SALFORD `YOUNG’ DEMENTIA SUFFERERS LEFT IN LURCH BY AUTHORITIES
|Star date: 10th October 2016 |
WHILE £MILLIONS POURED INTO DEMENTIA, OTHERS OUT IN COLD
"We're left with nowhere to go, no roads to turn down and it's a lonely, lonely place..."
On Saturday night, twenty people went on a Dementia Walk that raised around £200 specifically towards research at Salford University for people suffering with Moderate to Mild Cognitive Impairment (MCI), or `very young dementia' as it's known.
While £millions are being poured into the treatment of older people's dementia, and rightly so, MCI sufferers are being completely ignored, says the Walk's organiser and MCI sufferer, Gill Whiteley... "They just tell you `It's your fault' and leave you high and dry" she says.
Full details here...
Today is World Mental Health Day and last Saturday night twenty brave souls went on a three hour Dementia Walk through Weaste Cemetery to raise around £200 for research into the illness – even though £millions are being poured into the
Salford Memory Assessment and Treatment Service, or MATS.
So why was it necessary on a cold, dark night to have a torch-lit procession to raise what is peanuts against the total budget in the city for dementia care? Indeed, health money is the only funding in town at the moment...
"I have to question where that money has gone because they're not making the process from diagnosis to treatment any easier" insists Gill Whiteley, who organised the walk
"Where is that money going?" she asks "Is it painting fences, paying for new lighting? It's not going on the patients that need it."
Indeed, a Salford Clinical Commissioning Group (CCG) report notes that some MATS money is being spent on "refurbishment of premises", as well as `post-diagnostic support offered to patients and carers, relationships with GPs and other services...'
It matters to Gill because she herself has Moderate to Mild Cognitive Impairment, or MCI, which is a condition involving problems with day-to-day memory amongst other things.
"We class it as very young dementia" she explains "I was diagnosed with it 18 months ago and there's no help given or offered, nor advice. We're left with nowhere to go, no roads to turn down and it's a lonely, lonely place.
"They come to your house, they do the tests, you go through all the rigmarole, MRIs and all the scans, then they come and tell you `It's only MCI, it's not really dementia and it's all your own fault because it's down to your lifestyle choices'" she adds "I question that. Sometimes you're a victim of circumstance, sometimes you're beaten around the head; how can you be responsible for that and how can they say it's your lifestyle choice? It isn't.
"It's something that's affected you, that you were unaware of" she says "But they just leave you high and dry with `It's your own fault' and walk away, and don't contact you ever, ever again."
It's something that was picked up in the last Quality Care Commission (QCC) report on Salford's care. While praising changes and improvements to dementia care services, the report notes that "We were told it was difficult obtaining assessments and the right assessment for people with lower level needs. The result could be people disengaging or not getting the support they needed to avoid crisis..."
Gill is fighting to change that. She herself knows of 62 women in Salford, aged fifty to sixty years old, who have MCI and have, she says, had no support.
"They don't know what to do, the doctors just ply them with anti-depressants because they are depressed because they are not getting the help, and that masks further development of either dementia or Alzheimers" she explains.
Through her endeavours, Gill is going to be a guinea pig at the Salford Institute for Dementia at Salford University, while also becoming an associate of the unit.
"It's a little known cause in Salford that doesn't get a lot of publicity, so all the money raised today will go to them, specific for Salford – for Moderate to Mild Cognitive Impairment research" she says "This is the second year we've done the Walk and it's worth it for the cause..."
Amongst those down at Weaste Cemetery on Saturday was Gill's daughter, Tonie, who was looking after cars and guiding people along the route... "I'm here to support my mum" she said "It's a brilliant cause because it's looking to find a cure for dementia, and every little donation helps."
The QCC report on Salford's health care notes that "the prevalence of...dementia...is significantly higher than the England average". As funding is thrown, quite rightly, at severe dementia care, MCI seems to have lost out completely. Hopefully attitudes will change...
* The Salford Star contacted the Salford Memory Assessment and Treatment Service for a response but no-one returned our call
To donate to Salford University's Institute for Dementia giving page – click here
For more information see Gills Walk for Dementia Facebook event page - click here
Wednesday, 19 October 2016
Tuesday, 18 October 2016
Dementia and the spiritual needs of the person with the illness
When I was first approached to do this talk, I had looked at the title quite a few times, as it is a subject which to me is very difficult to put into words, especially when you are living with dementia.
