If only life was this simple, and yet it can be,especially if we accept what we see and have right in front of us. If the following makes perfect sense to me, and my mind is muddled with Dementia, then why is it not perfect sense to everybody? Please share this small piece with everybody you know
Early Diagnosis = Acceptance
Acceptance = More understanding of this disease
More understanding= Raising awareness
Raising awareness= More funding (it happened with HIV and Cancer)
More funding= A cure
Or is it just me with too much passion? Please let me know, Norrms xxxxxxxxxxxxxxxxxxxx
“I remember looking at the clock and it said 8-45pm, I was tired and not really understanding what was happening on the TV so I retired to bed. Elaine came with me just to make sure I was ok and had my music in my ears to relax me (something I do every night) It doesn’t always work , but hey !! Music is good for the soul anyway! The next thing I remember I waking up this morning feeling refreshed and ready for the day, sounds good doesn’t it??
Now this is what really happened!!
After Elaine made sure I was settled and went for a bit of peace and quiet to carry on watching the television. After only 25mins she came into the bedroom just to check on me, and found me sat BOLT UPRIGHT with my arms moving slowly up and down. When she asked me what I was doing? My answer was, with a big smile on my face!!!
“Catching Snowflakes” of course!!
Now, before a few of you start to go AWWWWWWWWW! Please just think about what I have just written!! I have absolutely NO MEMORY of this and yet there I was, sitting in my BEDROOM catching SNOWFLAKES, In August!!!!
Elaine told me this after I mentioned to her this morning about what a good sleep I had just had. I was absolutely devastated!! I just sat there, trying to take in what she had just said!! My mind raced and went into overdrive as I tried to recall last night’s events but no matter how hard I closed my eyes, no matter how hard I clenched my teeth and shook my head, nothing came!! This is Lewy Body`s at its worst!! Just take a minute and TRY to imagine that after only 25 mins of going to bed you were doing something that is totally real to you but not the rest of the world!! Just imagine being told the day after of your exploits (Without the aid of Alcohol) of which you have no memory of whatsoever and then, try to carry on living a normal life!!!
I hate and despise the word “Mad” but the only word that flies through my mind over and over again is just that one word!! Some would say why would Elaine tell me this? Well, quite simply I asked her too if anything like this ever happened before. It has happened before but not for a while as my tablets were upped a while ago so maybe I am due for a higher dose? But it still doesn’t alleviate the shock of being told this has happened again and for the rest of the day it was like walking around with my “Concrete Overcoat on (As I call it)
According to Elaine the rest of the night didn’t fare any better either. During the night I was screaming, shouting, fighting an invisible enemy and sobbing unashamedly.
When will some people realise this awful disease is not ALL about forgetting names, places and people. It’s not all about losing your keys or repeating yourself time and time again. It’s also about a complete lifestyle change that affects you and your loved ones 24 hours a day!!! Both day and night this terrible disease affects everything you do and say. The strain it must put on the carers is immense, and YET!! These things never seem to be spoken about!! The horrendous Night terrors, the sobbing, the screaming and fighting never seem to make the news or the medical journals!!!
Well, ITS REAL, ITS HERE AND ITS NOW!!!!
We need to talk about this more instead of hiding behind it, we need to discuss this openly, and more importantly, the professional services must be made more aware of this, as well as the people who matter the most, those just being told their diagnosis and their loved ones !!
I hope this helps
Very best wishes,
Norrms, a very tired Elaine and family xxxxxxxxxxxxxxx
I DESPISE THIS DISEASE!! I HATE THIS DISEASE MORE THAN I HAVE EVER HATED ANYTHING IN MY LIFE!!!
THIS IS JUST ONE OF THE MANY REASONS WHY!
As we set off for sunny Bolton last Monday at 9am all was well and we were on our way. By 9-55am and just passing Bridgewater I wanted to know where we was going? Why we were going there and demanding to go home!! Such is the ugliness of Dementia!! And such is the deceitful way Lewy body`s works as I can remember most of it but I have no explanation as why I should be like that!! This was only the beginning to what has been a very traumatic five days, not only for my “Angel” Elaine, but also most of my family who are now nearly all back up North.
It has, without a doubt, been a very busy year so far but also a very rewarding one as I do believe with every bone of my body that we have come so far this year and will hopefully continue to do so, but this break was meant to be relaxing. Seeing and being with my children and grandchildren is the most wonderful feeling in the world for me as I know it is for many others, but this time was different. I felt as if I didn’t belong there. I felt like an outsider as the places and faces seemed distant and trying to join in with the simplest of conversations was so very hard. I stuttered, I stammered, and I struggled to remember what I wanted to say. Sometimes I felt as if it was my first day at school and was so nervous of saying the wrong thing, so I just went quiet and tried to keep up with what was going on around me, as you all know, this is not me.
