Norrms

For issues specific to caring for someone with dementia.
951 posts
Dementia and Valentines day

Valentines day can either be so romantic or so sad depending on your circumstances, i hope, this year will be a happy one for all, especially those with Dementia and their loved ones, hopefully, here`s how....................................

This is the perfect day to get out all the old photos, videos etc when your love was young !! We all know dementia is a short term memory loss and at later stages can mean loss of memory from years ago, but by sitting and sharing old memories/photos on this very special day can work wonders for some, and not only those with dementia !!

AND !! What about you carers and loved ones ? Why shouldn't YOU look back, remember the good times, the laughs, the nights out, YOU were young once too you know !!! Sometimes images play a big part, but if you include music as well, WOW!! What a combination, we all know music takes us back so who's to say that whilst playing your favorite songs, AND looking at old pictures what memories that might awaken ?? In fact, if you even take it one step further and add a Martini Rosso, Cinzano, Advocat, Pony, Babycham, or a Pale Ale, Guinness or Brown stout into the equation (you get the gist , and please drink sensibly LOL) Who knows what might happen, and if nothing comes back to them, just think of the special time you will be having on Valentines day anyway with your loved one, THEY might not be able to remember it, but YOU WILL !!!

So go on, make an effort, put yer glad rags on and enjoy your day as much as you would have done years ago,

Much love to all,

Please share

Norrms, Diagnosed 9 years ago aged just 50 and still feeling romantic after all these years LOL
A Feeling Of Loss (Dementia)

Yesterday many of my family gathered together for a celebratory meal, it was one of our granddaughters 18th Birthday (yes i do feel really old lol) especially as her two older sisters were there as well aged 25 and 21 yrs old. It was a time of much happiness for all, but also tinged with sadness for me. As i gazed upon these three stunningly beautiful young ladies with so much pride i also felt very sad as i knew i had lost them to adulthood, two of them now have children of their own (making me a great grandad ) and the 18 year old is now with a very hard working young man, but the fact is, the more i looked on, the more i knew i had lost them, not emotionally, as we are a very close family, we are also a VERY BIG family so we probably have more rocky roads that others, but always come together in times of need. but i had lost them none the less, my job was done, and they now had there own lives to live.

As always Elaine seemed to know what i was thinking, held my hand and whispered, we may not take them all on holiday anymore (it was an annual thing with all our older grandchildren) but i promise you, they have always known and will always know that grandad and Nan have, and will always be here for them. Somehow she always seems how to know to say the right thing at the right time and we all had such a great time.

On the way home my thoughts turned to my younger grandchildren, of which i still have many, and my great grandchildren, i suddenly felt my heart start to race as i panicked and thought "WHAT ABOUT THEM ??" Whats going to happen to them my mind screamed !! My other grandchildren and great grandchildren range from 9 years old downwards (There are also teenagers in the middle as well but older teenagers, and boys i may add lol) but i still have three granddaughters, two in Bolton , one in Torquay and also young twin boys. How can i possibly do for them what we have done for the others, the realization of my illness came to the fore and i was absolutely at my wits end !! Dont get me wrong, i have come to terms with my future, my ending, i have read the book, seen what happens on the last page and its not pretty !! but i have come to learn to try and live with it, BUT THIS ??? THIS ???

This illness, unless there is a miracle cure in the next couple of years will make sure i will never see my other grandchildren grow and flourish in life to the same age as the others. It will make sure i cannot teach, advise and show them the way as i did so many years ago, and more crushingly will possibly take away the memories of those i have helped to grow up into incredible young ladies.

This illness is so cruel, of that there`s no doubt, and in so many ways, but the thought of it taking my family away from me, the chances to spend time with them, laugh with them cry with them and comfort them when they need it is just to much to bear sometimes.

They don`t tell you this at the Conferences or in the Text books my dear friends xxxxxxxxxxxxxx

Norrms Mc Namara Diagnosed with dementia aged 50 , just nine years ago xxxxxxxxxxx

Footnote>>>> Please feel free to copy and paste if you want to dear friends and i hope this helps you understand how some feel who have this awful disease.
A Message from Myself, TO ALL, please share

In a few moths it will be TEN YEARS,
When my heart was broken and along came the tears,
It was the beginning of dementia`s reign,
That invaded my body, my life, my brain,

TEN long years have now gone by,
We have laughed, loved, and sometimes cried,
I’ve made so many friends along the way,
But also lost so many, almost every day,

This disease is the cruelest of all
Upsetting so many and making them fall,
The time has come for me to say,
I`m getting more tired every day,

More confused, frustrated and fraught,
With mixed up words, and tempers, sometimes fraught,
We have come so far in the last ten year`s,
Despite the critics and the fears,

I have no doubt this will continue to be,
Even with, or without me,
I need to spend time with my ANGEL Elaine,
Before my time on earth begins to wane,

Purple Angel will be remembered for ever,
With friendships made that you can`t sever,
So I may not be around as much,
But will always try to keep in touch,

Will take a further step back just after WRAD,
But after 10 years it can’t be bad,
I want to go fish, and on holiday too,
Without worrying about what next to do,

So for now dear friends, I will say goodbye,
No more tears or reason to cry

Norrms Mc Namara (Diagnosed with dementia nine and bit years ago) aged just 50
Care in the Community in a "Critical state"
But who`s fault is it ??


