Our first DBLT Stella event
Posted on February 20, 2014 Leave a Comment
Big thanks to Nuffield Health and Well Being and congratulations to everybody, on supporting our first DBLT Stella event. We’ve just finished counting the money we raised yesterday in the collection tins and we’re just over the £ 300 mark. I’m hoping, after the promised sponsor forms are in, we’ll hit over the £400 mark We thank everyone who has supported us and hope to continue to do even better in the future. Cheers X
Check it out here:
https://www.facebook.com/pages/Dont-Be-Like-That-Stella/508798919238365
New Facebook Page!
Posted on February 15, 2014 Leave a Comment
Just a quick update, dontbelikethatstella facebook page has gone live. I want to send special thanks to Dan at moorecomputers.co.uk for being patient and helping me, to extract the circus in my mind. Putting in the bread, and teaching me how to put the meat in the sandwich, helping turn my vision of this site, into a reality. He has taught me well! My next shout out, is to Ian at screamingmedia.co.uk for adding the timeline and profile graphics and designing the flyer in a blink of an eye!
Check it out here:-
www.facebook.com/pages/Dont-Be-Like-That-Stella/508798919238365
NHS OPT IN/OR OUT??????
Posted on February 8, 2014 Leave a Comment
Sharing our data with the NHS – Health Records – NHS Choices!!!!
To be honest, not too sure about how I feel about it? Regardless, it’s gonna happen in March 2014. Just to be clear, it isn’t my intention,to tell the reader what to do. My own opinion, is just that. But it is my duty to inform, and share!
So, read on and make your decision and look after yourself and your love ones. You decide!
Ok, first thing I knew about this, was a news report and an NHS txt informing me about it last week. To be honest the information didn’t really register with my brain. I’ve been busy looking after dad and trying to organize our part of the Health Event, 18th Feb 2014 at Nuffield Health and Well Being, Greenbridge from 9am – 8pm.
On one hand there’s the opportunity for scientists & researchers, being able to access the wealth of data taken from our nations 67.7 million population data pool. They might find a cure for many illnesses, including Dementia. So, I don’t wish to appear ungrateful or hypocritical. But, I don’t really feel like I trust any political decisions, that are happening at the moment. Is this the beginning of the end of the NHS as we know it. Is it a way to gather our information for possible investors, when they eventually sell off the NHS chunk by chunk to the highest bidders, or am I being paranoid? I don’t think we can rule anything out, and we should be prepared for the worst, as it happened to our railways, and every other utility that our country owned.
I feel torn, part of me wants to be community minded & spirited, and help the project and let our data be used for the greater good. But, to be honest i’m just not sure. Is it a case of the wool being pulled over our eyes again? I feel like I need more information, and guarantees that after a few months, or years down the line. It comes to light and is outed in the press, that our data has been lost or worst still, sold to the highest bidder!
I’m petrified of the data not being used for good and falling into the wrong hands, and being used to manipulate and abuse us, by falling into a criminal element, were many of us can be exploited:) history has given us vital documents, being left on the tubes, trains or taxis of London!
I felt obligated, to blog about this and to share this with you too. I think it is important for us all to make are own decisions, and play our part in society.
Please click on this link, read it and form your own opinion on it, and if your happy with it do nothing:-
http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx
Please click on this link, read it, and print it off, then fill it in, and give it to you GP if your not certain or unhappy and want to opt out asap:-
Dementia Time Bomb# About Bloody Time!
Posted on January 31, 2014 Leave a Comment
Finally the sound of that ticking time bomb has been heard:) Last December the world leaders who attended the G 8 summit committed to a co- ordinated working plan of action, in finding a cure or treatment, for Dementia by 2025. This hopefully means by talking together and communicating and planning research, they will all be able to work and reach their goal by working smarter not harder and all concerned being on the same page!
So, fingers crossed they will find a cure! The reality is, its gonna be too late for our current love ones who are suffering from it now. But hopefully, in 2025 when I’m in my fifties, I hopefully wont be suffering from or developing the illness, or if I do there might be a cure.They say one out of three people will have it, and by 2050, the projected annual global expected figure is 135 m dementia sufferers.
Now I don’t know what I ll be up to in 2050, if i’m still here, I ll be in my seventies, the decade my dad got his diagnosis its kind of like Russian Roulette, as they don’t know how or why people get it. We have been lucky though, as my dad has been under a good dementia team and the medication and care he’s received, and staying in his own home has helped.
Dad, his carer and I have been lucky enough, to go swimming at Nuffield Health and Well Being once a week, it does us all the world of good. They say that exercise releases natural feel good chemicals (endorphin’s) in the brain. Its kind of crazy, but we all feel really good after our splash around session and Dad seems to be more alert and stimulated. Now, I know that not everyone can swim or get in a pool, but if you can please can you come down and support our sponsored swim, cycle and/or row 18th February 2014 from 9 am till 8 pm, we have support from Nuffield Meet the Experts offering Health MOT checks and Massage Tasters, with support from local businesses and a raffle of donated prizes
We are raising money to give to the Alzheimer’s Society group based in Swindon, funds to take its members on trips and outings, with carers to assist them.
