• 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.

A life in the day of.........................

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Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Thanks everyone, today really has been the best for a long time.

I`m sorry it hasn`t been as good for you Jan. :(

Sue, I can just imagine your father being thrilled with his shoes. The many, mnay thanks does show the vulnerability though and childlike quality. :)

Mary-Ann, thank you for thinking of me, with all the worry you`re having to contend with. :)

Gigi, good luck with your mouth, and good luck with Eric`s friends too. :)

This evening we were watching `Who wants to be a Millionaire` and were both attempting to answer the questions.
S `You`re in fantastic form today.`
D `I will be like this for ever now. The Alzheimers has gone.`

I wish!!
 

Cliff

Registered User
Jun 29, 2007
777
North Wales
Bless you for saying that Jan,

I also have difficulties but Dee is never aggressive so know how you feel.

I believe it is the same for Sylvia, difficult yes but aggressive no.. Do believe that is true...really hope so.

Early night, love to all.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
He was verbally aggressive in the early stages Cliff, and very angry, but seems to have mellowed lately. I hope it lasts, it`s so much easier.
 

Cliff

Registered User
Jun 29, 2007
777
North Wales
Sorry about that Sylvia, but glad that has gone now.

Dee gets really difficult about simple things like cleaning her teeth or washing her hands. Either of which can take half an hour. It's a waste of time trying to speed things up because all I get is the stone-wall face. Five minutes later she is all smiley.

When I eventually get help for the morning toilet - it is promised very soon from the agency but they're waiting for the police OK's - will be interesting to see how an outsider/stranger copes.

Hope today has been OK, love,
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Today has been fine thank you Cliff, although I think Dhiren overdid it yesterday as he has been very tired.

I will be very interested to hear how Dee accepts help from her carer. I wouldn`t be surprised if her behaviour is perfect.

I agree it`s not worth having battles. Unless there`s a risk involved, it`s best to back down and revisit when the mood changes.

Take care xx
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello:
It is interesting about Dhiren being aggressive in the early stages! I remember we went through a very bad phase around 1999-2000 - I thought he was just under pressure at that time!
Our daughters used to comment how rude he was to me!

However today at 8.00 am: How do people manage if they have not got a Jan? (I wanted to say they have a Sylvia, or Cliff, or Gigi or Hazel etc etc. but instead I replied 'oh they manage'!).

I went to collect him from his lunch get together with colleagues, and he thanked me profusely for running about after him!

He has just had half an hour of worrying about
1. where to park to go to bank 2. he is going to do some gardening tomorrow
3. the man has lost his trailer :confused:
(None of the above made sense to me).

Now he is so exhausted he has fallen asleep. :eek:

Have a good evening Jan
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Jan, if you click on Moderators, you will see my BIO.

It states there that Dhiren`s behaviour changed in 1999. I thought he was turning into a grumpy old man, or the fact we were both retired meant we were getting under each other`s feet, being together 24/7.

What it doesn`t say is how rude he was to me and how upsetting I found it.

It is only with hindsight I believe that`s when he started with Alzheimers.
 

gigi

Registered User
Nov 16, 2007
7,788
66
East Midlands
However today at 8.00 am: How do people manage if they have not got a Jan?
Hi Jan!

Do AD sufferers get together and learn phrases?

"How would I manage without you"
"I don't know how I'd manage if you weren't here"
"Can you sort it out..I would..but you know what to do"

The only thing missing is my name...I think it won't be long before that's gone..he has called me "Barbara"..several times now..that's Eric's first wife's name..and I see him looking at me
and working it out..poor chap..what a situation to be in..I let him know as best I can he will never offend me..I know what to expect...he is baffled by the whole situation.

In company he always refers to me as "she" these days..
But he is still very tender and not aggressive..(he has been)
and very complimentary about my cooking....:eek:...so it's not all bad

Love Gigi xx
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
very complimentary about my cooking.......so it's not all bad
Yes I am getting more praise for my cooking than ever before and now I don't bother as much (ah well :rolleyes:)

But I hope you know that meat is getting tougher these days ;) -well David is finding it harder to chew so we now eat lots of fish and minced up stuff. I am longing for a good rump steak.

There seems to be a common theme of early aggression, followed by tender gratitude.

Love Jan
 

lesmisralbles

Account Closed
Nov 23, 2007
5,543
Yes, I think they all get together and have meeting's.

Hi
You are not on your own, Ron today thinks he is still married to his first wife. Thet divorced 30 years ago,
He think's I am a wonderful cook, but his Mum was better. Well, I do not care, as long as he eat's, Oh - he does love his pudding's. I say, Ron, one more portion of veg, he will say, yes, but got to leave room for pudding.
Luv Barb X
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Every meal Dhiren sits down to gets the same praise.

