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

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Cliff

Registered User
Jun 29, 2007
777
0
North Wales
Hello Sylvia,

Have just caught up with the last page, having got Dee to bed and tucked up.

The overwhelming feeling I have is that it is so continuous and just goes on. We just have to do our best whilst it happens.

It has been a bad fortnight, but have talked to Dee and she will spend next Monday in a local Home to give us both some space then hopefully she will accept going there every Monday.

The Support Officer of our local Alz Soc has been so helpful and has been with me visiting the local Care-Homes to make a choice,

Made a formal complaint about our Social Services and it has caused a major about-face in their attitude but the story isn't complete yet so will report everything when I judge they are serious about a change of attitude.

It was so emotional to read part of your thread again and I do feel for you trying so hard to help Dhiren.

Love to you both,
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,105
0
Kent
OH well done Cliff, in making a formal complaint and getting a result. I will look forwards to hearing the full story.

And all the best for you and Dee on monday. I do hope she has a good day. It`s good to hear you`ve had help to find a good care home.

Take care xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,105
0
Kent
Here we go again............................

He has been packing since 5.30am.

There is a big black bin liner in the spare bedroom, full of clothes, including a pair or trousers straight from the spinner, still very damp.

Underwear is still on the bed, ready for another bag. There is a plastic bag in the living room containing his glasses and some magazines.

There is a plastic sandwich bag containing loose change.

The wardrobe is nearly empty, all freshly ironed shirts and trousers crushed in the bin liner.

He couldn`t find his belt. So he tipped out the bin liner and opened all the drawers and eventually had to ask for help. His belt was threaded through his clean trousers on the bed.

He is still gathering things together. He has to go. The bag looks very heavy.

Edited to add;
And now he has just asked me where he is supposed to go.
 
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gigi

Registered User
Nov 16, 2007
7,788
0
67
East Midlands
Morning Sylvia,

And now he has just asked me where he is supposed to go.

Did you have to bite your tongue?

Hopefully Dhiren will be so exhausted by the packing he'll settle down and have a sleep?

I really feel for you at the moment...

love gigi xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,105
0
Kent
He doesn`t know where to go, so he has allowed me to put everything back. I began by being hard and telling him to put his clothes back himself, but he couldn`t do it.

His pyjamas were on a hanger in the wardrobe wuth his keys in the pocket, he had tried to hang trousers on a shirt hanger.

He won`t speak to me, won`t have anything to eat or drink, so I have left him by himself. Ie thinks I`m awful and I will give him a heart attack.
 

margaret savage

Registered User
Mar 20, 2008
12
0
Good Morning,
Thanks to you all for the ideas on stimulating my mum, I have noticed she enjoys her Andrea Boccelli dvd and will carry on with that. I must also try and gee her up more, I think sometimes I am so tired of repeating answers over and over that I get into my "sorry for myself" state and forget it's mum who needs the most help. I will try much harder to keep a cheerful face as I m sure she will pick up on it when I am down, and she deserves more than that.
She is currently asking to visit her sister, who is quite poorly and elderly herself, so I have to put her off, but I think she just wants to get out and visit anyone she knows - perhaps for reassurance of who she is?
Well, thanks again, you really do help.
Have a good day,
Margaret.
 

zonkjonk

Registered User
Mar 1, 2007
290
0
Melbourne, Australia
packing and unpacking

how exhausting and emotionally draining this is now for you.
Dhiran must be exhausted too!
everytime I read of your latest developments I am just shocked at what this disease is doing to your lives.
Its just.....awful and brutal.
hugs,
Jo
 

BeckyJan

Registered User
Nov 28, 2005
18,972
0
Derbyshire
Hello Sylvia:
I have just popped into TP and see you are having problems yet again. I can imagine how exhausted you feel. Do you think it is time you shouted out for respite - surely you could be backed by SS with some excuse like needing some medical help etc.? I really feel you will benefit and it may just help Dhiren to accept other people too.

Since being in hospital David had no choice but to accept help from strangers! Maybe Dhiren should be put in a similar position.

I know you have resisted in the past, but please don't wear yourself out completely. We all need you as well as Dhiren.

Love Jan
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,105
0
Kent
Thank you Jo and Jan.

The only way Dhiren would go into respite care is if he were sectioned, and he`s nowhere near ready for that.

Even though he backs down when he threatens to `go`, he would definitely walk out if any suggestion would be made for respite care. And in walking out, he would be both angry and terrified, and I don`t want that for him.

