Good, bad and indifferent....

[Kate P]

Okay the good news (as far as good news goes these days!) is that mum's first afternoon with her carers went "okayish". Well I think that's damn good news - we thought it would be hell on toast so "okayish" is quite positive to my mind.

Tried to talk to the vicar again but didn't really get any where. However, dad told the carers not to come on Wednesday so the SW rang him to ask why not. He explained and she demanded that he give her the vicars telephone number which he did. Haven't heard what's come of that but fingers crossed she may succeed where I have failed.

We also finally got some news on Milly and her health issues (after the brain scan and things). She has intention (??) tremors - as far as we can estbalish so far (we go to another specialist in six weeks) they don't know what causes it, they can't cure it and all we can do is teach her how to manage with it. It won't get worse but nor is she likely to grow out of it. Once she goes to school they can provide her with equipment which will help her to combat it (I think the main problem will be writing because she'll have to fight against the tremors). They're also looking at whether physiotherpay could help. So it's not good news but nor is it as bad as it could have been.

Anyway, that's my day so far....!!

 

[Skye]

Hi Kate

Thanks for your news.

First, the most important one. Your little Milly is not going to get worse. That must make you so very thankful. Poor little Milly is going to have to live with her tremors, but with special help, it's amazing what kids learn to live with. And she's so young, who knows, someone may yet come up with a cure for her.

As for your mum, glad she was 'okayish' with her carers. As you say, it could have been so much worse.

And it's brilliant news that SW is going to talk to the vicar. Hopefully she'll make her see sense!

I think that's a pretty good start to your day!

Love,

 

[cariad]

Hi Kate,
Good news about Milly.At least you know that things aren't going to get worse.
As for your Mum, you have come so far! There was a time when you'd never have believed she'd tolerate a carer (or your Dad) for that matter. And if things went okayish, that's brilliant.
I've found, and joined, a truly amazing support forum dedicated to FTD and if you aren't a member already I'm sure you'd benefit. Thing is, I dont know if I am allowed to post link here. Is that allowed? Anyone?
I know that there are others on this site too caring for ftd loved ones who may be interested. Somethings with dementia are constant but sometimes FTD and other dementias are poles apart. If any one can enlighten me on whether I can post a link to the site here, I'Dd be very grateful.

Regards to you all, Cariad xx

 

[jenniferpa]

Cariad: I think provided the site is reputable there would be no problem. If you like you can PM me with the site details and I'll check.

Kate - it does seem a mixed bag of news. Good that there's a social worker who seems to "get" the issue. I'm sorry it's not 100% good news about Milly though, but as Hazel says: just because they can't fix (or explain) it now, doesn't mean that will always be the case.

How is your health?

 

[Grannie G]

Hell cariad,
I don`t see the harm in posting a link to a support forum for FTD. It is such a distressing condition, no-one would possibly want to deny anyone further support.

 

[Grannie G]

I`m sorry about Milly, Kate. It would be nice if she had something controllable. It is just more worry for you, but as you say, it could have been worse.

Your mother with a carer is good news indeed, also that the SW is prepared to make a stand.

Take care xx

 

[cariad]

Thankyou Sylvia xx

Here's the site for anyone who wishes to browse:
http://ftdsupportforum.com/

As I said before, there are lots and lots of similarities between the various dementias, but FTD is very, very different too in many ways and this site may benefit some people. I use both, regards, Cariad xx

 

[Mameeskye]

Hi Kate

I am so glad that the news about Milly was good. OK in the overall scheme of things we do want a perfect child, but I know that even with the small problem that my son ahs to overcome through some deafness on a day to day basis, they cope!

Glad that SW are on to the vicar. People just present too well at times. I know that some of the residents in Mum's home used to make me wonder why there were in there..but then their relatives said the same about Mum...unless you've been there...

Love to you all and hope that you are keeping OK

Mameeskye

 

[Kate P]

Thanks for the support and best wishes for Milly. As most of you say children are resilient and she doesn't really know anythings different because she only ever remembers how she is now. Easier I think than having to adjust later on.

Mum's having another try with the carers today so I'm hoping that goes well. She was terrible yesterday - she was just totally zoned out - she seemed to have no idea if people were talking to her, nor did she seem to care. She did come out of it for one second to tell me I looked fat and then went back into it again!!!! The only words she's spoken in weeks and that's what it was! Luckily, I'm at a point now were I can just laugh about it.

It's hard to know what's best - when mum's "zoned out" it's upsetting because I can't help but think she's declining so fast but then she is calm which makes her much easier to deal with.

Thanks for the link Bernie - I'll have a look and see if I can get my dad on there - I never give up!!