`If you had this meal in a restaurant, it would cost you £20.`

I have had more thanks in the last year than I have had in 45 years. But they are very formal `Thank you` s, somehow, as if I am a stranger.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Oh Sylvia, I know what you mean:
But they are very formal `Thank you` s, somehow, as if I am a stranger.
I wonder what it is they perceive in their minds?

Lionel does not have that level of speech now, but your comments awakened a memory for me.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
My mothers always says Thank - you to me , never said it so much in her whole like to me . only since I have been looking after her full time .



I wonder as you said Dhiren say it also , they known what a burden they are ( even if we don't feel they are ) so they know deep down sometimes we get tried looking after them, so the only way to express they gratitude is to say thank - you .
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
I wonder what it is they perceive in their minds?
.
I wish I knew.

Dhiren also seems frightened of me at times.

If he is still eating and I leave the room, I hear the pedal bin lid, and know he has thrown something away. Why can`t he tell me he`s had enough? He doesn`t even need to tell me, he can just leave it.

Since I`ve been gardening, I`ve found empty beer bottles, orange peel, melon rind and banana skins in the bushes. That kind of food isn`t rationed in our house and i`m the one who buys the beer for him.

Today I had our fence strengthened. It cost more than I expected so I asked Dhiren for £40. Later he was really quiet. He had forgotten he`d given me money, he thought he`d lost it. Why didn`t he ask me about it? Was he embarrassed, ashamed or afraid?
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Sylvia, you comment:
Why didn`t he ask me about it? Was he embarrassed, ashamed or afraid?
I think they genuinely cannot remember what to do.

Lionel (many moons ago) used to be able to try to explain the 'lapses' in his memory. It is not just memories, as we think of it, but sometimes very physical things. I cannot explain myself but how I wish he were here to tell us where we are going 'off kilter'

Life is very logical in their world, we have to try to get inside that world somehow.:confused:
 

christine_batch

Registered User
Jul 31, 2007
3,388
Buckinghamshire
To-day, when the fog had lifted, I went to see Peter.
No smile, no recognition.
Nasty bruise on his arm, trying to find out how it happened
but not able to get an answer.
Asking him, How are you, out came the googly gooch, to which I replied, I know. Few more sentences and I repeated each time I know. Now Peter accepted I know answers. Then he started blowing kisses at the Nurses.
My shy, quite husband, seeing a different side, if he did not have AD he would never have done that.
On the way down in the lift something was bugging me. Got to the car and it came to me, I was saying I know, exactly the same way Sybil in the Fawlty Towers use to say it.
I think I will have a break - just around the corner in a lovely hotel, no telephone, no paperwork just read the Report on Home from Home, whereby two thirds of people living in Care Homes have Dementia.
Christine
 

Margarita

Registered User
Feb 17, 2006
10,824
london
He had forgotten he`d given me money, he thought he`d lost it. Why didn`t he ask me about it? Was he embarrassed, ashamed or afraid?
As he had forgotten he gave you the money , same as he had forgotten to mention it to you that he thought he had lost it

you must of had to promp (sp) his memory in asking him as

How did you know he thought he had lost it ? if you get my point .

unless he ask you ?
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
How did you know he thought he had lost it ? if you get my point .
?
Sorry Maggie, I was trying not to be too long winded.

He asked me what tomorrows plans were. I told him I had to go to the bank to get some money out and to get him his £40. The look of relief on his face told me all I wanted to know.

So I asked him in a very smiley non-confrontational way if he thought he had lost it. He said yes, he had been so worried, wondering what he had done with his money. I said he must always ask me if he doesn`t know about something, or tell me if he is worried and he said he thought I was busy.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
If he is still eating and I leave the room, I hear the pedal bin lid, and know he has thrown something away. Why can`t he tell me he`s had enough? He doesn`t even need to tell me, he can just leave it.


May be he use to throw his own food away , so he still doing that, so making him feel help full .


Since I`ve been gardening, I`ve found empty beer bottles, orange peel, melon rind and banana skins in the bushes. That kind of food isn`t rationed in our house and i`m the one who buys the beer for him.
.

His enjoying himself in the garden on his own , Just forgotten to throw rubbish in the bin .
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I said he must always ask me if he doesn`t know about something, or tell me if he is worried and he said he thought I was busy.
That is so like my mother , she would of said that . she thought I would be busy so does not like to ask .

I don't know if to believe it , I don't really with my mother anyway she hate to admite she had forgotten .

he had been so worried, wondering what he had done with his money.
yes so worried that he had forgotten to ask you , may be that what use to happen to my mother . I don't known xx
 
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