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

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

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

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 f...