Norrms

[Caring_Mind]

Rant away, Norrms.......I am ashamed to say that I started watching the programme and felt my blood pressure going up and up (seriously), so thought the best thing was to switch off! It's not shutting my mind to it - I accept it happens and it's an awful thing.
My son was on Respiridone for his schizophrenia, which is what it is supposed to be for! .....
Just letting you know that I care - wish there was more I could do. I go to visit Mum in the Residential Care place where she is in respite - getting to know and care for the ones who are in with her. As far as I know, they get looked after well and are not 'shut up' to make lives easier for Carers.
Gosh, now I'm rabbiting on!
I'd like to ask you a question, Norrms.......do you find that routine in the day helps you to understand what time it is, etc? My Mum seems to just sit in her chair all day, whereas when she was at home, she knew what day, time of day, etc, it was, with Carers coming and going. Now she doesn't seem to know what time of day it is or what she should be doing? She is so confused, it's heart breaking to watch.
(Sorry to hijack your thread, just wanted your opinion) thanks, Norrms...all the best to you and your family xx

[norrms]

Dementia UK congress
Bournemouth 2010
Hiya, well I managed to get back in one piece and what a wonderful time we had. I have so much to tell you and some very good news so here goes.

On stage in the main Auditorium were four speakers, two with Alzheimer’s and two carers, also there were Alistster Burns (professor) and Ruth who is a chairperson in The Alzheimer’s society.

After they had all spoken and we opened listen to some of the very exciting things that are happening they threw the floor open for questions, WELL, you can imagine who`s hand shot up straight away!!LOL. I asked the speakers as to why BUPA had spent all this money on their new Dementia care booklet without a single mention of the people under 65yrs of age who have this awful disease.

This was received with great interest and Professor Alistair Burns said definitely more should be done for the Younger early onset and would be looking into it. As that session ended and we were making our way to our own Auditorium when, as if by magic, Mr Dean Cowley, sales and marketing director from BUPA appeared by my side and assured me that the booklet in question which I reviewed in a very scathing but polite way was now being recalled, re- written and there will be an inclusion of the Younger early onset!! I asked to be forwarded a copy of course! I really now think that even though this may only a small victory towards getting recognition for the Younger early onset, it is a victory none the less and also a great victory for common sense i think LOL

Then it was onto our turn. First of all I would just like to say that when Elaine did her talk about the role of a carer and the difference between looking after someone as a job and doing it 24/7 looking after a loved one, you could have heard a pin drop, I am so proud of her.

Then it was me!!

I delivered my talk in my own way, just being myself and telling it how it really is. The response was very humbling and I talked to many people after the conference and made some very good friends and contacts.

All I would like to say is I am very very proud to have been there yesterday and so able to have been able to put my point of view from a sufferers point of view and the point of views for other people connected with this awful disease. I hope we did you proud, best wishes, Norrms and family xxxxxxxxxxx

[cotula]

We are proud of you too, norrms. Elaine too, of course!

[norrms]

Thank you my friend xxxxxxxxxxx

[norrms]

CHANGING
TIME`S
Well!! It’s been quite a week!! Travelling to Bournemouth for the Dementia Congress and one thing and another! I am sure I am much better when I’m kept busy, but just before we set off on our travels I had time to think about what is happening around me and how I feel I am changing, and make no mistake, I am changing within myself, which is confusing in itself, let alone for anybody else to understand but I will give it a try.
You know when sometimes you just feel out of sorts and just feel like you are coming down with something? Well, it’s like that but on a more personnel level. I blurted out something two days ago which not only came as a surprise to me but my whole family who were there at the time and I will not repeat it as it wasn’t very nice!!
I find myself wandering in my mind more often, and I keep remembering things that happened what only seemed like yesterday but in reality it was many years ago. I am more distracted now than I was and find it hard to concentrate at anything without a huge effort being made. Some will say we have had a lot on lately with our daughter going away and the conference but I think this is different. I just don’t feel as if I am myself anymore!!
I know this is probably hard to understand but it’s like my personality is ebbing away slowly and being replaced with a feeling of emptiness and loneliness which as you know is not like me. My sleeping pattern is not the same and my nighttimes are as bad as ever, if not worse. I seem to drift through the day some days and can’t even remember where or what I have done that morning. This is not all of the time, just some days, just drifting and never really connecting.
But when my days are of some clarity I see the world in my own “Happie Chappie Wayâ€

[norrms]

Frightened
Little
Boy

As I tell my tale of Alzheimer`s,
Through smiles and heartfelt joy,
When really, somewhere deep inside
I`m just a frightened little boy,
I’ve faced many things in my life,
Some things too hard to tell,
But Alzheimer`s and all it brings,
Makes my life, a living hell,
Every day a piece of me,
Is lost, forever gone,
It won’t give up I know,
Until memories I have none,
So when you see and hear me,
Chatting about my day,
My head rocking back with laughter,
And smiling all the way,
Please spare a thought of who`s inside,
Behind the warmth and joy,
Sitting there with head in hands,
Is just a frightened little boy

[beaglelady]

Carry on with the good work Norrms and the poems too.

I enjoy reading your posts,

Elaine xx

[norrms]

Thank you Elaine, i will try xxxxxxxxxxxxxxxx


Hiya , ive just come back from the Torbay Dementia Leadership group where i am happy to announce i was offered the "Chair persons "role and duly accepted as an honour to be working alongside other people who also have dementia.

I am also so happy to announce that a couple of ideas of having two support groups , one just for people with dementia and one a carers group which will be held at the same time at the same location but different rooms in tandem has just been verified and we start in early january (The 5th i think)
This will i hope create that "Net" that i have been talking about so we can catch anybody who has just been diagnosed and put them on the right path with good information and also peace of mind that they are not on their own. So it looks at the monent its going to be a great new year!!

We also have two other projects opening up in the new year and one is

"Services for Younger early onset sufferers"

Which as you know is so close to my heart so please "Watch this Space" for that one i might have some exciting news in the very near future about that one !!

And the other one is to provide a better service and more understanding of people who do not have carers or loved ones nearby and who need our help urgently, this one is top priority.

So here`s to a good new year and a good day today !!! best wishes, Norrms and family xxxxxxxxx

[norrms]

LOOKING TO THE
FUTURE

Hiya, I would just like to share with you the good news and the good feeling I woke up with this morning. Yesterday we had a visit from the Social worker from our local memory clinic about possible housing needs for the future and more support for my darling Elaine.

As a sufferer it was hard at first listening to Elaine and the social worker planning out my future care and possible end of life plans. The most important thing that came out of it was I and Elaine now have peace of mind knowing plans are made and arrangements for more support for Elaine is now in place and I meet my Community support worker tomorrow.

All this has been playing on my mind lately and as you all know I always have and always will put my family first and now I know that Elaine will now be getting more rest and more “Sheâ€

[norrms]

Hear
My
Cry’s
Voice`s fading, not through age,
Dementia building it`s sound proof cage,
Listening in but nothing out,
Unable to talk but able to shout,
Frustration runs through every bone,
Feeling so empty, always alone,
Hear me cry, silently so,
One day happy, then so low,
I`m still me, deep inside,
Nothing to fear, nothing to hide,
Unable to say what`s on my mind
To those I love, to one so kind,
Hear my cry`s, I’m still here
See my eyes fill with tears,
Until the day we meet again,
And walk among the sunny glen,
Know my heart is always yours,
Until the closing of life`s door`s

Best wishes, Norrms and family xxxxxxxxxxx