms you would find acceptable.)
This could be handed to a shop assistant/dental nurse/bus conductor (for example) to avoid loud or embarrassing explanations
Such a card would have different details for Steve than (for instance) one which my Mum would use, since their symptoms would be very different. Likewise one which you prepared today would probably not fit the bill in a year's time, due to changes in his condition, or perhaps (hopefully) even improvements in his symptoms brought about by some medication.
Best Wishes
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Hi Twink
Hi Lynne and thank you for your post. I'll read that a few times till it gets in to my head without having to keep going back to it! It is like looking after a toddler or small child and I'm not the most patient woman in the world, Steve and I often used to kind of snap a bit at each other when one of us didn't understand what the other was talking about. Me at him as he didn't deal with the bank for example as he should and him at me cos I didn't know how to wire a plug! It was our way for 24 years. Now I find I mustn't snap so I have to change the way I speak to him!!
His memory confuses me! He asks me several times a day if we have to go anywhere today or what day it is and yet he had arranged for someone to come to the house this morning at 8am and he remembered they were coming but he thought it was 8:30 which I thought was very good!!! I find he is like this quite often, just compeltely forgets what day it is , he can't remember two items from the shop just across the road, only one and he will take plastic bottles for instance out to the recycling bin and I tell him it's the BLUE one but by the time he's got to the bins, he's forgotten. That's soemthing else about the illness I don't understand. He remembers someone was coming this morning and got up whereas he can often sleep for 12 hours and not appear until 9am and he's also remembered that my son borrowed his wheel brace weeks ago. He doesn't remember having 3 operations in the past 20 years either so it seems like it's short term memory and some long term but he can remember some things.
Sorry I waffle on, I can't ever explain things in a nice short post.
Sue
Hi Lynne and thank you for your post. I'll read that a few times till it gets in to my head without having to keep going back to it! It is like looking after a toddler or small child and I'm not the most patient woman in the world, Steve and I often used to kind of snap a bit at each other when one of us didn't understand what the other was talking about. Me at him as he didn't deal with the bank for example as he should and him at me cos I didn't know how to wire a plug! It was our way for 24 years. Now I find I mustn't snap so I have to change the way I speak to him!!
His memory confuses me! He asks me several times a day if we have to go anywhere today or what day it is and yet he had arranged for someone to come to the house this morning at 8am and he remembered they were coming but he thought it was 8:30 which I thought was very good!!! I find he is like this quite often, just compeltely forgets what day it is , he can't remember two items from the shop just across the road, only one and he will take plastic bottles for instance out to the recycling bin and I tell him it's the BLUE one but by the time he's got to the bins, he's forgotten. That's soemthing else about the illness I don't understand. He remembers someone was coming this morning and got up whereas he can often sleep for 12 hours and not appear until 9am and he's also remembered that my son borrowed his wheel brace weeks ago. He doesn't remember having 3 operations in the past 20 years either so it seems like it's short term memory and some long term but he can remember some things.
Sorry I waffle on, I can't ever explain things in a nice short post.
Sue
Twink, you're certainly not alone in the snapping league ...
The number of times I have bitten my tongue, to try & stop snapping back at my Mum when she's being (seeming) particularly dense, it's a wonder I haven't bitten right through it! And then, even worse, the number of times I HAVE snapped at her, and she's given me that "but I don't understand what I did wrong" look, and then I wish the floor would just open up & just drop me straight into hell now & be done with it ...
And, since I was born without a maternal spirit, so have never had children, my 'toddler' explanation doesn't make it any bloody easier anyway!
Hang in there pal, we're all in the same boat
Regards
The number of times I have bitten my tongue, to try & stop snapping back at my Mum when she's being (seeming) particularly dense, it's a wonder I haven't bitten right through it! And then, even worse, the number of times I HAVE snapped at her, and she's given me that "but I don't understand what I did wrong" look, and then I wish the floor would just open up & just drop me straight into hell now & be done with it ...
And, since I was born without a maternal spirit, so have never had children, my 'toddler' explanation doesn't make it any bloody easier anyway!
Hang in there pal, we're all in the same boat
Regards
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