I confess that to write this took 6 weeks of hard work, and around 5 versions were written before I succeeded.
Later I was asked to make this public, simply because it was written by someone with the illness and not an academic, so after a lot of thought, I put it on my blog, which is read world-wide. I was then contacted by three American Clinical Teaching Universities to see if they could have permission to use it, and I accepted. It’s now also used in a Paris University as well as a Hospital in the Philippines. I also know that it’s used in certain places in the UK as a teaching tool.
So for a person who’s brain is going AWOL, I am doing my best to raise awareness of our problems and I will try to do more if I can, although my writing skills are disappearing faster than I want .
This blog now has around 15-000 readers in over 102 countries, simply amazing, when I started to write it as an daily online diary, and did not expect anyone else to be reading it, so this was a shock to the system. What is more I get daily comments from around the world.
These days I do put interesting news items on the blog to see if it generates interest in other countries.
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.
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 organisation.
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 hope for the future
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, what we enjoyed Life, including our religions, if in deed we are religious, our hobbies and things we get so much pleasure out of.
For me 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.
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 from this, learn that the person loved spending quiet time outdoors, visiting gardens. 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.
A good quality of life is something we all cherish.
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
When we moved back to the North East, 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.
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, and 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
I have also lost the ability to understand messages and e-mails, which was distressing, yet how many people would understand my dilemma.
We also see so many variations of each copy of books like the bible, many written in modern day language.
I do feel that many religions including our Church which is the "Church of England” are trying hard to attract youngsters into the church without much success, as they are not really interested, or don’t stay interested for long.
Yet the people who were the mainstay, in as much as they went regularly and paid more than their fair share of the church income, were being side-lined and in many cases forgotten. 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.
They say 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?
I have even heard of priests, who were not very interested in taking services in care homes, because they thought it was a complete waste of their time and money.
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, if you cannot get your sermon through clearly to the congregation in 10 Minutes, in a way they can understand it, give it up as you don’t know what you are doing.
Use old well known hymns etc., which allow people with the illness to take an active part.
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 King James Version of the prayer book, 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
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
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.
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 care providers should be alert to this possibility, and they should make contact with the spiritual and religious leaders within their community should the need arise.
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 once 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.
However there are many misconceptions about Dementia.
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
All things which help keep the 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 spoke up for them, without thinking and allowing the person time to speak for themselves.
But their actions did all of the answering, either 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
This has always stuck in my memory, and proved that they knew exactly what was being said, even though they could not speak.