Jan 22, 2018

Time to Tell the Truth About Dementia….from Someone Living with Dementia

Things YOU always wanted to know, or SHOULD know about dementia, but THEY were too AFRAID to TELL YOU, and I am sure many others were horrified around the world to learn that THIS information is not being given out, this is “MY ANSWER TO THEM”.
Those with dementia MAY, and I have to STRESS, “MAY” show some of these symptoms

1. Confusion and repeated questions are very common, please remember they are not doing this to “WIND YOU UP” Every time they ask the question it is the very first time they have asked it, according to them.

2. Swearing and Anger, even though they may have never have sworn in their life, they have heard people swear many many times during their lifetime, they know the words and are very familiar with them, so don’t be so shocked, this may be a form of release because their inhibitions have changed.

3. Inhibitions, talking of which, some may start to walk around completely naked in front of others with no conscience whatsoever, they may also start to speak their mind and say exactly what they are thinking and feeling. They may be a lot sharper in tone, than usual, lose their temper so quickly, all born out of frustration.

4. Violence, a very tricky one but has to be spoken about, even the mildest mannered of people MAY lash out at loved ones and strangers at times, they may bite, scratch, nip punch, spit at you, kick out or worse, please remember it’s not them, but the disease.

5. Incontinence, believe it or not SO MANY Drs etc DO NOT talk about this when giving a diagnosis, yes it does happen to all, but to those it does, it has a HUGE effect on everyday life. Always starts with small accidents, small damp patches etc and increases. Please remember the signal from the Bowel./ the bladder has been disrupted and cant tell the brain when they need to pee or poo. In all honesty, if they KNEW what was happening they would be MORTIFIED as would you, SO NO NEED TO CHASTISE AT ALL !!

6. Frustration, Imagine KNOWING you have this disease as in Lewy bodies, and KNOWING there is no cure, no remedies, and the chance is, you will forget ALL that you hold dear but you can do absolutely NOTHING about it. ?? Wanting to scream and shout is a huge understatement and why it often happens for no apparent reason.

7. Speech, the loss of coherent speech is so familiar in some people with dementia, one of the most common is having a conversation with you that make s absolutely no sense whatsoever to you, but please remember, it does to them, and please also REMEBER THIS, if you listen to them very carefully, sometimes, just sometimes you will hear the word “Thirsty” “Hungry” or “Painful ” repeated. This could help you understand a little more.

8. OUTBURSTS, A very important one, this can be caused by noise, or life, in general, being so busy around them, supermarkets shops etc, the volume of peoples voices is sometimes magnified a thousand times to people with dementia so its sounds absolutely deafening causing the person with dementia to shout SHUTUP !! Or worse !! Sometimes causing them to RUN out of the shop and try and escape to only they know where.

9. Wandering, The MOST important thing to remember is, people with dementia never ever get lost!!! THEY know EXACTLY where they are going!! They just haven’t told you !!! They will often try all sorts of tricks to get out of the house, and please don’t be fooled into thinking because of their age or frailty they cant get far. NO ONE KNOWS where they get the strength from to walk such distances but they can, and please don’t forget they have bus passes and can use them. We had a lady from Torbay who was found in Scunthorpe thanks to her bus pass, never EVER underestimate those with dementia.

10. Hallucinations, Hallucinations are NOT DREAMS or NIGHT TERRORS lets get that out of the way first.

Hallucinations are usually connected with those who have Lewy Body, but people with Alzheimer’s and particularly vascular dementia because of lack of oxygen to the brain will, or may suffer from these (I will NOT apologise for using the word suffering because if anybody has them like i myself do believe me they are suffering!!) Day or night these can happen, it may, to you, liker they are talking to thermselves or wanting to chase pepole, in some cases they will kick and punch as if shadow boxing, you will not be able to see who they are doing this to? But believe me, it is so VERY REAL to them.

11. NIGHT TERRORS, Imagine your worst fear being played out right in front of your eyes, imagine the horror unfolding in front of you, piercing screams, grotesque faces and being`s, clawing at you, biting you, then multiply this by 100,000! and you have a night terror. Also, imagine not being able to wake from this as it seems neverending.

Then imagine this happening every 30 mins of every night of every week? Hard I know but this is how bad it can get.

12. Feelings. This is a tough one, but I have seen with my very own eyes the hurt it brings when you may visit a loved one and they are holding hands, or have arms wrapped around a complete stranger in a care setting and don’t recognize you. You may well have been with this person a LIFETIME but please beware, this happens more regularly than some places care to admit.

13. Spatial awareness Is the person stumbling? Staggering like they are drunk for no apparent reason? Do the FALL “Upstairs” or downstair`s? Banging their toes on doors, beds etc? Are they missing the step down on the pavement, or more importantly walking into the road with no fear of oncoming Traffic?? This is because what you see they don’t, once again the signal from the eyes to the brain is distorted and wavey, this cause to see things very differently and miss the most important bits, very similar to having blind spots for all you drivers out there.

14. LOSS of APPETITE ?? or NOT ?? because of that signal (ONCE AGAIN) to the brain from the stomach and eyes not working properly some with Dementia may want to eat more as they have forgotten they have just had their meal. “What if they eat a lot? I hear you cry? “They must feel full I hear you say” but HOW can they feel full if the signals not working and they still feel starving ?? So you see, not their fault, they are not at fault at all because of this awful disease.Then there is the quandry of those not eating or drinking enough. this can be caused by many things but sometimes it really is just a case of putting water into a yellow cup or container, placing a small meal on a yellow plate instead of white and doing the same with tea and coffee.People with dementia can sometimes see right through clear glasses and don’t see whats in front of them, we have proof this works on our other website.

15. Sundowning !!! And LAST but Certainly not LEAST? SUNDOWNING !! I would personally put this on the school curriculum if I had the chance !! Sundowning is easier to understand than you think, it does exactly what it says on the tin !! AS the sun goes down the person with dementia gets worse, becomes more confused, more agitated and more frustrated, it really is as simple as that !! And what is, even more, simpler to help you and others including professionals, is to, QUITE SIMPLY change all their appointments with Drs, dentist, podiatrists , consultants etc, to MORNING Appointments so the person with dementia is in a better place, its a lots easier on you to manage and the Drs etc don’t have a hard time treating then either, you see? It’s not that difficult, is it?

These are just 15 points of what you MAY come to expect after a diagnosis of dementia, WHY don’t they tell you this? and WHY has it taken so long to be told this? especially by a person who is LIVING with this disease ?? I have NO IDEA !!

But what I do hope is you all read this, share this, copy and paste this and print it out and put it in every Drs surgery in the UK /World for all to see, it’s not a state secret, and those who don’t want to know won’t read it

Very best wishes, Norrms Mc Namara (Diagnosed with dementia 9 years ago and trying to help).

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  1. Thank you Norrms for your personal insights and sharing these with others. You are an inspiration and incredibly generous and I can’t thank you enough. Best wishes, Victoria

  2. Wow, thank you so much. I work in community care and often meet families, carers trying to cope with a dementia diagnosis and a loved one they can’t understand. I will be sharing this, credit to you. I’m a believer that with knowledge and a better understanding of dementia this process could be a lot less stressful and hurt so much less. Xx


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