Dementia The horrors of this disease

Norrms

Registered User
Feb 19, 2009
5,631
0
Torquay Devon
Dementia
The Horror of this Disease

As I sit here with heavy heart and even heavier eyes I wonder if, or when, this nightmare will ever end? The last few nights have been horrendous as hour after hour I am shouting, screaming and having the sort of night terrors you would only see if you are over the age of 21years old and have a very strong stomach, last night was no exception, but actually worse. It wasn’t in intervals of hours, but minutes and started within ten minutes of closing my eyes, only finishing when I screamed out so hard this morning I had to get up at 6.45am because enough was enough, not only was it not fair on my “Angel” wife Elaine, but my mind and senses could take no more of this torment!!

And tormented is what I am, my soul is tested to the limit because of my Lewy Body’s type dementia, my body aches because of lack of sleep and my mind has started to become foggy and muddled because of the incessant flashbacks I keep getting after the nights of Hallucinations and night terrors. This is how it really is my friends, what you see sometimes is a laughing, smiling, cheery bloke where nothing bothers or affect him. Truth is?? Sometime I feel so broken inside, I feel as if I am dying slowly and am unable to do anything about it. I look across the room in the evening at my beautiful wife and I can see how tired she is, far more than me, and all I want to do is to turn the clock back to when we were both happily working in successful jobs, with no money worries and living life as it should be.

NOW? We have to rely on state benefits going in the bank on time every month so we can survive!! Having to rely on others is something we have never done and what was ours, was ours, and worked hard for, I would go back to work tomorrow if I was able to.

“””” Sometimes I want to run and run and not stop running until I have exhausted every bit of dementia out of my mind and body, I have no idea where I would run to, but it wouldn’t matter, as long as every step rid me of this awful illness!! I would run until either the good lord took me or Lewy Body’s would leave me once and for all. “””””””

Elaine (My Angel) walked into the bedroom two nights ago as I was weeping uncontrollably, it was one of the most awful moments of my life as she had caught me at my absolute worst and I want so much to protect her from the deep grief and sorry I sometimes feel . I am meant to protect my wife and children, not add to their problems. So much has changed, so very very much. Days are longer now; nights are even longer peppered with screeches and screams that you would only hear from a horror film. Daylight hours take so long to arrive and when they do, instead of the dawn of a new light beaming through our windows, it’s over taken by the feeling of sheer exhaustion that shatters the day before it even starts!!

I am so sorry this is not my usual happy clappy, fire in belly blog, but sometimes, just sometimes, the SHEER HORROR of this disease has to be spoken about and discussed. Not only does it help me, but I hope it helps others understand the huge amount of work done by the “Angels “ on this earth who are carers and loved ones who love, and look after people just like myself around the world.

All my love, Norrms and a very tired family xxxxxxxxxxxx
 

Jaffy

Registered User
Oct 24, 2013
180
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78
Ohio USA
Oh, Norms, I am so very sorry you have these horrors. As you describe (and I believe every word) i cannot imagine the torture/terror. The severe sundowners that I have experienced, are the worst, I have had, but they ended sooner than yours and weren't as bad as yours, altho at the time i probably would have said they were!
There is a Good Lord, and He is how I get through mine and yes loved ones.
I do hope you have no more, for ever and ever. Dementia, itself is bad enough without the add-ons.
Jaffy
 

marsaday

Registered User
Mar 2, 2012
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Thank you for posting what it's actually like to be suffering from this and being so aware of it too.

This should be made publicly available to those well meaning people who say in response to you telling them someone close to you has dementia-'Ach at least they are not aware of their condition-at least they are not in pain.'
Makes me want to scream!

I mean I think any of us would choose pain and a clear mind rather than the terrors of what you and many others are going through. And usually there is some sort of physical pain/condition to boot.
 

Redpoppy

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Jul 31, 2012
268
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Glamorgan s.wales
By your emotional post you must be a loving husband,father and Grandfather,and your wife and family will want to love and care for you now, as you have cared for them.It's just awful that you are having these frightening and upsetting nights.Maybe the GP can help with medication which will allow you and your lovely wife a decent nights sleep.Your post should be read by everyone because as much as we love our husbands/parent we don't get to know what they are thinking when they are unable to communicate with us.I have just returned after going out with my husband for lunch.He hardly spoke and just stared into space,but I wonder what he was thinking. Thank you so much for giving me food for thought.
 

jeany123

Registered User
Mar 24, 2012
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74
Durham
Normms I am so sorry you are having to go through this, it sounds frightening, I hope the nightmares end and I am pleased you have your lovely wife by your side,

Jeany xx
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
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Cotswolds
Norrms, thankyou for describing so clearly how it can be. The world needs to understand, and you have such a wonderful and rare gift of being able to tell us.