I recently did a talk / presentation to a dedicated hard working bunch of carers a few days ago and it was ALL my privilege to do so. My presentations are actually more about listening to what others have to say rather than me talking all the time, and unfortunately what i did hear was quite disturbing. The fact of the matter is the Home care Industry in the UK is on its KNEES , the carers who work for the companies are overwhelmed, underpaid and understaffed and under trained.

So whats new ?? I hear you say, and i dont blame you !! But the thing is this, (In my own humble opinion) for so long we have been actually blaming each other and others, but whom is really to blame? The Government? The town councils? The local CCgs or the Care Companies themselves

This is what i was told yesterday by incredibly hard working carers.........

Some companies ask the carers to actually PAY for their own training

Some companies do NOT pay carers for the time they do any training

The most they get is ONE DAYS TRAINING

and the most shocking news for me was when i suggested that some carers could do a free dementia course online to improve their skills the person in charge of training laughed and said

YEA RIGHT , like they would do it for nothing ???? putting the carers down

In sport we have a saying, if you do not want to pull the shirt on and be proud to wear it, then dont play for the club!!

In other words, if you dont want to be a paid carer, and i must stress a PAID carer`s as a lot of people didnt choose to become a carer but because of loved ones illness`s they have to and THANK GOD they do.

But if you dont want to be a a paid carer, learn as much as you can and be a better person for it as you will be helping others live a better life, then, quite simply dont do it!!

So now we have those left who DO want to be a dedicated carer, just as nurses want to look after people in hospital, those who are willing to go the extra mile and who we ALL rely on, they are without a doubt the backbone of this country who along with unpaid carers keep the economy afloat because if they all didnt do what they do this countries infrastructure would collapse, make no mistake about that, so where do we go from here.

We know their is no money about, we know the companies blame the CCG`s and the town councils who in turn blame the government who is in power at the time, its always about Funding and wages, and staffing, but its doesn't have to be. i am not looking at this with rose tinted glasses on either,, my GOD my own wife only gets 4 hours respite from me every week, hardly a drop in the ocean, but what i am talking about is self worth and Care company bosses getting their act together and training these carers to the highest standards so they can justifiably turn around the the ccgs and Town councils and say we have Highly trained carers in our company who have all sorts of qualifications now behind them so deserve better rates of pay and should be on par with nursing staff ect as they are looking after human beings as well.

THEY WILL THEN HAVE THE EVIDENCE TO BACK IT UP

The care home owners and care providers have to take responsibility in the first place and start the ball rolling. As an ex manager (Albeit in retail) i believed that if you invested in your staff, the ones who WANTED to be become better at what they do the rewards would be immeasurable. You have to show you have FAITH in your staff, you have hopes for your staff and give them the right encouragement , help and advice that is warranted, if you do this, your company becomes more efficient, less costly as sick days drop and also a huge improvement for the quality of care care for the people you look after happens.

This is not something that can be worked out as a mathematical possibility, or decided in an office way up in the sky far far away from the real people on the ground, but can be achieved by sitting with care workers, listening to them and asking THEM how YOU Could improve their working lives which doesn't include huge pay rises or having to pay for their own training , (Still cant quite believe this actually|)

There is so much help out there that can be downloaded for free, given out to carers, and read by many which would help. their are UNI courses that are absolutely FREE to take and are rewarded by recognised worldwide accreditation.

In my HUMBLE OPINION, its YOUR FAULT we are where we are , all you bosses and care providers (OWNERS) that dont invest the time and right training in your staff will always have problems, its certainly not the carers fault!! If you employ people on a two arms, two legs, anybody will do basis you will always have a very high turn over of staff, BUT !! if you have FAITH in your staff, train them to a respectable level and reward accordingly then YOU have something substantial to take the the local CCG and town councils when you are asking for more funding!!

The days of blaming each other and the government at the time is very old hat!! Also the days of employing a "Anybody will do " option should be outlawed.

The other option, in these days of Direct payments is for YOU carers out there to go private, on your own, and then you can ask £12/14 an hour,( nearly half more of what you probably earn now) and earn a decent wage for a while instead of the local council paying the care providers £15 /16 per hour +and you only getting the minimal wage.

