Sunday 8 November 2020

Dementia and our spiritual needs

 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

“HOPE”


Monday 5 October 2020

REM and sleep disorders

Sleep disorder linked to Parkinson's

Thursday 29 July 2010

“Kicking and lashing out while asleep could mean you’re more likely to develop dementia or Parkinson’s disease,” reported the Daily Mail . It said a study has found a link between a sleep disorder and a higher risk of certain types of dementia up to 50 years later.

The study looked at people diagnosed with one of several related neurological conditions and analysed their history of a severe form of REM sleep behaviour disorder (RBD), a condition in which people can act out recurrent dreams and move excessively while asleep.

The study was not designed to look at the strength of the link between RBD and dementias, as patients in the study were selected because they were known to have had both of these conditions. Therefore, it is not possible to say from this study whether restless sleep is a predictor of future dementia as is implied in the newspaper headline. More research into whether RBD could be an early sign of the brain changes that lead to dementia later on would be useful.

Where did the story come from?

The study was carried out by researchers from the Department of Neurology at the Mayo Clinic in the US. The researchers received several individual grants and awards. The study was published in the peer-reviewed medical journal Neurology .

The Daily Mail has concentrated on the theoretical link between a group of neurological conditions and this sleep disorder. Previous research has indicated that there is some association between the two, but the strength of this relationship is unclear and, at this stage, RBD cannot be used to predict later disease.

What kind of research was this?

The stage of sleep in which your brain activity increases and when dreaming may occur is known as rapid eye movement (REM) sleep because, during this phase, your eyes start to move quickly and flicker.

This research looked at the association between a sleep disorder called REM sleep behaviour disorder (RBD) and a group of neurological conditions including Parkinson’s disease, multiple system atrophy (MSA) and dementia with Lewy bodies (DLB). RBD is a sleep disorder where people act out recurrent dreams and move excessively while asleep, and in this study injured themselves or their partners as a result.

To investigate this, the researchers used the records from a specialist neurological clinic of 27 patients who had been diagnosed with RBD and then went on to develop degenerative neurological symptoms at least 15 years later.

The researchers confirmed the diagnoses of RBD and analysed the records to define the types and timing of diseases and symptoms the patient developed. They used these data to calculate the length of time between the first sign of restless sleep and the diagnosis of a range of dementias.

This was a case series analysis in which all the participants were selected because they had both conditions. As such, it cannot demonstrate a link between the conditions as there was no comparison group. However, the researchers refer to previous research that they say has demonstrated this link. They say that the first study to document this relationship reported that nearly 40% of patients with isolated, idiopathic RBD developed a parkinsonian disorder an average of 12.7 years later. This current study was mainly interested in the question of whether the length of time between RBD and dementia could be even longer than 12.7 years.

What did the research involve?

Some patients with these neurological disorders have reported that their first experience of restless sleep happened many years previously. The aim of this study was to explore a theory based on this anecdotal evidence that RBD symptoms can predate Parkinson’s disease by several decades.

The researchers were interested in a range of conditions thought to be caused by abnormal deposition of a protein called alpha-synuclein in the brain. These diseases included Parkinson's disease, dementia with Lewy bodies and multiple system atrophy, which are all neurodegenerative diseases that appear later in life.

The researchers used the Mayo Clinic’s records to identify all patients who had been evaluated for these diseases between 2002 and 2006. They then selected all those who had a history of RBD and for whom there was at least 15 years between onset of RBD and their neurodegenerative symptoms. To be eligible, patients also had to have been assessed by a specialist in a sleep lab and by at least one other neurological specialist in the Mayo Clinic’s behavioural neurology or movement disorders sections.

RBD was diagnosed if abnormal flailing movements occurred during sleep, with sleep-related injuries or movements that were potentially injurious or disruptive. Symptoms of physical activity during sleep were provided by the patient and bed partner. Patients were then divided into probable and definite RBD. The numbers of patients with the different disorders were counted, and the interval between RBD and symptom onset for the neurological disorder recorded.

What were the basic results?

The researchers identified 550 patients with RBD and one of the three neurodegenerative disorders of interest.

