It's been a bad day

[connie]

Actually Lynne you have summarised it well:

And like fetching a glass of water quoted earlier, he can do it when it's his idea because he doesn't have to do the additional step of
processing & remembering your request for him to do it, or worry about forgetting or 'getting wrong' some part of your request?

When I was in a wheelchair for six weeks, early on in Lionel's illness, he could not seem to do / get anything right. Why? because I had put him under stress by asking him to do it, and he just could not cope.

When I was back to normal and prompting him along he was so much better.
I am glad you said it - makes so much sense.

 

[Helen33]

Thanks Heartbroken, Lynne and Connie

I am sorry you've been set off weeping Heartbroken and I know you are having it tough. You are a tower of strength to your loved ones and to me.

About the glass of water Lynne, it fits to some degree I'm not sure how things quite fit at the moment. Today Alan has been able to follow some instruction. It's just odd. I tend to think of it like faulty wiring. The kind where the lights flicker at times (or in yesterdays case go off) but then they are back to flicker again. With faulty wiring it is inevitable that one day it will fail altogether. Yesterday was the first experience of the lights going off altogether. But today flicker and even periods of no flickering! It's almost like something is being merciful towards me by allowing me to prepare for the next stage rather than having it just thrust upon me, like it felt yesterday. Sorry for rambling.

Connie, thank you. You are an angel.

Love

 

[Margarita]

The kind where the lights flicker at times (or in yesterdays case go off) but then they are back to flicker again. With faulty wiring it is inevitable that one day it will fail altogether. Yesterday was the first experience of the lights going off altogether. But today flicker and even periods of no flickering!

Now thats what happen to my mother, there are days mum asks me to pull up her knicker , then other days mum does it on her own , other days mum bushes her teeth on her own with no promoting from me, while other days I have to prompt mum

I also use to get right upset when mum stated to lose her skills. then I got use to being amaze seeing those skills come back out of the blue, also my mother conversation would just despairer, hours days on end mum hardly talk , then the next day mum starts taking, like normal .

Must be what they call the days of clarity

 

[Helen33]

Hello Margarita

It is puzzling isn't it Margarita. It's really got me thinking today but I suppose if those working closely with it for years don't fully understand it, I don't suppose my poor efforts at thinking will do much good.

I am wondering whether it's like there's loads of connectors to each ability and when a light goes out, another is switched on until that goes out and eventually they run out of connectors?

Whatever, I suppose wondering how it happens doesn't stop it happening. Maybe it's just nicer to switch on the intellectual after such an emotional day yesterday - who knows.

Love

 

[lesmisralbles]

I am wondering whether it's like there's loads of connectors to each ability and when a light goes out, another is switched on until that goes out and eventually they run out of connectors?

You might have a point.
Barb X

 

[Skye]

I am wondering whether it's like there's loads of connectors to each ability and when a light goes out, another is switched on until that goes out and eventually they run out of connectors?

I think that's a good analogy, Helen.

I think we can take it a bit further, too. When a battery is getting a bit furred up, the light will flicker, maybe go out for a bit, then come on for a while again. But eventually the furring will block the connection totally.

The plaques and tangles are the fur on the battery.

Not a scientific explanation, just my own view.

I hope Alan's light stays bright for you for a long time yet, Helen.

Love,

 

[Helen33]

Hello Barb and Hazel

hope Alan's light stays bright for you for a long time yet

Me too. He's just come in and said quite clearly "you are my life" and he had a lovely smile.

Goodnight, I'm now off to bed to catch up on some very much needed rest.

Love

 

[Lynne]

Me too. He's just come in and said quite clearly "you are my life" and he had a lovely smile.
Goodnight, I'm now off to bed to catch up on some very much needed rest.

Helen, what a lovely note to go to bed on. Sweet dreams.

 

[lesmisralbles]

Helen

Ron said to me tonight, thank you for all you do. I know I cause you hard work, and thank you for the lovely meal tonight Then he gave me a BIG HUG.
It does make my heart want to sing
Tomorrow- who know's. TOMORROW IS ANOTHER DAY - yes it was me that said it (just a dig at some unfortunate soul that has not got a sense of humour).
Barb X

 

[Helen33]

Dear Barb

TOMORROW IS ANOTHER DAY

From one of my favourite films "Gone with the Wind" - something I'm always quoting

Love

 

[Canadian Joanne]

Helen,
I'm late catching up but my heart went out to you as I read your posts. I thought your analogy about connectors was excellent.

