“The loneliness and Utter Isolation within Dementia”

[Barry]

I know we all say the same thing in that “You’re never alone with this illness” which is true in respect of the number of people worldwide that have some type of dementia… ‘But’ it’s what I call the ‘Myself-Loneliness’ that can really drag me down to the pits of the earth and lose all my faith and fight for life…

Some day’s I will just sit on the terrace or sit motionless gazing out the window utterly lost in my own little world completely oblivious as to what’s going on around me as my mind has turned into a desolate wilderness of none-awareness, I sit gazing across the fields watching people working yet nothing is registering in my brain they just become hazy images… people can pass by me calling out ‘Hello Mr. Barry’ but again nothing registers in the brain their words just fall upon fallow ground… my dear wife Sumi might be speaking to me but she’s talking to an empty shell as I have no awareness of what she is saying… it gives you the feeling of almost like fading away from all your familiar surroundings with the vision of life before your eyes turning into a misty maze until you return to reality with a sudden jolt, other times I feel as though I’m standing on the edge of a precipice that’s trying to pull me in and any will to fight back against it to pull you back from the brink has gone, it’s got nothing to do with daydreaming, depression or anxiety, it’s just the utter loneliness and isolation of the illness at that moment in time that you can experience within the illness which is extremely difficult to explain to people.

Some days I sit at the computer with all good intentions of typing but the words just won’t come into my brain so I sit gazing at the monitor lost in my own little world of non-awareness as to what’s happening, Sumi might say to me (What are you doing, or typing) and I normally reply “I haven’t got a clue”

Some might say “You must fight against it” but how can you fight against something when you’re oblivious to it happening… or that is until you’re told about it… and it’s something that can become more frequent as the illness progresses… yet even though you try to prepare yourself mentally for when it happens again there is nothing you can do to prevent it from occurring… we are all fighting against an invisible foe that yields no remorse within the illness or the: “Myself-Loneliness and Isolation”


Barry…

 

[Grannie G]

I`m so sorry Barry. I wish I could say and do something more helpful.

 

[gringo]

My dear Barry, I have sat, deeply moved, reading your post, for some time, wondering what on earth I could say that would give you any comfort. All I can offer, is to say how helpful it is for someone like myself for the insight your post provides. I do hope you will manage to keep posting.
I sympathise greatly with your ‘Myself -Loneliness’ and wish you and Sumi the strength to continue facing your challenging problems.

 

[Grey Lad]

My dear Barry, I have sat, deeply moved, reading your post, for some time, wondering what on earth I could say that would give you any comfort. All I can offer, is to say how helpful it is for someone like myself for the insight your post provides. I do hope you will manage to keep posting.
I sympathise greatly with your ‘Myself -Loneliness’ and wish you and Sumi the strength to continue facing your challenging problems.

Thanks Barry for your post. Gringo has said what I would have wanted to say if I could have come up with the words. Please keep posting. G L

 

[Rageddy Anne]

You tell about it so well, Barry, and I feel so sad for you. It may help you to know that your post makes me more aware of how my husband must be feeling, so perhaps i can find the right things to say when he's feeling desolate. It's beautiful the way your love for your wife shines through, and what a dear person she must be. Please give her a hug from me!

 

[Barry]

Thank you all my friends for your wonderful thoughts and words. Yes my dear wife Sumi and our granddaughter are my much needed strength, I'd be lost without them
Barry

 

[Lindy50]

Oh Barry, I am so sorry you are going through this. Thank goodness for Sumi and your granddaughter....

Your post is so moving. As others have said, I hope it will help me to understand how my dear mother feels. She too often sits and stares. She has a window with a lovely view of trees, allotments and the village church, and this seems to be of some solace to her. Your description of being in a misty maze seems to fit her too.....only today she said she couldn't follow what I was saying, as she was in her own world.

Thank you so much for posting, Barry. You give people like me some insight into the true feelings of a person with dementia.

I hope you find the strength to continue posting. We need you, Barry.

Love, Lindy xx

 

[technotronic]

Technotronic

Hello Barry

Your description of how it feels for you, must be how it feels for my wife who's been suffering from Early Onset Dementia for the last 3-4 years, which leaves her feeling confused, easily upset, unaware of things and things she's doing most of the time, with a feeling of why me, why am i like this n why's it happening to me all the time, and a feeling that she wishes she was dead.
As you say its hard to fight against something that you don't know is happening, or happens to you without warning until you are brought back to reality for a short while.
It's not easy for those that do not have Dementia to understand fully what those suffering from Dementia have to go through each second of their lives, or how hard it can be, the feelings that you go through all the time and the feelings of hopelessness it can leave you with.

Your posts help to give us 'outsiders ' a view into what life is like for you and hope that you will keep on posting as long as you can.

