Please..if there is a god out there..

[gigi]

Jennifer..I will challenge the SW's decision to assess Eric's Mental Capacity while he's in respite. From reading through the links that Sandy gave me I'm on firm ground with that.

Personally I would be lobbying to have a different person do the capacity evaluation (or your own person as well - can you get these things done privately?)

AS Advocates are visiting 15/03 to do just this...

Tina..the consultant quite frankly is now out of the picture regarding Eric's AD. He is no longer on Reminyl and the consultant has stated that he thinks Eric's physical decline is moving more quickly than his mental decline. His last MMSE score was 21..this is a man who needs all care, doesn't know what day it is or whether he's had breakfast or been to the loo. But he can still spell world backwards...

SW has just phoned me. She has organised day care for Eric every Sunday at his respite place.
A taxi will pick him up from home at 10.00a.m. He will spend the day there much as he does when he's in respite..watching TV, smoking and being fed. The taxi will pick him up at 6 in the evening and bring him home.
So I will have one day a week completely free..if it works.

It's a start..and I won't refuse it. I'll try to persuade Eric to go.

Love xx

 

[Grannie G]

Well at least the SW is trying gigi, even if it is more what she wants than what you need.

 

[Helen33]

Dear Lizzie,

Jan and I have been wishing you well today and hoping that it would prove of value and not more time wasting and energy wasting for you. I had to read and re-read your message and eventually I felt you made a definite statement which is "my aim is to have Eric in permanent residential care by the end of the year or before if it becomes necessary". In this case you are doing excellently in inching your way towards that goal because you have 9 months in which to achieve it. However, you have to survive 9 months and I wonder whether you can begin (if you haven't already) put together some thoughts of what it is that you need in order to be helped to get through the 9 months without having your health (physical and mental) seriously affected.

We are both glad that your daughter was there to support you.
Sending love

 

[Helen33]

Just caught up with your latest post and that seems a really good idea in principle and I hope Eric will comply. It could be a start in getting you something of what you need - mind you it's only a start

 

[BeckyJan]

This is a quick reply as I/we have been thinking about you.
You will understand I am working my fingers to the bone with such demanding requests here

I hope Eric will comply

My thoughts are: if you insisted on him going into respite you need to use the same technique/attitude to get him to day care! I do realise this is easy to say.

Like Helen, I see you are progressing slowly towards the target.

Love

 

[Lynne]

Oh Gigi, you need a good, regular, balanced meal and all you have been offered are crumbs!
That's my impression, having done a quick catch-up over the last 3 pages here.

Yes, IF Eric will go to Sunday day-care that will at least give you a little regular respite, and something is better than nothing, but if he WON'T go ...

I hope you can adapt to sleeping in the daytime ...

Love xxx

 

[Izzy]

Thinking of you Gigi. Izzy x

 

[Nan2seven]

Dear Gigi - I'm afraid I too am disappointed with the outcome of to-day's meeting. It gives you very little in the way of relief. Lack of sleep plays havoc with one's ability to cope with ordinary day to day living, let alone caring 24/7. I am surprised at your SW's lack of understanding on this huge issue.

I am pleased to see that you may be getting Sundays free, if Eric agrees to go to the Day Centre/respite home. I do hope he agrees to it.

And I am delighted to see that the AS advocates will be doing a mental capacity evaluation on the 15th March. Perhaps the outcome of that will help things along too.

Thinking of you and sending love, Nan XXX

 

[Mo_N]

When is your next respite? And why do the evaluation in respite anyway? Surely the place where he is currently living is the most appropriate location?

Like Jennifer I fail to understand why the SW insists on waiting till your next respite to assess Eric.
Has she given you a reason?

I really hope Eric agrees to go on Sunday to give you a few hours to yourself.

Will be thinking of you.
Mo
x

 

[muse]

Oh, Gigi. It all sounds so slow. In 9 months' time you might have bitten off your thumb and plastered your head against the wall. I keep reading this thread, and I feel so much for you (((Gigi))) big hug. I only had a few days of 24/7, and 2 weeks of day care at home, but mornings and evenings of just being there for Philip, in his world, his needs, his anxieties from the moment I woke up to the moment he was prepared to go to bed. I even managed to sleep at night, but it exhausted me mentally. I don't know how you cope.