Hope you had a good sleep and that Alan is having a good day today.

 

[Helen33]

Hello Joanne

Thank you so much. Alan is much improved (yesterday and today) and he certainly seems a lot more cheerful. I am learning as I go along and many of you did say he could get better after the virus but that it might take some time. Now I have the experience of what you all meant. I certainly won't give up hope so readily next time.

Love

 

[heartbroken]

So pleased he is still improveing Helen
long may it contiune.

Edna is still bad I will try to post later see how I feel
Hugs to you and Alan x

 

[Grannie G]

I`m so pleased you and Alan have had a couple of better days Helen.

We know how infection affects us all, but what is such a shock is how severely it can affect confusion in those with dementia.

Love xx

 

[sue38]

Helen,

Good news that Alan is feeling better and you have had 2 better days. This illness really is a rollercoaster, just when you think things won't improve ... up you go!

 

[Skye]

Good news, Helen.

I'm glad you're both feeling better.

Love,

 

[Luca]

Dear Helen So very sorry to hear of Alan's different behavier and so quickly. This illness must be the most taxing on the wife and family and also the most cruel.. I hope that you will have a better day tomorrow and you both have a good nights sleep. My love. Luca.

 

[Casbow]

Its been a bad day

Today has been a day for facing up to the change in Alan since the virus. Alan hardly understands anything I say now and so I find myself repeating things over and over. For example:-

me: would you feed the birds
Alan: He gets the watering can and starts talking about something
which I can't understand
me: The garden doesn't need watering, can you feed the birds
Alan: o.k. - then he starts to pick up something else.
me: Alan look at me - can you feed the birds and I am pointing
to the bird tables.

He doesn't understand. I then get the bird food and give it to him. I feel so full of resentment at those moments and keep chuntering under my breath "I might as well do it myself in the first place".

I go to the kitchen waste bin and throw something in only to find that Alan has put the bin liner on the outside of the bin and he's done it so neatly that it must have taken him ages. I didn't notice myself at first because it's an inner bin and I couldn't tell from the outside.

I am so sad, worried, depressed, weepy and frightened because in just a few weeks it feels like I've lost a massive part of the man I've shared with you all. If I was to have joined TP for the first time tonight I would have presented very differently.
I never believed for one minute that things could change that fast. All weekend we've been nowhere. Granted we've watched the Olympics but I feel absolutely awful.

I really feel for you. My husband is deteriorating rapidly now and I find myself feeling very cross with him and i know he can't help any of it. The worst thing that is new ,is that he gets nasty with me ,even if I say something like 'Do you need the toilet before we go out.' Next thing we are argueing and everything tells me there is no point ,but I am so wound up. I suggest you do what I have been doing for months now and just don't ask him to help you with even the smallest job. If, like my husband, he asks if he can help, be prepared to see him walk away within a few seconds. Try to accept that he simply can't understand. This damned illness is so cruel to you both and we are not saints so please try not to beat yourself up about the situation. I wish you the best and hope things settle for a while.x

 

[CeliaW]

Casbow, I am unsure what answers you will get as this post was started in 2008 and I know things have changed since its start. I am sorry to hear of the difficulties you are having, maybe you would get more replies/ support if you started a new thread?

Take care x

 

[Helen33]

Hello Casbow,

Thank you for your response to my situation as was. Alan has now passed away and my life is drastically different. In a way it shows there can be quality life after dementia. When I read my initial post on that thread, I could see with hindsight my errors. I did learn how to communicate more positively with the help of a speech and language therapist trained in dealing with the type of dementia that Alan had.

I do feel for you as you are in the thick of it. I can't express enough how vital Talking Point was to me throughout our dementia journey. I will always believe that because I was so supported, Alan had a much better life with dementia. I learned a huge amount about the disease and also learnt where and how to ask for help and support.

I will pop into TP again to see how you are getting on. I sincerely hope you find the help and support I did.

Love