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

[Grannie G]

Thanks Gigi and Bruce

I`ll see what the CPN advises tomorrow, if he`s allowed in.

I could ask about a floating appointment Bruce, but I do know there are specific days for outpatients so it may not be practical. On the other hand I have been told I can always request a home visit which might be the better option.

What`s so sad is Dhiren is now in despair, having had such a good day yesterday.

 

[Skye]

So sorry, Sylvia. After being so positive about treatment, Dhiren is now saying the opposite. It sounds as if he is absolutely terrified.

I'd be inclined to go for the home appointment, and not give him any warning, so that he'd have no chance to panic. But you know best how he would react to that.

I think the SS reaction is fairly normal, I know they do close case files if there has been no action within a specified time. But you can always ring and ask for a new review at any time. There's not much point though, until Dhiren is ready to accept carers.

I hope you get some support from Terry.

Love,

 

[twinone]

Dear Sylvia

So sorry to hear you are once again going through changes, it seems like day by day and you dont get a chance to adjust.

I think you did the right thing, no point going to the appointment if he is frightened, you will get there in the end..I hope

Thinking of you
Love
Janet

 

[Helen33]

Dear Sylvia

I've just read your post and am so sorry. You must be very upset. I am sure the CPN will understand that when Dhiren is having an 'episode' he is unaware of his real needs and therefore is unable to take advantage of things that might be offered. When he is not having an 'episode' he is full of remorse and more aware. The problem is that neither he, nor you, can time these episodes.

I am probably very naive but I believe that, as it is neither Dhiren's nor your fault, Dhiren should not be penalised for being ill and hopefully some arrangement can be made for particular flexibility especially as Dhiren has expressed (during a well moment) that he is ready for help.

I wished you were more local Sylvia because I would just pop round and sit with you over a cuppa cos I imagine you are really fed up at the moment. Forgive me if I'm wrong.

Love

 

[connie]

Dear Sylvia, well it has all been said and so you go on playing the waiting game.

Know all about 'targets' and closing lists, but make sure you have follow up telephone numbers.

No words of wisdom, just sending you love n'hugs.
Hope Dhiren feels a tad better tomorrow. Must be heartbreaking for you to watch him being so traumatised.

Take care now.

 

[BeckyJan]

Hello Sylvia:

I will not repeat all the previous posts, which I follow completely.

Our SS closed our case some 4 yrs ago!! - they are not much better even with an open case

Oh how I wish there was some magic wand to get you over this - I do agree about the 'home visit'. Don't forget it is not always to do with Dhiren - you are important too.

Love Jan

 

[Grannie G]

Thank you so much

Dhiren had a short sleep following his refusal to see the consultant and woke trembling and shaking, asking what was wrong with him. I told him he had refused to keep the appointment, so then he agreed to go. I phoned immediately but as it was by then 2pm. we were far too late, our appointment was for 1.30pm.

Dhiren was obviously distressed, and changed his mind again, saying he didn`t want to go. I asked the secretary to convey to the consultant how confused Dhiren was and said I would phone again for advice.

It was a lovely day so I suggested we go out for lunch, which we did. As we were walking to the bus stop, Dhiren was saying to himself [and I think to me] `There is nothing wrong with me, I`m fine. There is nothing wrong with me, I fine.`

We were out a couple of hours and he seemed to relax, but once we were home the barrier was up again. It has stayed up all evening, apart from his repeatedly questioning if this was our home and if we were to stay here permanently.

Now he has gone to bed, brushing aside my offers of help. He usually accepts them with gratitude when he has had an episode, but not tonight.

As I went into the kitchen to clear the dishes, he got up and followed me, asking `Is this our permanent home?`

 

[connie]

Think this is overdue. Group hug everyone.

 

[sue38]

Hi sylvia,

The consultant now visits my Dad at home and this is less stressful for my Dad, but not sure if there is much the consultant can do, at home or at the Memory Clinic.

Perhaps the only thing the consultant can do is to relook at Dhiren's medication. My Dad continues on the Ebixa and the consultant is happy to continue it but he is not convinced that it does my Dad (or anyone else for that matter) any good. We have valium for the times when he becomes agitated. Tonight he was very down, wanting to go 'home'. My mum was for giving him a valium but as far as I am aware valium is a 'downer' and would have made him worse.

I gave him his half Ebixa tablet and this combined with a Kit-Kat and the snooker on the TV seemed to snap him out of it.

I'm not sure why the SW has closed your file. As far as I was aware they would only close my Dad's file once they had arranged the Day Centre and it did not need adjusting for 3 months. But I suppose all areas are different... Our SW has 'had her contract terminated'. How will we manage without her? Sweet girl, read all the right books, but no life experience...

Hope you have a calmer day tomorrow.

 

[christine_batch]

Dear Syvlia,

Just sending you lots of love and do hope things can be sorted out soon to help you both.

Love from
Christine

 

[Lynne]

Dear Sylvia

I Can't find any words that haven't already been offered ... ... This requires a double-barrelled hug!