Of the 550 patients, 27 (4.9%) had first started experiencing RBD more than 15 years before the onset of neurodegenerative disease symptoms. Of these, 13 had developed Parkinson’s disease, Parkinson’s with mild cognitive impairment or Parkinson disease dementia. Another 13 had developed probable dementia with Lewy bodies and one had developed parkinsonism-predominant MSA.

Most of the patients were male (24 [89%]). The average (median) interval between RBD symptoms and neurodegenerative syndrome symptom onset was 25 years (range 15–50 years), and the median age at onset of restless sleep was 49 years.

How did the researchers interpret the results?

The researchers say that their cases add a new time dimension to theories on the evolution of neurodegenerative syndromes characterised by alpha-synuclein deposition. They say that, until now, the estimated interval between changes in the brain and disease onset had been about 5-6 years, but this study suggests that it may be longer.

Conclusion

These findings suggest that the brain changes associated with certain neurodegenerative diseases could begin many years before the symptoms start to show.

There are a few points to note about this study:

  • This study was not set up to evaluate the strength of the association between RBD and neurodegenerative disease, and it does not shed any light on how many people with restless sleep go on to develop neurological conditions.
  • The study only looked at a few specific types of dementia and not the more common Alzheimer’s or vascular type of dementia. As such, these findings are even less applicable to people concerned about the more common dementias.
  • These participants had a very specific form of severe sleep disturbance, involving lashing out and characteristic brain wave patterns during their sleep. Many people will have the occasional restless night of sleep, but most are unlikely to have RBD. The results of this study are unlikely to apply to them.

In general, this study provides some insight into these rare conditions and will be of interest to doctors, scientists and the public. The results should not be interpreted to mean that restless sleep can be used to predict future dementias or neurological diseases.

Analysis by Bazian
Edited by NHS Website


Sunday 4 October 2020

Difficult times

Trying to stay positive through this virus has been very hard, even though i have my wife  to look after me. I know that I  have hit the bottom  a few times, and its not easy trying to cope. 

I guess its because I feel like a caged bird and don't know how to cope  with everything that's going on around me, because its all so very different, so its not in my comfort zone. 

But having said that, the government  keep changing the rules every week, and no one seems to understand what they are doing.

I do think that people with dementia are being ignored and left to find their own way, which is totally different to the  last session.

When we last had quarantine quide lines where everyone knew what they were allowed to do , and what not to do, it was so different, but slightly helpful. 

People living with any form of dementia, have no guide book to work from, so when your brain does its own thing, and  its a case of trial and error. As I have said before, I feel as if I am no longer in charge of my brain, its doing its own thing all of the time.

The thought of going back into yet another lockdown did not appeal at all, and its a bit frightening, as many people are ignoring the rules.

I am also struggling to cope with my sleeping problems at present, as my graphic dreams and nightmares are back, and its frightened my wife on a few occasions, because she has to cope with the nighly horrors,  and if she tries to help, she then becomes part of the horror.

Last week I was close to tears, as I had hit my wife a few times during one nightly session, and I find this very unnerving to cope with, especially when I  have no idea that I  have done anything.

 I know that I have anger issues these days, and this too is frightening because I have no idea what is causing it. 

Whether this is all linked to the constant news about the virus or the illness, i have no real  idea, but its very distressing.

I don't always listen to the national news because its all about the virus, where the local news is different on ITV. 






Friday 4 September 2020

Not in control

Over the last few months I confess I have not felt myself, I do feel as if someone else is controlling my brain and life. 
It's a bit frightening, but I have been to some dark places recently, and have struggled to sort myself out. 

My wife thinks the virus has made everyone feel a bit depressed these days and it's this making things worse.

Whether it is true or not, I just don't understand, but these days I feel totally on edge and not in control of my life. 

I know that wearing a face mask is causing a lot of upset, as I get my glasses and hearing aids tangled up, but also to my brain i guess the mask is something which should not be there. 

I feel more confused and struggling to cope, especially when it comes to wearing a face mask when I go out, and this is causing more stress, but I guess I have have to accept this and move on although it's not easy. 

