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

[Canadian Joanne]

Dear Sylvia,
It was heartbreaking to read your description of last night and this morning. The first time is always the hardest, isnt' it?

I hope Dhiren has had a wonderful day and forgotten all his trepidations. I know it won't be the same for you but if he is happy, I know you will be at ease.

Love,

 

[Lynne]

Dear Sylvia

Fingers, toes & everything else crossable firmly entangled for you. Will you be able to phone C. to get her take on how things went? Dhiren's views might be a bit selective, especially if another member of the group 'offended' him, even without meaning to. I get the feeling that he is likely to be very much on his Dignity in a new situation, BUT he may actually find it easier to deal with if you aren't there to observe anything he might find difficult or embarrassing.

My Mum goes to daycare once a week (every week for the last 18 months) and can still never remember anyone's name, what they have done, or what she had for lunch by the time she gets into the car when I pick her up! I know Dhiren is much more self-aware than that; obviously he remembers still his time in hospital quite vividly, as it seems the mention of it this morning changed his mind.

Positive thoughts for your peace of mind & sanity!

Love
XxXxX

 

[Grannie G]

The ambulance escorts were told to tell me Dhiren had had a lovely day, he`d taken part in activities, enjoyd lunch and told them he`d had a good time.

They called out `see you next week` and he replied `get lost`.

He asked how I could send him to a place like that, and told me I have dragged him down into the gutter.
He doesn`t believe it was at the suggestion of the doctors.
He seemed to think the centre was for out of work dossers, all sitting around waiting for a job.

I will go to the relative`s support group tomorrow and C**** will be there. I will find out from her how he really was.

It is as I expected.

 

[BeckyJan]

Hello Sylvia:

Oh dear - all I can say is maybe tomorrow he will have a different outlook on it. Hopefully he will forget and start again next Monday. David was always like that - put on a good face, co-operated and then when home ...... Don't give up yet!

David is home, has been very confused and today very tired, but he was pleased to see me. He is asleep now!

Hope Dhiren sleeps well after a tiring day.

Love Jan

 

[Grannie G]

Thank you Jan but I doubt he`ll have forgotten by tomorrow.

At least David was pleased to see you. I hope you had reports of a good week for him.

Love xx

 

[Lynne]

Oh Lord

"It is as I expected"

Oh Sylvia, you sound SO tired & dispirited, I'm so sorry that Dhiren seems to have 'taken against' the idea.
Do you think he was sundowning at the time when he said it? Might he change his mind?
Perhaps if C. visits him at home again, softly softly ...? Or perhaps not

I know my Mum's initial reaction on her 1st day at DayCare was shock and horror.
Many of her fellow 'inmates' eek: a term she used herself) were, at that time, much more confused/disabled than she was.
She was then sufficiently self-aware to think "Is this what I've come to", or maybe "Is this how others see me?".
Her carers were able to settle her by making her feel useful, as she could help others in the group in small ways.

I hope tomorrow is a better day.

Love
XxXxX

 

[Brucie]

They called out `see you next week` and he replied `get lost`.

In such painful things I still find perverted inspiration.

That Dhiren would reply in this way I know is unhelpful to everyone - but [as with Jan] I find their spirit so admirable but also so painful to behold.

 

[Skye]

I'm so sorry, Sylvia. I think everyone on TP was thinking of you both today, and willing Dhiren to enjoy it.

I wouldn't put too much emphasis on his reports though, Johnwas always very negative when he came home from daycare, but he was fine when he was there.

I hope the report you get from C will be more positive.

Love,

 

[Grannie G]

Thank you Lynne, Bruce and Hazel

Whatever the report from C, if I have this hassle before and after, morning and night, the benefit for me will be counter productive.

I`ll see what tomorrow brings from C and Dhiren and take it from there.

Paul is so frustrated. He is still at the stage of thinking there must be something that can be done to make things easier. He finds it hard to realize there are limits to available provision and limits to the benefits of available provision. And he finds it horrifying that I should be resigned to plodding along as best I can, indefinitely.

 

[gigi]

I'm sorry too, Sylvia..but don't give up hope.

Eric complains bitterly to me about the day centre..

He's the youngest one there..the only one who can talk properly. The rest are old, fat and ugly.
The food is dreadful...etc.etc.

But he still goes from time to time. I never force him...if he asks if he should go I give what I think is gentle encouragement.

He also says he hates it..but the reports back to me from the support workers are that he is happy and seems to be enjoying it while he's there!

