Tuesday, 25 April 2017

Good day at Northumbria University

I had another extremely good day at Northumbria University talking to Graduate nurses, although it got off to a sticky start, due to the fact that i was struggling to  see my notes at times. 
So this afternoon I reprinted them in larger lettering 

I spent my time here  talking about living well with Lewy Body Dementia

This is a University where they are aiming to become one of, if not the best Dementia Friendly Nurse Training establishments in the UK.

They have very high standards of dementia training, and it's this that makes me very proud of being involved with them.

 have been there to speak to Nurses on many occasions, and sometimes this has been done in the nurses own free time which to my proves a big point, and that is they really do want to learn more about the illness first hand.

By doing this I am hoping that all future Nurses, learn how to treat people with dementia, with the care, respect and dignity that they themselves would expect from others.

I know that it is tiring doing this at times, but if this works, then I feel I am doing something to be help those who with this illness in the future.

It also gives me a real buzz when the nurses come here to my blog, and leave comments, about how they enjoyed listening to the person with dementia speaking.

Yes I may get tired at times, but I feel a real sense of achievement and this gives me a good reason to carry on fighting this illness. I am also so very proud to help Northumbria University and the student Nurses while I am still able to do it 

As a person with early onset Lewy Body Dementia I have been very proud and privileged, to have worked with the Staff at the University, where over the last  few years  I have  given various talks to students who are taking a degree in Nursing.

It has been a privilege to explain the problems I struggle with on a daily basis, in the hope that the Nursing staff of the future are better equipped to help and support others who have dementia, when they need to go into hospital for treatment.  

The students have always been good enough to send us personal remarks, after each talk and that does make it feel as if it has all been that bit more worthwhile because, it also proves that they too get something out of the talks.

I can honestly say that the lecturers have been so supportive and kind, especially by giving me enough time to consider the subject for my talks well in advance, so that I can spend time writing it all out before the event.

This must be one of the first dementia friendly Universities in the country, and they should be very proud of themselves for what they achieved in the period.

Well done to all of the staff who do, so much to help train high quality nursing staff for the future

Walking with Comorbidities

With most illnesses these days we are encouraged to remain active, whether  that's by taking part  in sport or walking as and when we can.

Sometimes it's not easy, because with some illnesses you can't walk as far as you used to do.

These days I feel restricted due to various problems, but I still try to walk as far as I can.

When I was at school I used to walk to and from school everyday, unless the weather was really bad

I used to save my bus fare money  up, and use it for something else. This was because I enjoyed the walks there and back with school friends who lived nearby 

When I was in the Scouts I really enjoyed hiking around the country, or walking around mountains, because I loved the countryside, along with the peace at times 

While I was restricted by breathing problems at times, I kept pushing myself to keep up with others, and never give in or stopped, until I really had too. 

I suppose in those days,  it was not an option, because I did not want to feel like a week link, or hold others up 

As a teenager I always had chest problems, which were put down as asthma,  but I was still fairly active 

I was never one to sit and do nothing at all, and my parents always thought there was something wrong, because,  I never sat down for very long before I was bored out of my mind 

I was one if those who was always on the move or doing something to keep myself occupied.

I  always loved walking and have walked on many occasions, when I could and possibly should have got a bus.

Yes I have a free bus pass, but it's only used on journeys that are too far to walk.

 I get annoyed when people get on  a bus at one stop, then get off at the next bus stop, which up is usually 500 yards away. 

To me that's being lazy, unless you have serious medical problem, but I do think these free bus passes encourage many to be lazy these days. 

Ever since I was diagnosed as having early onset Lewy Body Dementia,  I have tried to remain active. 

However many professionals have said in the past that people Iike me should sit down and take it easy, most of those were social workers.

I have never done that unless my chest has been playing up. I would rather enjoy life in whatever way I can.

Even if I am wheezing when i breathe at times, I force myself to carry on.  This is because it's good to exercise the lungs.

These days I struggle to walk the long  distances, due to my torn knee, Osteoarthritis in the hip, coupled with Bilareral Bronchiectasis and Emphysema, but I still try to push myself as much as I can.

Sometimes I hit lucky and enjoy it, but then on other days I know I have done too much

However on those days I usually pay for it later, but which time it's too late.

Walking helps the breathing if you pace yourself properly, and that in turn keeps us fit.

These days I usually take my camera with me, so that it's easier to pace myself, however I have been known to get carried away when watching wildlife, and then I walk too far. 

