How does dementia feel?

[Big Effort]

Dear All,

This will sound like a strange question, but I address it to those of you who have dementia and know it, as you are in the best position to answer it.

Mum has Alzheimers. We haven't told her as she really wouldn't want to be a burden to us and it was considered a suicide risk.

As a person who has studied psychology and having a mother with dementia, I would like to know what it feels like mentally/physically to have this condition. Are there symptoms? Tiredness? Depression? Irritability? When you are searching for a word or a concept, what is actually happening inside you?

I would like to be able to put myself better in her shoes.
Hope someone can help and describe their mental processes as they decline.
Wishing you a good day today,
Big Effort

 

[creativesarah]

i found "still Alice " by Lisa genova a real insight into how it feels and it took some fears away for me. I recommended it to my GP and she found it really useful

Myself somedays on a bad day my head feels as if its full of concrete
sometimes ricepudding! my Gp loves my descriptions

would your mum be up to using a nintendo I found its really helped and I have a tablespoon of codliver oil every night

somedays I feel very random today at the dentist it went like this

"How long have you had the filling out?"
me "I cant remember"
"When did you chip your front tooth?"
me "I cant remember"
"fill in this form and sign and date it"
me "what number is is?"
"31st"
me "what month is it?"
"July"
me "Oh I thought it was August, so what year is it?"

big sigh from me "Oh dear I'm not doing very well today am I "

fortunately most of the time I can laugh about it

 

[Big Effort]

Thank you so much for that, Sarah.
So, I can see that you are aware that you can't remember..... Mum doesn't seem aware of this. With her a conversation (just 5 mins ago) went like this:
She: "I see you wrote down I should write to X. Why?"
Me: "Because X emailed you yesterday, and I know you would want to answer him."
She: "You didn't tell me X emailed me."
Me: "Yes, I gave you a printout yesterday."
She: "No you didn't."
Me: I now never argue, insist or set her right.
I will print out the email again, give it to her, which she will lose. If she remembers and decides to answer, I then get to do all the work because she can no longer type, and her handwriting is illegible, and spellings are getting very childlike.

But your head does feel like concrete or rice pudding - there is a physical reaction to this forgetting. So is Mum just denying it so she can pretend to herself and us that all is well?

Hope to hear from others too. Hugs and thanks you Creative woman!

 

[Countryboy]

Hi Big Effort I think frustration plays a bit part in dementia , when you find you have difficulty carrying out tasks that you have done for many years and some times they maybe just simple tasks also in your thoughts you know exactly what you want to say but the words get lost between your thoughts and speech its at that point many dementia people will use swear words,, well I do anyway


tony

 

[Barry]

This is a very good question that I want to reply to ‘But’ I’m not having a good day as I feel lost in the clouds of doom and gloom which is just one of the many problems associated with dementia, hopefully once the clouds lift I can start tying again…

Best wishes
Barry

Ps: Just remembered try this poem I wrote some time ago and put yourself in the shoes of a person that has any type of dementia!! The Poem has since been published along with many other of my dementia poems…

As you read this place yourself in the shoes of a person who has Alzheimer’s or any other type of dementia…

‘Synonyms of Confusion’

Hypothetically
speaking, this is all much
the same, but place yourself
within my daily mental disarray,

Confusion, confusions, confusing a mind,
mystified, conundrums of dementia affray,
perplexity, perplexing, at my every thought,
bewildered in bewilderment, I wander astray,
puzzlement, as I can’t understand what you said,
uncertainty, now grips me as my confidence is dead,
baffled, as I can’t regulate or restrain anything that I do,
understanding, of my illness completely defies your days,
misunderstanding, what you said, so misconstruction prevails,
disorientated, unsettled, mixed-up, all at sea, now that’s truly me,
incomprehension, lack of understanding, blankness, at what to say,
disorder, turmoil, chaos, disarray, all part of the conundrum declining into,
Alzheimer’s disease…

Barry ©

 

[Barry]

This is my decline

Hi Claire

What does it feel like to have dementia? Well let’s put it like this! Delve down deep into the very depths of you soul and imagine your worst nightmare and you wont even come close to what any type of Dementia can do to a person or the person you new!

No there aren’t any what you might call symptoms as with a cold or the flu as dementia is furtive and just seem to creep up on you from behind without you realizing it, for some people it seems to hit them very hard right from the start and whether that has anything to do with a persons age is debatable, I know in my own case I started to realize I had a problem when I was 58 years old having seen the same thing with my late grandfather and then my late father-in-law, it was just like my mind was lost in swirling clouds and I noticed that I could not remember my recipes anymore and also kept forgetting that I’d put products in my oven for baking!