One particular thing that stands out was when I was trying to have a conversation with Elaine and no matter how Elaine worded it, it didn’t actually make any sense to me and I just got more and more frustrated!! I was completely convinced it was Elaine making no sense at all and I was the one that was in the right!!! Thank GOD I have a very patient Angel as I became quite loud and obnoxious!! Eventually we decided last night that enough was enough, and as we said goodbye to all our family through the day, it suddenly dawned on me that my illness was getting worse. Outside of my comfort zone of Torbay ECT I am totally at a loss, even when I am in the bosom of my very own family. At times I felt so frightened I thought I was going to explode because I really couldn’t understand where I was or what I was doing there.
I really now believe that it wouldn’t have mattered if we were in Bolton or the Cotswolds! Or if we were on holiday in Cornwall or Corsica!! Everywhere we went felt unfamiliar and so surreal as if I was dreaming, or having a really bad nightmare. This, as you can probably tell, is the first time I have ever felt like this and believe me it’s not nice, not nice at all, because it throws up all sorts of complications for the future. Holidays are something we absolutely adore and even though we never leave this country, we both believe it’s the most beautiful country in the world (Pity about the weather) but what happens now?? Will the same thing happen when we go away? Also, what of my wonderful family?? Will they be prepared to travel down to Devon from all parts of the country? My home town is in Bolton and I have some of the best friends anyone could wish for up there, what happens now? but most of all, what about my wonderful loving “Angel “Elaine? We have yet MORE grandchildren on the way and if I flatly refuse to travel up there to see the newborns how will Elaine feel? I will not have anybody stay with me except Elaine as yet at this moment and cannot see that changing in the near future. My heart says you must let a carer come in and look after you! But my head and every sense I have in my body says NO!!
Apart from Hate, Despise and every other word similar, I cannot think of any other way I can describe how I feel about this awful illness. It`s not only robbing and thieving me of my faculties, my way of life and my hopes for the future but is now trying to restrict me in a circle of routines that seems like an impossible maze to get out of. If ever I needed strength, prayers and help to get out of this one, now is the time, I think my friends.
Fighting this terrible disease is what I do, and I like to think it’s what I do best, so I promise you that will not change!! This is a new challenge for me, but I am the first one to admit this might just be a BIGGIE and an uphill battle. So, what does the future hold? Well, as far as I am concerned it holds the best D.A.D day EVER!!!! It also holds (I Hope) the announcement of the very first “Dementia Friendly Community” in the UK right here in Torquay, and it also holds a long and fruitful friendships with all of you my friends for as long as humanly possible. Even though this has been hard to write, I just hope it helps, as it explaine`s what some of us might feel like with this illness and some of the battles we face on a daily basis. Some may not want to share this information which is of course, quite ok, we are very good at hiding things you know!! Still, now I am at home and in familiar surroundings I promise we will do our best to get on with the job in hand, for as long as we can.
All our love, Norrms, Elaine and family xxxxxxxxxxxxxxx
Feeling So Guilty
During the past week we have been visiting friends whose family members also have this awful disease of Dementia just like I have. We meet every so often and catch up. It’s good to talk about Dementia to people who know what we are going through and also good for the soul when we have all had a really good moan!!LOL
Unfortunately this week some of our friend’s families are entering late stages and others getting worse far quicker than I am. As we talk I can see the pain etched on their faces, faces that not so long ago, looked Defiant and bold, and yet now, there is a look of resignation and utter bewilderment as well as looking very tired from the wondrous job they do looking after their loved ones.
The people who have a diagnosis are very good friends of ours, have been for years now, and as I sit there sometimes and hear them struggle to say simple things, watch them struggle to do everyday tasks, my heart sinks and feelings of guilt wash over me like a never-ending tide. I know it’s silly, but when I see these things happening to very dear friends of mine I feel so guilty sometimes because I feel so well, (Mostly) I know they don’t have Lewy Body`s (my diagnosis) and they don’t have the night terrors or Hallucinations on a nightly basis like I do, but when I present myself so well during most of the day and they can’t, I just wish I could wave that magic wand for them.
It hurts me deeply to see this decline in my friends and I often wonder if they feel the same about me? Am I sliding down the same slide as them but just don’t know it?? They are completely oblivious to it, so, am I also? I often ask my “Angel” if I am getting worse, and as far as I can recall Elaine always says “Just a little” I think the trick is not to ask that question too often, what do you think?? I have often said that the “Mantra” for Dementia is
“Once You Have met one person with Dementia you have met ONE person with dementia”
That is something that will always be true as we are all as different as snowflakes or fingerprints, so I should be at peace with myself as I watch this awful disease take over some of my friends quicker than me, as we are all different, but this is not the case!! I go through a series of emotions which include depression, tears, but most of all ANGER!!