However photography has allowed me to remain active, and keep my mind occupied

This side of things I do for my memory problems. 

However it's hit and miss, and I can go out sometimes, then just forget the camera settings which is stressful 

There is something quite relaxing and calming,  about going for a walk around the riverside park, and spending time sitting with the swans and ducks

Some people find swans to be intimidating, but I find them quite calming

Two weeks ago my wife bought a garmin vivofit and I have managed to pace myself each day, and this device keeps track on how far I have walked.

This is then downloaded on to the computer every night.

Yes there are days when I don't walk every day due to my medical conditions, but I do my best and that's the important thing.

It's too easy to sit back and do nothing when you can't be bothered, but I know that if I keep going, it's better for me all round 

These days I have to keep covered up, because I burn if I am in the sun too long. The doctor said that it's because of all of the antibiotics and other medication. 

I have never been one to use sun  caps, so I find these things hard to get on with, but after being badly sunburnt I realise that they are important 

Its also been pointed out that the long term use of these medicines also mean that the eyes can get burnt ?

I find this  very hard to understand, but I have been told that it's a fact, so I have to cover my eyes too, 

But it's all for the best and I have to accept these changes 

Sunday, 23 April 2017

Talking to Graduate Nurses again

As an Ambassador for the Lewy Body Dementia Society, I will be going back next week to Northumbria University to talk to Graduate Nurses. 

It's been a while since I did this due to recurring chest infections and problems with diagnosis, but now that things are sorted out again, it will be good to start again, however I am not sure how long it will last.

I realised that last time I was giving a talk, that I was struggling to breathe so it's going to be a case of waiting and see.

The reason for the talks, is to get these graduate nurses to understand that people with dementia are normal people, it's just our brains don't always work the way they used to do.

Yes we have our own individual problems, and sometimes get agitated when we are unsure of what is happening,  or when we are out of our comfort zone.

But if we are treated with respect,  we usually  get along well.

I always say that everyone should treat others with the same respect, that they would expect from others around them,  and nothing less.

Respect costs nothing,  and it's something many of us grew up with, and therefore we expect it from others.

Nurses like everyone else in the medical profession get very little training in dementia, so this is one way of explaining things to them over the one hour sessions.

Yes there are many negatives about this illness, as with other illnesses, but I don't always go there, because it gets distressing thinking of all of the things I have lost, like my job, and hobbies which have become too dangerous to do.

I prefer to talk about how we all want to live as well as possible, with this horrible illness.

Health professionals have very busy lives these days, so if they get an understanding of this and other illnesses, it may well help them in the future

One thing they must understand is, that not everyone with dementia is the same.

There are over 300 variations of dementia, and therefore no two people are the same.

We are all individuals with , individual problems and symptoms.

However this is a chance for me to explain about my Lewy Body Dementia Diagnosis.

Because Lewy Body Dementia  is totally different from other types of Dementia, due to the fact that people sometimes have hallucinations. 

We also have very graphic nightmares,  which can be acted out, making it difficult at times to separate the nightmares from reality.

Many of us have other problems too, and this has to be remembered. I have balance problems, along with Chronic  Lung problems, and this has a knock on effect on our lives.

Dementia is not easy to diagnose, but the same goes for other illnesses.

When I consider that I was ill with chest problems as a child, but it's taken up till last year,  to find out why I was having recurring chest infections.

Over the years it was simply put down as working in industry or asthma, then they find out its much worse.

I guess the same goes with dementia, because many doctors use different terms or names for an illness, and that in turn causes confusion and stress to us and our families

Many people assume that once you get a diagnosis of dementia, your days are numbered,

However,  it's a well known fact that there are many people around the world, who have been living with the illness for over 20 years after their diagnosis

It all,  depends on the type and treatment given, along with the support you are given by the consultants

So don't think that because you have seen one person with this illness, that we are all the same, because that is totally wrong

Monday, 17 April 2017

Looking back part 2

When we moved from the mining village it was a shock to the system, because we moved into a new council estate

Yes we had an inside toilet, a bath and hot water straight running from  the tap,  a big garden and we were near to the town centre, but the people seemed to be different.

I guess in a small mining village, every one knew everyone else, but in this new estate it was all so very different.

People started having things like cars, or motorbikes and side cars.

We had a playing field for playing games, but on a dark night it was more fun playing football and cricket in the back street, using a dustbin as stumps etc.

If the ball hit the dust bin, there was no denying that you were not out, because everyone heard the bang

However many of the locals used to object to the noise, and things would get out of hand if a ball  went into someone's garden, then we had to ask permission to go and get it back

You simply just did not walk in and pick it up without asking.