For inspiration I looked on the internet to try to get some answers to a subject which, in some cases causes a lot of upset.
However I must point out that this is my own version of what this topic means, and it should never be assumed that everyone else is the same.
There are over 120 variations of this illness, and no two people are the same. We are all individuals, on individual journeys, and therefore each person’s spirituality is totally different.
But here we go and I hope I get it right.
Spirituality, leads to a purpose in life, in the things we value, and what is more, gives us all “Hope” as without it we would be lost
It’s not tied to any religious belief or tradition, although culture and beliefs can play a part in spirituality, every person has their own unique experience and journey
However to lay people like myself Spirituality is something which can be difficult to define, and analyse, but it is generally understood to mean, feelings or beliefs related to the search for meaning and purpose in life.
In this day and age it may or may not include a belief in a higher power (such as a god or several gods) or the supernatural world, as each person searches for meaning in life in their own way, but spiritual beliefs, usually bring together ideas about ourselves, our relationship with others and with the world.
Religion is closely linked with spirituality, but the two words mean different things, a person may have an active spiritual life without considering themselves to be religious or being involved with a religious organization.
When I was first diagnosed as having dementia, I lost my job as an engineer, a job I had held for 30 years, along with my home which went with the job, as I was on call 24 hours a day. Then a few days later my Mother died. At that time, I felt as if I was going to lose everything in life.
Yet something kept me going. My “FAITH” and that little word “HOPE”
What is more I may have dementia but I still have a good idea as to what I want from life and what I expect from others.
So where do we start
Most people these days are encouraged to write their life story, once they have been diagnosed with dementia, although this is better done in the early stages of the illness.
This life story tells the reader whether it is a family member or a member of nursing or care staff, who we are, and where we came from, what we did in life, who we married, and who our grandchildren are.
It should also take in things like, what we enjoyed in life, including our religion, if in deed we are religious, our hobbies and things we get so much pleasure out of.
However my own life story took off and took on epic proportions, as the gates opened and the memories flooded back, usually at times when I could not write them down.
But staff and carers may learn from this, that the person loved spending quiet time outdoors, visiting gardens, etc. In this situation, the care provider should work hard to facilitate access, to this type of environment.
Only with time can care staff come to understand what a person is trying to say and to grasp the expressions – so often non-verbal – that have a possible spiritual meaning. This includes encouraging care staff to take an interest in the life story of the person with dementia, and make links to possible spiritual needs.
However as the brain disease progresses, we are unable to do many of the things we loved doing, before the illness started, and this in turn changes the way we see things and changes things like our taste.
This story should take on board the changes we come across after the diagnosis, and many people forget this, simply don’t understand it, or put it down to the person with the illness being awkward.
To many around us it may seem as if we are trying to change the rules, but it’s our brain which has changed, and that on its own is very frightening to us when we realise, what is happening to us.
How many times have you heard a carer or fairly member say that the person with dementia has stopped eating certain foods, or does not want to do something they have done for years prior to the illness?
Many think we are being stubborn or awkward, but it could be down to the changes in our brains
Yet there could be a very good reason for that as I noticed, and it was a shock, when the changes were noticed.
I was always what some could call old fashioned in what I ate, if we went to a Chinese restaurant, I would never ever, eat a curry but would have a steak.
These days, I could eat anything including Chinese and Indian Curries, every day without being tired of it, that’s if I was given the chance, what is more, the hotter and spicy they are the better.
So what happened after the diagnosis to allow these changes to occur, I simply don’t know, but my taste in food has changed completely?
However some people have been known to revert back to foods they ate as children and that could be a shock to family members alone including our loved ones who are acting as our carers.
My tastes in music have changed completely too, as before I was happy listening to classical music and some pop music, but now like many of my friends with dementia, I like rock music like Freddy Mercury and Queen, along with other artists like Eric Clapton? Very Strange
My political views seem to have changed too which to me was a total shock, but it’s safer not to go into that one.
So if this happens it has to be taken on board, it’s simply not good enough to say that the person has always liked this and that’s what they will have or do. In many ways I am not the same person that my wife married in the 1970s, and I am not alone, once this illness gets you.