But I never see any mention on the thread of AS outreach workers or carers' support workers. Do they not exist in your area? AS workers do have access to/influence on SWs, and my carers' support team organise lovely events for carers to get pampered occasionally and get the opportunity to meet each other, as well as being available on the phone or in person if things get desperate. They really do understand your situation from your perspective (my AS worker's husband had dementia and died, the carers' support manager is a carer for her mother). I'm not familiar with the advocacy role, perhaps they fulfill the same function, but you sound like you desperately need an update of your carer's assessment and tell it as it is now.

If it could honestly be argued that Eric is better off, happier, at home, then perhaps I could understand your angelic patience (9 months?). But he doesn't sound like a happy bunny to me. And it doesn't seem right for you to have to sacrifice your life completely (the expression "altar to dementia" springs to mind). One life is affected by this terrible illness whatever happens. Does it have to be two? Even if the sacrifice of the 2nd doesn't bring any relief or improvement in quality of life? Just savings to the LA?

I'm sorry. I'm really going on. What I really wanted to say was: if you have any strength left, find and pull all the strings available to speed things up. We're both in similar positions. I know I'm in the lucky position now of Philip being in respite care, but the one thing you have to your advantage is that you don't have to spend 7 1/2 hours a day trying to hold on to your job and perform on that level. Use the hours when Eric is asleep in the day to get whatever help you can get. This forum is fantastic for this, but it can also get a bit addictive, wanting to help others etc. (and I'm one of the beneficiaries of that) when right now your needs are the most important in the world.

I hope you get some sleep tonight. Lots of love and understanding

Kathy

 

[gigi]

I feel a bit shell-shocked tonight.

Already I'm thinking..whoopee..I can have Sunday free..then I'm thinking ...how can I persuade Eric to go? And how much more will this extra effort take out of me? And is it really worth it?

Honestly my thoughts are probably as muddled as Eric's are....

Hopefully I'll be able to sleep on it tonight and think more rationally tomorrow.

Some of you have asked really valid questions as well as giving such good support..I'll get back to you tomorrow.

Tonight so far Crocodile Dundee is keeping Eric at bay..apart from a conversation while we were eating dinner when he got round to letting me know that if it wasn't for his money I wouldn't have anything..because I don't go out to work anymore.
It's not worth pursuing these conversations as he'll never realise the truth and the reality of our situation.

And even though I'm trying to detach myself emotionally this sort of thing still cuts deep.

Hey-ho..tomorrow will be here soon. Onward and upward..nil desperandum etc.

Let's hope we all have a peaceful night and some healing sleep.

Love xx

 

[susiesue]

Thinking of you Gigi - sleep well

Love

 

[Sandy]

Hi Gigi,

Well it does sound like things are moving along, although more slowly than many of us would like.

The Sunday day care option sounds like something worth trying. It would give you a break for 8 hours, in your own home, with no carers coming in to interrupt your peace. Does Eric still think about work? Would he accept a taxi coming to take him to 'his meeting'?

I am still trying to understand all the in's and out's of this assessing capacity process. My limited understanding at the moment is that it doesn't have to be a 'one-shot deal'. That is, Eric could be assessed at home and the conversation could focus on his understanding of his surroundings, care needs, relationships, etc. He could also be assessed in respite on similar points and his general level of contentment/satisfaction with the care available.

In one of the case studies I read, the lady involved was given a 4 week trial in a care home so that she could experience for herself the care available and that was part of the overall assessment process.

It's good that the local AS workers will be helping on the capacity front.

I don't know much about the issue of conflicts of interest in the LA SW doing the capacity test.

My understanding is that if Eric was found not to have capacity and it was felt that an independent voice was needed to speak on his behalf, then there might be a role for a Independent Mental Capacity Advocate:

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_073931.pdf

The IMCA's role, as I understand it, would be to represent the person with dementia and ensure that there was no conflict of interest if SS's interpretation of their care needs was influenced by a desire to limit the services offered.