I am SO ANGRY at times that this horrific disease is eating away at the very fabric of our society. This disease is taking loved ones, friends and relatives away before their time, leaving destruction and devastation in its wake. And yet sometimes I think it’s my anger that keeps me going, the frustration that runs through my body makes me so angry at times that I “WILL” myself to keep going and do what I can for as long as I can!! Please believe this doesn’t make me any more of a person than my wonderful friends who are quite ill, I think I am just a lot more Awkward and stubborn than most!!
I just wanted to say that even though I have this awful disease, and even though sometimes I can see my future playing out right in front of me, it still hurts just as much so see my friends hurting and shaking their heads in bewilderment. A cure may not come soon enough for some of us, but if we can improve people’s lives in the future, if we can rid this horrid disease of the Stigma that goes with it and if we can give back the dignity to all those who feel they have lost it because of Dementia, then believe me, I will feel as if it is all very worthwhile.
Norrms and family xxxxxxxxxxxxxxxxxxxxxx
Walking has never been a problem for me, we love going for walks and always go as far as my heart failure will allow me, but lately I have noticed a problem, and more worryingly, so have others. As you know my Spatial awareness is not what it was and I had a fall a couple of weeks ago due to missing a step, but unfortunately this is different.
I noticed something was wrong as we walked through the hallway of where we live. As I looked down, it looked as if the carpet was going faster than my legs and I found myself almost jogging along, It was Elaine, as always, who caught my arm and asked me to slow down. As we stepped outside, again, I had that awful feeling of not being too sure where I was but that passed quite quickly and we set off, well, at least tried too!!
The only way I can describe it is it was like having two 12inch blocks of wood on the bottom of my shoes, I was all over the place, the floor became like an escalator and my feet felt as if they didn’t belong to me. Quite what it looked like to any passersby Goodness knows. The more I tried to resonate what was going on the more I panicked and I was convinced the floor was going to open up and swallow me. So there I stood, bolt upright and rigid, wondering where the Hec I go from here. No amount of coaxing from my “Angel” seemed to be working. Eventually step by step we started up again but when you hear the words baby steps, it takes on a very real meaning. How many times have I said?
“Nobody tells you this will happen!!”
For the rest of the walk, a very short one I may add, I dragged my feet there and back, it was as if my mind needed to know the ground was under my feet and needed to feel that they were in contact at all times. What a rotten disease this is!!! I stand in front of hundreds of people every year and try to get the message across that Dementia is not just ALL about memory!! If most people had seen me stumbling, shuffling and holding on to my “Angel” for dear life at all times, you can only guess what they thought!! The last thing on their minds would be “Oh! I wonder if Dementia is causing this??? More worryingly this seems to be another step down that rocky road of Lewy Body`s because as you know its closely linked with Parkinson’s and the shuffling is apparently quite common, though not in my case, this is a first for me.
I must admit I am starting to think about slowing up a little but do you mind if I share my fears with you my wonderful friends?
I am totally convinced that if I slow up, I will never get that drive and commitment back, that the Lewy Body`s will take over quicker and my battle will be over very soon. I see this as a clear and present danger! A fight every day of my life against this awful disease, I struggle to dress, I struggle to eat properly on some really bad days, I am always clean and tidy and yet I feel so hopeless at times as I watch Elaine putting my shoes on or fastening my buttons. If I give up just a little of what I am doing or slow down a little, does this mean the Lewy Body`s army is marching on against me ?? How many others in my shoes feel like this but have never said?
And yet I must admit sometimes at feeling so very overwhelmed that I just wished I also had that magic wand, waved it and all our troubles would just fade away. Alas this is not the case, so what should I do? As of this moment I have no answer but I hope that this quick glimpse into my life and my fears will help others and maybe one day, I and others will not have to make the decision to slow down or not.
Always fighting, sometimes winning, sometimes not,
Norrms and family xxxxxxxxxxxx
Sometimes I sit here and evaluate my life living with Dementia so far and how we have dealt with it. Sometimes it’s a good outcome, sometimes not; it depends on my mood I think! There is one thing, no matter what I think about, is the Secrets and Lies that’s connected with this awful illness dementia. I think that’s why I campaign as hard as I do, because the more I learn, the more questions there are, this is what I mean.
When I was first told I had Dementia I was advised to “Use it or lose it” and sent on my way!! If I had just been diagnosed with Cancer or HIV would they have said the same? What were they holding back? What SECRETS did they hold about this disease? As time went on I realised that not only was there nothing in place for somebody like me aged just 50yrs old with this kind of diagnosis but nobody talked about it openly?? WHY NOT? Was that a SECRET too? All I learned about this awful disease I learned via the computer but here are something’s I had to find out as time went on.
