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

[Grannie G]

Gigi I seem to remember you getting to a stage similar to this before your first respite.
It is only a couple of weeks since your last respite so it really seems too much is being asked of you.
The breaks you have during respite are not carrying you through.
Perhaps the time has come for a permanent respite.
Now I know the powers that be seem to feel Eric still has mental capacity.
But how do they feel about your mental and physical health. Aren`t you part of the equation too.

 

[dillydaydream]

Dear Gigi

I know just how you feel - I'm sitting here at the computer in tears as Mum has just had another nasty outburst - demanding money to go home, is fed up to the teeth living here on her own, hasn't seen me in weeks, needs her lumch NOW, hasn't been anywhere for months etc etc etc. I just want somebody to whisk her away immediately into respite or anywhere else other than living with me. Nine years is enough!!

Although it's obviously very different caring for a parent than a husband, resentment levels in both reach such a pitch that it's impossible to give the care that is required.

I really hope that your GP is able to help tomorrow and give you some space for you

Carolyn
xx

 

[muse]

gigi - I can only say "snap" again. I've never had to lie so much in all my life, not even as a teenager. And your poem expresses everything I feel. I feel shadowed, not trusted. I know it's the illness, but it hurts when we try so hard to do what's right for them.
More big hugs
Kathy

 

[sad nell]

Gigi, let the tears flow, not good for eye bags tomorrow i know, but sometimes you just have to let the pain out. the total lack of any empathy from our loved ones, is just too much to bare.Lets hope your GP will be supportive tomorrow , what about printing off your last post for him to read, or would you not be comfortable with that, sending my love and understanding , Pam

 

[shelagh]

Dear Gigi - no way to help- except to hope the care and gratitude that members of TP have for you will somehow be a comfort.
With love
Shelagh

 

[DeborahBlythe]

Dear Gigi, I'm really sorry that you are feeling so low.

If you consider how much time you devote to Eric,(and other carers on TP devote to their respective loved ones) day by day, week by week, month by month, do you wonder that you are feeling at the end of your tether? If Gigi didn't exist, would any system step in and replicate Gigi? One person caring 24/7 7 days a week? All year?

Of course they wouldn't, and few people would be so desperate that they would take on such an intense role hour after hour. It wouldn't be acceptable in employment terms to expect one person to care so relentlessly.

Think of yourself separately from Eric. If Eric didn't exist, would you undertake a role which demanded so much, tied you down so much and offered so little in the way of reasonable breaks and holidays?

Also if you were caring for A.N. Other rather than your husband, you wouldn't feel the awful pain whenever you were mistaken for someone else. You would laugh it off and see it as a quirk or a joke. And when the questions irked you, you would be able to look at your watch and think. 'Oh well, I'll be off in an hour' or whatever.

It's the emotional strain on top of the relentness nature of dmentia which is pulling you down, I think, and I hope that some solid solutions are on the horizon very soon for you. I hope tomorrow goes well with the GP.

Sending you love and hugs.
xx

 

[Canadian Joanne]

Dear Gigi,
You do sound like you're at the end of your rope. Please be completely open and frank tomorrow.

I am bemused about Eric having 'some' mental capacity. What would they do with someone with Eric's supposed mental capacity if the carer ran away or died? I would ask them. I become so frustrated with bureaucracy that I'm grateful our path through it was quite smooth. The fact that my mother was violent and physically attacking people helped.

 

[lesmisralbles]

Hello gigi

I send my love.
Not much, but XXXX

Barb XX

 

[Winnie Kjaer]

I too want you to know how sorry I am you are feeling like this and send you lots of ((((((hugs))))))

I honestly don't know what else to say but hope the doctor is supportive tomorrow. Try to have a peaceful night so you feel up to really talking tomorrow.

 

[nellbelles]

Gigi

I want respite, Tom says he is fine by himself. Somehow I have to find the strength to prevent him staying here by himself and to convince his psychiatrist that regardless of what he tells him it is not like he says.

I don't know how to do this, I just hope you can and then help me. What a mess this is.