Yes I do still realize that I have dementia and can still tell what its doing to me as a person as in sometimes turning me into a person with a Jackal and Hyde personality, yet before the illness I was the most calmest of people with a sound logical mind!

There is a list of what they call the 7 stages of Alzheimer’s and Dementia but it doesn’t necessarily mean that every sufferer will follow the stages as listed since any type of dementia seems to affect each individual in different ways and at different stages of the illness progression, so yes tiredness, depression, and definitely irritability are all part and parcel of the illness so its not (as some people still seem to think) just a case of being forgetful.

At the moment with my own condition I’d say that my physical condition has deteriorated faster than my mental condition, sometimes when we go for our morning and afternoon walk I fell as though I’m wearing lead boots and it becomes an immense effort to put one foot in front of the other, this becomes worse at the end of the day when I start to (what’s called) “Sundowning” and the mind starts to follow the setting of the sun and drains every once of energy out of my body then added confusion sets in thick and fast!

Yes like Tony I battle with frustration everyday at not being able to practice my once loved profession that needed a lot of eye to hand coordination but know my coordination has got lost within a labyrinth of other dementia problems… imagine this Claire! You studied and now fully understand Psychology, well try to imagine how you would feel if all of a sudden all those years of studying and the knowledge you gained are slowly being eroded away out of your memory bank and that your mind is turning into an empty shell!

Many of us with dementia have speech problems that can manifest itself at any time during the illnesses progression although having said that (it doesn’t mean that every sufferer will have speech problems) I now have speech problems that Sumi said started about a year ago and has become progressively worse, ‘what happens’ maybe Sumi or someone will ask me a question ‘But’ when I go to reply the mind and voice becomes frozen and all that comes out is a slurred stammering, yes the words of a reply are within me but they wont come out which then makes me even more frustrated and bewildered and I often end up in tears, yes a grown man in tears… but that’s what dementia does to a person… and sometimes when I sit at the computer with all good intentions of typing I end up just staring at the monitor screen as any form of communication has got lost in the minds maze of bewilderment.

Sudden noises of any type cause me a lot of anxiety and I end up like a trembling frightened jelly, it can be from the daily noise from people talking, children crying, or even the passing traffic, I’ve also now become extremely insecure when left alone, you could say scared of my own shadow and I seem to see plenty of shadows and images that really aren’t there, and night times can be horrific from the terrible nightmares that have me screaming and lashing out my arms and legs in my sleep…

Well Claire that gives you just a brief look into my daily dementia mind, I said to your first thing this morning that I was having a bad cloudy day full of doom and gloom but we have to try and keep fighting this illness no matter how hard and stressful it becomes since if we give in then the dementia sneaks in further through the back door of the mind.

Without a doubt dementia is one of the curliest illnesses yet I still say I’m far better of health wise than many others in this world.

So please remember that no two people suffer from dementia in exactly the same way.

Barry

 

[Traceych68]

Barry,

I'm lost for words at your eloquence. I'm sure your words echo many sufferers feelings if only they could express them.

Thank you for the insight. Xx

 

[Purple Lady]

Barry,

Wow so succinct from a carer's perspective your words resonate with me as the observer, my uncle manifests the behaviours you talk of. Thank you for giving me some more insight into this cruel existence called Dementia.

My heart goes out to you, for your world to close like you describe is just so sad and yet inspirational in your tone, does the world open up any more possibilities ie do new things happen within your world or is it all down hill. I always thought that to some degree one would be blissfully unaware but that perspective is now changed. How do you cope.

I fear that as my father died of stroke and my Uncle has Vascular dementia that I to as his niece will go the same way. My communications skills are such that I would end up very depressed I think if this did befall me.

I hope this thread doesn't sound to me, I am the pin that holds my family together it would devastated my family big time.

Again thank you for your insight and I wish you all the best.

 

[Big Effort]

Thank you so much for replying.
I don't mean to be a voyeur, but as I study the human mind, and as I care for someone with Alzheimers, I want to get 'close' to the inner experience.

now have speech problems that Sumi said started about a year ago and has become progressively worse, ‘what happens’ maybe Sumi or someone will ask me a question ‘But’ when I go to reply the mind and voice becomes frozen and all that comes out is a slurred stammering, yes the words of a reply are within me but they wont come out which then makes me even more frustrated and bewildered and I often end up in tears, yes a grown man in tears… but that’s what dementia does to a person… and sometimes when I sit at the computer with all good intentions of typing I end up just staring at the monitor screen as any form of communication has got lost in the minds maze of bewilderment.