1, sometimes when I walk into the room and see my Angels face, drawn with worry and trying to figure out the best way forward for the future, what am I suppose to say? Do I say I am sorry? Do I pretend I haven’t seen her? Do I lie to her and say everything will be ok when quite clearly its not going to be? Nobody told me this would happen!
2, Never having lied to any of my grandchildren, when they ask “Grandad, are you going to die soon?? How do I answer that one? How do I look them in the eye and say “Not to worry, I am not going anywhere “ How do I look at their wonderful innocent faces and tell them that I might not be here to see them grow up, or see them married and have children of their own? Nobody told me this would happen?
3, When my Angel holds me so tight and whispers “What am I going to do without you?” How do I answer her? How do I calm her fears and trepidation? Nobody told me this would happen!
4, The nightmares, the hallucinations, the constant pressure of always being in the wrong, getting nothing right, dates, times, remembering holidays and places I have been!! WHY DID NOBODY TELL ME THIS WOULD HAPPEN??
ALL THESE SECRETS AND MORE!!!
WHY ARE THESE THINGS NEVER DISCUSSED??
Well, where do I start??
1, It’s only an Age related disease? Err excuse me????
2, it’s contagious? Yes some people walk away from me as if I have the Bubonic plague.
3, I don’t LOOK LIKE I have dementia?? Please explain to me “What does somebody “look like “with dementia.
4, it’s no use talking to him/her as she/ he won’t understand you?? Please tell me how do you know that?? When did you pass your degree in matters of the mind?
5, Just dress them in anything, they won’t know ?? Again, how do you know this??
6, A member of my family has a “Touch “of Dementia, that’s just like saying my sister is a “Touch Pregnant!!!
7, Dementia comes on suddenly!! NO IT DOESNT!!! Its actually a Critical chain of events that lead up to the later stages, its just all about becoming aware of the signs.
8, and the biggest one of all, its all about losing YOUR MEMORY!!
NO ITS NOT!!!
It’s about losing your lifestyle skills, your ability to walk properly, to talk properly, to count money and understand the simple tasks of life which you wouldn’t normally give a second thought to. Its about putting the milk in the oven and the hot cup of coffee in the fridge!!SECRETS AND LIES, EVERY ONE OF THEM, with a lot more besides.
My dear friends, until these secrets and lies are stopped, until the truth comes out about this awful disease and until each and every one of us stand up and shout`s that enough is enough!! We will struggle to overcome something we are in the dark about. No more should we hide in the shadows and whisper about Dementia. No more should those of us who have this disease be looked at as if we have two heads!! And no more should this disease be the Silent Enemy! Because I for one will not go quietly and will campaign long and hard until there are no more SECRETS AND LIES, Just
TRUTH AND HONESTY !!
The feeling of emptiness within my mind about an hour or so before going to bed was not a good sign. I sat there; quiet and unresponsive to all and whatever was going on, God only knows what was on the television, but to bed I went, 9pm as usual, accompanied with my headphones on listening to Palm FM.
I love any type of music but I kept changing radio stations as I was convinced I didn’t like anything I was listening to, and found myself becoming more agitated. Around ten PM my “Angel” Elaine came in and we tried to settle down moments later. In what seemed “Nano” seconds to me (But actually an hour or so), the Horror Show “started.
Images of people seemingly going about their business flickered across my eyes, cars, buses, planes and trains ploughed through the ni…ghtmare with ease, taking everybody and everything with it and I found myself screaming warnings, shouting at the top of my voice and my arms flaying about windmill like! My legs ran as hard as they could so I could try and warn people of the oncoming tragedy but they just turned to lead as I strained to put one foot in front of the other.
The outcome I will not write about, but needless to say it wasn’t a happy one. In my dream I just looked on in horror and screamed as loud as I could, if I am honest with myself it’s not a sound I have ever heard before and if I did I would say it wasn’t human. I have tried to re-enact the sound but I am physically unable to. My angel held me tight, dried my tears and the beads of sweat from my face and settled me down again for the night. Within minutes it had started again!!
This time I will not recall what happened as it was very personal, but also very real. What I can say is during this night terror I actually said to myself “This must be a dream and not true, it can’t be!!” I was actually dreaming within a dream, a first for me and very worrying!!! Once again the outcome was horrendous and once again my Angel and saviour were there to help me and calm me down.
