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Norrms - Page 81 - Carers UK Forum

Norrms

For issues specific to caring for someone with dementia.
953 posts
I'll second that, brilliant work.
Me three.

I clicked expecting intrigue, scandal and melodrama but this is nearly as satisfying :lol:
SO VERY IMPORTANT...
PLEASE SHARE ............

A TIME FOR A CHANGE?


The Time has come, the Walrus said,
To speak of many things,
Including my dementia
And the horrors that it brings,
(Plagiarism? I hardly think so, but no doubt some will say it is LOLL)

So, there I was, stood in a town I have been to so many times before, looking around at the wonders of Country living. No stress, no computers, no mobiles, TV or e mails for two days, and yet? I had absolutely no idea where I was. To make matters worse, I had no idea where the car was parked.
Now I don’t drive, never have, but the standing joke for the last 20 years + still is, and has been, Elaine` s (My Angels) sense of direction!! It’s always been myself who remembers where the car is or the way back to it, and yet, for the very first time, not this time. I looked around in Horror to try and recognise anything I could, but nothing came to mind, nothing looked familiar, and I knew anytime in the next ten minutes Elaine was going to ask me where the car was?

The feeling of frustration was far surpassed by a feeling of utter hopelessness and fears about how my life has changed over the last few months, and not for the better. It was like a clock ticking inside my head, so loud and so present, the fear of the unknown ran through my body like electric jolts as my eyes darted from side to side, hungry for knowledge of something familiar, but it just didn’t happen, nothing came to the fore, and I think it must have been the sheer weight of exhaling breath that alerted Elaine.

She turned and looked at me with those beautiful eyes, alive and yet turning sadder by the second as I knew the realisation of what I must have been thinking dawned in her. She had seen this look on my face before, never as frightened, no! Never as TERRIFIED as this, but something very similar when I couldn’t remember the village we lived in some years ago. With her quiet, comforting voice, she asked very quietly “What’s the matter? As I tried to explain, the lump in throat got bigger, and I struggled to say my words. Because I my dementia I take a HUGE amount of Anti-depressants and this results in my inability to shed tears unless its something that’s so drastic to me or my family, the incredible depth of my sadness wins the battle and tears flow, this was one such occasion. I ushered my angel into a nearby alleyway, not caring what others thought and just blurted out
“I can’t remember where the car is “

HEY! Probably no big deal to billions across the globe!! But to me? This was THE BEGINING OF THE END!! Never before have stood there and not known where I was, or where I had just come from. This didn’t happen after a sleepless night, this didn’t happen after a stressful conference, this happened at a time when I was mat my most relaxed, and then, that’s when I realised, as much as I think I have this beaten, as much as I convince myself, after seven/eight years I can carry on as normal?

I CAN’T!!!!
Dear all, I WANT TOO!!! I WANT TO SO MUCH IT HURTS!! I want things to go back to Normal!! I want them to find a cure that will rid all of this awful disease, but as much as I hate to admit it, it’s (Looks like) it’s beginning to catch up with me, and at quite a pace too!! And so my dear, wonderful, comforting supportive friends, it’s time for a bit of a re think, WHILST I STILL CAN……………………..

I hope you don’t mind if I am not on here as often as usual, and I hope you will understand why until I, and my beautiful, wonderful Loving Angel (Elaine ) have had a bit of time to talk this over and think what to do next. I will promise you all, if at ALL POSSIBLE, and i hope it will be, I am HOPING I will be around until the WORLD ROCKS AGAINST DEMENTIA next march 19th 2016, maybe not as much, but that is my GOAL!!! I have decided to set goals now as I think it’s the right thing to do. If I manage it till next year? We will hold possibly the biggest dementia awareness event the world has ever seen as well as ROCKING the world with any type of music you guys see fit.

And If I am not fit enough to remember it next year? I am sure there are plenty of you guys out there that will remind me, LOL (Only one L , private joke LOLL)

Much love my most incredible friends, no matter where you are in the world, looking forward to a bit of a rest, hope you understand, and I KNOW there are plenty of people out the who are MORE THAN WILLING AND ABLE to carry the Eternal Torch of the Purple Angel campaign xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
"I KNOW there are plenty of people out the who are MORE THAN WILLING AND ABLE to carry the Eternal Torch of the Purple Angel campaign "
Carry it? I would smoke it if I knew where to find some more of the good stuff, lol :mrgreen:
A Quick question for you to ponder on this bank holiday weekend .............

in the eyes of the dept of health UK, is "Dementia"classed as a Disability ????

xxxxxxxxxxxxxxxxxx
Getting the right carer


This week I learnt that my carer John, who has been with me for two years now is leaving for pastures new (More money so can’t blame him as he has a family) and to say I will miss him will be an understatement. We have become firm friends, been on many adventures together and had so many laughs. Yes, we have had our ups and downs, and I have been known to be quite difficult during the times I was feeling depressed, but never the less we persevered and got through it. I had a succession of carers, about five in a year before john, and none of them suited, so this is not an exact science, but what we did learn is to make sure things were in place now before just contacting an agency .