Sorry I posted this before I had read it properly, I hope I have not offended you by jumping in like this

 

[Grannie G]

Write to Tom`s psychiatrist Helen and tell it like it really is. xx

 

[muse]

I agree with Canadian Joanne. The "system" keeps telling us that the dementia sufferer has a choice, needs to agree to any solutions. On the other hand, carers have the same right. We can't be forced to care. In the extreme, we could just decide to run way (or, in all our stress, we might walk under a bus and die). What would happen then? The authorities would have to take over. I'm at the stage where I'm trying to get through to the authorities that I might just choose the former and run asay. It's not my preferred method. but one that seems to get results.
Good luck and big hugs
Kathy

 

[dillydaydream]

Escape Gang!

Hi Muse
I'm coming with you!
Carolyn
xx

 

[susiesue]

Hello Gigi

I have only just caught up with your thread this morning and I am so sorry you are feeling so low - I do sympathise.

I hope your GP visit helps and that you can arrange some urgently needed respite.

I don't understand this system as in my case there is no way David could possibly live alone and yet when the SW visited he told me that there is no way he is ready for residential care as he can still walk - what planet do these people come from - obviously they have never lived with someone with dementia.

Sending you love and (((HUGS)))

 

[burfordthecat]

Hi Gigi

Just catching up with this thread

You can't and should not be expected to carry on feeling like this. When the GP calls make sure that YOUR needs are uppermost in your mind and that you get some immediate help. Oh, I can so feel for you, this having to fight the system tooth and nail to get something sorted is exhausting. I went through exactly the same hoops with "mental capacity or not?" with my dad and it is as frustrating as one of those circular dementia conversations. Just hang on in there. Something has to change for you soon.

Love to both you and Eric

Carina x x

Just an idea - why don't you have an overnight bag packed ready. Give SS/GP the choice, either Eric goes into emergency respite.....or you walk out the door. Probably not the right thing to do but I believe then they would sit up and take notice.

 

[dillydaydream]

Hi Sue

Exactly what I was told!!! I think they've been given the wrong manual! They seem to think that dementia care homes are just for the physically frail ... I can feel my blood pressure mounting as I type. I think I'll soon be marching up and down outside Social Services with very rude placards!

Carolyn
xx

 

[Grannie G]

Good morning gigi

I hope you had a good night`s sleep and are ready to face your GP today with some questions.

However good your support has been it has not been the support you need. There should be no way you should have been allowed to get to this state. You are a voluntary carer and your role, for whatever reason , has taken more than it`s toll.

Whatever respite you have will still return you to where you are now, and if it is to be avoided, perhaps very difficult decisions need to be made.

 

[Skye]

Whatever respite you have will still return you to where you are now, and if it is to be avoided, perhaps very difficult decisions need to be made.

I agree with that, gigi. You had a wonderful time on your last respite, but how long did the effects last? And the period of effectiveness will get shorter and shorter, the more exhausted you get.

I'd say you need emergency respite today, to give you time to sort out something permanent.

I'll be thinking of you, and willing you on.

Love,

 

[Helen33]

Dear Gigi,

It sounds like burnout Gigi and this has to be taken seriously.
You got away and managed to find yourself for a little while and since returning it is like re-discovering that the esential parts of you are not required. Eric has specific requirements which are an expression of Alzheimers disease. I wonder if you feel that you are drowning in it and losing your own identity which is much bigger than a 'carer for Eric'?

I do hope you find ways and means to express yourself Gigi and to spread your own wings.

Lots of love and anxiously waiting to hear what today brings for you?

 

[gigi]

Sorry folks but I'm feeling bleak today.

Our situation was going through my mind all night, searching for an answer. And I couldn't find one....

We've got a day of it. CPN is coming about 3 (unless she cancels again)

GP is coming early evening.

All I can do is tell them how it is. In my heart I wouldn't want Eric to go into permanent care. In my heart I don't know how much longer I can tolerate this life here at home with him.

The carer has just turned up. I'm off to have my bath while she sorts Eric out!

Love xx