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

[Grannie G]

Oh thank you Sue

It`s a bit late to plant bulbs as they should be growing soon, but it`s not too late to plant seeds , in fact it`ll soon be the right time to plant seeds, so you`ve given me a very good idea.
Thank you.

 

[Georgina N]

Lucid moments

You were talking about lucid moments earlier.....when I went to

visit David in the care home the other day , he said to me , in a rare moment of lucidity : "I miss the person I used to be".

I drove home in a torrent of tears which continued for hours.
Wanted to bring him home with me but the nurse says it is impossible.

Make the most of these moments while you have him at home....you can never predict exactly when life is about to change irrevocably

xxx

 

[connie]

Dear Georgina, that is so sad.

"I miss the person I used to be".

I drove home in a torrent of tears which continued for hours.
Wanted to bring him home with me but the nurse says it is impossible.

However it does help to know that deep inside them, there is still the person we know and love. Bittersweet though.

 

[Grannie G]

Dear Georgina,
I`m not surprised you drove home in tears. This is what makes it so hard, to have to witness the suffering and not be able to ease it.

Dear Connie,
It is strangely comforting to know others share such similar experiences. I`m sure pre dementia, Lionel and Dhiren were two very different men. To some extent, even though everyone is so different, this illness is a leveller.

Dear Tina,
I wish that thoughtless driver in Blackpool, who judged Ken for being drunk in the morning, could read your post.

 

[Helen33]

Dear Sylvia

now have to think of gardening activity which does not involve bending down and is not too heavy.

I always find that supervising does it for me No bending and not heavy

There are seeds that you can pot on now and keep indoors like herbs and the like. Even if Dhiren had a few plant pots, some compost and some seeds, it could potentially feel very fulfilling.

I am so glad that Dhiren is able to self-soothe. This really is something very positive. Reading the posts today about Dhiren doing home chores is delightful as if he has been lifted out of a deep depression.

Love

 

[Grannie G]

Dear Helen

Reading the posts today about Dhiren doing home chores is delightful as if he has been lifted out of a deep depression.

This is just how I feel. It`s amazing.

When we were putting the gardening tools back in the garage, Dhiren closed the side door on himself as if he thought he was in the house. So his confusion is as bad as ever.
But when I told him we had to go back into the house, not the garage, he accepted it. Before he would have become angry.

 

[Grannie G]

The cruel reality....

The lovely day is over.
I am not his wife. He does not recognize me. He does not believe me when I say we are married. He is already married. He cannot sleep in the same bed with me, he has a wife of his own.
So he has gone into the spare room.

 

[jenniferpa]

Oh bu**er Sylvia. You don't think he might have got overtired do you?

 

[sad nell]

oh sylvia this is the only time i can say i am glad trev is mute, because if he had said that to me,. i honestley do not know how i would have reacted.i hate this illness and for all the pain it causes to people who deserve better,, glads you are so strong love pam

 

[Helen33]

Hello Sylvia

The lovely day is over.

Yes it's over for that day but not necessarily for today and the following days Dhiren probably needs a good, long rest again. I notice this with Alan, he has some very fine times but he wears himself out. Just enjoying things takes energy - and Dhiren has been using some energy that has been dormant for quite a while.

Take heart Sylvia and this will be back either today or tomorrow when he's rested

Love

 

[Grannie G]

He didn`t sleep in the nice cosy bed as I thought. He does have problems with the single bed. He slept on the couch.....doesn`t seem to have problems with a two seater `single` couch.

He had no covers and no heating on, not even the gas fire, as he is unable to turn them on.

He woke at 8am. came to bed and is now asleep.

I`m past caring [for the while, anyway]. Nothing I can do can have any influence.

 

[Brucie]

I`m past caring [for the while, anyway]. Nothing I can do can have any influence.

of course you are not past caring, and everything you do does have an influence though it never seems so to us at the time.

But it helps to find a way temporarily to feel we can cast things off. It is our body's way of coping, I think.

If you are at a loose end, contemplate what would have happened, were you not here for him, all the time.....

Go back to your first post, in June 2007

(Dhiren)Came home in a state. Hot, breathless, unsteady, in a panic. Had bought a return train ticket to Manchester and realized he only needed a single, as he wasn`t coming back.