However one of the most difficult things, is trying to work out and remember what the date and day are, as it's all blending into one these days.

I know I am not alone, but I wish things could get back to normal again 

Saturday 22 August 2020

Problems thinking

Over the last months  I confess that l am struggling to get my brain into gear, but I think since my last chest infection dragged on a long time, its hit me harder.

This can lead to many different problems, from trying to understand clearly what is happening and what is being 

Covid has become a nightmare to me due to my memory problems and walking etc. My foot drop is getting worse these days, and I am starting to find walking a bit if a problem although I try to push myself too far. 

As well as this wearing a face mask has also become a nightmare, as my brain is telling me its a foreign object which must be go rid of.

This in turn is adding breathing problems with me bilateral bronchiectasis and Emphysema. 
I tried to go out without the mask but got so much abuse I had to try to wear it again. 

These days of having to wear a mask is causing extra problems for me and I guess many others too. 

When I remove my mask usually end up removing my glasses and hearing aids too, as they have all become tangled up 

My hearing aids came apart one day and I lost a battery somewhere, and my glasses have been very close to falling on the ground, but my wife usually grabs things as they fall,which is lucky for me.


 





Tuesday 11 August 2020

its it's been a long few weeks

It's been a long few weeks, although I was l pleased that I did not have covid, just a bog standard chest infection, if that can be called bog standard 

My memory  and thoughts have been hammered through all of this, and I confess that it's been quite  worrying, not fully understanding what is going on.
 
I think I have been sleeping like the dead too which is frustrating as I am dropping off very easily, and can be out for an hour or more.

I have a reclining chair, but these days it's not easy to breathe when I am reclining, so it's a case of learning to adjust the chair to a better angle, and sometimes have a pillow behind my back. 

Coping with normal life during this Covid virus has been difficult to say the least, but the hardest part has  been getting used to wearing a face mask. Both my GP and Respiratory nurse said that i had to wear one, and its been very hard, but I need to be active so its got to be done if I want to go into a shop. 

As well as this, I found that even though I have breathing problems, and struggle to wear a mask, I was getting too much abuse when I went out shopping without a face  mask. So after talking to someone in Boots pharmacy, I found a mask that was bearable and easier to cope with. 

Life goes on and I can only hope that this virus moves on before it gets well out of hand 

Wednesday 29 July 2020

Feeling Rough

After a battering from a chest infection which did not clear, and sputum test which was supposed to be clear, I was referred back to the doctors yesterday, where I had a series of tests done including one to check that I did not have the Covid infection. 

I confess that I struggled to cope with wearing a mask let alone having the Covid tests done, and seeing a doctor and respiratory nurse all done up in PPE was a little frightening, a bit  like something from a horror film, even though I knew both of them. 

I was told that sputum tests can be confusing, and as it was pointed out yesterday, what is normal when your lungs are wrecked. Luckily for me the person saying this, has a lot of experience as her daughter has the same problems. 

I don't feel as if I have this horror, but these days you can never tell as this Government keep changing the symptoms etc, all of the time. But hopefully I will get the pass results on Friday. 

I was sent home with some very strong antibiotics, which killed the chest infection last year,  so hopefully they will work again, although they seem to hammer the body in the process.

The last infection I had in June seemed to give me more thought processing problems,   similar to those I vaguley remember after I had viral pnumonia in 2001. I had problems finding my way to work, and could not remember my computer passwords etc, then lost the ability to remember my electrical training, and that finally finished my job as an engineer. 

I found that to be frightening, and this last episode was very similar, and I guess that's why my wife pushed me into seeing a doctor as a precaution. 

My memory is bad enough these days with getting infections like this 

Since I have Bronchiectasis and Emphysema,  I have been checking my oxygen levels at home since this virus started in March, but over the last few weeks, I noticed a drop which was a little frightening, so that was another reason to see a professional. 

I also have something called an Heamphilis influenza bug living in the bottom of my lungs, and its this which causes so much trouble as it cannot be killed off.