Whatever they remember, they remember, whilst on the jolly up! The important thing is how many times they laugh and smile and their enjoyment of the experience at the time, this truly is the most important thing!
http://dementiachallenge.dh.gov.uk/
Blue Monday Rubbish
Posted on January 21, 2014 Leave a Comment
Seriously, another made up thing to make us feel, even more sorry for ourselves. Wishing I could say b******s to that one, so I’ll say poppycock instead! And no, I wont be buying a “I SURVIVED BLUE MONDAY T-SHIRT or CARD” Lets pull ourselves together and not sweat the small stuff. We’re half way through January, pockets still hurting from Christmas and waiting for payday, still willing the weather to get better, and wishing for brighter days. Broken fences and boilers, the usual causalities, of this time of year will hurt our pockets even more, another unnecessary expense we can live without. But, when your feeling like you’re the only one, trust me everyone knows someone, who its happening too. As they say S**T HAPPENS, fix up and get over it! People living with Alzheimer’s have to adjust quickly and adjust our expectations. Still, find and have fun, and lots of laughter too. I look after dad, and he looks after me, we are a team, the doctors, nurse and carers play their part too. This Saturday, we went for a Mexican and went to the cinema. We had Sunday lunch with friends, rounded off with a hospital check up Monday morning. Now I’m the kind of woman, whose glass is always half full. I can remember, what we had and what happened in the film, and my dad can remember snippets. But, does this really matter, does it heck! He’s in good company, half the British nation, don’t remember, what they did over the weekend. If he is happy and can remember a few moments, then its cool. The doctor said, we’re all good, we have weighed up our options, and we are doing alright! They say “if it ain’t broke, don’t fix it? We are lucky that we have an amazing NHS system in our country and I’m grateful and thankful we can access it when we need it!
Dad & Rita Video
Posted on January 17, 2014 1 Comment
My dodgy filming last November 2013. Dad and I visiting his kind of step mum Rita, in her care home in London. Mother of three Rita, is 95 yrs old. She was with my grand-dad Jonathan (Jonny) Edwards, for about four yrs who died, when he was 32 yrs old.
No resolutions
Posted on January 5, 2014 Leave a Comment
With the worst winter in over 20 years, we welcome 2014 and baton down, the hatches. January weather is blowing up a storm with these crazy winds and rain patterns. Trying to remember how it felt, before these coughs and sniffles too. Hoping it leaves us all soon and normal, service resumes. Forgive me for the weather analogy, but our love and hate of the topic unites us all.
I’m not one for resolution’s, I’m more into being realistic and managing expectations. We are going into the year, hopeful and happy.
Illness is like the weather, we can know the seasons and get a forecast and sometimes it’s as predicted, but curve balls still occur. We’re going into this stage of Alzheimer’s with fingers crossed and a one size don’t fit all attitude. Just remember we’re all different and what happens to one doesn’t happen to all.
Be brave, be strong and nurture each other.
Breathe and cherish the special moments and please don’t forget your humour and laugh!
To everyone touched by dementia, good luck, good health and happy 2014.
What a difference a year makes !
Posted on December 25, 2013 Leave a Comment
Sat on the sofa, watching the Queens speech on the box , and we ‘re feeling blessed.
Our turkey (crossed with an ostrich) has been in the oven all night and we’re having a nice chilled out day.
We have full bellies and a sense of peace.
I agree with Her Majesty that indeed, there is a time for action and a time where, it is good to reflect , chill and be still.
Looking after dad has become a full time job. He is lucky, as I never lie to him, and remind him about things he’s forgotten or when he is confused, and help him know what is going on.
This time last year, we were in hospital, for just under three months from November through to February.
It was touch and go, but we’re still here, he’s just celebrated his 81st birthday!
We have so much to be thankful for, and we thank all the carers and kind people and friends in our lives.
Happy Christmas xxxxxxx
First Blog
Posted on December 16, 2013 Leave a Comment
Welcome to our first post here at Don’t be like that Stella or DBLT for short.I’m not a computer wiz kid, I’m more of a mouth on legs!! Here to demystify the world of caring and Alzheimer’s. I didn’t know what it is and I’m still learning. My dad has the disorder and I am his full time carer and I’ve been doing this for a few years now. What I need is your help and advice! I want this website to be a safe place where we can share and advise hints and tips with others.We wont have the definitive answers to every question or problem posted. But, we will give it a try!I want to share what is happening with others and have a little control on certain aspects of our lives. If this helps any other people going through the same thing, then excellent. As being a carer for someone with dementia is an unknown entity
Don't be like that Stella 