As I awoke, eventually, at break of dawn I have never been so relieved to the rays of daylight streaming through our windows. Elaine’s hand immediately stretched out looking for mine as she whispered “Are you ok Norrms? Are you getting up now? I Whisper back “yes” and gently kissed her on the cheek, she looked so tied and yet so grateful to at least get a little interrupted sleep without my agonies of the night disturbing her, for an hour at least.
Never before have a described the contents of my dreams but I do believe that we have to talk about these things because it could be your partner/loved one, relation that is going through the same as me. I hope you don’t mind me sharing a snapshot of last night, and please believe me when I say it was only a snapshot, but hopefully it will help some understand what people with DEMENTIA have to endure sometimes, even though they don’t talk about it.
Love to you all, Norrms and family xxxxxxxx
One of Our Own
A month ago we lost one of own, as we call it. A very good friend of ours, and all at the memory cafe, was taken by this GOD-AWFUL disease Dementia. I really don’t think it hits home as hard as when it does when someone you know passes away because of it. Out of respect I will not name who it was and I have left it a month, also out of respect.
I remember when we first opened nearly two years ago now and how this person was a frequent visitor. I also remember how quickly they went downhill and how painful that was to watch, and feel utterly helpless at the same time. Since then I have started noticing some really close friends who also seem to be deteriorating in front of my very eyes. All sorts of feelings follow this,
1, I feel guilty, sometimes because I am doing so well,
2, I want to scream and shout at our local Doctors to give them the same drugs I have been given, ok they may not work for them, but at least they can say “Well I tried”
3, why cannot we find a cure for this awful disease??
The feelings of guilt wash over me particular when I speak to one of our group who really isn’t doing that well at the moment. We are not the same age and not on the same drugs but we get on so well. This awful illness brought our families together when we were struggling to come to terms with this, and we have been firm friends ever since. The helplessness I feel is sometimes over whelming to the point I sometimes make excuses and go to the bathroom to compose myself.
Then I begin to wonder “is this what others do when I am struggling with my words? Is this what my family does when I can`t remember what WE ARE SUPPOSED TO BE DOING? Do my loved ones feel like I do, but much worse?? Paranoia sets in and I watch every time someone excuses themselves in my company. I tell you this,
NOBODY EXPLAINED THIS TO US WHEN I WAS DIAGNOSED!!
How unfair this disease is!! How sly it is in the ways it does things and how B****Y awful it is to live with it!!
June Brown AKA “Dot Cotton” once said Lewy Body`s is one of the worst kind`s of Dementia`s there is, because those that HAVE IT, know they have it!! How true that is.
Please remember people with this awful disease also have feelings about others that have this disease. Also we have an idea what you wonderful carers have to put up with 24/7 and would give the WORLD to change the way things are so you could also find some peace.
But until that all elusive cure is found, until we all stand together, hand in hand, hugging and knowing the dementia`s days are over, we must continue to fight this and most of all support each other in every way and everything we do and the best way to do this is to SHARE, Share and Share again.
All my love, Norrms and family xxxxxxxxxxx
As I start to write this its 6.32am, been out of bed for a while now, been awake off and on since 4am. Elaine has taken the washing down to the laundry, done the polishing and I am on my second drink of the day. It’s quiet in our house at the moment, a lot quieter than it was a few hours ago when screams pierced the night air and the nightmares came thick and fast.
This is just another night living with Lewy Body`s.
As soon as I closed my eyes last night the dreams came and went. Images of people’s faces, young, old, happy, distorted flashed in front of my eyes as if my dreams were being put on Fast Forward. Horrific pictures of terrible things burnt into my memory so much so I can remember every detail the day after. During the day I get flashbacks of these happenings which drag me even further into the mire of Depression.
So cruel is this disease of Dementia that it takes away my happy memories and replaces them with those I try to forget!! In my dream state, in the corner of me eye I see a shape coming towards me fast, I try to run but my legs turn to lead, whatever it is gets closer and closer until I feel myself lashing and kicking out, screaming, yet no noise emerging from my lips.
And yet, as I awake, the noise coming from my vocal chords strains at my throat and the scream reverberates around our small bedroom, bouncing off the walls. Elaine is holding me in a vice like grip, and gently begins to rock me as my body shakes and heaves up and down with breathlessness. The rest of the night is not really sleeping. I drift from dream to dream, jumping, twitching, kicking my legs and talking in my sleep yet making no sense. Elaine is by my side, she`s not really sleeping either, just lying there listening to me and making sure I am ok and survive the night terrors that plague me.
Then, as dawn breaks, there doesn’t seem any point in staying in bed any longer. So here I am, telling you my story, as I have before. When will this story ever end? I do not know, but the point is this story must be told and must be shared, because if it isnt told, how will we ever learn? Please don’t pity me, this is my lot, these are the cards I have been dealt, and every morning I wake up and sit down here on this computer is another day I will fight as hard and for as long as I can to raise awareness about this awful illness dementia. I only wear one hat, it doesn’t bother me which kind of dementia it is, Alzheimer’s, Lewy Body’s Vascular, the point is that one day we see a cure for all types of Dementia.