As my dear daughter has said on many occasions, I need hanging upside down by my feet so that my lungs can drain out. I know she is only kidding, but this does get distressing at times trying to remove the rubbish so I can breathe properly again. I have exercises for this, but they don't always work. 

I have not been on social media very much during the last two months simply because I am terrified of writing the wrong things, or misunderstanding what I am looking at. 

He tiredness is terrible and can drop off to sleep at anytime, i guess I have never known anything like this before, and sometimes its very hard to stay awake.

I only go out for short walks round our local park and this is usually when its very quiet, which is not far from our front door, and this keeps my legs going and also means I am getting some fresh air away from the woodburning stoves in our area. 

Friday cannot come fast enough now so that I know what I am up against, I just want to get my walks back again. 


Sunday 12 July 2020

Trying to cope with writing etc

When things went wrong at work, I realised to my horror that my writing was not as it should be and it was distressing

All order firms were written out by hand, and I was starting to make a complete mess of them because I was changing for small case to capital letters without realising what was going on, this meant that many order forms were no longer usable.

Over the last few weeks things have got worse and it has reduced me to tears on more than one occasion,when doing things like birthday cards etc for my wife.
Although she is understanding, it really does not help me, and I find it all very distressing looking back at it.

It's very strange because I have no idea what is happening, or what causes this.

It's a bit like numbers, if I look at them I get the wrong idea, of what I am looking at, and something repeat a number, but it comes out all jumbled up, because the numbers are in the wrong order.

Friday 12 June 2020

Recovering from yet another chest infection

Two weeks ago, I felt drained and chest, and then my wife realised last week that I had another chest infection, I confess that it did not feel too bad, but I have been caught out by this before, and there is no way I will go into hospital during this crisis. 

I should have gone in at Christmas due to an infection, but I told the doctor that i as not going, however she did agree that I would get better faster at home in my own environment.

I understand the antibiotics by a drip, can be faster, but as I tend to act out my dreams and nightmares while sleeping, I would simply pull the thing out of my arm,  so it's something, to consider.  

I am prone to repeated chest infections, due to the fact that I have Bronchiectasis and Emphysema. The Bronchiectatsis  was something that developed when I was a child, after a bout of whooping cough, measles  and mumps. That I guess wrecked my lungs without anyone knowing, and that was made worse by a life working in industry.

Life is interesting and certainly not boring, but  I guess the one thing that upsets me is when doctors etc, ask if I am stressed or depressed, yes I get stressed,  when I don't remember how to do things, or I feel rough and can't get out for a walk etc, but that's not depression and these people cannot accept this

However these chest infections cause many other problems, which have an effect on my memory etc. Like the pneumonia I had around 1990 this one has had an effect on my emotions,  thoughts and memory  etc, and it's been an uphill struggle to keep going. I guess it's because I feel so shattered, dropping off to sleep quite a lot, and unable to think clearly. 

This was highlighted last week when I saw a money raising idea for charity, on facebook, and  after looking for my favourite charity, the Lewy Body Society,  I found that I had started  the thing going without realising what I had done. 

In some ways I am pleased to help raise money, but this gave me a big shock, however it seems to be doing alright. 

Both my wife and daughter, say they know when things are building up like infections, by the change in me. I understand that I get very tired and sleep a lot, but also irritable, because I dont see or understand fully what is happening at times.

It's cut my activities down and I have to take it easy for another week at least. But I am back on gentle exercise again so that will help to get me going again. 

I am a terrible patient at the best of times, and struggled the last time I was ill in hospital but at home I can at least do odd things without getting into trouble. 

I am hoping that my spelling is alright, as it's taken my three days to work this out. 



Sunday 7 June 2020

Carers

Caring for someone  is a role which is totally ignored by Governments, because they simply don't care enough to support them.

A carers role is 24 hours a day,  7days a week, and they are saving the British Government millions of pounds each year, without any support from social services etc. 

Our carers get us through a lot during the day, from sorting out medication, arranging  medical appointments, cooking our meals, washing especially as many washing machines are too technical to understand these days, looking after us, taking us to places in the car etc, as well as dealing with documents which no longer make sense, or are difficult to understand. This list is too long to write and think about. 