But one of the novelties we had, was the fact that the Great North East Railway ran past the front of our house. So it was here that I started train spotting because all of the big express trains etc,   ran up and down this line.

This was before trainspotting books came out, so we used a sheet of paper to note all of the trains.

If it was raining I was allowed to spot trains from my parents bedroom window, providing dad was not sleeping, but when it was fine, we used to sit on the trackside fence. This was pure joy.

I like my friends then bought areal train spotters book, with all of the train numbers and names in, and things got more serious after that
I guess in those days the book was paid for out of pocket money, and was bought by our parents.

Not far away there was another railway line which ran from Tyne dock up to the then Consett Iron Works. These trains were giants, due to the very steep gradient they had to climb with the ore trains. These were the class 11F locomotives which were true giants in many ways.

So if we were allowed to walk down to the next railway bridge, we got trains on two separate tracks, and that was pure joy.

After this I joined the Parish Church choir and the Cubs, and from then on things changed quite a lot

At this age I confess that I did not like school at all, because I was not really academic, and my brother was doing much better than I was. So it was always said by teachers, that I was not fit to stand in my brothers shoes. So I lost the will to fight on.

It was after leaving school and going to college that I found my own way and did well for myself

But in those early years I battled on and found my own way, even though the teachers thought I was a waste of space. I often look back and think, that I made myself into an Engineer, so to me that was one up on the teachers who did not like me.

I ended up feeling very proud of doing so well at work and at college, even though my school days were not very good
However  that was down to teachers who had other things in their minds and were not very good at their jobs as others people have said recently
But it proved that in the right environment you can flourish and do well

It's a pity that this illness came along and destroyed it all.

Looking back to early days Part 1

After being at Beamish Museum a lot of memories started to come back, and the grandchildren thought some of them were strange and others were odd, or funny.

I was born in a small coal mining village in county Durham, a village that was surrounded by moorlands or fells as we called them..

Within the village there was one large deep pit coal mine, and three drift mines, which were sunk into the hill sides.

The houses were basic, because they were owned by the mining company, but they consisted of two rooms down stairs, and two upstairs.

There was only one cold water tap, and all hot water was heated up on the large coal range in the main kitchen / living room area, downstairs. 

The front room was for Sundays,  or for guests otherwise, us children were kept out of it, apart from going through it to go upstairs to bed.

There was no bath inside, we just had a tin bath which was hung on the wall outside the house when not in use. 

When needed, it was brought in and the water was heated on the range.

The lighting was all gas provided by the mine.

The toilet was in the back yard, here again no running water as we have thee days.

The toilets did not have drains either, but were emptied out every so often, by a man working for the mine, who went down the streets with a horse and cart emptying each toilet out.
That must have been an awful job.

I often wondered what would have happened if the family were hit by a bug like diarrhoea and sickness, but these were few and far between because as children we were always playing in muddy fields etc, and there were few of the bugs around that we have these days.

My father grew up in the same village and he was one of six children.

So the downstairs rooms were a kitchen/ living room, and a front room which acted as his parents bedroom
Upstairs the three daughters slept in one room, and the three boys in the other.

Not a lot of space, but in those days you got on with life and accepted it.

I have an elderly aunt living in the house where my father grew up, and it's strange to think that 8 people lived in such a small house.

Next to the toilet was a coal shed, where all of the coal was shovelled in through an 18 inch hatch after it had been delivered.

My mother always talked about me as a three or four year old, walking up and down the street with my little toy wheel barrow,  loading it up with someone's coal from the street, and wheeling it back home, where it was emptied outside the back gate.

She later admitted that they were very worried at one stage, because for some reason they started to notice that their cutlery draw was looking oddly "sparse and nothing made and sense.

In those days we had oilcloth on the bare wooden floor boards in the kitchen, and as you walked through the kitchen from the back door, the oilcloth was wearing thin and had split in places, due to the floor boards splitting and breaking at the edges.

So my father started to replace the broken floor boards before replacing the oilcloth, and found all of he cutlery under the floor.

It was then that they realised that I was hiding their precious cutlery under the floor, by pushing through the spilt oilcloth and broken floor boards.

I honestly don't know what I was trying to achieve at that age, but our grandchildren thought that it was funny.

Mum embarrassed but I was too young to understand what I was doing, and I was so small at this time, that I could not reach the sink.

