I'm at my wits end!

[miss cool]

HI dee. i am sorry if i upset you but we are all differant. i was looking at it in my place. i nursed my husbond to the last breath he took, only becouse he was the most speshell man i had ever met. kind loveing gentle, as you now with the illness your looks dont chang much so regardless of what came out of his mouth i could still see the old person he was. i was the lucky one so in your case it must be hard. if we never got on it may of been a difforent story. but now i got it i feel life isent fare, but no one told me ever life was fare. it takes me back to if you dont wont to look after me dont, it is that simple. i hope i havent gone on to long sorry if i have.

love miss cool. xxxxxxxx

 

[piedwarbler]

Just read this thread all through, Dee you are a saint! I so feel for you, I have no problems compared to you!

Scatty Pam can I say if you contact Tesco and give them the voucher codes for the expired vouchers, they may send you some new ones. I lost some once and when I proved I had not spent them they re issued them. £90 is £90! You could buy a new pair of shoes or go out for a meal, and really cheer yourself up!

 

[Grannie G]

I know what you will say, but when he is sat quietly the guilt sets in

It`s not for me to say, Dee.

We all know when the time is right, or think we know. For some it`s too late to avoid a crisis, others time it right and others feel it was premature and feel guilt for the rest of their lives.

I just wish you well Dee and hope to goodness you get more help soon.

Love xx

 

[DMWalker]

Saturday again, it always seems worse at the weekends!!!!

CPN came on Thursday, she took more details of Dave's behaviour and said she would fax it to SW who is putting it to 'the panel' next Tuesday for respite.

There has been no mention of day care so she was putting a post note on the bottom of the fax to remind SW.

Dave at present is at his worse, pacing up and down, moving everything in sight. He says we have to get out as he's not going to the Black Sea, (something that was on TV this morning I suppose). He doesn't speak just whispers as if someone is listening. This has gone on for three hours now. I have made him a cup of tea and asked him to sit down, he's actually said he is on edge, he doesn't want to see me in the sea. I said there is no sea in Leeds, he says it doesn't matter. He looks exhausted, but will only sit at the dining table, he won't sit in his armchair he says they will get him.

I wonder why this gets to me more at the weekend, probably because I know no-one with any authority will be ringing. Roll on Monday.

Love Dee

 

[Jo1958]

Oh Dee, sending you a ((Hug)) and support, I do hope you have someone visiting to break the tension this weekend.
Please take care of yourself, kind regards, Jo

 

[Grannie G]

Hello Dee

Is there a mental health team involved with Dave? Is there anyone you can contact, even emergency social services for advice.

Dave sounds very frightened and I fear for his mental health and for your health too. Tuesday is too long to be expected to manage this behaviour alone.

Sometimes you need to cry for help, loudly.

 

[sad nell]

Dee thinking of you and Dave and hoping that he is having a calmer afternoon, I remember the constant pacing and moving of anything that would, being the hardest thing to cope with, because it is relentless, Do you have a safe garden he could pace in, that was the only way i survived this stage, by having large locked gates and letting Trev walk for hours on end back and forth, with out me attempting to get him to sit down , which only made matters worse. take care, love Pam

 

[DMWalker]

Dave is under a mental health team but I have never tried to ring them at the weekend.

I took him out for a couple of hours at lunch time, he still managed to wander away twice then blamed me for leaving him

I thought it would tire him out but it hasn't, he's still pacing. I will manage to sit him down for his dinner and then it will start again. Thankfully I am much calmer now myself, broken sleep and early rising isn't a good start is it?

We haven't seen anyone today, typically my daughter called while we were out.

Thank you all for your kind comments and advice, it is so much appreciated.

Love Dee x

 

[Grannie G]

I`d contact the mental health team first thing Monday Dee. Ours was wonderful with Dhiren. Two of the team actually accompanied me when he went into residential care, to make sure I was supported.

 

[zoet]

Hi Dee. I dont often post here any more since my dad passed away, but I read of your situation and simply had to say something, because what you are going through reminds me so much of me and dad.

I think you are going to have to get a little more demanding Dee. I cant say for sure, but I suspect the SW isnt getting the true picture about how exhausted you are with all this. I also suspect that if you dont get some proper help very soon you are going to experience carer burnout- not good for you or hubby. I will tell you what I did at this point and maybe you could do the same.

After about two weeks of the sorts of behaviours you are now coping with, I quite suddenly hit rock bottom. In desperation I phoned the EMERGENCY DUTY TEAM at social services and told them I COULD NOT COPE ONE MINUTE LONGER. I told them that if someone did not help me within 24 hours I would leave dad to his own devices. That evening dad was taken to a local care home for a weeks respite. During that week I arranged a review and medication from the mental health team; they assessed dad in the home. I arranged his continence aids, an OT assessment, Telecare, and Daycare for 4 days a week. I did this by threatening not to have dad back, to ring the papers, to talk to my MP, basically anything that would get what I needed for me to look after dad.

Daycare and Crossroads (brilliant services), and carers from an agency (not so brilliant) took two weeks to arrange. Disability Solutions came for finance assessment.
With a sigh of relief, a new found energy, and a great big dollop of hope, I welcomed dad home.
Now dont get me wrong, life was still hard at times, but gosh it was so much LESS hard than before. the key is to be FIRM, CLEAR, and ASSERTIVE in a polite but insistent manner.