In my case, as well as Lewy Body Dementia, I have lung problems to put up with, like Bronchiectasis, something i have had since i was a child, along with emphysema from years to working in industry, as this all makes life difficult.

This in turn means I am prone to recurring chest infections, with is stressful at times. Through this my wife has to sort out antibiotics etc, a d to be honest I have no idea what medication I am on,  I just take what is in the box. Although I occasionally forget to take my medication if my wife is out. 

However both my wife and daughter can tell if I am going down with a chest infection by my reactions and agitation levels. 
But where would we be without our carers  because we rely on them for so much  and they in turn have a lot to put up with  in a job they never considered when we got married,  and they are not trained to do, or supported.
God bless all carers around the world, they really are Angel's 

Saturday 6 June 2020

Something to make us laugh



I read this article when I was at the last Balance clinic in Chester le Streeet General Hospital Durham. It was in a newsletter written by the North Durham Parkinson's Society.

Yes I know that this is a serious topic  but, I keep looking at this and it keeps me laughing,





Tuesday 2 June 2020

Supporting the Lewy Body Society.UK

Are you considering a charity fundraising event in the future, or considering doing something positive as a New Years Resolution, if so why not consider supporting the Lewy Body Society.

Charity events run throughout the year, and range from small family events to large local or national events, so please think of this wonderful charity if you want to do a charity run etc.

As an Ambassador with the Lewy Body Society, I would like to encourage people to support us in any way they can

This is a small charity which is totally dedicated to those living with or  caring for someone with  Lewy Body Dementia in the United Kingdom 

We need all of the support we can get, so we can promote the charity, in the hope that we can get a higher profile for Lewy Body Dementia, and also for those living with this form of Dementia and their carers,  within the UK. 

So if you are considering doing a sponsored event for a wonderful caring charity, please come and support this wonderful charity, which does so much to help those with this form of Dementia, within the UK

If you are unsure what the illness is, or need to know more about it, why not look at our new video about Lewy Body Dementia, which is on our website. This was filmed this year and it's now doing it's rounds on Social Media under Lewy Body Society. Org. UK 

    The more people Who Know, The Fewer People Who  Suffer

The Lewy Body Society
Hudson House
8 Albany Street
Edinburgh
EH1 3QB
Telephone 0131 473 2385
Email : info@lewybody.org
Press enquiries lewybodypress@gmail.com

Friday 29 May 2020

Lovely holiday in Scotland





Just before the lockdown, we had a lovely holiday in Scotland, in the Trossachs area, which was somewhere we went for honeymoon back in 1972.

I have no idea where we had stayed back then, but it was bed, breakfast and evening meal in a farmhouse, somewhere area the Stirling holiday

We always said that we would love to go back again, as its where our married life started off, but I guess I was worried because the virus was starting to get a grip of the UK

This time instead of the Ford Cortina car it was a tour coach, which was more relaxing, and the weather was lovely.

This time we stayed in Aberfoyle at the Rob Roy Hotel and had an amazing time with some lovely people, who were lively at times.

We went for a day trip to Sterling Castle, somewhere we visited on our honeymoon, although last time we were there we followed a snowplow, which was interesting, as I had been working in Scotland at the time, I was used to driving in the snow












I found the Castle to be stunning, and although I did not go-round with the guide like my wife, I wandered around myself and enjoyed myself


This time we went to visit the Kelpies, something that Janice was desperate to see, however, it was closed at the time, but we got a close up of them.

However, they can be seen from some distance away, including the motorway



After this, we moved on to the Falkirk wheel which was fascinating to see, both from the land and onboard a visitor boat.







Saturday 23 May 2020

Taking things for granted

As  this virus progresses we start to miss many things, we took as normal, but in many ways it could be said that we took it all for granted.

Going out for exercise and enjoying meeting people while we were out. 

Seeing the family, and having cuddles with the grandchildren, and it's getting harder. 

We saw my son and his family last weekend, but they were outside the garden,and that was so hard for us both seeing them go and not having a hug, cuddle kiss. 