I guess we all did weird things as children, but I confess that I don't remember any of this happening

When I was old enough I went to the Infants school in the village, which again was built and owned by the mine owners.

It was here that I was taught the basics of writing and arithmetic,  with a slate board and slate pencil. The screeches can still give me the shivers.

When we first took the grandchildren up to Beamish Museum,   I told them about using those, and they looked at me in total disbelief, it was as if they thought I had been a caveman

It was amazing watching these children using these slate boards and pencils.

After this children went to the Senior school, which was around 1 1/2 miles walk across the fells, then the mining company put roads across the fells,  which made it easier.

Those were the days when few parents had transport, so you either got a bus or walked, and most people in those days chose to walk, unless the weather was rubbish

The old Church and Chapels were  built and owned by the mine owners too.

The organ in the church was pumped up by hand, in those days,  so playing the organ was a two person job.

One playing the organ while someone else pumped it up, using a large lever at the side of the organ

My grandfather used to play the organ on Sundays,  and my father's brother, uncle John used to pump the organ up as a boy. He then took over playing the organ when grandfather lost his eyesight in a mining accident

We grew all our own vegetables because the nearest town was two miles away, and the only large  shop was a local Co-op shop, so it was a case of doing what you could.

There was also a public house , a working mens club, a few small independent shops and a post office.

But it was a totaly different life style to what we see today.

There were no play grounds, you just played on the fells, and arrived back when someone decided it must be nearly time for your meals.

This was made easy sometimes, because the mine hooter used to sound at the end of every shift, so we knew it was time to get back in before father came home.

Considering wrist watches were not around in those days, we always managed to get home at meal time.
As my Aunt always says, we used to go out to play after breakfast, and would return when we were hungry which was around 12 noon. Then we went out again and returned around 4-30.

She always said that she was amazed at out time keeping. But I guess it was the same when they were children

The moors stretched for miles, so we could be anywhere,  but never got lost or into trouble

The first public telephone box arrived in the village not long after we left around 1952.

But these days children don't understand that we lived in houses without a telephone,  running hot water, Electricity,  Central heating or inside toilet

What is more there was no television or radio, because there was no radio signal up there then.

They look at the outside toilet at Beamish in total disbelief. As one grand daughter said at Beamish one Day?  How did you get to the toilet when it was dark. We used a candle.

Did you have spider's living in the Toilet?  I guess there was, but it was so cold out there in winter that you got back inside as soon as you could

I guess that this was the start of my chest problems, because it was then that I had Mumps measels and Whooping cough.

I suppose a mining village was full of pollution,  but I was far too young to understand that

Lovely Day at Beamish Museum

After a rubbish start today, I looked at my blog and accidentally deleted this post, and had to redo it all over again

Last week my Son Mark, his Wife Tracy and their children Jacob and Holly, met up with my wife and I, along with our daughter Claire and family from Farnborough who were here on holiday
It was lovely to see them all together, as its not often that Claire's Children meet up with Marks due to the distance
However Lucy, Emily and Matthew had a lovely time, because they love going up to Beamish 

I can remember many people having motorcycles and sidecars in my early days, because cars were not so popular, as in many cases they were very expensive

         These early cars look lovely, but I would imagine they are not so nice in foul weather

                  Here we watched a Welsh Saw Mill in action driven by a traction engine

                              The Old Penny farthing bikes of days gone by
                                                      First World War Truck

                                                       First World war soldiers marching up the front street

                                                Rolls Royce Silver Ghost

                                                    Advertising outside the railway station

      I wonder how many people could remember seeing these signs at the track side I days gone by

The Old Rowley Railway station which was moved here stone by stone when the original station closed down

                                                     A Tarmac Steam Lorry

                                                    Steam train at the station 

                  As a child I remembered these old trolley buses in Newcastle and Sunderland                                                             

                               Another First World War Truck with a heavy winch on the back

                                          Jacob and Matthew playing in the sand just before Lunch
                                                            Lunch Time

                                            A very old Case Tractor

                                  Steam Threshing and baling, another wonderful sight from years gone by

When I was very young, I remembered the traders and milk men used to come round the streets with horse and carts like this delivering milk and groceries

One of the many steam Lorry's on display.
This one was a McPhersons Distillery Lorry from Scotland

A heavy haulage lorry

An assortment of old cars with a steam excavator in the back ground  

A miniature steam train which was on display before heading off to its destination in the lake district
to run on the Esk Line

The old mining village which includes a Chapel, School, Mining cottages, Fish and chip shop engine sheds and shops including a bakery

There is also a walk in drift mine and a colliery along with engine sheds and workshops

Sunday, 16 April 2017

Banks and dementia

Over the last few years a lot of work has been done with Lloyds Banks making them dementia friendly, but now things are changing

Many banks like Lloyds are cutting the number of branches they own, as well as cutting  staff numbers down

Although I am lucky to have very supportive staff in our branch at home,  it's all changing

If I go into the local bank, I am asked straight away if they can help in any way, because I sometimes struggle at times

We did a lot of dementia training in the branches in our area, and thought many of the staff were supportive and went out of their way to help.

