What's it all about


Registered User
Aug 3, 2006
There I am getting on minding my own business last week, when I receive two phone calls. It must have been because I'd phoned the Community Nurse to enquire about what would happen should I become very ill or break a leg. I'd had a bad cold about a month earlier, which got me thinking along those lines.
I was advised I might try contacting Carers' Support. They'd provide someone to sit with my wife, while I made my way to the GP. So nothing's changed, I drew her a picture: "So I get someone in while I hop along on my good leg to the surgery!" I then asked about the advert about the flu Jab: "I know that the over 65's are entitled to it, what about my wife and I, we're over 70 and with me over 76 with one foot in the grave, suppose it'd be a waste of time and money?" She'd never met us, promised to get around to us. She made it two weeks later with a jab for my wife, she'd call back with my jab another time!
The second call was from a CPN asking if it would be OK for her and another call
and speak to me. Last week her, and I think a woman from SS, arrived at the door:
"Hello I'm your CPN and this is Cath, do you remember me?" "NO, if we met it will have been years ago." "Yes it was".
They had come to arrange a contingency plan in the event of my becoming ill/injured.
My question,where have these people been for the past four years and eight months, since I removed my wife from a NH? You may recall from earlier posts, she was bedridden with very bad pressure sores, under six stone, oral thrush, no speech and no movement. Today she's still doing very well, sleeps a lot, is as stiff as a board, must be nearing 9 stone, which is a bit of a worry. I'm still taking her shopping twice a week and it feels as though she's heavier. I'm only 10st 4lbs but I eat lots of chocolate for enegery.
To day I received 9 double pages with a longwinded title, most Section 2: Care Domains. Some are filled in and others I'm expected to fill in.
It is easy to see, these people have never spent a day, never mind a week or years caring for a loved one. Once again I'm referred to as a 'one off'', to that I think it would be nice to meet a one off CPN.
Until these people arrived on the seen, my wife and I have not seen a Doctor since early Feb, when she had to be rushed to A&E after a seizure. It is just over two years since we had a check-up.
Her GP's named on the form we last saw about four years ago!
The covering letter states"This is being applied for as a contingency plan in the rare event that you may become incapacitated eg via illness/injury".
I busted my ribs about a year back and just carried on with pain killers.
I'm asked to fill in the box on page 12, 'individual's assessment of their care needs' and return it in the SAE so as they can complete the form.
What happened to common sense? These remind me of fellows walking around a graveyard with a coffin an hour after been first seen, they'd lost the plot!
I'm wondering if anyone will or can tell me what this is all about?
Still going it alone. Padraig


Registered User
Mar 7, 2004
Dear Padraig, TP has been running a bit slower than usual recently, and I posted that sending replies was like "wading through treacle"

Unfortunately I think that trying to make sense of the world of welfare services is like wading through even thicker treacle.

I am sorry you are not getting the support you deserve. Wish there was something positive I could do.

Just sending you a virtual (((((((HUG))))))) so you know you are not completely alone.


Registered User
Jul 2, 2006
Newport, Gwent
Hi Padraig

Good to hear from you again, all be it to hear that you are still having nothing useful from this Welfare State of ours.

Hope the book is coming along well, and I hope that lovely girl of yours is as well as she can be.

Lots of love

Cate xxx


Registered User
Aug 3, 2006
Smoke and mirrors

Hi Nada, Connie and Cate. I've long known the whole system is full of smoke and mirrors, not unlike what Alzheimer's suffers ofen experience. Yesterday I started using this new computer, it's all singing and dancing the only trouble I don't know the tunes.
I can now see why the Psychologist who was dealing with Jean's case up to three and a half years ago quit the NHS to work at a University. She was so amazed at the changes in Jean six months after I took her from the NH, that she lined up a number of lectures for me. Of course I declined, I chose to be a lone carer first and foremost. Last week I phoned her at the Vniversity, she was thrilled and surprised to learn Jean was still alive and well. She pointed out what I was doing, was research into caring for AD. There is no doubt that I'm learning all the time.
Jean can no longer nod her head for a yes or no, I now have to read her facial expressions plus the eyes. Still I gently keep pleading in hope for a sign, of a yes or no, today surprise, surprise I got a very soft 'yes' to "Do you love me". The first since 24 Sept 2005. That has charged my batteries better than my morning run and I'm on a high.
It's taking me longer to wash, change and dress her, she is so very stiff. Feeding takes very little time and I've stopped using the baby bottle, except for when she lays in bed and wakes up. She sleeps a lot now, opens her eyes, sees me and pops off again. I may have to push back my getting up time from 04.45hrs to 0430hrs. If it keeps going like that, I'll be getting up before going to bed!
Cate, with reference to the book, I'm finding it hard going, so much to write about, there are surprises and shocks and that's without covering the Alzheimer's experience. That in it's self could take a book, covering the 12yrs plus, but that maybe of intrest only to carers. Sorry for going on, but it gets a little lonley for these two weeks with our daughter and husband in Spain. I miss her twice a week visit for a chat.
How in God's name do women cope doing all this housework plus all the other tasks year in year out, no time to be ill? It's never ending, sometimes I feel as though I'm on a tread-mill. I guess the answer has got to be: Thank God you found out, few get the chance.
Wishing you all the contentment I've found in caring for Jean.

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