Tag Archives: carers

Dementia friendly Communities

EVERYONE HAS HEARD THE WORD DEMENTIA, BUT THE TROUBLE IS, NOT MANY UNDERSTAND IT ! …….”INCLUDING ME AND MY FAMILY BEFORE I WAS DIAGNOSED,
BUT, WITH UNDERSTANDING, FEAR CAN BE REDUCED,
ITS THE UNKNOWN ONE FEARS THE MOST !

THAT’S WHY A DEMENTIA FRIENDLY COMMUNITY SHOULD BE BASED FIRSTLY, ON EDUCATION,
EDUCATION WHICH SHOULD START IN SCHOOLS SO NO MORE
MIS-UNDERSTANDING AND STIGMA ABOUT THE ILLNESS WOULD THEN EXIST, CHILDREN ARE OUR FUTURE AND AN IMPORTANT ASSET, THEY SHOULDN’T BE LEFT OUT OF A DEMENTIA FRIENDLY COMMUNITY.

THEN START TO EDUCATE THE SHOPS AND BUSINESSES, THE BANKS AND POST OFFICES, NOT JUST THE OWNERS BUT ALL THE STAFF,
THEN THE PUBLIC TRANSPORT STAFF, TRAINS, TAXIES AND BUSES !

IT IS EASIER TO START WITH THE SMALLER, INDEPENDENT BUSINESSES, THEN THE LARGER ONES, THE CORPORATE MULTI-NATIONALS WILL FOLOW TOO.

MOST PEOPLE WITH DEMENTIA LOSE THE CONFIDENCE TO LEAVE THEIR HOMES ONCE DIAGNOSED……….I KNOW I DID !

THEN GO INTO THE CARE HOMES, THE NURSING HOMES, SURGERIES AND HOSPITALS, EDUCATE ALL !

THEN THE PUBLIC……… BECAUSE WITH EDUCATION COMES UNDERSTANDING,
WITH UNDERSTANDING COMES SUPPORT AND CARING
KNOWLEDGE IS A POWERFUL TOOL !!

THEN THE RESCUE SERVICES, THE POLICE, AND COUNCILS,
WORKING EVER UPWARDS AND OUTWARDS.

THEN COMES CHANGES TO THE ENVIRONMENT,
WORKING WITH THE ARCHITECTS, ESTATE MANAGERS AND THE BUILDERS.
LOOKING AT THINGS LIKE SIGNAGE, LIGHTING AND LIVING ACCESSORIES,
ALSO THINGS LIKE MARKING STEPS, ESCALATORS AND PAVEMENT EDGES ETC,

ALL THE THINGS THAT CAN SUPPORT SOMEONE AND GIVE THEM CONFIDENCE WITHOUT TAKING THEIR DIGNITY AWAY

A BIG THING NEEDED IS INCLUSION, PLEASE ASK US WHAT WE NEED, WHAT WE WANT, IT SHOULD BE NOTHING ABOUT US WITHOUT US !
WE ARE, AFTER ALL, THE EXPERTS IN LIVING WITH DEMENTIA, WE ARE THE EXPERTS BY EXPERIENCE,
US, AND OUR CARERS, AND FAMILY MEMBERS.

YOU HAVE A WEALTH OF INFORMATION BETWEEN US !

PLEASE DONT FORGET THAT DEMENTIA IS A DISABILITY,
A DISABILITY YOU CANT ALWAYS SEE, THERE ISNT A LABEL

SO IF YOU GET IT RIGHT FOR THE PERSON WITH DEMENTIA THEN YOU GET IT RIGHT FOR EVERYONE !
ITS ABOUT PUTTING COMMUNITY SPIRIT BACK, SOMETHING THAT CAN BE SADLY LACKING, IN LOTS OF PLACES THESE DAYS.

ALL THESE THINGS ARE WHAT IS NEEDED TO MAKE GOOD PLACE FOR SOMEONE WITH DEMENTIA,

DEMENTIA FRIENDLY COMMUNITIES SHOULD BE ABLE TO SUPPORT EVERYONE AT ALL AGES AND AT ALL STAGES OF THE ILLNESS,
MAINTAINING THEIR CONFIDENCE AND BOOSTING ONE’S ABILITY TO MANAGE THEIR EVERY DAY LIFE

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My carer ? My driver, my partner, my child !