But it seems that now, they are working flat out and don't have the chance to help as much as they did

Many of the old members of staff, still come up to me when I am on my own, and ask if they can help. They also ask where my wife is etc.

There are not the numbers of staff around anymore these days, and some of the staff have changed, so they don't know about me, and if I am honest I don't know them

It seems that Banks are cutting staff to save money, but that has a knock on effect when there are big queues of people who may well be annoyed and frustrated at having to wait.

This means that anyone else who has a medical problem,  then ends up being put under more pressure, because they are not able to think clearly, and many people these days are not very forgiving when someone is struggling.

I find it distressing when I am in a queue, and people behind start arguing and complaining, because my concentration goes completely

But I think that this is down to people putting themselves first, and ignoring the rights of others.

I personally feel, that no matter how much dementia training is done, it's going to fail in places like banks because their shareholders are in control.

In the case of Lloyds bank, the general public still own it, and therefore they should think of the public first and not themselves.

However it's not just people with dementia who will be left struggling when they go into banks, its people with many other  illnesses, but I do wonder if the banks really care these days.

It's all about the shareholders and nothing else

So has the dementia  training in banks been a waste of Time?  I guess only time will tell, but it's not liking too good at present, and if they keep cutting down on counter staff as they are doing now, it's going to fail.

Tuesday, 11 April 2017

Hosptials and Dementia

Dementia and Hospitals
This was written a few years ago but it’s still very relevant today  
I do feel that hospitals can be very frightening for most people, but when Dementia is added it becomes a nightmare for those with the illness and their carers.
I have not had any experience of dementia in General Hospitals, but in 2001 when I was taken in to hospital with Viral Pneumonia, and I experienced something that was enough to put me off going near a general hospital ever again.
This all started when I was admitted at tea time and was given an unmade bed. Around an hour later I was given a drip, and was then told by a consultant that I would be having an x-ray. At around 11pm, and still without a made up bed, I was taken for an x-ray, after which I was told that I could go to bed.
 However when I returned to the ward there were no staff present, so I had to attempt to make the bed on my own, with the drip in on arm. To add insult to injury, the next morning, the young staff nurse complained to me about the state of my bed, and said something like; I should have found a member of staff to make the bed up.
Later on the second night, I was then transferred to a different hospital where they dealt with chest infections, and after two days noticed that the lady cleaning the toilets was also rushing back to serve meals? This did not give me very much confidence, as the toilets were dirty, and I had to clean one before using it.
The baths also had air beds in them, so you had to take them out to get a bath.
I complained to one young doctor who said that I would possibly get better faster at home than in those conditions.
A few weeks later the same hospital was given warning that it would be closed if it was not cleaned up. But by then I was told that I had released myself from the hospital so the doctors did not want to know anymore. It took a long time before we were able to explain it all to our own GP
So in more ways than one I was lucky that I did not have dementia at that stage, as I cannot remember how I managed to get my pyjamas on that night. So just imagine what would have happened if I had dementia at that stage.

Many hospitals are still not dementia friendly these days.
Dementia causes many problems when a person is admitted into a general hospital, and therefore the carer should always be consulted.
We hear a lot about when someone is admitted to hospital or a nursing home, and this is usually made worst by the fact that neither, the nursing staff or the doctors understand that the person has dementia, or what dementia is. Sadly, this is lack of training, and this has to be looked into before things can get better.

 There are also many posters and signs on the wall which act as distractions, leaving us struggling to find the right information, so it is very hard to find your way, and this is made worse by the lack of understanding staff, who are always in a hurry to do something else, and don’t really want to be involved in helping someone with this disease, as we are in many cases treated as a liability.
Yes we may make mistakes at times, but this is caused by something, which is out of our control, and is not deliberate.
Getting lost in unfamiliar surroundings is very normal and expected when people have this illness, so please don’t send someone to a different department on their own as they may well panic or never get there.
Many hospitals are not dementia friendly, as all the corridors, and doors are the same colour, and many of the signs are in the wrong place. Many of the wards look the same, so it is easy to get lost or go to the wrong section.
Sometimes the toilets are difficult to get out of due to the types of locks and the very large mirrors, which give you the idea that there are two of everything and it is sometimes difficult to work out what taps are real and which are reflections.
It is common for people with dementia to see things which are not there for others to see? We see things in floors and wall decorations which can relate to something from the past, or from common nightmares.