I receive direct payments and can pick and choose who I have, and the lesson we have learned is to make sure you follow some simple rules, these are a few.

Always try to get someone who has the same interests, I had two carers who, after listening to them, I was losing the will to live!!LOL if you have similar interests in common you will always have something to talk about.
in the case of early onset in younger people please please try and match the age !! This sound like it should be done as a course of common sense but you wouldn't believe how often it doesn't happen!!

Fresh air is medicine in itself, so please make sure the carer is willing to take the person out anywhere they want to and share the day with them. Getting out and about keep the mind open, searching, and watching new things happen as the day goes by, new places, new experiences and also something to talk about when they get home

Understanding of the level of Spatial awareness is paramount as I would quite happily walk into the road if not watched and helped, I am also helped out of the car and NEVER on the side of the road with traffic passing, always pavement side.

A good relationship with yourselves as well is so important and they need to feel they can tell you anything and report back to you happenings during the time they are with the Person with dementia, open and honest dialogue is so important for the well-being or the patient./Client/ etc

But most of all, please make sure the person with dementia is Happy with their carer, ask them at regular intervals and look for signs when they say something that they are maybe not quite happy with.I shall miss my carer john, he has become a great friend and a friend of the family . I shall miss going fishing with him, Bowling with him, sharing the same sense of humor, laughing at the same things, talking about football and beer, and just DOING the same things i used to do before this AWFUL Illness of dementia invaded my brain.

yes he will leave a void, and i know it will be so hard to find someone like him, but i will, no matter how long it takes, because, as i say at the beginning of this post

Its SO IMPORTANT to GET THE RIGHT CARER

Norrms , Diagnosed with dementia 7 years ago, aged 50

Please share
This week is carers week, all natural, no posing, and to celebrate this i have changed my profile pic for one week. This pic taken last week at the Purple Angels Cream tea event in aid of Dementia UK / admiral nurses is the best pic i have seen in years . The sheer look of admiration in this carers eyes for her client just says it all. It should be a pic that shared worldwide, so please do xxxxxxxxx

Attachments

It is a fantastic photo, Norrms. It supports your last post too about the importance of finding the right carer. When a great match is made both the carer and the caree benefit enormously.

Melly1
Dementiaville, The second Episode, my humble opinion

WOW!! What a difference a week makes!! Whilst i stand by what i said about last weeks programme, this weeks is totally different!! I watched, sometimes feeling an little confused, as the advice given to those family`s with a loved one with dementia was quite simply what i would call "Common sense" If i am brutally honest it was "OLD NEWS " as Inclusion and Engagement, the two watchwords we live by here at the Purple Angel campaign was being taught to families as though it was something new?

I do have a couple of questions though,

1. Why did the families deem it necessary to stop including their loved ones in partaking in doing something they have always loved in the first place?? IE Cooking, , Dancing, Fishing Etc ? They might not be able to do as much as they used to, but can still do little bits, and very well!!

2. To say they (the person with dementia) may lose memories but can still feel them ?? I believe their isn't a Dr in the World can say this with absolute 100% conviction, their is no way in this world, ANY Dr can know whats going on in a persons mind.

Here at the Purple Angel the booklet we produced, which is free to download and if anybody wants this please just ask, we explain that daily living is an activity, we explain that washing, cooking, drying, laying the tables etc can all be included when helping someone with dementia as it was always a part of their lives before so why not now ? You are not asking them to solve the worlds problems, but just including them in every day activities to keep them occupied and their mind going.

TRY THIS>>>>>

Sit in a chair , facing a wall and stare at it for as long as comfortable.

How long did you do it for ? One minute? Two Minutes, Three minutes?

Did it feel longer than that ?? I bet it did!! now try to imagine doing that for hours on end, with no inclusion and engagement !! It almost borders on Torturous, but thats how so many people are left. All you have to do is ask them do they want to help with the laying of the table, drying the dishes, cooking (When safe ) and yes, MIXING wonderful cake mix or pie mix, or hoovering or sweeping up ??

Does this sound like a radical NEW approach to helping those with dementia ??

DOES IT HECK !!

This has been going on for years in parts, just not enough, what we have done is forgotten how to include those with dementia and unfortunately some just presume, once diagnosed with this awful disease, its game over, WELL ITS NOT!! Believe me its not, those people STILL want to do things, still want to be as active as physically possible and still want to be part of SOCIETY, we MUST ALL remember this

Norms and family, diagnosed with dementia 7 yrs ago and still active !!

Please share xxxxxxxxxxxx

P.S If you would like me to send you our free booklet via e mail to download, please PM me.
From my (limited) experience of my MIL, I agree that interacting with her really improves her responsiveness. BUT, that is exactly the problem, isn't it? That it takes one on one interaction.....
953 posts