And I for one will not rest until that day comes, even if I could!!!!!!!!!
As we arrived home things seem to settle a bit but as the night went on the only way I can explain it is a feeling of being there, but not being there?? Being “with it” and yet not understanding what was going on around me? I know I must have watched TV last night as we do every night, but I couldn’t tell you what a watched!! And so to bed.
Elaine was out of bed like a shot, it was as if she hadn’t been to sleep and was expecting something like this to happen. I struggled so much getting my bearings and surroundings and shouted for help a good two minutes after it actually happened. One of the things that did come to light and shouldn’t surprise anyone, including me, was because of my weight we had major problems getting me off the floor. I could see the look of frustration, worry and hurt in my Angels eyes and I don’t want her to ever struggle like that again.
This disease as I have said before, is like no other, everybody who has this all have completely unique differences. Some are very similar yet so different in ways. Please, can everybody remember the saying I learned such a long time ago,
An Illness Like
This is undoubtedly an illness like any other. Everybody who has a diagnosis of this terrible disease is as unique as every snowflake that falls to the grounds in deepest winter. Over the last few days I have come across comments such as
“Recruiting for the Torbay Dementia Action Alliance? There’s plenty of time for that!!
Err, excuse me, so it’s not important to raise awareness each and every day is it not?? I think it is!!
Or, when explaining to a certain shopkeeper about the Alliance I was asked (And this is no word of a lie)
When is a good time to joke with the customer about their Dementia?
My answer? YOU REALLY DONT WANT TO KNOW!! But if you PM me I will tell you the answer I gave, not for public consumption LOL .
Sometimes I think I will shake my head so hard it will fall off!! LOL But then I get three to four e mails at once from the likes of Age UK Torbay and the Care Trust asking what the Alliance is all about and how can they get involved, and so my heart soars once again.
I was asked also recently why I like to keep so busy and always have some project on the go? The answer, to me is quite simple, the busier I am the less time I have to think about how this disgusting disease is robbing me, minute by minute of my wonderful life and memories. When I have nothing to do is when I start to worry, and that’s when my “Concrete Overcoat” as I call it appears and envelopes me only to drag me down deeper and deeper into the depths of despair.
And please believe me when I say there are times like that quite often. Sometimes all is not what it seems over the computer. But on the other hand, in the early days of my diagnosis there were more bad days than good, but I can happily say these days there are more good days than bad, and I am convinced that’s because I keep busy, but when the day draws to a close, then that’s when my condition deteriorates.
Even after a couple of relaxing days away from the computer, I awoke the other night Screaming, Shouting and pushing the bedside table away from me as hard as I could!! I was bathed in sweat in what was a cold night and for the rest of the night I just drifted from one night terror to another. Two day`s running I could smell things from my past, from a very very long time ago , and in my front room as well!! I keep having glimpses of people who are long gone and hear my wonderful gran shouting me from time to time.
I have always said that having this disease is just like having TWO diseases, Having it, and KNOWING YOU HAVE IT!!!
But, and as you know, there is always a BUT with me LOL, It’s because we do so much and have little time to think of much else, and for that reason I am convinced I will beat this awful illness and one day hold the MOTHER of all parties.
YOU ARE ALL INVITED!!!
The Way Forward
Yesterday, Elaine and I had the privilege of attending what I would call the BEST conference I have ever been to so far!! Master classes on living well with Dementia were held on six separate tables, four times during the day (24 classes in total during the day) at each class different people sat at the table (it was a huge conference)
At each table sat a person (teacher) living with Dementia and the “Pupils” so to speak, were made up of Doctors, Consultants, Psychiatrist`s, NHS Commissionaires’ and local health workers.
IT WAS A DREAM COME TRUE!!
To be able to advise such people on how it REALLY is to live with this awful Disease and how we could, by working together improve things so much was an absolute privilege. Each one of us living with Dementia felt as if we were speaking for all those, all over the country who couldn’t speak for themselves and made the best of every moment.
THIS WITHOUT DOUBT IS THE WAY FORWARD
I explained that Dr`s receptionists should be trained to be aware that when people are making appointments for those with memory impairments or confusion to advise people to make a double appointment (20mins instead of 10) Therefore not putting any extra pressure on the Gp`s but giving the Patients a little more time to explain things.
I explained that after EVERY diagnosis of Dementia a follow up appointment should be made no longer than two weeks later to answer any questions that they may have about Dementia, and believe me there are quite a few!!
