Sorry - another question!

[Skye]

Westie, well done for getting that emergency appointment. It always helps when someone takes notice, doesn't it?

I can understand you being upset at the thought of Peter having to go back for re-assessment, but it sounds as if you do need some help. You shouldn't have to be a shaking, quivering mess!

Hopefully the consultant will come up with something positive tomorrow. Let us know.

Love,

 

[Margarita]

Westie, well done

Yes I 2nd that xx

 

[Nell]

Thanks Westie.

Please let us know how you and Peter get on with the consultant's registrar. Isnt it hard when the thing that is best for them is the thing they hate so much?? Talk about being between a rock and a hard place!! - my heart goes out to you.

 

[Westie]

Update after meeting

Meeting went much as I thought it would. Peter put on the performance of a lifetime and the registrar was delighted at 'how well he is doing. Look how well he has sat still for 45 minutes?'

She spoke to him about driving - again - and Peter looked very sorry for himself, apologised and promised not to do it again. I've heard it so many times I no longer believe him but she was completely taken in.

I wonder sometimes what they learn in all their years of training!!!!

His dose of Haloperidol has been doubled to see if that will decrease agitation and help him sleep. Aricept is going to be gradually withdrawn as she doesn't think it is helping. I haven't noticed it helping either and I know that there is no evidence to show it is helpful in cases of FTD.

We are to go back in 4 weeks and meanwhile it was suggested I take him to the gym and swimming pool on a daily basis to burn off his energy. I pointed out that I just don't have the time to fit that in.

That is the main problem. If I was free to entertain and look after Peter 24 hours a day, I'm sure he would be happier and more settled. But I just can't do it with work and children commitments. P is on long waiting list for another day at a care centre for younger people.

The CPN is due to visit in half an hour and Peter has stormed off in a rage as he doesn't want to see her! He demanded I take him out somewhere so we weren't here when she arrived and when I refused he tried to find the car keys (again) to take himself out. So much for his promises. I know they mean nothing and maybe this will demonstrate that. So I wait and see if he returns in time to talk to CPN or not.

 

[cris]

I find it is better not to say anything, ref who is coming, or where we may go.
Surprisingly to say we are going "here" or "someone" is coming around can be remembered. Best to told at the last minute. For me anyway.
cris

 

[JMW]

Gerrie Ley, i do apologise if my post seemed rude to you at all, it was not my intention. I am sure that feelings are similar whether it's your parents or your spouse but i can only begin to imagine if it is your spouse going through this. Please accept my apology and yes (hopefully it won't happen) i will look after my spouse as you quite rightly say but we have already spoken about this in view of my mother's situation and have agreed that there would come a day when we possibly couldn't look after that person at home. That is our view and i fully appreciate and admire your view too. No hard feelings.

JMW

 

[katherine]

Kate
I'm a kate too and have two small children - one is 2, the other 9 months. my mum has alzheimers and lives alone. She is getting a lot worse now - a friend used to care for her a lot but now we have just got 24/7 care for her at home from the social services. We fought like mad to get it. It's been very difficult with my kiddies. Not at first - when i just had my little boy we would spend a lot of time with mum gardening and going out etc - now that i have two children and mum is so much worse i won't be on my own with her and the two children - it's too stressful and she's been through some aggressive angry times which would be impossible to manage when i have the kids. So i see her on my own when i have to look after her, and i bring the kids when there's a carer around or when my husband is with me.
You do have to kep a close eye on things - like hot drinks and scissrs and things. And now mum can't even really hold my baby daughter because she just sort of puts her down on tables and things but she can hold her if she's sitting down and someone else is there.
For a while my little boy and her had a weird relationship and i worried that it might effect my son - as mum kept telling hm off and being as bit mean to him, but that has passed and he seems to have forgotten.
In the end of the day, i love my mum to bits but i suppose my no.1 priority is to keep my children safe. But it is possible with mum being there too.
Kate x

 

[jackie1]

Westie,
Did Peter come back in time for the CPN. I really hope so and that they were able to see what you are currently having to face.

I'm so glad that you have a Day Centre for younger people, even though there is a long waiting list. There is nothing here at all for John to attend. We are currently looking into Home Based Support.

Take care.

Jackie
x

 

[Westie]

Jackie,

Yes, Peter returned about half hour later with our CPN. In his haste to get away (on foot!!) he virtually bumped into her as she was walking up our road!! She walked with him for a while to let him calm down and then brought him home.

He was then as meek as a lamb - looked as if all the fight had been knocked out of him. Sat and talked to her for a while and they both pottered around the garden.

She can see the state he winds himself up into sometimes and was astonished at the speed he walked - real power walking as if driven on. She seemed genuinely sad and upset that she couldn't offer any constructive help. Feels her hands are tied at every turn as nowhere for young people to go to be active. The day centre has been asked to treat Peter as a priority but I expect all others are a priority too.

Am amazed you don't have ANY facilities in your area. I thought we were being badly let down but I treasure the 1 day a week I do have. P loves the routine there and joins in word games, quizzes etc. enthusiastically. Proudly shows me any art work he has done. I am pleased he is happy there but breaks my heart to see him reduced to this. Wasn't long ago he had huge work responsibilities and a team of people who looked to him for help and advice. That's what he misses so much and constantly talks about.

How will the home based support work? Is that a private arrangement? What will they actually do with John?

M-A

 

[jackie1]

Hi M-A,

I'm so glad that the CPN got to see Peter and that you're down as a priority.

I know it frustrates me so much that there are no facilities. I actually feel really bad for the social worker and the other support workers as you can see that they feel awful that there is nothing to offer us.

Still waiting to find out what can be offered under home care but as we have some savings and John took his occupational pension early will will have to finance it ourselves. I think they will be able to offer company for John and maybe take him out. I'll let you know.

Love
Jackie
x