• 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
.

His enjoying himself in the garden on his own , Just forgotten to throw rubbish in the bin .
He never spends time in the garden, and nornmally would never drop litter anywhere.

This rubbish was thrown from the back door. I could tell because the door handle was sticky. ;)
 

Cliff

Registered User
Jun 29, 2007
777
North Wales
Dee cannot explain how she is when she gets stuck in the middle of a sentence.

She is unable to say more than about four words at a time now and gets very cross with herself when she is unable to say what she is thinking. Unfortunately the words she uses have no sense at all as she tries to express herself.

Her facial expressions and her hands say more than she is able to.

Oh it is a wicked disease.
 

Cliff

Registered User
Jun 29, 2007
777
North Wales
Nasty bruise on his arm, trying to find out how it happened but not able to get an answer.
Just a thought Christine:

I couldn't understand how Dee was was getting bruises on her arm until I realised the bruises coincided with the door handles.

The heights matched exactly and I watch her very carefully through doors now - no more bruising.
 

christine_batch

Registered User
Jul 31, 2007
3,388
Buckinghamshire
Dear Cliff,
You are a clever boy. I checked Peter's arm against the door handle and it did fit in with where the bruise was.
They are brilliant at the C.H. if there is anything I am concerned about they do listen and have acted on it.
Thank God they have insurance, especially when he pushed over a £2,000 t.v. (He did use to be a painter/decorator,D.I.Y. for 29 years) he kept moving stacking furniture and covering it all with table cloths.just as if he was preparing a room for decorating.
With the t.v. when he had broken it and when he could speak - kept saying fix it, fix it.
If we did not see a funny side, we would cry.
Best wishes
Christine
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
GrannieG said:
This rubbish was thrown from the back door. I could tell because the door handle was sticky.
:rolleyes: Oh Sylvia, if it wasn't so dire you could almost smile at it.
By such 'clues' do we live our lives & try to make sense of them.

Love
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Last night he had a `lapse` again after dinner and slept for one hour. When he woke it took another hour for his face to clear.

During this time he told me several times how frightened he was. The decision was made, he would go back to Manchester.

Why did he want to go back to Mancheater? Because he was a burden.

Try as I could I was unable to reassure him he is not a burden. Eventually, he accepted, grudgingly, there was no-one in Manchester to look after him and he was best here with me.

He is very frightened, he thinks he is losing his mind, and in losing his mind he will be `mental`. He has no recollection of the last X number of years, he talks about the last house but one. It seems he has completely forgotten about the last house, the one we lived in from 1993-2002. His behaviour changed in 1999.

He now thinks he has had Alzheimers for years and years, as he has no recall of the last 15 years. It is a complete blank.

I try to imagine that void, and I`m not surprised he is frightened.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Sylvia

What you write all sounds so familiar to me.

It is one [more] of those heartbreaks of life that when we most want to be able to help them, we are least able because of their condition.

Day by day.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Sylvia, thinking of you.
I try to imagine that void, and I`m not surprised he is frightened.
I have always tried, and failed, to imagine what is going on in the mind of someone with dementia.

We would all be frightened trying to make sense through the emptiness that surrounds them. Take care now, both of you.
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello Sylvia:

It is very frightening. This morning we have experienced another 'where are we?' episode. Have you decided how long we are here for? We will stay here cos we are at home. 'What my home? Yes, but our home! Then he went on to say how awful it was when his memory was playing tricks. Now his head is in a book and he seems content again.

Like you I need to reassure D that he is not a burden! It is hard.

Take care Sylvia - day by day! Love Jan
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Dear Sylvia

This is probably going to sound impossibly gushing but: I really do not know where you get the stamina and compassion to support everyone else when you're going through all this.

You have not only my friendship but my deepest respect.

Love
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Thanks folks. :)

Dhiren is definitely deteriorating, but in some ways it`s a paradox, because he is easier to live with than he has been for years.

Where there was resentment there is now closeness, where there was anger there is much more peace, where there was distance there is warmth and where there was agitation there is calm.......

for most of the time. The rest of the time is manageable.

I`m lucky he has not yet lost any language, so even though the repeated questions are a pain, there are good and valued areas of communication.

It may all change tomorrow, but today is today. :)
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
When will I learn?

One hour later.............
D `How far is it to Jamui?`
S `6,000 miles.`
D `No! That`s impossible.`
S `It must be. It`s in the east of India, next door to Bangladesh`.
D `I`ll go to the station as ask there.`
S `Why don`t you believe me? `
D `I thought I could go for a day out.`
S `It took us 10 hours to get to Delhi, and you`d have to go further still. You can`t go by train.`
D `How did I get here then? I came by train.`
S `You came by boat. When we went on holiday, we flew.`
D `I`m not flying. I`ll go to the station tomorrow.`

Later.........
D `I`m going for a walk.`
S `Can I come with you?`
D `What do you want to come for? You have the dinner to make.`
and off he wemt............only to return 5 minutes later because he was too cold.

But once again I spoke too soon. Sundowning is still here in all its` glory.
 
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Cliff

Registered User
Jun 29, 2007
777
North Wales
Dear Sylvia,

I am only coping with questions I cannot understand or dealing with the "other people".

You are continually coping with the same range of questions and how you do not explode, I do not know. You must have a very firm grip on yourself.

Am full of admiration,

Love to you both
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Thanks Cliff.
I think I`m on `automatic pilot` :)
Love xx

PS. I hope you`ve been comforted by all the positive responses to your query about Respite care.
 

CHESS

Registered User
May 14, 2006
136
LANCS.
Yesterday, we were eating our evening meal when my Mum said, "I haven't given you any money. Should I be eating this?" Don't you just want to hug them?

Love, Chess xx
 
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