We just have a disease, but we are normal people, who just happen to have a brain that is doing its own thing. However, to most people we look normal we still have two legs two arms and a head, but that is because dementia is not something that can be identified the same as a broken arm or leg, it is all in the brain.
As many people have said to me in the past, “You don’t look as if you have anything wrong with you”. Do we need to walk round wearing a band on our heads, saying we have dementia?
Imagine if you were to lose the ability to say the right word or understand what is being said, e.g., when on holiday in a foreign country where you don’t speak the language.
You may feel frustrated, angry and look for help, perhaps someone to interpret for you, or help you find the right words.
You might respond by not speaking at all and withdrawing into yourself or avoiding situations where you have to communicate with people.
In some cases this is what happens in dementia, the only difference is that, it is your “own language” that you do not fully understand, and that is upsetting and stressful, especially when people think you are being rude or disrespected because you use the wrong words at times
A person with Dementia may also feel under pressure because they cannot cope, with different and unfamiliar areas, as well as they used to, but this is because their brain is taking longer to process the information in front of them.
Many already also have poor hearing which can be made worse by their dementia, and they may not understand clearly what is being said to them, some people become frightened by too much noise or like me find that their hearing has become acute, which can at times make life unbearable.
Next time you have a hangover, just think that the extra loud noises you struggle with after a party are for real in those with dementia, and it is not due to alcohol.
Some people have Lewy Body Dementia etc, and struggle with very graphic nightmares, and it’s difficult to work out the nightmare from reality during the night.
If someone is going through one of these, please don’t get too close, in attempt to wake us up. Stand aside and speak to us quietly.
Do not attempt to shake us or get too close otherwise. You could become part of the nightmare and could end up being hurt.
We don’t want to be accused of assaulting staff when we are not in control, so please take this on board   
There is one factor that we all agree on, and this causes more distress than anything else and that is noise, so please try to find some a place where there is no background noise, such as people talking, Radio or TV noise, as this is distracting.
Many of us develop daily routines as a way of keeping control of our lives and independence and if these are stopped or interrupted we may get frightened, because we are not in control, so please allow us to stick to these routines, otherwise everything falls apart, and we forget things like taking our medication or getting washed.
Treat the person with the respect that “you” would expect from others, as like it or not we are the same as you, but we are struggling to come to terms with this illness as well as losing control over our lives, and many tasks that were easy are now very hard, if not impossible to cope with.
Many people with dementia also act in very different ways, this is due to the fact that there are so many variations and no two people are the same, or have the same symptoms.
Treat the person as you would have done, before the dementia, we may have this illness, but in many ways we are the same as you, we are all human.
Don’t patronise us by trying to answer the questions you have just asked us, give us a chance to answer them, as in many cases we just need time to process the information before giving you the answer.
Try to speak clearly, carefully and slowly and where possible, face to face, so that we can understand you, and attempt to pick more of what you are saying to us, as your accent may be hard to understand, and like it or not, trying to understand a strong accent, as well as the questions, is difficult for anyone with dementia.
Try to speak in a calm voice and not get agitated otherwise it makes those with the illness react in the same way, then we are accused of being aggressive.
So please do not discuss our problems with anyone else while we are there; as it is hurtful and disrespectful, we have ears and a tongue, so we can answer back ourselves.
Many lose the ability to read properly and understand what is written down in front of them, so they may need someone like a carer to explain things. So please do not expect a person with dementia to understand something like a consent form, because we may as well be signing our lives away.
This also means that when a consent form needs to be signed, it should be done in front of the carer, who can explain it all in normal language, in other words, not medical jargon as we still get these days
Accident and Emergency Department,   can be frightening these days, when you see the drunk and abusive patients sitting around.
To me these people should be made to pay for treatment if it happens on a regular basis, and they should be banned from entering any hospital if they have been abusive.

I don't cope with drink and abusive people these days as I panic and want to get away from them, and I guess that I am not the only one with this problem.

