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

[Izzy]

Keeping my fingers crossed for you, Gigi. Izzy x

 

[DeborahBlythe]

I'm waiting with baited breath to hear how things have gone, Gigi. If you haven't done the hoovering, don't worry. It will still be there tomorrow unless the fairies come and do it overnight..

xx

 

[gigi]

every time I sit down and open the Sunday paper and get engrossed in an article, I turn the page to find someone has cut out the next bit

..Oh Sue....

I've got to try to get this down before I forget...(how Sylvia did it I'll never know..)

Eric is home and settled in the (clean and dust free )lounge with a cup of tea and the inevitable cigarette.

It's not at all what I expected...

He thinks he's been away for weeks..and that I was with him until thismorning.
He is worried about our 2 daughters..why they're not here.
He doesn't know where he's been but knows he had an "accident in the toilet" and believes a doctor came to help him..she laughed about it with him and made him feel better.
He had lovely food but can't remember what it was.
He says he went outside to look for me but someone asked him to come back inside because it was cold.
He is worried because he thinks I've been there with him and they haven't brought my things home...only his.

I've phoned the care home..I told Eric I was going to do this ..he said.."You ask them how long I've been there and they'll tell you it's been longer than a week"

OK ..CH version...

Eric settled really well. Enjoyed his food.

He did have an "accident" with his bowels thisafternoon but a carer sorted him out.

Towards evening he became increasingly concerned that I should be coming to fetch him home and wanted to get out. They let him out of the doors under supervision..and he was easily persuaded to come back in as it was so cold..and they kept him inside until the taxi came to pick him up.

Stupid me forgot to mention that Eric does seem to "sundown" from about 5 onwards these days..so I think that's what happened.

He's home but not settled. I don't know that there's much else I can do to reassure him. I've hugged him and kissed him and told him I love him and he's safe at home..but he doesn't understand.

Tea, cigarettes and Poirot on TV may have the desired effect.

I've got a ready meal in the oven, and some dirty washing to deal with...

And probably a lot more questions to face before bed-time.

Love xx

 

[Izzy]

Wow - what a lot to think about. At least it seems as if he was quite settled. It must be a bit like treading on eggshells, not knowing what is coming next. We're watching Poirot too - we watch Poirot every night as it's mum's favourite! We record them and she has the DVDs. Thank goodness for the laptop!!

Hope the night is settled for you.

Izzy x

 

[Grannie G]

Phew!
I don`t really know what to make of that gigi. Obviously a lot of confusion but as Eric hasn`t been out of the house since your last respite I suppose it`s to be expected.
But he sounds as if he was quite animated when he came home so we now wait with baited breath to see how the rest of the evening pans out.

 

[susiesue]

Hope you have a peaceful night Gigi!

Love

 

[gigi]

Eventually I had to phone Australia....it was 3.30 in the morning there...

His daughter spoke to him...and he spoke about me as her mum. She told him she was well, happy and was married with a family..and was a "certain age" now..he didn't believe her either.

The carer has been in and as luck would have it she was one that has been around for a while. She took over, has persuaded Eric to wee into the bottle while she was there with him. And put him straight to bed.

He's fast asleep now. I've sat with him a while. Held his hand, talked to him and tried to distract him from what's happened today..and reality, I suppose.

I've made him comfortable, stroked his head, and kissed him goodnight.

Now I feel dreadful.

I've had such a free, lovely day. For Eric it's meant increased confusion and anxiety.

Love xx

 

[jenniferpa]

Look at it this way - have you not had days with this level of confusion when he's been with you all day? And could you have been as sympathetic as you have been if you hadn't had the rest? And even if he is rather more confused tonight than he has been, you hopefully have the strength to manage for another week.

The other thing to consider is: when he is finally in full time care he may well be less confused - it's the change in routine that is problematic.

 

[nellbelles]

I've had such a free, lovely day. For Eric it's meant increased confusion and anxiety.

Actually I doubt that Eric has experienced increased confusion or anxiety..

JUST DIFFERENT

Don't beat yourself up over what you cannot change, just change what you can, to make life better for BOTH of you

 

[Skye]

Gigi, I'm sorry you've had to deal with all this increased confusion, it must have wiped out a lot of the benefit of your lovely day.

I think you should continue to push for permanent care, using this experience as an example. The change in setting is more distressing for Eric than permanent care would be, because he's never going to get a chance to settle.

I'm glad you had your lovely, peaceful day, though.

Love,

 

[DeborahBlythe]

I've made him comfortable, stroked his head, and kissed him goodnight.

Now I feel dreadful.

I've had such a free, lovely day. For Eric it's meant increased confusion and anxiety.

Love xx

Oh Gigi, don't feel like that! It sounds as if Eric's day was pretty good.. the accident could have happened anywhere and the carer ( i.e you) might not have been as smiley as the 'doctor' who helped him because you would or might have found it more stressful.
So you had a good day? Excellent. I wish you many more of them. And Eric had your love and attention when he returned because you were rested. Also excellent.