John

 

[Barry]

Thank you my friends I am pleased that this helps with understanding

 

[Countryboy]

Hi Barry hope you ok I take it you have your computer back again now , just been reading your thread again well written and an important subject , Barry just like others with dementia we have both experienced similar issues and this is one of them Buddy I have had this myself I spoke to my Consultant about years ago he said unfortunately this can happen epically in a condition like mine Frontal-Lobe I also had another issue loss of sight now that was a bit scary had an emergency visit to Option and was told it was migraine blindness so unfortunately with both of these issues I put behind me , maybe you should see your Consultant , I attaché some info about seizures for others to read not every one with dementia can explain it to their families
*********************************
In simple partial seizures a small part of one of the lobes may be affected and the person remains conscious. This will often be a precursor to a larger seizure such as a complex partial seizure. When this is the case, the simple partial seizure is usually called an aura.
Simple focal seizure
Simple partial seizures are seizures which affect only a small region of the brain, often the temporal lobes or hippocampi. People who have simple partial seizures retain consciousness.[5] Simple partial seizures often precede larger seizures, where the abnormal electrical activity spreads to a larger area of (or all of) the brain, usually resulting in a complex partial seizure or a tonic-clonic seizure.[6] In this case they are often known as an aura.

Presentation
Simple partial seizures are a very subjective experience, and the symptoms of a simple partial seizure vary greatly between people. This is due to the varying locations of the brain the seizures originate in e.g.: Rolandic. A simple partial seizure may go unnoticed by others or shrugged off by the sufferer as merely a "funny turn". Simple partial seizures usually start suddenly and are very brief, typically lasting 60 to 120 seconds.[7]
While awake some common symptoms of simple partial seizures are:[5]
• preserved consciousness
• sudden and inexplicable feelings of fear, anger, sadness, happiness or nausea
• sensations of falling or movement
• experiencing of unusual feelings or sensations
• altered sense of hearing, smelling, tasting, seeing, and tactile perception (sensory illusions or hallucinations), or feeling as though the environment is not real (derealization) or dissociation from the environment or self (depersonalization)
• a sense of spatial distortion—things close by may appear to be at a distance (micropsia or micropsia).
• déjà vu (familiarity) or jamais vu (unfamiliarity)
• laboured speech or inability to speak at all
• usually the event is remembered in detail

When the seizure occurs during sleep, the person will often become semi-conscious and act out a dream while engaging with the environment as normal, and objects and people usually appear normal or only slightly distorted, being able to communicate with them on an otherwise normal level. However, since the person is acting in a dream-like state, they will assimilate any hallucinations or delusions into their communication, often speaking to a hallucinatory person or speaking of events or thoughts normally pertaining to a dream or other hallucination.
While asleep symptoms include:
• onset usually in REM sleep
• dream like state
• appearance of full consciousness
• hallucinations or delusions
• behavior or visions typical in dreams
• ability to engage with the environment and other people as in full consciousness, though often behaving abnormally, erratically, or failing to be coherent
• complete amnesia or assimilating the memory as though it was a normal dream on regaining full consciousness
Although hallucinations may occur during simple partial seizures they are differentiated from psychotic symptoms by the fact that the person is usually aware that the hallucinations are not real.[7]

 

[Tin]

Dear Barry, Those before me have said it all. Have you seen the MacMillan Nurses advert? Although it describes how cancer suffers may feel, it also can be how people with Dementia feel at times. Thank you for getting your thoughts down on paper and sharing.

 

[Barry]

Hi Barry hope you ok I take it you have your computer back again now , just been reading your thread again well written and an important subject , Barry just like others with dementia we have both experienced similar issues and this is one of them Buddy I have had this myself I spoke to my Consultant about years ago he said unfortunately this can happen epically in a condition like mine Frontal-Lobe I also had another issue loss of sight now that was a bit scary had an emergency visit to Option and was told it was migraine blindness so unfortunately with both of these issues I put behind me , maybe you should see your Consultant , I attaché some info about seizures for others to read not every one with dementia can explain it to their families
*********************************
In simple partial seizures a small part of one of the lobes may be affected and the person remains conscious. This will often be a precursor to a larger seizure such as a complex partial seizure. When this is the case, the simple partial seizure is usually called an aura.
Simple focal seizure
Simple partial seizures are seizures which affect only a small region of the brain, often the temporal lobes or hippocampi. People who have simple partial seizures retain consciousness.[5] Simple partial seizures often precede larger seizures, where the abnormal electrical activity spreads to a larger area of (or all of) the brain, usually resulting in a complex partial seizure or a tonic-clonic seizure.[6] In this case they are often known as an aura.