Before this illness I could never stand up and speak, the mere though used to make me shake with fear, and that was before I got anywhere near to standing up, now I spend a lot of time giving talks, so am I the same person that I was before the diagnosis, certainly not
However one thing which has never changed is this.
I love watching nature; I love animals and birds etc., and delight in watching all creatures in world today. However it is vital to find out more about the unique individual who has dementia, and about their preferences, and then find ways in which the person can be spiritually nourished.
I also like photography, although my use of the camera settings is very, hit and miss, these days, but the results can be interesting, as a friend with dementia living in Scotland said once.
He was very good at one stage, and now through his insight into dementia, he has been able to show established photographers that people with dementia see life in a vastly different way to the rest of the world. This gentleman now has photographic exhibitions in Scotland.
However there are many misconceptions about Dementia.
That this illness is age related?
So what about the thousands of people under the age of 65 who have a diagnosis of dementia
There well over 16,000 people under the age of 65 who have this illness, some in their 30s.
People with dementia cannot speak, or take an active part?
People with dementia are unable to get involved
These are all things which help keep this horrible stigma which is attached to dementia alive.
How wrong can they be, and perhaps this is why many places, care homes, religious places, etc. are not encouraged to make things easier for us to get involved
Please remember that these people may not say a lot, but their actions speak volumes.
I always remember seeing people with Alzheimer’s disease at meetings, they rarely said much, perhaps due to pressure of getting things right in their minds.
In some cases their wives or family spoke up for them, without thinking and allowing the person time to speak for themselves.
But their actions did all of the answering, nodding, smiling or giving a thumbs up in agreement, or shaking their heads or hands when they disagreed.
They still had feelings, ideas, of what was happening, and what is more they still have a sense of purpose and the meaning of life, along with that small word with a big meaning HOPE.
This has always stuck in my memory, and proved that they knew exactly what was being said, even though they could not speak.
A good quality of life is something we all cherish, and this should be encouraged among those who have this illness, and those who care for us.
I used to get a lot of pleasure going to church until this illness started, then I found that I could not remember the Lord’s Prayer, something which was horrifying at the time. So I changed services at the church where we lived in Oxford, as it was much quieter, which allowed me to think, and it was more personal
I had been a Christian all of my life with a strong belief, although I was not a regular attender at church because I was on call 24 hours a day, and did not want the pager to go off in the service.
Eventually after losing my job, we moved back to the family home in North East, where I was re-diagnosed, as the first hospital had lost my notes within those three months.
I was given medication which allowed me to think a bit clearer, and after a while I started to remember most of the words, which was marvelous, until I started to go back to the church I was brought up in.
It was then that I realised that the words I had learnt, bore no resemblance to the service, as they used a different format at each service, and what was worse, was the fact that they had started to sing it rather than say it.
I suppose the main thing to remember is that, although I was used to being able to understand many big words at work, old and new, I don’t always know what they mean these days, so many words used in services these days don’t mean a lot
My main problem was that I had lost the ability to sing and read words when I was in church etc., and I also had problems singing hymns and psalms, as I took time to remember the tune, but could not tie the tunes to the words, and even today I still struggle. Yet each service was vastly different and there seemed to be so many variations of things like the Lord’s Prayer that I started to wonder what was going on, as this was making my life difficult to keep up with.
I also have problems with my hearing which at times is acute, and this meant that I could hear other people talking most of the way through the service when I was trying to concentrate, so I was missing large parts of the service.
Not so many years ago, people would have had more respect and would have remained quiet, so that others could hear what was going on. But that is now gone and no matter where you are, there is always someone else trying to get their point across, rather than let people listen to the speaker. These days life is made harder by the mobile phones, which always seem to go off when you are thinking
This acute hearing is so bad at times that I can hear a conversation at the other end of a railway carriage, but struggle to hear what is said by the person sat next to me. Some may say that this is selective hearing, but it’s very distressing at times because I don’t wish to hear what other people were doing last night, as it’s embarrassing.
I have also lost the ability to understand things like messages and e-mails, which was distressing, yet how many people would understand my dilemma. I sometimes read them three or four times, and this usually gives me a different answer each time, so in the end I have to ask my wife what it means.
We also see so many variations of each copy of books like the bible, many written in modern day language, and this all adds to confusion, when you have an illness like dementia.