Since my illness has come galloping into our lives, we’ve had to adjust, adapt and organise our lives so much ! From white boards to digital clocks that tell me what day it is, but that’s just objects and subtle changes.
It’s the other major things,
things that others who aren’t involved in my day to day life won’t or can’t see.
It starts in the morning, I wake up and sometimes can’t remember what comes next, i lie there racking my brain, trying to remember, sometimes I shout my wife and she has to explain and hint about getting up, gentle reminders to shower, to dress, to put on clean clothes.
Otherwise without these reminders I wouldn’t remember to shower and dress in clean clothes. I forget to eat, I forget what I’ve actually eaten.
I have to be helped to get dressed sometimes if there are lots of buttons etc. If, when leaving a room and my hands are full with cups, etc or something similar and the door in front of me is shut, I CANT GET OUT ! The first time this happened I just sat down and cried, I actually sobbed ! My wife came in and she cried too. How we must of looked to the outside world, both stood there crying, me with my hands still full .
Watching tv, losing the plot and having to ask and repeat myself until I get bored watching and all the while my patient family just keep answering and helping me. At 53 years old I can’t ever go anywhere on my own ever again, I don’t drive and I can’t cross roads, who has to accompany me, guide me and protect me ? My close family ! I was supposed to protect them, look after them !
But enough about me, it’s my poor family that have stand by and watch their husband, their father, and their grandfather slowly forget, slowly disappear. It shouldn’t be my children’s job to tell me my pants have fallen down cos I haven’t buttoned them up, or remind me I haven’t put my pants on at all. My youngest, aged 16, shouldn’t have to pick me up from a care home, shouldn’t have to stand there and see my future, see what’s to become of me.
My whole family have dementia not just me, they all become unpaid carers, who are on call 24 hrs a day. This can’t be right !
Even when I’ve forgotten, they will remember, they will never forget ! They don’t have that luxury.
Believe the saying ‘ that one mans killer is another mans saviour’ !
The biggest changes, the biggest problems,have all mostly been for my family, I don’t even notice some, because some changes are subtle, but my family do ! My children do, My unpaid carers do ! Every day ! !
We all laugh together and we all cry together, we try to have fun with Mr.dementia, humour is so important, it’s the last thing I’ve got that hasn’t changed.
So for carers week please remember the 1000’s of folk that care, that care 24’hrs a day,
the carers that are so emotionally involved, the carers that cry, the carers that try to laugh, the carers that one doesn’t see and especially the young carers that should never be !
These full time carers and volunteers that never get paid, that never get recognition !
The carers that will never, ever have the luxury of being able to forget !

Night time

Wide awake at five past three
What on earth awakened me
Why can’t I sleep, why can’t I dream
This is my life now,…..it would seem
Days rolling into, the darkest night
Surely this,….can’t be right
The endless nights and days, That never end
The bad dreams, that the dark dous’t send
Wandering around the house at night
Trying to find that wayward light
The handles rattle, the handles turn
What is outside you have to learn
Your feet are cold,they freeze like ice
Someone shouts ! That can’t be nice
I was only lost, without the light
I didn’t need such a fright !
I just want to sleep and dream no more
Just let me through, sleep’s dark, large door
The door I look for every night
The Door that’s always just out of sight
Then I’m back in bed
You’re stroking my head
The woman from my dream
My darling wife It would seem !
© chrisroberts

My Day care update

Well after a long search, a very long search live finally found a care home, one with Wi-Fi I might add which is very difficult to find. It’s not ideal looking at my future but I’ve had a rant about that, I think everyone knows my feelings on the matter, but for there is no alternative so let’s just get on with what I’ve got for the moment .
The age group is very varied and there are lots of people in a moderate stage, so happy days ! At least now I got somewhere that I can go and have a day off once a week, time off from being me, time off from being on duty at home where the wife and children expect me to be me ! It’s getting such hard work trying to retain the old me. The time has come to stop looking back and hug the new me whether we like him or not.
Just sat in a care home I can switch off compleatly, become no one ! which I think will help to my stress levels , my idea is for every couple of days compleatly stress free will give me a few more days on the end total.
It’s a nice new elderly care home, with all mod cons, it has a lovely airy feel, they have several community rooms and a couple of quite rooms, a nice secure outside area and the most important – Wi-Fi !
Now that’s one decision that has been taken off my family ! No guilt about homes now or that’s the plan. I’ve got somewhere that I can get used to, get to know the home, the residents and the staff, so when the day comes I’m not carried off screaming and shouting to a strange place.
One less decision for my family to make because I’ve already made the decision I have chosen my own care home

Join our fight

There are those who listen and those that don’t or won’t !
I listen, I hear,
I hear it all, the end ,the near, and the far !
No one hears, no one listens, they just pretend,they do their duty !
All I hear, is the ridicule and the jeers !
No one sees ,all the tears 😥
they pretend to listen ,then turn away ,
I’d like them to be me ,for just one day !
The tears they flow, for no such reason
I wish they wouldn’t cos I can’t cope !
No man should cry ,such as I !
I sometimes wish I could die
Please look around you and See our plight,
Please step up, please join our fight

Young onset Alzheimer’s disease !

© chrisroberts.

The love I had.

Round and round, and round we go,
Trying to be normal is my darkest foe,
I see my soul ,large and black
Weighing so heavy ,on my back !
Don’t forsake me now, when I need you the most
Hold me tight and let me feel you close !
Time is flowing, flowing away
I Wonder what became of that day
The days you should remember
The promises you said you’d keep
And of the love I had that ran so deep
I screamed, you cried
The person you knew ,has already died
I want to love you, I try to care
Do or die, I dread to dare
Friends faces don’t appear ,anymore
There’re locked behind, that dark door.
© chrisroberts