After respite..the reality hits...

[susiesue]

Hi Gigi

Just caught up with your thread again - and I can quite understand how you are feeling.

When David went into respite I must admit I felt 2 weeks was too long, but now that we have survived the first week I do think that one week is not long enough and IMHO not sufficient for you get a good break.

Why don't you try to get Eric in for a two week respite and see how you feel. Mind you having said that I am now getting concerned about what sort of state David will be in on his return, as you found with Eric.

Just an idea.....

Love and (((HUGS)))

 

[gigi]

That Rollercoaster..

I have a first class ticket for it..

Eric has settled,he is asleep a lot of the time and thankfully mostly sleeps through the night too. In short he's easy to care for. When he is awake he is confused at times..but aware enough to remind me thismorning that he hadn't had his morning tablet..

But I am now his angel and he doesn't know what he'd do without me.
I don't feel good about myself for even considering permanent care when he says things like that.

And it may not matter now. Apparently Eric will not meet the criteria for funding for permanent care as things are. In effect we'd have to pay..so as well as going out to work to support myself, I'd also have to work to supplement care home fees as Eric's pension alone wouldn't cover this.

On the plus side the next respite has been extended to 10 days...

Eric's review will happen this Friday...so far my info is from phone calls. I'll see the SW then, face to face and maybe find out a bit more about things.

Love xx

 

[DeborahBlythe]

On the plus side the next respite has been extended to 10 days...

Eric's review will happen this Friday...so far my info is from phone calls. I'll see the SW then, face to face and maybe find out a bit more about things.

Love xx

I'm glad to hear that the respite has been increased, Gigi. That will be something to look forward to.
Do they come to your house to do the review or do you have to go somewhere to meet them?
x

 

[susiesue]

So glad to hear that Eric is easier to care for now.

I am at a loss to understand the system - it seems to me 'heads they win, tails we lose' - everyone I have spoken to SW etc have contradicted themselves or got everything totally wrong.

Anyway it's good news too that you have had the respite extended.

Love

 

[gigi]

The SW and the Senior from the Dementia Care Team will come here to our home to do the review.

It goes against the grain with me to have to think about finances...I hate it.

I might be ringing AS helpline tomorrow for advice...

Love xx

 

[DeborahBlythe]

I'll be thinking of you and wishing you well.

Forgot to say I liked the picture of the woodpecker. Woodpeckers are very special.
x

 

[BeverleyY]

The SW and the Senior from the Dementia Care Team will come here to our home to do the review.

It goes against the grain with me to have to think about finances...I hate it.

I might be ringing AS helpline tomorrow for advice...

Love xx

Hi Gigi

I hope the review goes well on Friday. Hopefully the AS helpline can offer some good advice.

Finances make this horrible illness even less bearable I think. As if the emotional strain isn't enough to cope with!

Best wishes to you both.

Beverley x

 

[TinaT]

Gigi, there are a lot of ifs and buts about this but you may not have to subsidise Eric's permanent care.

I don't know if the house is in his name alone or in your joint names or only in your own name but you cannot be made to sell the house to pay for his care as long as you live there. And only if the house is in his name alone could the house be sold for retrosperctive care fees should you ever leave. That's one thing out of the way.

Now regarding funding his care, others who are more knowledgeable may tell you I'm wrong but I do feel that only his income will be taken into account. His pension and any private pensions will go towards his care if they decide he has to be self funding but your income should not be taken into account at all.

I hope someone will come on and let you know more about this.

xxTinaT

 

[gigi]

The house isn't an issue, thankfully. It's in joint names therefore is out of the equation. and we have no mortgage.

Because I took early retirement to care for Eric my NHS pension is minimal..not enough to live on. We currently live on Eric's state pension, his company pension (tiny) and his attendance allowance..plus my carers' allowance. As we are we are comfortable.

As I understand it, Eric's income would be used to fund his care. I have no problem with that, but there would be a shortfall as this alone is not sufficient to fund full time permanent care. He currently doesn't meet the criteria for full time care therefore that shortfall would have to be met by me.

Meanwhile I'd need to be earning enough to live on as well as meeting the shortfall...

Perhaps I'll know more about it after Friday.

To be honest, it's more hassle and I can't be bothered..even though I know I should be...

Love xx

 

[sad nell]

Gigi i so understand, i burrow my head in the sand, because i cannot face the implications, it is a mine field, and have decided not to stress any more and what will be will be , know not helpfull to you but i just cannot face dealing with the reality , so have chosen not to. love pam

 

[dillydaydream]

What are these critera?

Hi Gigi - I too have been told that Mum doesn't meet the criteria for full-time care but have no idea why. If we were to die suddenly, for example, who would then take over the care? Neither Eric nor my mother could manage on their own so what would happen then? I wasn't looking for nursing home care or continuing care, just residential care which I, mistakenly, thought was for people who couldn't look after themselves. Care in the community is fine in principle for some but carers popping in three times a day just doesn't work for anybody who is constantly confused and bewildered.
Carolyn xx

 

[gigi]

, it is a mine field, and have decided not to stress any more and what will be will be ,

Actually Pam that's very helpful, thankyou

i just cannot face dealing with the reality , so have chosen not to.

My sentiments exactly.

To be perfectly frank I don't think anyone knows what the rules are any more, they've changed so frequently.

We'll see if Friday can shed any more light on this.

Deborah..

Woodpeckers are very special.
x

They are! Green Woodie visited yesterday!