Presentation
Simple partial seizures are a very subjective experience, and the symptoms of a simple partial seizure vary greatly between people. This is due to the varying locations of the brain the seizures originate in e.g.: Rolandic. A simple partial seizure may go unnoticed by others or shrugged off by the sufferer as merely a "funny turn". Simple partial seizures usually start suddenly and are very brief, typically lasting 60 to 120 seconds.[7]
While awake some common symptoms of simple partial seizures are:[5]
• preserved consciousness
• sudden and inexplicable feelings of fear, anger, sadness, happiness or nausea
• sensations of falling or movement
• experiencing of unusual feelings or sensations
• altered sense of hearing, smelling, tasting, seeing, and tactile perception (sensory illusions or hallucinations), or feeling as though the environment is not real (derealization) or dissociation from the environment or self (depersonalization)
• a sense of spatial distortion—things close by may appear to be at a distance (micropsia or micropsia).
• déjà vu (familiarity) or jamais vu (unfamiliarity)
• laboured speech or inability to speak at all
• usually the event is remembered in detail

When the seizure occurs during sleep, the person will often become semi-conscious and act out a dream while engaging with the environment as normal, and objects and people usually appear normal or only slightly distorted, being able to communicate with them on an otherwise normal level. However, since the person is acting in a dream-like state, they will assimilate any hallucinations or delusions into their communication, often speaking to a hallucinatory person or speaking of events or thoughts normally pertaining to a dream or other hallucination.
While asleep symptoms include:
• onset usually in REM sleep
• dream like state
• appearance of full consciousness
• hallucinations or delusions
• behavior or visions typical in dreams
• ability to engage with the environment and other people as in full consciousness, though often behaving abnormally, erratically, or failing to be coherent
• complete amnesia or assimilating the memory as though it was a normal dream on regaining full consciousness
Although hallucinations may occur during simple partial seizures they are differentiated from psychotic symptoms by the fact that the person is usually aware that the hallucinations are not real.[7]

Thanks for the input Tony with some good information and YES I do have my computer back, In_fact I sent you an E-mail to tell you the same day I got it back so that must have gone into cyber space or AWOL, LOL

 

[Barry]

Dear Barry, Those before me have said it all. Have you seen the MacMillan Nurses advert? Although it describes how cancer suffers may feel, it also can be how people with Dementia feel at times. Thank you for getting your thoughts down on paper and sharing.

Thank you Tin

 

[Effy]

Barry,
I've just read this thread and I'm so sorry for my lack of practical help here, but I want you to know how deeply moving your post was and how much I am hoping with all of my heart that you are keeping as well as possible and that you and sumi and your granddaughter are staying strong.
xxxx


Sent from my iPhone using Talking Point

 

[Barry]

Many thanks Effy

 

[Sue J]

Dear Barry

Thank you for this thread and as always, saying it as it is.

I experience this often too and am perplexed how I and you obviously can record or speak of things that happen during these times e.g. you recollecting that people call out to you but you are unable to respond. For me, I finder it harder that people can't then see where I am and pull me back from the precipice, worse still when others can't seem to recognize I am even in another place. The not knowing when it will happen nor how long for is what makes it so very hard.

Tony's post too is very useful information and thank you Tony for posting it. Also Tin's post struck a chord with me. I do remember when I first became ill seeing such an advert and feeling the same but at the same time feeling sad that the level of help and understanding for dementia sufferers is far behind that of cancer sufferers. I still have no official diagnosis because no-one has really understood the devastating effects this has on me, and in the absence of that I neither have the energy or ability to seek a diagnosis alone that may rock my world even further with wrong or mistaken interventions.

TP is the only real source of understanding for me but I do wonder how as things progress will even this be an option for me.

I hope you don't mind me sharing on your thread but I can always identify with what you write but am not always able to express it as you are.

Hoping and wishing this weekend, and going forwards, is a calm, peaceful one for you, Sumi and your dear granddaughter.
Suexx

 

[Barry]

Thank you for your reply Sue and I'm sorry that you also have the same problems, try to get a diagnoses as the sooner that your can have some sort of confirmation then the sooner your doctor could put you onto some specialised medication
Best wishes
Barry

 

[Margarita]

Hi
Barry

I found something that you worte to me years ago.
When I was caring for mum

My son had pass away . I shared it on Talking point.
I read it last night after browsing back into the past in my minds eye.

Now for the life of me I can't remember how I found it while also browsing on the internet.
It was just what I needed to read .
It was so touching emotionally, so heart felt.