And the most important point I made was that Dementia IS NOT an age related disease!! I asked THREE Doctors sat at my table if they regarded Dementia as this, and the answer was a resounding YES!!
“Very Worrying “
I also asked if the same Doctors had the confidence to give a diagnosis of Dementia at any age. This time they all said NO!!
“Even more worrying”
Now, 10 out of 10 for their honesty, but not really the answers I was looking for, BUT!! The discussion that followed on all the points I got across was very encouraging, and I don’t say that too often!!
I was also asked to speak to the Whole conference at the end (it was a last minute arrangement, I was only asked to do it 15 mins before the closing speech) and to be honest I really made the most of it!!
As the opening headline says, this is the way forward, every professional I spoke to said they had got so much out of it. My “Angel” Elaine who was sat on a different table with the “Carers” point of view was told by the consultant running the conference that her workshop was the best he had been to during the day!! I am so proud of her.
So, my message to all you guys out there involved in “Dementia care” and all those that organise conferences regarding Dementia across the country
“MAKE THIS YOUR TEMPLATE!
Ask what we did, copy it to the letter, we don’t mind!! Please involve people who are living with Dementia in all you, after all
WHO BETTER TO ASK?
A very contented Norrms and Elaine xxxxxx
A Long Way to Go
But we are
I have just come back from doing two, 1 hour workshops at our local college where I spoke and answered questions on Dementia, my diagnosis , my thoughts for the future ect to two student groups who are taking “Social Care” as their curriculum.
As always, just before the end of my presentation I told them that I had, myself been diagnosed four years ago, and the following two minutes there was almost complete silence apart from very audible sharp intakes of breath!!
The questions of “HOW WHERE and WHEN” came thick and fast after and the most asked question was “What’s the difference between Alzheimer’s and Dementia? I had to explain to them all that DEMETIA is just the Umbrella term for all types of Dementia`s such as Alzheimer’s, Lewy Body`s, Frontal Lobal ect and I explained it in the way just as there are different types of Cancer, but its still cancer at the end of the day.
The most interesting part was that last question I have just mentioned (What’s the diff) was asked more by the Tutors than the Students?? Mmm, me thinks there is so much more to do yet, but please don’t let this distract from the awareness that WAS RAISED THIS MORNING. TWO SETS OF Students and TUTORS now know that it’s not an AGE RELATED disease, they went away knowing that people can still have a great quality of life with this illness and they will always remember the day Dementia came into their world, but hopefully left with a far better understanding of it.
Best wishes, Norrms and family xxxxxx
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Please dont let the Forgetter be Forgotton !
If I had a £, no sorry, if I had a penny for every time I had said “Err Sorry I Forgot” in the last four years I would be a very rich man !!! If I say it once I must say it a thousand times a day!! I am sure you wonderful carer`s out there can understand what I am saying as it must drive you up the wall hearing it as well!.
“Have you done this? Err sorry I forgot. Have you put that away? Err sorry I forgot, and that’s just before brekkie!! LOL Frustrating to say the least on both sides as you can imagine! But what about when the day comes when I don’t answer back? What about when the day comes when you realise you might as well stop asking the questions because it falls on Deaf ears? What happens then?
When the day arrives when I am asked all these things but no reply comes from my mouth, or no acknowledgement comes from a raising of the eyebrows or a shrugging of shoulders, what do you do then? Do you continue to ask the questions in the hope that one day an answer will again come? Or do you stop asking the questions because you just tell yourself that I am at that stage that I mustn’t be able to understand? What would you do?
Both my “Angel “ Elaine and I have talked about this at length and in my humble opinion I want to be asked these questions until the day I shuffle off mu mortal cord!! I want to be able to hear Elaine’s voice for as long as I can. I want the comfort of knowing I have not been forgotten and the sound of her questions may spark some kind of memories within my mind even though I might have lost the ability to speak.
I believe this is so important, as there isn’t a person on this earth who can say how much people understand when they are in the later stages. Can you imagine being trapped in your own body and mind, understanding all that’s going on around you but unable to communicate because that little part of your brain that tells you how to speak or nod your head has been lost forever? Can you even begin to understand how frustrating that would be?
So my point is, even though the day may come when I, or, someone you know loses the ability to answer back or visibly acknowledge what’s going on around them, please don’t stop asking them questions or talking to them, no one can say how much I or others are able to understand. It would be an incredibly lonely world trapped inside my own mind and body without hearing the lovely voice of my loved ones talking to me and not “AT “me.
Please don’t let the
FORGETTER BE FORGOTTON !