I do hope the torments are short lived, and you and Elaine can get some peace. Will be thinking about you in the wee small hours, when I wake up as usual.
 

juniepoonie

Registered User
Jun 11, 2013
727
0
essex
norms I can only echo what others have said, but thank you for posting such an honest example of one of your nights. it certainly helps those of us with family who also have this vile illness to help us understand just what they are going through. thank you. please god you get some rest tonight. juniepoonie
 

Pookie

Registered User
Dec 29, 2011
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O Norm.s what can I say that's not been said. I am so sorry, horrors are terrifying. Loveus2

Peter&Jean Pookie
 

Skye

Registered User
Aug 29, 2006
17,000
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SW Scotland
Dear Norrms

You are right, it's not often that your posts are other than upbeat. I can only imagine the night terrors you are suffering, but they must be indeed terrifying, to make you feel so desperate.

Norrms, you have done so much for dementia awareness, and you of all people do not deserve this. My heart goes out to you and Elaine.

Courage, my friend! If it's any consolation, your writing is as expressive and concise as ever, and can only add to your wonderful body of writing.

I wish you and Elaine well, and pray that the terrors will stop, so that you can both have some rest.

Love,
 

Norrms

Registered User
Feb 19, 2009
5,631
0
Torquay Devon
Dementia horrors

Thank you so much my dear friends, (Old and new) as some will tell you i have been a member on here many years but ashamed to say i dont visit as often as i should, hope to do more, lots of love, Norrms, Elaine and family xxxxxxxxxxxxx
 

steffie60

Registered User
Jan 22, 2013
232
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Hampshire
So sorry to read the night terrors have become so bad. You are always so positive and upbeat and as ever in your last few lines have kind thoughts of others. Hopefully this current phase will pass and the night terrors will fade enough to allow you and your Angel Elaine some sleep.

Sent from my GT-P5110 using Talking Point mobile app
 

Irishgirl57

Registered User
Jan 21, 2014
189
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66
Florida, USA
Normms, how terribly scary for you and upsetting for Elaine I'm sure. But I want to thank you so much for sharing the reality .... For me it's important to see that others go through things that I'm going through, and for the caregivers to see what's really going on in that it's not always a bed of roses...

I also wake up in the middle the night and want to run, I think people say that's one of the reasons why dementia patients wander... We are looking for a safe place, we're looking for home, we're looking to relieve the pain.

I send you big hugs and lots of sunshine and hope that you get some well-deserved rest my friend I know that you aren't in this alone, we're in this with you.
 

CCC

Registered User
Oct 14, 2013
4
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Wow Norrms. You're one of the ones who is in a far worse position than me. Not helpful to you I know, but it somehow helps me keep going.
 

truth24

Registered User
Oct 13, 2013
5,725
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North Somerset
Cannot add more than others have already posted but my heart goes out to you and your wife. I wonder if my husband is feeling the same inside?

Sent from my GT-N5110 using Talking Point mobile app
 

hazytron

Registered User
Apr 4, 2008
1,166
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SOUTH LAKES
Norrms , keep on telling it how it is. We need you to tell us all, as only you can and the way you always have, just how it really feels to have dementia. xx
 

Ann Mac

Registered User
Oct 17, 2013
3,693
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My heart goes out to you and your Angel, Norms - I've struggled with trying help my Mil deal with horrendous nightmares - though she doesn't scream through the night, so I think (hope - for her sake) that they are not as bad as yours. Medication has helped her, for now - I really hope that you are able to find some way to lessen this torture for yourself too xxxxx
 

Nanak

Registered User
Mar 25, 2010
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64
Brisbane Australia
I am so sorry to read this Norrms.

I feel for you, and for Elaine. I wish I could give you a hug, but as I am so far away I will have to send you a cyber one ((((hug))))

I continue to be grateful for your insight into this nightmare of a disease (no pun intended).

Kim
 

1964

Registered User
Nov 6, 2013
6
0
Dorset
Although I do not have dementia myself, my mother does. I want to encourage you. Cast all your burdens on the Lord and if you can read Revelation 21. There will be no more tears, no more suffering. You will be whole. If you trust in the Lord, your reward is Heaven. I am unable to even visualise what horrors you dream, but the Lord is in control and is your strength and comforter. With love and prayers.