You NEED a break and some REAL and CONSISTENT help Dee. Im truly sorry if my post sounds bossy, but I can see where you are heading, how the story ends so to speak, and I dont want you to ruin your own health coping like this. Good luck with everything and remember, if you dont ask you dont get. xxx

 

[Bronwen]

Hi Dee..I can't believe you have been left with such little support..I agree with previous advice, you must get help soon and be more assertive, which is so hard when you are drained of energy..one would hope the CPN and SW would recognise you need much more help NOW.

I do notice in the hospital,where Trevor is, that so many of the patients just walk up and down the corridors all day, go in and out of all the bedrooms...but then my Trevor took down one of the curtains in the corridor and put in my bag to take home!! He also produced a mars bar from his pocket and i didn't bring it in for him!!

Please keep us updated and I do hope you get practical help soon, you really do need it. try and rest when you can, which I know is difficult..you have to be in this situation to know don'tyou?

love
Bronwen x

 

[DMWalker]

Yes you do have to be in this situation to really know all the mixed emotions you go through.

Dave has only been this bad since about June/July, he has deteriorated very fast. When I read some posts I feel that I am giving in too easy.

He lost his temper with me a short while ago, I was trying to guide him to the toilet and he snapped at me when I tried to undress him, I told him to get on with it and walked away, I went downstairs. I think he managed it himself. He is still very agitated.

He's now sat at the table next to me rubbing a table mat backwards and forwards so fast that I think we will soon see smoke,

I don't know what's going on in his mind, I do wish I could help calm him down but he doesn't understand anything I say. The CPN said she will ask the consultant to consider some medication, does anyone know what this might be?

I will post next time I hear from someone.

Thank you all for being there when I need you.

Love Dee x

 

[miss cool]

HI Dee just to say i send lots of love, massive hugs, and a bundle of strength for you to do the best as i now you allways do.

love miss cool. xxxxxxxx

 

[DMWalker]

No news as yet regarding the SW or CPN.

The sitter came yesterday evening so I could go to the monthly Alzheimer's meeting. We had a talk by a Community Matron, what a wonderful job she does visiting patients and carers of long standing illnesses, I am going to ask our surgery if they have one.

One of the support workers at the AD meeting said she would contact the SW today to ask why it is taking so long for a place in a day centre or respite for Dave, I haven't heard anything as yet.

Yesterday Dave went missing, I rang round the family but no one had seen him, I finally rang the police, within no time five police officers called round for a photo and general information, then I heard the helicopter overhead. After another hour a traffic car found him and two more officers brought him home. He was tired but it didn't seem to phase him at all. They were so good and said they preferred we contact them early so that they have a good idea that the missing person would be nearer home. Today he can't remember the incident.

I will let you all know when I hear something, I keep saying that but surely it will happen one day

Love Dee x

 

[Helen33]

Hello Dee,

Oh my goodness, it sounds like you have all on. Thank goodness the police are kind and cooperative and that Dave was brought home without mishap.

Love and a (HUG)

 

[Grannie G]

Hello Dee

Your post took me back to when Dhiren was missing for two hours. I phoned the police and he was sighted a couple of miles away by a passer by who phoned the police on his mobile. But before the police got to him he was home.
He was exhausted. he had got lost and couldn`t remember how o get home.
I`m glad Dave is safe and hope he doesn`t make a habit of going walkabout. It`s too worrying for you.
Love xx

 

[lin1]

Hi
Ive just re read your thread and my heart is breaking for you.
I think you should start getting very assertive, you are being badly let down
I do know how worn out you are . Am wondering if you see your gp n explaine whats happening and how exhausted you are , if gp can help get things moving

 

[Bronwen]

Hi Dee..I do hope you have now got the support of the mental health team. You can't do this on your own.
Oh God it is so hard and I feel so much for you.

Trevor is now on Haliperidol at the assessment ward in hospital, which has calmed him down but then he sleeps a lot..the words "chemical cosh" spring to mind, but the constant pacing, moving things, questions etc. can be so tiring..I don't know which is worse, but he obviously can't stay on this drug for very long because of side effects.

My very best wishes to you

love
Bronwen x

 

[Nebiroth]

The sedating effect of Haloperidol tends to be reduced over time because people build a tolerance.

Also, sometimes the starting doses can be quite high on first admission because it's the only way to get patients into a well enough, I hesitate to use the word, controlled state to start assessing them.

 

[sad nell]

Dee i so understand this phase, it was truly the most difficult stage, I called police to find Trev so often, they found him walking down the centre of a dual carriage way on one occasion. I would be very wary of the use of haloperidol, the side effects can be horrendous, I fought hard to get Trev taken of it. if it is prescribed watch out for head becoming bent on chest, as it can become permenantly so.Mementine worked by far the best at this stage, combined with aricept, calmed my Trev better and did not sedate. hope you can get some help soon,the moving of things drove me to distraction, do not know why, but it was the time I felt I had less tolerance to this illness, even though I knew he could not help it, I must admit to shouting at him to leave things alone in not a very nice tone of voice, which did not help at all, but suppose released my stress levels, we are only human so do not feel bad about how you feel sometimes, I no longer beat myself up because we are doing our best in very difficult situations and think you should print off your post and show to cpn / social worker and say unless they want a crisis on their hands to get you both some help now, My love to you both Pam