It is exhausting and emotionally draining Jo. I have been up since 3.30am., Dhiren didn`t come to bed till 3.30am., although he probably slept in the chair, and was up again at 5am, packing.

Jan, if Dhiren was physically ill and had to be hospitalized, he would accept it. But respite care is a different matter altogether.

Have you managed to sort out an assessment place for David yet?
 

BeckyJan

Registered User
Nov 28, 2005
18,972
0
Derbyshire
Yes Sylvia - he is on his way there now subject to ambulance availability. So I shall be travelling to Buxton as soon as I hear he has left the hospital. (Hence me being on TP just waiting for tel.call).

I have been warned that David may not come home! I have had the most emotional week ever in my whole life and still dare not think beyond the next week.

I hope you manage to get some rest today.
Love Jan
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Dear Jan,

I'm so sorry. I know you were prepared for it, but being prepared doesn't soften the blow.

I hope David settles in rehab, and you manage to come to terms with things.

It doesn't get easier, does it?

Love,
 

zonkjonk

Registered User
Mar 1, 2007
290
0
Melbourne, Australia
hi sylvia, I have just logged on, I have been doing housework and reading all day, just wanted you to know I am thinking of you,I would love to wave a magic wand and make it all go away.
but of course, I cant,
hugs from Jo
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,105
0
Kent
Thanks Jo. The elusive magic wand, how wonderful if we could find it.

Today life is smoother, so far. He woke well, was relaxed and seemed contented. It`s a bright, sunny day so I suggested we go out. He was enthusiastic.......`no point sitting in the house all day like a zombie`.
So we went out.
We got as far as the gate and he had to turn back, he was too cold, it was too windy.
So I went by myself for a couple of small errands.

When I got home, 45 minutes later, I sensed the difference and the questions began again.
`Who pays us to live here?`
`How much do we pay them?`
`How much do I get?`
`How much do you get?`
`Where does it go?`
and I answered as well as I could.

Eureka!!! Like a bolt from the blue, I have just realized, in contradiction to all I have continually said, Dhiren is losing his language.

I have been so naive.

I worked with children with language disorders and communication problems for years, but with my husband, living with it 24/7, I have missed the writing on the wall.

He can speak, he can understand, but his speech is inappropriate and his understanding is inadequate, and so he is losing his language.

Why didn`t I see it?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,105
0
Kent
Example of early language difficulty

First record;

S `I must wash my hair........ It looks like rain.`
D `Don`t worry. It will dry.`
 

connie

Registered User
Mar 7, 2004
9,519
0
Frinton-on-Sea
Sylvia, think I can see where you are going with this thought about language.

When Lionel was in between bad episodes he tried to explain how things were for him, and he would say: "sometimes when I am talking it is comfortable not having to find new words"

I think that was when he was repeating his dialogue daily, (although not for as long a period as Dhiren.)

At one stage we could shop quite easily together, and I could point things out in shop windows. Till one day, on pointing out a pretty pair of strappy sandals I said "they are lovely" - he replied "they would not suit him", and he was not trying to be funny.

This went on more and more - I thought he was bored.

He can speak, he can understand, but his speech is inappropriate and his understanding is inadequate,

You hit the nail squarely on the head there.
 

helen.tomlinson

Registered User
Mar 27, 2008
541
0
Hello Sylvia

How wonderful those Eureka moments are. TP is brilliant for hosting the possibility for such moments. I feel like I've understood more in the past two weeks than in the last 2 years about Alan and myself!! I am so pleased for you. Every bit of light helps I think.

Love to you

Helen
 

zonkjonk

Registered User
Mar 1, 2007
290
0
Melbourne, Australia
hi sylvia, yes he is losing his language...I found with my mum she had "phrases" to respond to any conversation
and they were repetitive phrases
I would have liked to have thought they were normal responses to conversation...but they were not.
she had some sentences that she could produce to cover her inadequacies (sp)
how long has it been since he called you by name?
my mum fooled me for a while until i thought "OMG she has not said my name for about 8 months"
Hugs from Jo
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,105
0
Kent
Hello Jo.

He still knows my name, even when he doesn`t know I`m his wife. This is Alzheimers......he told me once he had a wife called Sylvia and asked if I knew where she was.

When I told him I was Sylvia, he twigged immediately and was very upset.

He isn`t yet at the stage of using stock responses, he repeats because he doesn`t hold the information, responds correctly, but irrationally.

The more we try to work it out, the more we tie ourselves in knots.
 
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