Sending you hugs and good wishes for the start of the new week.xx

 

[Lynne]

Gigi, I don't think Eric's day was full of "increased confusion & anxiety", although they obviously got the benefit of sundowning (which you have every day at home anyway).

Even the "accident in the toilet" seems to have been accepted by Eric as just one of those things - although I acknowledge it did stick in his mind, whereas the lunch menu (for instance) didn't.

Will you be able to get a 'report' of his day & behaviour, from his daycare helpers each weekend, to add to your own records?

Just hoping that my forecast about Eric's mood on his return home will be as inaccurate as my prediction about having problems with him this morning....
I'm pretty sure Eric will return very tired and vowing "never to go to that place again". I'm dreading it...

I don't think this forecast has come true, has it? I'll be interested to learn what Eric remembers about Sunday after a night's sleep - and what time he woke you up this morning

And please, PLEASE, do not "feel dreadful" , you know that's the guilt-monster on your back.
You NEEDED your day off, it enabled you to talk patiently to Eric when he got home, get him back into home routines & settle down to sleep after his busy day.

 

[gigi]

I'm a bit flat today.

The "toilet" problem continues...it started on Saturday.

Eric doesn't seem to know when he needs to "go"...so regular reminding is necessary..except when he gets there he doesn't seem to know what to do either..and is using his hands and the towels.

I'm just hoping that this is a result of the extra input because of his recent constipation.

He's been quietly confused today...when he's been awake.

I'd agree that the change in routine yesterday brought on the extra confusion.

Early thismorning he was worried about a suitcase he'd left somewhere..for now the whole of yesterday has gone.

I feel like a total mess...

I try to tell myself to be stronger..it can work for a while.

The "up and down" of this life has got me beat. I'm annoyed with myself because I expected more of me.

Love xx

 

[TinaT]

I'm annoyed with myself because I expected more of me.

I think that is the worst thing we could ever say to ourselves. It shifts the whole perspective onto ourselves as if it is our fault and we could do better. We can't Gigi! We can't and I would like to meet the person who can!

We do more than our best, we do the very best we can.

xxTinaT

 

[BeckyJan]

because I expected more of me.

Not sure how you can expect to do more - that is expecting to do the impossible.

Somewhere in a 'stage progression' factsheet it states that at a certain point 'dementia takes over the person' - the 'person is no longer in control'. You are now at a point where neither Eric or YOU can control the situation.

The only thing you can do is to allow the next bit to happen. Eric is heading slowly (? quickly) towards permanent care. I think the uncertainty of 'when' is causing much anxiety and, sadly, we carers, have to endure this awful stage.

Thank God you are getting respite. I hope you have plenty booked in so that you can focus on that.
Love

 

[Skye]

I think that is the worst thing we could ever say to ourselves. It shifts the whole perspective onto ourselves as if it is our fault and we could do better. We can't Gigi! We can't and I would like to meet the person who can!

We do more than our best, we do the very best we can.

Very well said, Tina.

How on earth could you have expected more of yourself, gigi? You've performed miracles coping as you have, with so little sleep. You should be proud of yourself.

I remember the stage of using hands and towels, then touching walls and doors! It's a nightmare, much harder than total incontinence. You have my sympathy.

Love,

 

[connie]

Gigi, please be as kind to yourself as you are to Eric.

No one could do more, so please cut yourself some slack.

Thinking of you both.

 

[susiesue]

Gigi I do sympathise - David frequently uses his hands and towels when toileting - he even did it at my mother's when she collected him from the Day Centre He no longer understands his toileting functions and is always surprised when he finds something in the toilet - he doesn't seem to know how it got there

Stop beating yourself up! - no-one could have done more than you have for Eric - I don't know how you have managed.

I agree with Jan that Eric, and my David, are no longer in control and if they aren't in control how on earth can we be able to care for them.

Sending you love and hugs

 

[lesmisralbles]

A poo is a poo, we all do one.

Cut yourself some slack XX
Meant with love
Barb X

 

[Helen33]

Eric doesn't seem to know when he needs to "go"...so regular reminding is necessary..except when he gets there he doesn't seem to know what to do either..and is using his hands and the towels.

And recently someone said Eric was able to live by himself because he had capacity

One of the things that kept me going with issues around caring for Alan was that the professionals really listened and respected my experience and realised that there was no way this man could possibly have the life that he had without me. I knew it and they knew it - Alan did not know it and he didn't need to know it. If I imagine the professionals not knowing it either and me having to keep working hard at persuading them - then I would consider that to be a nightmarish place and I would be most annoyed at having to spend my energies in this way when they are needed 100%+ just to cope with day and night without all this extra work and stress.

I'm annoyed with myself because I expected more of me.

Is it that you expect more of you or are you being told in many ways by those there to support you, that they expect more of you???

Love