All of what you wrote, Tony, Barry, Creativesarah and other contributors, is of interest to me. I will read it again and again as I then look at Mum through new eyes. However this quote of yours, Barry, is a great starting point as I watch Mum struggle to produce words. I think this is a fair approximation of how Mum experiences it.

What amazes me is how socially competent she remains. She can't ask me the most simple thing, like saying she needs another litre of milk. Yet, last night, we all went out to a BBQ, with French people as we live in France, and she held court. So many stories, such reminising, such clarity of mind....... and she has asked me to teach her French. And, due to your eloquence, I can attempt to piece together this speech production - pause - pause - thought vanished - blank gaze - stammer sequence.

And your poem, Barry. One word: Wow!

Must stop now as we are going out, but wanted to say a big thanks to everyone, I know the effort is much greater than mine.

May today be one of ease and peace and happiness for you all. Thank you, BE

 

[Barry]

Hi Purple Lady

In your reply you asked “Does the world Open up for you with any more possibilities ie do things happen” well the very strange thing is that pre my illness of dementia I had liked or even read poetry “BUT” all of a sudden within my illness I found I could write poetry its as though it was hidden lurking in the back of my mind just waiting to materialize… and I’ve bee very lucky with have a lot of my poems published.

Below is one of my favorites that I wrote for my dear wife

Best wishes
Barry

Ps: you can find many more of my poems in the poetry section

Love’s Lament

My head lay cushioned, upon your silken breast,
Your tears of sorrow, caressing at my nape,
As the fingers of an angel, soothing my brow,
Yet the heart within you… was echoing out lament,

For those destined moments since set to one side,
As the confusions within me will not subside,
This illness of my mind, is just tearing me apart,
But this loving kiss… I can still place on your heart,

I’d dreamed of twilight years, walking hand in hand,
The romance of our love, defying the blossoms of time,
For the love in your heart, had been more than mere words,
Since you entered my life, with the tenderness of your soul,

Now as my being diminishes betwixt life and death,
Yet still comely unto my eyes, is your every breath,
So weep not a tear… for what you behold in your arms,
As my spirit will guide thee, ever steadfast and strong,

Then whence I lay my head upon the soft clouds of God,
Embalm my body… with every essence of your love,
Thus as your guardian angel, I shall forever oversee,
Until time doth come… for ye to accompany me,

Thence once more we shall enfold our undying love,
Never parting us again, with sorrowful lament…

Barry Pankhurst ©

 

[CollegeGirl]

Hi Barry and everyone

I've been reading this thread with great interest. I'm amazed, Barry, at how eloquent you are, your words are so very descriptive, moving and helpful.

What I struggle to understand, though, is how you manage to put your thoughts into words in this way - my mam, who has Alzheimer's, would never be able to articulate like you have done here. I know you said that sometimes the words just won't come when Sumi asks you a question. Is it different for you when you write, to when you speak?

My mam can barely write now, and using a computer would be absolutely impossible for her. So that option is not available for us, but I just wondered if, for you, there is a difference between what you are able to speak and what you are able to write? Is it easier to write?

With much respect and best wishes x

Edit - Barry has not replied to my post. Barry, I do hope I haven't upset you with my question? That wasn't my intention, I'm very touched by how you can describe your feelings and find it extremely helpful in trying to understand how it must be for my mam. xx

 

[Barry]

Many Thanks

Hi College Girl

Please don’t worry as you haven’t upset me in any way as I’m always ready to try and answer questions and especially if its helps other people understand our illness that little bit better…

In respect of me being able to put my thoughts into words I’d say this (It’s not easy for me and can take me an extremely long time to actually get my thoughts onto paper so to speak and even longer when there’s a lot of noise and distractions… so yes its equally as difficult with speaking or typing ‘but’ perseverance and determination can sometimes win the day as I will not ‘As Yet’ acquiesce to this illness

Barry

 

[Barry]

How sad

Hi Zong!
Please do not be offended by what I write but as a person that himself has mixed dementia (And I say this with the greatest respect) I find it extremely sad that you have had to move your Grandfather into a nursing home so quickly.
Just remembered that I wrote this poem a few years ago about being left alone!!