Not only that post, but every one since.

You're brilliant.

 

[Helen33]

Hello Sylvia

I`m past caring [for the while, anyway]. Nothing I can do can have any influence.

I've said the same myself many a time but we both know that it's not true. Everything you do has an influence on Dhiren but not on the illness. You've had such an awful ride for quite a long time now that it's understandable that you cannot trust that this medication is really working and will continue to work for some meaningful time. There is room for tweaking (which you haven't had to do yet) which shows there is real ground for hope (not just hope when it's hopeless). However, you know that it's not a cure therefore dementia will show through.

After a sleep it is realistically possible that Dhiren will begin to feel the benefit of the medication again.

Love and a big (hug) to you sylvia

 

[Grannie G]

Thank you Bruce and Helen.

Kind words Bruce but `brilliant` I don`t feel. [wry smiley]

Helen I have not lost faith in the medication. It has exceeded any expectations I might have had and I`m well aware there`ll be blips, no matter how much tweaking there is.

The lack of influence I or any of us have on dementia is the point. Should we not try so hard? Or should we still try but not allow ourselves any pleasure when something works.

I feel empathy with the donkey who turns the water wheel. Round and round and round and getting nowhere. The water wheel works but the donkey doesn`t know it.

Hee Haw!!

 

[connie]

Oh dear Sylvia, can only but try to imagine how you must be feeling.

It is that learning acceptance - which we think we have mastered - and then it bites again.

The lack of influence I or any of us have on dementia is the point. Should we not try so hard? Or should we still try but not allow ourselves any pleasure when something works.

No easy answers, it is whatever works for you. I do hope that Dhiren now has a nice sleep, and that you can manage to push the hurt away - for his words must have hurt, deep down.

You are brilliant Sylvia, and I know you will continue to be.
Sending love n'hugs.

 

[Skye]

Should we not try so hard? Or should we still try but not allow ourselves any pleasure when something works.

Sylvia, we have to keep trying! You know as well as I do that you won't give up. Walk away, maybe, but you'll come back, because it's not in your nature to do anything else!

And yes, we have to have the pleasure too. Even though we know it won't last, we have to make the most of every good day. It has worked, and it will work again. We have to believe that! The only mistake is fooling ourselves that it will last, and you're not that naive!

I feel empathy with the donkey who turns the water wheel. Round and round and round and getting nowhere. The water wheel works but the donkey doesn`t know it.

Oh dear, I think many of us know that feeling!

Sylvia, you're feeling low this morning, and who can blame you?

Can you have a rest today, do something for you?

Love and hugs,

 

[TinaT]

I wish you could have a break from it Sylvia. I mean a 'real' break for a week or so. Time to recharge your batteries and come back feeling better.

I know how difficult this would be. Who would look after Dhiran? How would he cope? I really think that respite is needed, whether Dhiran would cope with it or not. One thing about this illness is that with memory loss, once he was back with you, it would soon be forgotten that you had ever gone away.


You probably feel that you just couldn't enjoy yourself if you did make the effort and push yourself to do this. My way of overcoming this was to go with someone who understood how I was feeling but would not let me mope or worry! You will be sad that he is not with you, but perhaps even if he wasn't ill, you might at some time have periods when you would not be together.

I know when I do get away for a short break, it is all waiting for me when I come back, so I try to enjoy the short rest while it lasts.

Have a break withourt Dhiran Sylvia The only way I can have a real break is to leave the country - then I can't rush back at the drop of a hat.

Think about this suggestion. It's not impossible to do
xxTinaT

 

[Grannie G]

Hello Hazel

I`m not feeling as low as I`m feeling frustrated. I feel like grasping dementia round the neck and strangling it.

Not Dhiren, I feel desperate for him.......just dementia.

This afternoon I am going to the Weight Management Clinic at the GP`s. It`s a good walk, 30 minutes each way, so I will stride out with a purpose, and every step I take will be a stamp on dementia.

 

[TinaT]

I will be able to hear those strong, defiant and purposeful steps here in Bolton!!! They will be so powerful!!!

xxTinaT

 

[Grannie G]

I wish you could join me Tina. A march against dementia.

Dhiren is still asleep. Poor thing, goodness knows how much sleep he got last night.