“Eulogy for Margaritas son Anthony”

‘Oh’ Margarita, ‘Oh’ Margarita and family
How could we ever express our heartfelt grief
For your loss is far more than a tragedy


That not even Shakespeare could convey into verse,
When we enter into this world we are all unknowing
So our parents teach us honesty, wisdom and faith
Not just a faith in God, but also that in the human race,
As we battle with all of life’s daily adversities
We overcome them with the tenacity of fight
Yet we still can’t see into our life’s journey
Or around the corner where there is no light,
If only we could foresee into our future
To know when the devil knocks at our door,
Though some might say ‘Twas just misfortune’
Or to have been in the wrong place at the wrong time,
Yet that brings no comfort to the grieving
Who just wanted to see their Son’s life unfold,
Yes our thoughts and prayers walk with you
As Anthony ascends with angels up his stairs,
Though the anguish will eternally be with thee
For Anthony’s memory shall ever linger on,
So our arms are out stretched to you in solace
For truly “no parent should have to bury their child”

Rest in peace Anthony

Barry in Indonesia June 2009, a sufferer of Alzheimer’s/QUOTE]

Yes our thoughts and prayers walk with you/QUOTE]

Which reminds me of how in that time . I carred all my Talking friends around with me in my mind.
When I went to ID my son, then mum
Also along those first few years.

Hope in your loneliness and Utter Isolation within Dementia . When your wife brings yourself out of yourself with a touch, hug.
Your remember margarita all you're Talking points friends, telling you that your never really alone or in Isolation, because you have us .
(Even if you dont perceive it like that in your own personal perception)

Just like I had with you all.

Sending you loads,loads of love .
Thank - you for being you xxx

 

[Barry]

Hi
Barry

I found something that you worte to me years ago.
When I was caring for mum

My son had pass away . I shared it on Talking point.
I read it last night after browsing back into the past in my minds eye.

Now for the life of me I can't remember how I found it while also browsing on the internet.
It was just what I needed to read .
It was so touching emotionally, so heart felt.

“Eulogy for Margaritas son Anthony”

‘Oh’ Margarita, ‘Oh’ Margarita and family
How could we ever express our heartfelt grief
For your loss is far more than a tragedy


That not even Shakespeare could convey into verse,
When we enter into this world we are all unknowing
So our parents teach us honesty, wisdom and faith
Not just a faith in God, but also that in the human race,
As we battle with all of life’s daily adversities
We overcome them with the tenacity of fight
Yet we still can’t see into our life’s journey
Or around the corner where there is no light,
If only we could foresee into our future
To know when the devil knocks at our door,
Though some might say ‘Twas just misfortune’
Or to have been in the wrong place at the wrong time,
Yet that brings no comfort to the grieving
Who just wanted to see their Son’s life unfold,
Yes our thoughts and prayers walk with you
As Anthony ascends with angels up his stairs,
Though the anguish will eternally be with thee
For Anthony’s memory shall ever linger on,
So our arms are out stretched to you in solace
For truly “no parent should have to bury their child”

Rest in peace Anthony

Barry in Indonesia June 2009, a sufferer of Alzheimer’s/QUOTE]

Yes our thoughts and prayers walk with you/QUOTE]

Which reminds me of how in that time . I carred all my Talking friends around with me in my mind.
When I went to ID my son, then mum
Also along those first few years.

Hope in your loneliness and Utter Isolation within Dementia . When your wife brings yourself out of yourself with a touch, hug.
Your remember margarita all you're Talking points friends, telling you that your never really alone or in Isolation, because you have us .
(Even if you dont perceive it like that in your own personal perception)

Just like I had with you all.

Sending you loads,loads of love .
Thank - you for being you xxx

Dear Margarita
Its so lovely to hear from you and I must admit that I have forgotten about that poem and the tragedy but then your words and reading the poem that I wrote for you and your Son Anthony at that time made the memory of that time rush back into my mind.

I'm sure that the scares of those past days are still understandably with you but try to be strong of heart and thank you for your own thoughts about me and Sumi. We are both OK and I am still fighting on

God bless you and again many thanks as I had lost that poem so will copy and past it into my files

Barry xx

 

[Margarita]

Lovely to read that you Sumi are Ok . you are still fighting on.




You have such a talent with words.
Next time a customer at work ask me
“ how are you”
I shall tell them I am "fighting”

Gland you understand that the scars of those past days are still with me .
Sometimes I even forget that!

Somedays are Just a struggles to survive those flash backs of memory.
I try to be positive use words like challenging myself, use my imagination to remind myself how when in those deepest low moods while having to sort everything out I used a life skill of tools “ My imagination” .
I thought back then, that my talking point friends where all in cloud I could fall back into to catch me while I was low in moods.

I keep getting a repeated memory of walking down the road to the coroner’s office to ID my son .
Which I never new was down the end of my road .
Someone stops in the Car calls me over to hand me a Box full of flowers.
Which was from a collection from Talking point friends.

I keep getting flash backs of that time
I understand its down to post traumatic stress disorder symptoms How the mind deals with traumatic memories.
Which reminds me I have to ring the person up who use to come to my house, as I never finish the session with her.
Dealing with multiple emotions can be exhausting.

It's exhausting all those past
Subconscious memories coming into my present waking moment of consciousness .
Even memories of my dreams pop into my waking consciousness.
Stress is a bummer

Take care see you around talking point love to you both