Barry

For a person who has dementia being left in another person’s supervision other than our spouse can sometimes prove to be very traumatic. This made me write this poem…

‘In Another’s Care’

Pray never leave me in another person’s care,
Of flesh and blood, yet not of our lives love,
In other people’s hands, that knows not of my ways,
And how distorted can be my wayward days,
For if you’re not here, you know I shall fret,
Confusions will reign, with who is this, and that,
A person I don’t know trying to take control,
Although it’s for your sake, that I doth understand,
Just time for respite, from my every beck and call,

But nothing will be right or done the way I like,
The food not the same from your loving hands and heart,
I shall endlessly roam the house calling out your name,
For the person taking care, will be no more than a face,
And you know I’ve lost rhapsody with strangers and speech,
Thus now I oft speak in a tongue with the devil’s vex,
But the carer on hand might not entirely understand,
Quickly sending my retorts into a weeping grave,
So please don’t ever leave me… in another’s care,
For my days are beguiled, just knowing you’re here…

Barry ©

 

[CollegeGirl]

Hi College Girl

Please don’t worry as you haven’t upset me in any way as I’m always ready to try and answer questions and especially if its helps other people understand our illness that little bit better…

In respect of me being able to put my thoughts into words I’d say this (It’s not easy for me and can take me an extremely long time to actually get my thoughts onto paper so to speak and even longer when there’s a lot of noise and distractions… so yes its equally as difficult with speaking or typing ‘but’ perseverance and determination can sometimes win the day as I will not ‘As Yet’ acquiesce to this illness

Barry

Thank you Barry, I understand now, that it takes you some time to write a post. I can see how that will work above speaking because once you've posted, no-one knows how long it's taken you to formulate and type it, it just sounds so eloquent and flows so well.

Thank you for your patience and kindness with me and my question. I'm so glad I didn't upset you. xx

 

[Redpoppy]

Barry's wonderful poetry

Barry your poetry should be published.It would help not only the person with dementia,but also their carer.My husband has vascular dementia diagnosed 2yrs ago,but had a stroke 6mths ago which affected his speech but thankfully not his mobility.At the moment his dementia is classed as mild/moderate and with the help of family nearby we're leading a pretty normal life for a couple in our 80s.
My best wishes are sent to you,and will be looking out for more of-your poems inn the future



As you read this place yourself in the shoes of a person who has Alzheimer’s or any other type of dementia…

‘Synonyms of Confusion’

Hypothetically
speaking, this is all much
the same, but place yourself
within my daily mental disarray,

Confusion, confusions, confusing a mind,
mystified, conundrums of dementia affray,
perplexity, perplexing, at my every thought,
bewildered in bewilderment, I wander astray,
puzzlement, as I can’t understand what you said,
uncertainty, now grips me as my confidence is dead,
baffled, as I can’t regulate or restrain anything that I do,
understanding, of my illness completely defies your days,
misunderstanding, what you said, so misconstruction prevails,
disorientated, unsettled, mixed-up, all at sea, now that’s truly me,
incomprehension, lack of understanding, blankness, at what to say,
disorder, turmoil, chaos, disarray, all part of the conundrum declining into,
Alzheimer’s disease…

Barry ©[/QUOTE]

 

[Big Effort]

Thank you to all you dementia sufferers. Your honest sharing of life on the 'inside' has helped me to relocate my determination to keep Mum at home for a while longer. It helped me rediscover the real person who often goes missing with all the strange ideas she has.

Tonight she told us she was "watching" some marvellous equestrian event in the Olympics. We all looked up from our meal, surprised as she only had access to radio. We all had a nice laugh at the idea of watching the radio. Then she laughed more and described what she 'saw'. Her descriptions of the dressage event were so convincing - yet we know she didn't watch anything. My husband muttered something about not being possible to watch the radio. "I can" she replied, and we all chuckled. At last we are managing to enter into the Alzheimer world - unlikely as it is - and have stopped trying to drag Mum into our reality.

The Mum of old would have hated life in an old peoples' home. I was fooling myself into thinking she would enjoy all the socialising. Your voices have spoken for Mum: I am her key person, the person who translates and makes sense of her ever-changing world. You are all right, she would mind very much going into a home. Now I am redoubling my efforts to find a work place that will help me keep her home for a while longer.

Wishing you all a good day today. Quiet, peaceful and content. All the best, BE

 

[creativesarah]

I watch the radio too"!!

 

[Sue J]

I think a lot of people do - isn't it called visualisation or something

 

[Barry]

Thank you

Hi Redpoppy and thank you very much for your kind comments, I'm sorry to hear about your Husband and like me his speach problems... this really is a terrable illness that affects both the sufferer and spouse.
By the way you can find a loy more of my poems in the poetry section of TP, if you go into my profile then you can click on check all past posts and you will finf the poems...
Best wishes to you
Barry

 

[LinnyLee]

Barry,

Your insight is so very helpful. I would like to share your poem ‘Synonyms of Confusion’ with others I work with at a long term care facility to help them better understand and care for those with dementia. How would I go about obtaining your permission to do so?

Thank you,
LinnyLee