Allow plenty of time for the person to take in what you say and to reply
Try not to confuse or embarrass the person by correcting them bluntly
Use questions which ask for a simple answer
Don’t ask questions which test their memory, e.g., who am I? or what did you say yesterday.
Allow plenty of time for the person to take in what you say and to reply
Try not to confuse or embarrass the person by correcting them bluntly
Use questions which ask for a simple answer
Don’t ask questions which test their memory, e.g., who am I? or what did you say yesterday.
Actions Speak louder than Words
Talk about familiar people, places and ideas
Use the surnames of the people you are talking about, instead of “he or she”. It will remind the person of who you are talking about.
Use facial expressions and hand gestures to make yourself understood.
You can give support by offering practical help, e.g. with shopping or simply by taking the time for a friendly chat
Don’t Assume that you know everything about dementia, if you really want to know how it feels to have this illness, ask us, never assume that you have all the answers, because you could be totally wrong..
There really is too much to learn with this illness and when you consider that there are over 200 variations of the disease, is it any wonder that people don’t understand it.
 Hints to help you communicate with someone who has dementia:-
Be Calm, because if you get agitated you will only make things much worse for those living with the illness
Face the person, speak clearly and slowly
Make sure that you have their attention by gently touching their arm and saying their name
Use short simple sentences and say exactly what you mean
Try to get one idea across at a time
Allow plenty of time for the person to take in what you say and to reply
Try not to confuse or embarrass the person by correcting them bluntly
 Use questions which ask for a simple answer
Don’t ask questions which test their memory, e.g., who am I? or what did you say yesterday.
Talk about familiar people, places and ideas
Use the surnames of the people you are talking about, instead of “he or she”. It will remind the person of who you are talking about.
Use facial expressions and hand gestures to make yourself understood.

Friday, 7 April 2017

Dementia Cafe

This weekend we went to a Dementia Cafe in Barnard Castle and really enjoyed myself.

My wife had suggested that we go, as we were staying at our Holiday Static Caravan in Barnard Castle, and the memory Cafe was around a mile away.

I have been to many of these dementia Cafes, but always left feeling it was a waste of time, but this one was totally different.

I guess that it was different for a few reasons, but one reason was that everyone there  was so friendly, and ignored the fact that we were not really from the town. 

Most people we see around the town speak, and that's something I find unusual, these days.
But everyone we see going into, and out of the town centre treat us like locals, and either wave or speak as we pass.

This is what I call a very friendly town, and certainly a Dementia friendly town.

The town where  we live these days, has changed from the town I grew up in, and apart from neighbours, no one speaks.

But the interesting thing about Barnard Castle, is the fact that there are lots of things going on for both carers and people living with Dementia, and that's a wonderful sign these days.

While many areas of the country,  are suffering from savage cuts, this area seems to be bucking the trend, and have lots of services.

I do think that this is down to the local staff and volunteers, who seem to be more switched on.

However I really love being around Barnard Castle, seeing all of the wild life during the day, and hearing the owls in the trees outside our caravan every night.

I know that there are two owls most nights and it's so nice to hear, even if I am on my own, because it feels as if I am not alone.

I think they are Tawny and Barn owls, but I am not sure.

However Barnard Castle like our own town has become a rat run for cars and lorry's, and the County Council don't seem to be interested in doing anything.

I guess that by burying their heads, they thin that if they ignore it for long enough, it will all go away

However most of these councils who claim to be dementia friendly, simply bury their heads and don't consider the fact that people with dementia and other Neurological illnesses, struggle to judge traffic speeds and distances 

Many drivers going through town centres never consider these people either, and just think that they are, silly people who walk across a road without looking.

I am sure that more needs to be done to ensure that councils take this on board, rather than simply saying they are becoming dementia friendly   

Tuesday, 4 April 2017

Emphysema and pollution

When I was diagnosed with Bronchiectasis I was confused about the causes, until I realised that it was caused by childhood illnesses like Whooping cough, measels, Mumps, etc

However the next diagnosis of Emphysema left me standing, wondering where I was, and what was going on, as well as wondering what caused it all

Yes I had worked in industry, but in the end the illness seemed to creep up very fast.

However it seems, that because I have Bilateral Bronchiectasis brought on  through childhood illness like Whooping cough etc,  as well as a Chronic Heamophilis Influenza bug inside my lungs, i was open to everything that was comng my way, while working in industry.

This is all confusing and hard to understand,  but when you have memory problems it causes havoc, because remembering to take all of the medication at the right time is causing total havoc

While I did smoke earlier in life , I did not smoke a lot, and stopped after a doctor told me that I would not live to see my children grow up.