It'll be interesting to hear the reports from C.

love gigi xx

 

[ROSEANN]

Dear Sylvia
Even after 10 months my husband still pulls his face about going to daycare, but I need that break I kept telling myself all the while feeling that old guilt monster.
That is until a few weeks ago.
I was asked if I could help out with the driving for a few weeks while the driver went on holiday, this was not a problem and it opened my eyes.
When I went to pick him up I could hear him laughing before I got to the room so I stood outside listening to the fun going on, but when we where going home I asked him if he enjoyed his self and no was answer.
He was as usual very quiet and hardly said a word but after what I had heard I now take no notice.
Everthing he says I now take with a pinch of salt and I no longer feel guilty about sending him.

I know this does not help you but I thought I would just tell you about it.
Love Roseann

 

[lesmisralbles]

Whatever the report from C, if I have this hassle before and after, morning and night, the benefit for me will be counter productive.

Hi Silvia & Dhiren
I am dissapointed for you both, that the visit did not work out as well as you might have expected.
I also think that "Get Lost", show's spirit. But, not what you wanted to hear Silvia

Are you not getting hassle morning and DAY and night anyway?

What did you do with yourself today ?
Worry?

I cannot say a lot, because I have big problem's with Ron. And I need sleep.
But to quote you Silvia "the benefit for me would be counter productive". It would be the same for me Silvia X
Sending love to you both
Barb & Ron XX

 

[connie]

My dear Sylvia, one step forward, two back methinks.

Once again only you are in the position to judge what is most benefical for you both. Granted there is a lack of suitable provision, and what is good for one does not suit all.

I hate the balancing act we are sometimes forced to do, just to try to keep life on an even keel. Even then we get it wrong often.

Do hope that something works out for you soon. Thinking of you both, Con.

 

[Lynne]

Dear Sylvia

Paul is so frustrated. He is still at the stage of thinking there must be something that can be done to make things easier.
He finds it hard to realize there are limits to available provision and limits to the benefits of available provision.
And he finds it horrifying that I should be resigned to plodding along as best I can, indefinitely.

Someone who used to post here quite frequently (sorry, can't remember who) had a signature tag which went something like
"Since I gave up hope, caring has become easier".

I think that that's a realization - horrific as it is - which only full time hands-on family carers come to.

 

[Grannie G]

Thank you.

I was in bed before 9pm. and woke at 1am. Dhiren came to bed wihout disturbing me and is still asleep.

I will go to the relative`s support group this morning and see what advice I get and whether or not he did `enjoy` himself yesterday.

I doubt it as last night his face looked tortured. We were polite to each other but subdued with our individual worries.

My gut feeling is not to put him under any more pressure and keep him at home for as long as possible, accepting help for myself only.

The day to day hassle and odd incident is far less traumatic than the events of the last 36 hours.

And we still have some good times. With the day centre threatening Dhiren, I feel the good times will be a thing of the past.

Love xx

 

[gigi]

Dear Sylvia,

I think Connie hit the nail on the head...

Once again only you are in the position to judge what is most benefical for you both

If the Day Centre is going to cause so much trauma for you both it hardly seems worth it.
Neither of you is going to benefit..

I'm so sorry.

Love gigi xx

 

[Brucie]

My gut feeling is not to put him under any more pressure and keep him at home for as long as possible, accepting help for myself only

I think that is sensible. It worked for us.

 

[andrear]

Hi Sylvia
I can really relate to how you feel right now that is why I don't put dad under any pressure too. He just would not go anywhere that he didn't want to go.
I am finding that it is much easier just to leave him be. You and I are certainly in for the long haul aren't we?
Love AndreaX

 

[Brucie]

You and I are certainly in for the long haul aren't we

I always say for long haul, try to go business class, for more legroom and comfort.

As someone once said about me - "Champagne taste - Guinness money", so I've not ever managed business class, except when I was... in business, and someone else paid [and that was only once!].

However, the business class maxim holds:

- Try to give yourself some extra space

- Look for some goodies along the way [better breakfasts, warm face towel, - the caring equivalents of those]

It IS a long journey, and it is not a crime to try to make it better for the carer.....

 

[Grannie G]

Dhiren thinks he went to a factory. [OT?]

All the jobs were taken so the people with no jobs sat around playing cards all day. As he has never played cards in his life, [not correct] he sat in the `canteen` just watching.
There is only one factory so few jobs. He`ll have a much better chance of getting work if he goes back to Manchester.

He is too tired today. He will go tomorrow.