Love xx

 

[hazytron]

Wishing you well for Friday Gigi, in the meantime, join me in a glass of red, only one! We need to keep our heads to deal with what ever is thrown at us, but yes, what ever will be, will be.
You are one of the best.
Love Hazel

 

[TinaT]

I'm in a similar position to your Gigi in that I gave up work in Spain five years before I should have. This meant that I was five years short of claiming any Spanish Pension.

So I get nothing from Spain and a much reduced pension in England despite the fact that I had always paid full national insurance when working. Because I worked in Spain some years, and had to stop working to look after Ken, I'm penalised there. I'm also penalised because I took time from working to care for our children when they were very young. We returned to England 6 years ago I couldn't work because of my husband's illness. This means my only state pension is small, too small to live on.

Fortunately I also have a private pension from the years of working in England and contributing to this in order to give me some security on old age. However this brings me just over the limit to claim benefits, so I'm hit financially in every way regarding my pensions.

I listened to the Great Care Debate which is very topical at the moment because the three major political parties are jumping onto this bandwaggon to do some early electioneering. Although the parties disagree in details, they all agree that we should save up for our own old age and not expect the younger generation to pay for us in taxes.

One lady phoned in who had given up work to look after her parents and was now living on a reduced pension because of this. She asked how could she afford to pay for herself in old age?

It seems that Carers get the brunt of it all. We live on reduced pensions because we had to give up work to become carers, then we are punished when we reach pension age ourselves!

Talk about between a rock and a hard place!!

None of this helps you Gigi, I only wish it did and I'm sorry to spout on like this on your thread. When you have so many problems already, you should not have to be worrying about how to survive financially!

xxTinaT

 

[gigi]

Today's meeting...

This could be a long one... before I go any further, please Tina, don't fret about disrupting this thread because it's all valid. I considered starting a new thread about this but think it's important to keep the continuity about how this will work out eventually.

It started out as Eric's review and ended as an update on my carer's assessment as well. Which makes a whole lot of sense..

Our SW "N" and the Senior from the Dementia Care Team "L" were here for the best part of 2 hours today.

2 professionals with "different heads". But both wanting to support.

The reality is: (As the SW sees it) (From Eric's point of view)

a) Mental Capacity Act...(incorporating Deprivation of Liberty)

Eric does agree ( although reluctantly ) to respite care.

He is not happy about this situation, apparently, and makes that known to those who care for him while he's there..

He would therefore have to agree to permanent care. Unless he was deemed unfit to agree. And we all know he wouldn't agree to that.

b) Funding is not an issue. LA would subsidise in the same way as they are doing for respite care.

The main stumbling block re permanent care is that Eric is still deemed to have "Some Mental Capacity". But it was acknowledged that this is changing.

My issues as the main carer were taken into account..and firmly backed up by L.

As a result..I can access respite care as when I feel the need, as long as there is a room available for Eric.

Extra daytime input was offered (at no extra cost) but declined by me. It's enough to have people coming into your home in the morning and the evening.

My point here was that this is my home as well as Eric's..and at times I feel unable to relax in the very place that I need to be able to relax, because of the influx of carers and Eric's attitude towards them..which is often hostile and creates more difficulties for me. L understood and backed me up on that..it was duly noted.

Day Centres were mentioned again... and quickly ruled out. There is nothing locally that would meet Eric's needs.

Or that he would agree to attend.

Sadly if he would agree to that for even one day a week I would feel the benefit of it.

There is a unanimous agreement that physically Eric appears to be declining more rapidly than he is mentally.
I wasn't sure...when you live with it you just get on with it.

I've phoned the surgery thisafternoon and left a message for his GP..requesting a visit but not as a matter of urgency.

CPN has agreed to visit on Monday.

The OT has been alerted because Eric's mobility is worsening and the the shower room is no longer "meeting his needs".

I'll say no more.

It is now documented that I am struggling with caring.




Love xx

 

[Grannie G]

It sounds as if you`ve been able to move on gigi.
The SW and Senior from the Dementia Care Team are in no doubt of the difficulties you face and are prepared to offer the support you need now.
I hope this will be flexible , so when the time comes for more support to meet your needs, it will be available.

 

[burfordthecat]

Gigi

Sounds as though that was one "big" meeting today. I think that it is good that your "struggling to care" has been officially noted. It can not then be forgotten or denied in the future. I was pleased to read that respite was available for you, whenever you need it. That certainly gives you a safe bolt hole when needed.

Sending love and hugs to you and Eric

Carina x x

 

[connie]

Good that the meeting recognised the decline in Eric (as much as we never want to see/admit same).

It is now documented that I am struggling with caring.

That is equally important Gigi.

I do hope that the situation does ease soon, so that you can have som measure of rest in your own home.

Take care now.

 

[Nan2seven]

Dear Gigi,

"Two professionals .... both wanting to support." That sounds very good. Ditto funding is not an issue, and that it is now documented that you are struggling with caring. Respite care whenever you need it sounds brilliant, too. It sounds as though it has been a good meeting, Gigi, and you must be feeling relieved - and well supported.

Since Eric refuses to attend any sort of Day Centre, and also because there is nothing that would meet his needs locally, perhaps you should consider taking short respite breaks more often - a one or two day break, say, as opposed to a week. Just a thought ....

Love, Nan XXX

 

[BeckyJan]

Well Gigi I am agog with wonder at this supportive team behind you! I do feel there is a mass of support but sadly Eric will not necessarily comply! Thats the hard bit.

Thrilled to hear respite is available as you need it - I am sure you will take full advantage of it.

Its good you have recorded here the details of a very important meeting. I would like to see it as an example to other teams around the country

Hope you are not too drained this evening!
Love