.

 

[Grannie G]

Phone call from the CPN................

Dhiren woke at 8am. and seemed bewildered. I suggested it was too early to get up, so he went back to bed and was asleep immediately.

By 9.30am. I was becoming anxious. Would he still be asleep when Terry came or would he wake in time. I had no idea how he would be. I was preparing myself to stand by the gate to watch out for Terry.

9.45am. Phone call from Terry. He had read the posts on TP, and had spoken to the consultant`s secretary, so phoned first, just in case. He didn`t want to spoil a good day.

We discussed a home visit by the consultant and I was reassured he would be understanding if Dhiren became resentful, we discussed the possibility of some calming medication to be used at times of fear or stress and of course it would be up to the consultant to decide if it was appropriate.

Dhiren woke while we were talking, and began looking for his wallet, so I was helping him find it, while still talking to Terry.

So the outcome is a home visit from the consultant will be arranged and Terry will contact me mid week to see how things are and pass on any necessary information.

And he has cancelled today`s visit but I have still had the support.

And TP has become my message board. Thank you TP. Thank you Terry.

 

[Skye]

Thank you Terry.

I'll second that, Sylvia!

Thank goodness you have someone you can rely on for support. Don't like the jargonese term pro-active, but I can't think of a better one for keeping up with your ups and downs via TP!

I hope tha consultant will be equally effective.

Love,

 

[gigi]

Hello Sylvia...

That all sounds positive.....

They really do want to help.

It's wonderful that Terry can keep himself updated on your situation by reading your posts here...and that he is willing to do it!

He must be one in a million.

I do hope you have a better day today..

Love gigi xx

 

[connie]

Think your Terry is one diamond.

And TP has become my message board. Thank you TP. Thank you Terry.

.

He realises that face to face meetings may not work at times because of Dhirens mood swings (sorry, don't quite know how to phrase that).

He is prepared to listen to your fears through the medium of TP. How supporting for you. Hope between the two of you, and the consultant, you manage to find some way out of this distressing period for Dhiren. Take care now. Love n'hugs

 

[BeckyJan]

Oh Sylvia - one half of me is sad that you need this help but the other half is green with envy at the support you are getting.

I/We have not seen a consultant for probably 18 mths/2 yrs. and the CPN is virtually non existent, but ok on the rare visit but there is never any 'follow up'. Social Services - sent me an email following my written complaint but nothing since. When I have the energy and spirit I will deal with it.

I hope today is a good one for you and Dhiren (now you have found is wallet ).

Love Jan

 

[Grannie G]

Hello Jan.

I`m cross you have never received the same or even a comparable level of support. And I don`t blame your envy, you have been more or less abandoned by all the disciplines and it`s a disgrace.

How are things with David? IS there any change? And has he been given pain relief? I feel out of touch with you.

Love xx

 

[BeckyJan]

Hello Sylvia:
After my last post David was shouting for me!! He was very red in face, just woken from deep sleep, shaking and shouting for me to get the 'company doc' (a friend who retired and is now 80+ and lives 2 hrs away!).

I checked his bp and it was high for him. He said he couldn't wee, and checking his catheter bag found he had not done so since 8.00 am So I called for GP to visit.

A new lovely Indian lady came. She was very thorough but by this time David had calmed down. Said there was nothing wrong with him - and by the time we had got him onto the bed for examination he had weed profusely.

She checked the rash and agreed with previous doc. It was probably a reaction to heparin, even 14 days later. She is to discuss it with our main doc on Monday.

He had a little lunch, said he felt unwell confused. Now he has fallen asleep yet again.


Good news is our youngest daughter is about to visit.

I guess this has just been another Alz. episode or maybe a TIA, or just a deep dream.

I hope you all have a good weekend and I hope tomorrow is a better day for me.
Love Jan

 

[Grannie G]

Dear Jan

We all seem to be propping each other up at the moment don`t we. You must have had the fright of your life seeing David so distraught.

At least once your daughter arrives you will not be so isolated.

I hope you are all right tomorrow and have a good week end too.

Thanks for the update.

Love xx

 

[Helen33]

Dear Sylvia

I seem to be the last person to catch up on your news. I am very pleased for both you and Dhiren, especially as it is now clear that Dhiren is requesting help when he is able.

It is a very rocky path that we all tread but somehow, sometimes, when we get to the end of ourselves and reach out we find ourselves on another rocky road with other people trying to help ease the passage. Since Dhiren was admitted into hospital things have changed drastically in that support is there for you but it has yet to be honed to fit into a helpful formula. I am so glad that you have the commitment of the CPN and I think that slowly, but surely, you will find what's right for you both in the immediate.

Dear Jan,

I just don't know what to say My heart just sinks when I think of you abandoned just about. I wonder whether you writing to the Consultant would do any good. You could put in one of the TP leaflets I have heard on the grapevine that Crossroads Nottingham is expanding to include Derby. Don't know how correct my information is.

Love