Going shopping, in newcastle, and having a coffee and scone in John Lewis  or Mark's and Spensors. Or going to Costa for a coffee.

Missing to our Static caravan in Barnard Castle, our second home, where I feel so relaxed, and the air is so much cleaner. So clean that once we have unpacked, I usually go straight to sleep no matter what time of day it is.

Going for a haircut on a regular basis, something I like to do, as my hair has a mind of it's own.
I was missing having a haircut, as i looked , like a shaggy dog. But my Son Mark came to my rescue and cut my hair. For an Electrical Engineer he did an amazing job,and my wife says it looks better than it does after I have been to a professional barber. 
Janice said he looked terrified when he was cutting my hair, but he did it and I was proud of him for helping. 

We all take things for granted. 







Monday 18 May 2020

keeping active during the lock down






Trying to remain active during the lockdown can be very hard through all of the restrictions, but I guess the physio session from the Respiratory Rehabilitation service over Christmas was very helpful

While this was going on, I was walking to and from the local hospital which helped quite a lot, but now the walking has been restricted, it is becoming difficult. 
Because I am not walking as far, I am starting to drag my right leg and foot but i guess this is  down to the weakness on the right side of my body 

We don't have a big garden, so I can't walk around that, and walking around our houses, is a risk because people are parking their cars on the estate, so they don't pay parking charges, but life goes on, and we have to fight it.

I have some small weights at home for exercises, which I use, daily to strengthen my muscles,  help with my breathing, and also have an exercise bike, but I am finding that my left leg is doing the hard work. 

No one seems to know what happened, as I was always right-handed, but now the  left side of my body is much stronger than the right,  and this causes problems, and also causes coordination problems these days 

During one scan, there was evidence of a TIA but did not know anything about it, so perhaps this was the cause of the weakness on one side etc.

Some time ago I tried swimming but found that due to coordination problems, I was swallowing water every time I moved my arms, so I would be better off as a submarine. 

Keeping active has to be a good thing all around, but each day is different, so it's  a case of taking each day as it comes 



Wednesday 13 May 2020

mixed messages during lockdown




After a long absence, my wife suggested I tried to write my blog again, in the hope of getting me going again during this lock down.

I am using speech notes again to get going again. 



I confess that  I am struggling more and more, to cope with this lockdown these days and a lot of this is all down the mixed messages from the hospitals etc, all of which tell me to do different things, and this can be difficult to take on board at times. 
That's without the Governments mixed messages, some of which make no sense at all these days.

We tried to get a delivery from supermarkets, but we had problems because some will only deliver what they want, rather than what is needed. 

Due to diverticulitis,   I am struggling to eat certain forms of bread, and I can only get what I need at certain shops, and this makes it more difficult.

Because of this, my wife uses the early morning slots at the supermarkets to get our food, but most supermarkets including Tesco are not sticking to the times set aside for the elderly etc, and are just letting anyone in.

She did manage to get a delivery slot from Morrison's two weeks ago, but this is not due to arrive until the 18th of May. This proves that the Government's arrangements for home deliveries are just a lot of " wind "because these supermarkets don't have the vans or staff to cope with 

 I am finding it hard to sit in our front garden, because of wood-burning stoves in our area, and people smoking weird things, all of which have an effect on my Bronchiectasis and chest, but I guess I am not alone with this, but while it's hot, I do wonder why people have the need to use wood-burning stoves on. 

I know that I am not supposed to go out, but I found that my legs were giving up, so we decided to do a short early morning walk in the hope of keeping my legs moving. I have also started to drag one leg, which makes life difficult, but I need to try to remain active for as long as possible.

With all of the conflicting information being sent out, it's becoming a nightmare, understanding what I can and cannot do, while trying to keep control over my emotions and patience.


One hospital letter said that we should,

Use a different bedroom to others, in other words I am not supposed to sleep with my wife anymore.

We should cook our meals separately from others, and take them to our own room.

Use different towels etc, to everyone else. While we use different bath towels, we tend to use the same hand towel in the kitchen, because if I am honest, I would forget which was which. 

Minimumise the time we spend with others, especially in places like the kitchen.

