I'm at my wits end!

[DMWalker]

I hadn't heard from anyone so this afternoon I just felt really down and rang the Alzheimer's society to see if they had any luck contacting the SW, 'sorry but I haven't had time' was the reply, 'I'll do it now'!

I seem to have had more offers of help when Dave was in the early stages and he didn't need it.

My next step was to ring the doctor's surgery to ask if they had a Community Matron, guess what? a recorded message greeted me saying the surgery had closed for the afternoon for training.

Oh well, there's always tomorrow but after that it is the dreaded weekend.

Love Dee x

 

[Jo1958]

Dee, hi
My heart goes out to you, but then that's probably as much help as a recorded message!
So sorry you seem to be in a mirrage area, I hope help happens tomorrow.
Kind regards, Jo

 

[DMWalker]

It's 10.15 Saturday night and Dave refuses to go to bed. Nothing has changed in his routine but he pushed me away when I tried to get him ready for bed. He was quite nasty.

He hallucinates a lot now, saw his reflection in the mirrored wardrobe and got angry. I have opened the wardrobe door so that he can't see himself. I've been up since 1.20am this morning because he was playing musical beds again, I tried to sleep on the sofa but I've had better nights!

If I don't get some sleep tonight I will be desperate.

Finally got hold of the SW last Thursday and she said both the application for a day centre and respite may go to the panel next Tuesday, seemingly they have had 'a big influx'. I feel really let down now, this has been going on since July.

Sorry to moan.

Love Dee

 

[Jo1958]

Oh Dee, my heart goes out to you.
I do hope that you get a settled night and some good sleep.
Sorry not to be of any help.
kind regards, Jo

 

[Helen33]

Hello Dee,

I hope that you do manage to get some rest. It was sleep deprivation that finished me off as a carer I think The mirrors reminded me of Alan when he failed to recognise it was him in the mirror and he thought there was someone else in the house I wonder whether it would help if you covered the mirrors for the time being? Windowlene? It might not look very nice but sleep is more important if it helps.

I'll keep everything crossed that your case does go to panel on Tuesday and that it is approved. Are you going to ring them beforehand just to make sure? I asked them what they were going to present at panel and we worked on the presentation together because they hadn't got the correct information

Love and a (HUG) and hang on in there x

 

[Grannie G]

Dee, tell them you`re heading for carer breakdown and then they`ll have two of you to look after.

 

[Bronwen]

hello Dee. we are all there for you..the sleep deprivation is one of the worst aspects of this horrible disease..I really feel for you and wish I lived next door..we could take it in turns to sleep, because when Trevor comes home that will be my worst nightmare again.

love
Bronwen x

 

[DMWalker]

Thanks all, what a brilliant site this is,just to know there are others out there who understand make it seem much more bearable.

I have got him into bed now, I said he looked tired and sleep would be good for him.

I tried to tell him earlier that I am full of cold and needed my bed but I may as well have told my dog! I really think he doesn't understand anything any more, poor chap.

I'm going to try to get some sleep myself now, hope I feel like this on Monday, it will urge me to ring the SW again.

Love Dee

 

[Helen33]

Goodnight Dee.

Love

 

[sleepless]

Just want to wish you a peaceful night, with sleep, and good luck with the application for day center & respite. If you don't get put forward as a priority there's something very wrong somewhere.
all the best,
sleepless.

 

[DMWalker]

Dave finally went to sleep and didn't get up until 5am.

He is so agitated today, he is non stop moving his hands about in the air, asking me questions which have no answers and crying.

He wants to go home, wants me to go outside and look for someone, it's just non stop, he hasn't even had 10 minutes nap.

I can't understand these big changes that are happening daily.

I am definitely going to ring the sw tomorrow, or should I be ringing the cpn?

Thanks for all your kind wishes.

Love Dee

 

[Jo1958]

Dee, hi
I'm so sorry that today is showing more agitation and is so very tiring and upsetting. I do hope you have a night's sleep tonight and all this action will tire Dave out.
I don't know who you should ring but I would try them both and see who can help first.
Sending love and support as you go through this awful stage, Jo

 

[Grannie G]

He wants to go home, wants me to go outside and look for someone,

This is how Dhiren was Dee but at least he slept and it was not constant, only during sundowning. But he went out to look and asked the neighbours to help him. It was as recently as last January.
I would ring the CPN first and then the SW if you don`t get through.
It is terrible for you.

 

[Sandy]

Hi Dee,

I would also agree with Sylvia that it would be best to contact the CPN or any member of the mental health team tomorrow (or even now if you feel that Dave's behaviour is dangerously manic).

I would even suggest that it's worth considering an admission to an assessment unit as his condition has worsened so much over the past few months.

Take care,

 

[sad nell]

Dee how i feel for you both, I see you are in west Yorkshire. our social workers were great, as were cpn, 100 % support and that bit extra, have you told them as it really is, no holding back, the support we recieved was second to none and I want that for you both, west yorks services have been good for us and it makes the difference between coping with AD and not,Please ring tomorrow and tell as it is, take care of your self love Pam

 

[DMWalker]

Hi All,

At last Dave is visiting a day centre for a few hours next Wednesday.

I rang the sw worker last week and finally managed to speak to her. She said it hadn't gone to panel as there was a big 'influx'. It would be going on Tuesday. I wasn't going to wait any longer and phoned first thing Wednesday, brilliant news, both the day centre and respite had been agreed.

Dave has been crying for half an hour this evening, he can't tell me what is wrong. He is wandering about the house wringing his hands non stop.

The commode arrived yesterday, I placed it near his bed and left a small light on as the nurse instructed. He got up at 1.15am and 4.15am. I guided him back to his own room both times, the second time I stood in a puddle at the side of the commode Alzheimer's and instruction don't work for Dave

At least I know a rest is looming.

Love Dee

 

[Grannie G]

At least I know a rest is looming.

Thank goodnees Dee. Not before time. xx

 

[Jo1958]

Dee, hi
Well done for getting so far with all your hard work, I'm so glad that there is a break on the horizon.
Take care of yourself, best wishes, Jo

 

[DMWalker]

Well after many phone calls Dave has at last started going to the day centre two days a week.

Yesterday I received a call from the SW saying she had found a care home for respite, I have to take him today for his initial visit.

He has just asked me what is happening today, I think I've made an awful mistake by saying we were going to look at somewhere for convalescing, he's very angry saying he isn't going anywhere. I'm really surprised at his reaction as he is so confused lately he doesn't usually react to anything.

Anyone had to deal with this? Any tips would be so appreciated.

Love Dee

 

[Grannie G]

Hello Dee

It never runs smoothly for you does it.

I would visit the home for respite by myself as long aas Dave can still be left safely. I`m not sure whether or not he still has memory but hope he will forget what you said.

My CPN told me he would help if Dhiren resisted. He came with me when Dhiren went into respite care and two members of from Mental Health Team came with when he went into permanent residential care.

Please do not discuss respite with him or give him notice. I know it sounds cruel and even disrespectful, but it`s a necessary means to an end and you need a break.

Love xx