NOW THAT would make the care providers sit up and take notice wouldn't it ????

Best wishes, Norrms
Diagnosed with dementia nine years ago and so happy to be back after a months break xxxxxxxxxxxxxx

Thought`s please xxxxxxxxxxxxx
Hi Norms, unfortunately people who care for the vulnerable in our society are not valued at all, kick a football about and you are wonderful, help someone to have a better quality of life do personal care for them pay them the minimum wage expect them to work long hours then wonder why there is such a high turn over of staff. Care agencies seem to be the worst offenders but homes are not much better, I don't know what the answer is but priorities cannot be profit but providing good care for people and valuing and respecting the people who deliver the hands on care are essential.
I totally agree Susan, thank you for responding xxxxxx
POSITIVE NEWS UPDATE ON PURPLE ANGEL MP3`s To help those with Dementia trials

Some time ago our Purple Angel Music dept of the Global Purple Angel campaign invented an MP3 player which would help people remember to Drink and eat during the day via prompting through music and songs and even though "it's early days yet ", but the first test results for the Purple Angel MP3 are starting to come in and as you can see they look very promising.

For those who live on their own with this awful disease the biggest worry for family and friends is dehydration and food intake. We know carers / caregivers cannot be there all the time 24/7 so the Purple Angel dementia awareness campaign decided we needed to do something to help. With the help of Ashley Sims and Barney Dine, a professional music studio and professional singers we came up with this, please click on link

http://www.purpleangelmusic.co.uk/

Here is one of the first reports of data from a long established home care company in Cornwall who we are working with and as you can see, its not all about the food and drink but improvements have been made on a social interaction level.

Early days my friend, but exciting times, Norrms Mc Namara
Founder of Global Purple Angel dementia awareness campaign
Please read on .............................

MP3 TRIALS

On the 2nd of March we installed two Mp3 players at Mr W home. One upstairs and One downstairs.
Mr W has Dementia and can be quite challenging in his behaviour. This presents as him not being in his own home and believes he is staying in a hotel or that he is in Army Barracks.

Mr W has recently lost a lot of weight which is causing his family and ourselves worry.
We leave snacks for him to eat but very often they are not touched and left uneaten.

His family are very happy to be part of these trials.

During the first week of the trials we noticed that the breakfast snacks left upstairs were being eaten. This made us all very excited.Mr W had not mentioned the Music to any of the Staff or Family at this time.

He was also eating the snacks left downstairs which again would not have usually happened,

During the second week it was reported that the upstairs MP3 had been switched off.

Lesley went and reset it but again the next day it was off again.
I had a phone call from Mr W daughter who was very excited as her Father had spoken to her on the phone. This is something that he normally finds very difficult.

He had told her all about the music and how much he was enjoying listening to it. He said that he has been trying to switch it on as it only plays for a short time. This would account for the number of times it is being switched of.

After speaking to Ashley the playing times have been increased.
He continues to eat the snacks left out for him

We have noticed a great improvement in Mr W welfare. His challenging behavior has improved greatly.
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Please share far and wide
Norrms this is such a cheering post. What a remarkable idea.

Well done to all involved, especially you. I shall certainly pass the news on. :D
Norms. How lovely to read. Hope is always there isn't it!
FREE if just for a few hours

"Last night i had a good nights sleep " I cant remember the last time i wrote that. The horrors of Lewy bodys and all it entails seems incessant and never ending at times, the night terrors, the hallucinations the continuous streams of distorted faces flashing in front of your eyes jarring every bone in your body, and then, as if "FOR ONE NIGHT ONLY" Nothing !!

As i awoke this morning all around felt different and yet familiar, it was very similar to travelling back in time to a place i once knew, a happy place of safety and security. Just for one nano second i was FREE, Free of this awful disease of dementia and i have to say it was the most wonderful place to be, if just for one second. My first words to Elaine were " Did you sleep ok ? As many a morning i had thought i had a good night only to be told it had been awful and i just couldnt remember it and as Elaine said yes we both had a puzzled yet contented look on our faces.

i know times like this dont come along that often as i said, but i am so very grateful as the rested look on Elaine's face and the Tired lines around her eyes that little smaller was a joy to see. I write so often about the kind of nights i have as well as daylight hours, but times like this gives one hope, it gives a person with dementia that much needed lift , if only for a short while when all is well with the world. Please dont get me wrong, i am a realist and i know from much experience that its quite probably the only time it could happen for however long, but the fact is , IT HAPPENED !!

And the fact that it did may mean it could happen again, and for that, as a person living with this awful disease, its give me hope, the strength to carry on and the ability to function a little better, if just for one short precious time

Norrms, Diagnosed with dementia nine years ago aged 50
951 posts