If I was to use the spare bedroom, as my room, I would go round the bend. 

Not only that, but if I have to eat in my own room, with my balance problems, I would end up spilling or wearing the food etc.

My wife is my safeguard when I have graphic nightmares, so how would she cope, I guess in the present situation, she would struggle even more.

I would also need to use a separate bathroom to everyone else. However as we only have one bathroom and shower, what happens next.

As you can imagine, this is all a nightmare waiting to happen.

When you are living with all of  these medical problems you need someone like a carer to keep you on track

Not only that but my wife is not just my carer and advisor,  companion, driver, and cook, "as I can no longer cook without burning things, because I simply forget that I had put something on the cooker. 

She does the washing because I don't understand the washing machine.
But without my wife ho is my carer, I would be lost and would soon get into a total mess


My memory and thoughts are up the creek too and this has a knock-on effect, on family life, etc and I know that my nerves are on edge a lot of the time.

Trying to work things out has become difficult, at times, and I no longer read books, because I am not really interested partly due to the fact that I forget the gist of the story and who the characters are.

I have taken to doing more brain games in the hope of keeping going, although I confess I am becoming more agitated than normal, which does not help anyone at all 


Saturday 9 May 2020

Struggling to cope


After struggling to cope with the lock-down, my wife suggested that I started to write my blog again, so using Speech notes, in the hope it helps me to keep going.


  
When I started to lose my memory I was told to set up a routine and try to stick to it. This was fine unless I am somewhere different or when conditions totally change.

This coronavirus has really caused problems to many people, including myself because i enjoy fresh air, and walks, yet according to the Government guidelines, I am now told i have to stay inside, or sit in the garden, something that feels very strange.

 If I sit in the garden we get fumes for nearby wood-burning stoves and this affects my throat and lungs, so I decided to go for a short walk around the nearby local park when it is quiet. I tend to keep well away from everyone else, apart from my wife, so it's fine, as long as I don't touch anything.

Now the medical profession is telling me that I should just sit in the garden, and not go to the park.

I confess that when the medical person rang up yesterday I forgot about the wood-burning stoves, so I did not mention this. Am I the only one who finds the fumes from wood-burning stoves feel as if they are burning my throat and lungs?

Between this government and the medical profession, I no longer know who to believe, or what advice to accept as they all say different things. 

I have since had another letter telling me that I should sit in a different room to my wife, "I should prepare my own meals and then take them to my own bedroom"?    In other words, I am no longer allowed to sleep in the same room, let alone the same bed as my wife. 

I have had Bronchiectasis since I was a child, and my lungs are in a mess as I also have Emphysema,  but my wife accepts this, so why change now.

I have to question all of this, because, carrying food, etc upstairs to a separate bedroom is not easy when your balance is up the creek, so I would end up either wearing my food or spilling it on the carpets. Not a well thought out idea. I guess it's fine if you live in a bungalow, but we don't. 

What happens to those who live in a one-bedroom house etc, thanks to this Government bedroom tax, which hit people with disabilities hard, as well as their carers. 

My wife was also told not to go out shopping, but to order food directly from shops as per government guidelines, which sounds good. But in reality, we cannot get into register with a store, because they don't have any delivery spots left. 

Not only that, but you are restricted as to what you can have in some stores, so as I also have a diet through my diverticulitis, it's never going to work, as much of the stuff including the bread on the list would cause problems.

Through this lockdown, my legs are getting weaker because I am not getting out for exercise and although I have an exercise bike that really is not helping.

This Government has made a total mess of all of these guidelines because they are not thought out properly at all, and as I said before, all of the letters I received are telling my different things.

I know I am on the Government list to be cautious and to stay in for safety, but in reality, they have not made life easy to understand or cope with.

I think that if I had to be confined to the house for another month or so, I would slowly go round the bend.  I am finding it all stressful enough, and my poor wife has taken the brunt of this when I lose the plot, but it's all down to losing my routine, something I cannot cope with. 



End of the blog

After giving it a lot of thought over the last few months, I have decided to finally stop writing this blog now This is for a few reasons, b...