However these days, I do feel that many religions including the "Church of England” are trying hard to attract youngsters into the church at the expense of the elderly and those who have dementia, and I find that very upsetting as to many people with dementia their religion means so much
They are the elderly and those with neurological illness. However I do feel that churches etc., should take on board that, the older generation were taught these forms of service when we were young, and these constant changes help no one.
Some Clergy seem to think that those in the care homes don't sing or say their prayers so why bother? So when these priests go to care homes, they find that those with memory problems do not know the words and loose interest, however Lay people who use traditional Lord’s Prayer and Psalms get responses.
So do these people really know why people with dementia and memory problems, are in care homes, and what is more important do they understand the basics of our illness.
I did think this was because they had forgotten one major factor, and that is people, as they get older and those with early onset dementia, remember the services they were taught either in church, chapel or at school assemblies.
They should also remember that we don’t want long winded sermons, because we all lose interest, but make it short and to the point, and use the scriptures where needed.
As our old Canon used to say, you need to get your sermon through clearly to the congregation in 10 Minutes, in a way they can understand it. I think this is the same for most things these days, don’t confuse us with too much; make it short and to the point.
However one day in sheer desperation I sat down, and after many days, I had written a letter to a Bishop explaining the problems associated with neurological illness and changes to church services, included also was my problem of sleep patterns.
I did this because I was misguided enough to believe that a Bishop would be sympathetic and understanding, but what I shock I got when I got his response. He more or less told me to get up on a Sunday morning, and go to 8am Communion, where they used the Book of Common Prayer, and I would have no further problems.
He obviously did not take on board that I have sleep problems with very graphic and distressing nightmares, which can go on for over an hour and some nights more, and then usually go into a deep sleep around 5am as I had told him.
This made me understand that many in society do not understand dementia so we must make allowances for them even though it can be hurtful, but through perseverance we will educate them all about the illness in time
But life as we know it changes when you get this diagnosis
When a person receives a diagnosis of dementia their spiritual and religious beliefs may be shaken or even lost, as the person asks, ‘why me’, what have I done to deserve this illness, and carers should be alert to this possibility.
On the other hand some people with dementia and their carers may develop a new or renewed interest in faith and religious practices, when they are faced with crisis.
Hope can bring meaning in a person’s life and help them face difficult times without despair.
It is future orientated, and experiencing hope, provides strength to cope with painful and stressful events, such as receiving a diagnosis of dementia.
Many of us, live in hope that the medication, we may be taking may help improve our condition or even cure us. Many like myself have prayed for a cure, and this helps us to hang on to our beliefs
Finding hope is a means of coping with this illness, and what is happening to our lives, and professionals need to be aware that even when hope is unrealistic, people must find their own way to make their own meaning.
However not everyone can speak, so we have to make allowances for everyone.
Most people with this illness also feel very isolated and alone at times, even when we have family around us, but this is because we cannot explain ourselves at times, or get the right words out and this is distressing.
Sometimes my brain goes blank and I cannot think about anything clearly.
Sometimes the words just flow but in the wrong order, and that puts a different meaning on what we were trying to say.
Some people like myself panic when being asked a question on the spur of the moment and the wrong words flow.
I was once accused of being angry when I was asked a question, but that was totally wrong. I just went into panic mode and said what I thought was right, but I was wrong.
So please allow us time to think slowly before answering your questions, and never answer your own questions, as that is very rude and patronising.
Spatial awareness also plays a major part in each of our lives, and must be remembered, so please respect that because things can go wrong if you get too close at the wrong time. Sometimes we just need a little bit of time in our own area, without anyone coming in and disturbing us, and this is our comfort zone.
Nightmares are horrific and sometimes difficult to wake up from. If you see anyone having one of these, please talk quietly to the person but never get too close because otherwise, you could become a part of that nightmare and end up being hurt, as my wife once found to her horror
I do think these days that life moves far too fast for those with this illness and it’s difficult to keep up, especially when you have fixed ideas in your brain.
As well as that many people simply don’t understand this illness and just push it to one side, so we must now change people’s attitudes and views on dementia then we will certainly become a dementia friendly society. We are getting there, but it needs a bigger push to get most if not all of society onboard.