That was enough for me to give up there and then.

Admittedly I was doing other jobs as college engineer,  such as working on oil fired boilers, which had to be serviced quite a lot.

The fumes and soot here were nasty, but it was part of my job and I accepted it.

Many buildings had asbestos panels in places too and I guess that it adds up.

However I now understand that's it's made much worse by things I worked with in years gone by,  like wood dust, asbestos, fumes, and pollution to name but a few.

Pollution is worse these days than it was ten years ago, however it should have been a lot better, but for incompetent Governments who refuse to accept the obvious

I must question whether garages etc, really test for pollution coming from cars or indeed trains and heavy goods vehicles these days.

I say this because it's been noticeable, the number of vehicles on the roads etc, which are pumping out pollutants, so how do these vehicles pass a test in the first place

There was also the VW scandal which faked emission regulations just to sell cars.  Everyone expected the Government to demand compensation but this never happened.

This was the only case we heard of, but I often wondered if other vehicle manufacturers faked emission tests and got away with it. Perhaps we will never know until it's too late.

It seems that everyone else in this country has to campaign for cleaner air, in the vane hope that someone inside the government will take notice and do something

I never ever thought that I would see the day when school children would be issued with face masks to help protect them from pollution.

Is it going to be a case, that our grandchildren children etc, will grow up with damaged lungs, through all of this pollution we are seeing these days.

I don't know about anyone else, but that thought frightens me, just the fact that we as a nation  could be poisoning the young children at school

Many schools also have busy roads running past them, and this is wrong.

To me it's time that the school inspectors measured the Polution around these schools, and forced Councils and the Government to do something positive about it.

These days like many thousands of other people,  i have to learn to pace myself, so we don't get overtired while trying to get on with a normal life.

However this is a struggle trying to pace myself, because my brain is telling me where I want to be, and it's not easy when you are sometimes gasping for breath.

While I have problems,  it worries me that our grandchildren will group up in a heavily polluted country, unless someone stands up and  try's something positive to clean this country up very soon

I have a Breezometer app on my phone and this alerts me when the air quality is getting bad.

Today while I was out at a garden centre with my wife, i realised that the air quality was starting to drop, because I was struggling to breathe, and the alarm on my phone kept going off.

When we got home the air quality had dropped to 36 out of 100, and I was gasping to breathe.

I can recommend this app to anyone who has breathing problems, because it gives you warning and allows you time to get inside where you can take it easy.

In this day and age we should not need gadgets to warn us about air quality, but sadly many would be lost without them

Monday, 3 April 2017

Dementia Cafe

I went to a Dementia Cafe in Barnard Castle and really enjoyed myself.

My wife had suggested that we go, as we were staying at our Holiday Static Caravan in Barnard Castle, and the memory Cafe was around a mile away.

I have been to many of these dementia Cafes, but always left feeling it was a waste of time, but this one was totally different.

I guess that it was different for a few reasons, but one reason was that everyone there  was so friendly, and ignored the fact that we were not really from the town. 

Most people we see around the town speak, and that's something I find unusual, these days.

But everyone we see going into, and out of the town centre treat us like locals, and either wave or speak as we pass.

This is what I call a very friendly town, and certainly a Dementia friendly town.

The town where  we live these days, has changed from the town I grew up in, and these days apart from neighbours very few people speak.

But the interesting thing about Barnard Castle, is the fact that there are lots of things going on for both carers and people living with Dementia, and that's a wonderful sign these days.

While many areas of the country,  are suffering from savage cuts, this area seems to be bucking the trend, and have lots of services.

I do think that this is down to the local staff and volunteers, who seem to be more switched on.

Barnard Castle has a slight draw back, like Chester le Street, and that's the high volume of traffic passing through

However I fear that the county council are ignoring the traffic, in the hope that it will all sort itself out, if they ignore the problem.

Whether we like it or not,  many people living with Dementia and other neurological illnesses struggle to judge traffic speeds and distances

It may be nothing to councillors, but it's life and death to a person living with this illness.

Durham County Council has always claimed to be dementia friendly, going back to when I spent a day in county hall talking to all of the councillors. But in all honesty I don't think that they are remotely interested.

However I really love being around Barnard Castle, seeing all of the wild life during the day, and hearing the owls in the trees outside our caravan every night.

I know that there are two owls most nights and it's so nice to hear, even if I am on my own, because it feels as if I am not alone.

I think they are Tawny and Barn owls, but I am not sure.

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