ICMA's are usually used when the person with dementia does not have someone to represent their interests, so would not be used in Eric's case.

Also, the other scenario in all of this is that Eric does have some capacity and would have enough insight to see the impact on you and feel comfortable enough in the respite home to agree to stay (although I think the word 'permanently' would be hard to include in that sentence).

Take care,

 

[TinaT]

It makes me so angry that you have asked for help and been given so little and so innaproriate help. Again the postcode lottery comes into play. That they can maintain that Eric has good mental capacity tells me that they are hiding behind a technicality the fact that their budget is overstretched. You need a loaf and they have given your crumbs (to repeat the analagy someone earlier said)

xxTinaT

 

[Tender Face]

Gigi, I remain ‘gob-smacked’ by what’s going on. I’ve dipped into the Carers’ Equal Opportunities Act and other bits today because your situation is playing so much on my mind. I cannot understand how Eric seems to have ‘rights’ about what happens in his life and you as carer do not seem to have any of your own. You've both arrived at this point in life through default? I suppose if you are found in a bus shelter one night having finally crumbled SW will HAVE to do something to help you too, and Eric would be whisked into residential care quicker than you can say 'velocity'?

That Act may be of help if you insist you need to work/study and have leisure time .... I guess you’d settle for leisure time (i.e. some time to sleep at least!).

I know you mentioned going back to work previously if Eric went into care ... perhaps that's your ace card? Now that Eric has mentioned it you could say it is troubling him .... then you would HAVE to be supported because it's in Eric's interests you return to work/re-train?

Someone a bit more savvy than me might pick up on this and move it forward – but hopefully the AS advocates will be able to do that ....

Sorry, no more help other than ‘thinking of you’ ....

Love, Karen, x

 

[gigi]

Another big thankyou for the hugs and the wise words...

I've been looking in more depth into the process of assessing Mental Capacity..and Sandy has raised a good point..that the assessment does not necessarily have to be a one off, it can be done over a period of time and in different locations.

The info also states that the practitioner carrying out the assessment should be qualified and very experienced in such matters. While our SW may be qualified, she is very young and I doubt whether she has the length or depth of experience to assess Eric's mental capacity.

That they can maintain that Eric has good mental capacity tells me that they are hiding behind a technicality the fact that their budget is overstretched.

I think that's fair to say, Tina. In fact if you think about it the overall emphasis just now is that "government" is pulling out all the stops to keep people in their own homes.

Last night wasn't too bad, Eric slept until just after 5 which is just about acceptable.

We've had a bit of a morning though...

And he certainly is no longer constipated...

I've phoned the CH about tomorrow..just to find out a bit more as the SW was very vague.

Eric can spend his day doing what he likes best..watching TV and smoking in the little lounge.
He will have Sunday lunch and tea before the taxi brings him home...
And I'll pack a little bag with a change of clothing etc. just in case.

Keeping my fingers crossed this will work out.

Love xx

 

[ChristineR62]

Dear gigi

There's precious little advice I can offer, but I can send you lots of hugs, and wish for the best possible outcome for both you and Eric.

Love
Christine
xxx

 

[Helen33]

This is Jan's private secretary here typing her words.

If Eric is concerned that you haven't any money because you don't work, can you use this as an excuse to get him to the day centre? For example, prior to the first day I need to go and apply for a job because I have an interview!!! Then second time around, maybe say I've got a job today!!! I don't know him well enough but you do and do you think this might help?

Love

 

[Grannie G]

I don`t know about gigi but it sounds good to me.

 

[TinaT]

In my experience, any explanation, reasoning etc., only lasts a very short time and then the essential unhappiness of the sufferer, the bewilderment and the impossible demands to have all of the carer, 24/7 comes right back.

But if it gets him to agree to something just whilst you get him there which is of benefit to both of you, I would just repeat it every time it was needed to be said.

In fact that's what I do almost every day of my life. It is very wearing, very hard on the emotions, but very necessary for you to survive and keep on caring.

xxTinaT