Through all of this I have realised that those of us with this illness, struggle to keep up with what is a very fast life these days, and as a friend in Indonesia says,
It seems like a swan going up stream in a river, on the surface it seems to be keeping up with the water, but under the water, its legs are going flat out to keep up.
In other words we all look normal on the outside, but our brains are going flat out to keep up with what is happening around us on a daily basis.
But please remember
We still have feelings, ideas, of what was happening, and what is more they still have a sense of purpose and the meaning of life, along with that small word with a big meaning
Friday, 14 October 2016
Over the last few years we have heard about the so called NHS Computer system, which allows the patients medical records to follow the patient.
The idea being, that no matter where you were within the UK, our records could be accessed by any doctor or consultant in the UK
Millions of pounds were spent on this, yet it still does not work.
Many people blame the doctors, but I do wonder if the blame lies within the Department of Health,
It is said that the system was a failure from day one, but like may people I do feel, that it's the Department of Health officials who changed the system so much, that it had no chance of succeeding, or it was done on the cheap
Now we have ended up with a complete shambles.
It's not the first time that I have gone for a hospital appointment to find, that my records were either missing, or they were not accessible by the consultant who was treating me
I gather that another reason for this problem, is down to the failure of different hospital trusts sharing a patients information with others
This leaves me asking what really happened to our beloved National Health Service, which used to work so well
Obviously those people working on this system care little about the patients who go to appointments only to find that their records are not there
Not only is this unforgivable, but to me it shows that these officials really don't care about our health service, nor do they care about the stress they cause.
This means that the patient has to repeat themselves at every appointment, and have your carry a list of their medications with them to every hospital appointment, simply because it's not on the system
This came to a head recently when I was sent to see a chest consultant.
We were given the choice if three hospitals where I could see a consultant.
So we chose the first one on the list, thinking that thus would move things on faster.
But when we arrived we found that the consultant could not access my records or the recent chest xrays.
Things have got to such a state now, that I have had a new appointment to see a different chest consultant at a local hospital, so it will be interesting to see if he can access my records and xrays
I live in hope that things will improve before long
Tuesday, 11 October 2016
These days it is not so easy for people with dementia or memory problems to retain the spiritual beliefs, as many church leaders are simply not interested
I always remember a curate at church telling me, that it was a waste of his time going into care homes, because those living there were not interested and just went to sleep while he was there
What he meant was, they were not interested in his modern forms of service, because they were brought up with the old forms of service, using old well known hymns and prayers.
I think with his sermons, many people would have lost the will to stay awake as they were long winded and boring
I personally found this comment to be a total insult, because he simply had not got a clue as to how he could react with these people, but apparently, this is the modern church..
Church leaders these days consider the word spirituality to mean 100% religious beliefs and nothing else.
But in reality a person's spirituality these days, is about who the person is, and how they want to be treated, along with what they enjoy so much in life
This is something I spoke about a couple of years ago at a conference, and it was well received, although it took me nearly a month to get it clear in my head before the event, because spirituality means so many things, to different people these days
If I can find it, I will repost it later.
Yes they may be very religious, with one form of religion or belief, but like many people I was brought up with the older forms of service and enjoyed this way of life .
These days there are many groups being set up by and for people with memory and neurological illnesses, who are interested in retaining their religious beliefs, and are supported by clergy from one domination or another, or can be done in short by reading from a book
One such book is one that I have at home and is called
Worshipping with Dementia
A book that I mentioned to the curate that I wrote about before.
This book contains
Meditations, Scriptures, and Prayers for people with dementia and their carers
The book was Edited by Louise Morsels.
This covers scriptures and short sermons, and not long winded ones as we hear in churches these days.
It should get remembered that many of us do not have the attention span we used to have, and many of us simply switch off after a while
What is more, I know that like many others, my memory is total rubbish these days, and if I don't write something down fast, it's gone for hours or sometimes days, before I remember it again
I always remember the Canon at our church, when I was in the choir as a boy, telling the congregation, that if a priest could not say what he wanted with 10 mins, he simply could not do a sermon and was in the wrong Job?
His idea was that a sermon should be short and you the point, otherwise people would drift off to sleep with boredom.
This is one thing that many clergy simply forget when doing services in care homes etc, because they are not trained to cope with the elderly, or those with neurological illnesses any more.
I hope that one day churches will realise that the elderly are in many cases more important than the younger people, because they have more complex needs