Between the Devil
Deep Blue Sea
As I sat there this morning, head in hands, re-living every second of last night`s Night Terror`s, I am at a complete loss as what to do. You see, I have had my medication upped three times in the last four months, and yet the evil graphic night terrors still come. Some seem to last for hours, some for just a fleeting second. Are they image`s of times gone past? Or of a time still yet to come, who knows?
The problem is, where once I would wake screaming like a banshee, these days I seem to be so medicated I can`t come out of it! Now it seems as if I have to live my night terror right to the end whereas before I would wake with a jolt just before the worst bit happened!! The dreams/nightmares/night terrors or whatever you want to call them that relentlessly invade my slumber, and no matter what I try, there does seem to be no stopping them.
Sometimes I do manage to come out of them, fighting, kicking and screaming, and where once I would dread going to sleep because of this, sometimes now I find myself actually looking forward to coming out of them instead of being stuck in the void of unconsciousness until the bitter conclusion of the Night Terror!
And so it goes on, night after night, week after week. I cannot begin to tell you how it sometimes affects my day as I can have regular flashbacks during the day. Most people just automatically think as soon as they hear the words “Dementia”, they think of “Forgetfulness and Confusion”, little do they realise this awful illness has so many different threads to it. This is why I try to do my best to raise awareness and explain to people that it’s just not an age related disease and there are also so many different kinds of Dementia, Nightmares and Lewy body`s go hand in hand, along with the hallucinations. These are not so prominent in other dementia`s.
So, where do we go from here? Do I cut back on my medication (Exelon) and hope that I won’t start to decline mentally but will be able to wake up from my night terrors? Or do I just carry on the way I am going but still very worried that my night terrors will eventually spill over to the waking hours? What a choice!!
Sleeping tablets would only make things even worse! The thing is, these questions I am asking I have never seen asked, or answered in any medical books, I have never been sat down and told this and yet I have heard similar things so many times. Why does nobody explain this to you? Why doesn’t anybody give you the “Heads Up” that this might happen? Surely forewarned is forearmed without going overboard and frightening the living daylights out of anybody. Can’t somebody one day just sit those diagnosed down and explain the possibilities of what might happen?
My argument is, when you receive a box of (whatever) medication it may be and take out the paper with the instructions on it, on the back is a list of possible side effects a MILE LONG!!
WHATS THE DIFFERENCE!!!
I would love your views on this, thank you so much for reading this, hope it helps, love, Norrms, a very tired Elaine and family
Imagine this, you are in a race, as the starting pistol goes off it’s a bit of a sluggish start until you seem to grow (as in Life) with confidence until eventually you get into your stride. For a short while you are watching all those around you in this race, learning and trying to understand their tactics (early years)
Then, just as you think you have everything under control along comes someone pushing and shoving you out of the way (Your teens) you don’t like this as you think you are the best at everything and know far more than anybody else. Eventually, you realise you don’t and you come to understand that in life you have to make the best of every day and continue to learn as much as you can.
And so the race settles down again and goes at quite a leisurely pace until you realise to will have to run a little faster, you have to speed up to keep up with everybody else and make sure you have enough energy to see this thing through so you’re not letting yourself down or any of those around you (Family, and children ) After a while you start to notice you are pulling away from the pack and doing quite well for yourself, you begin to puff your chest out, work a little harder at winning this race called life, only a few more laps to go (middle age).
“What’s this got to do with Dementia? I hear you call
Just as you turn the corner on the finishing straight (middle to old age) you hear footsteps behind you, getting closer and closer, you can feel their breath on the back of your neck. Who is this that’s getting closer and closer and trying to beat you to that glorious finishing line
As you turn to look, your worst fears are confirmed, it’s the one competitor in the race you didn’t want to see, trying to take over you and get to the winning line first, yes it’s a certain Mr Dementia, running shoes and all. You start to run faster and faster, pushing yourself every inch of the way, sometimes there is a gap between you (good days) sometimes he is right on your shoulder (Bad days) but no matter what, something deep down inside you tells you not to slow down, because if you do, you know that he will cross the finish line before you do !!
And so my friends, who wins this race we call life? Who crosses that Wonderful Glorious finishing line first, punches the air with Victory and continues on to do a Lap of Honour????
Some of us will come first and do that lap of honour, but unfortunately some of us wont, and for some of us the race IS STILL ON !!! This is one race I am in myself, this is one race that could go one way or the other, but please believe me when I say I promise this in one race I will give my all, and never give up!!
This is one race I intend to win!!!!
Sometimes I just sit there, staring into space, trying to remember the days/weeks events. I could always cheat and check my blog or face book, but do you know, sometimes I really don’t want to do that. All I want to do is remember, just like everybody else. All I want to do is sit and giggle at the things we have done together, or at something the children have said or done. It’s not as funny when you read it as if it’s someone else’s words. That`s one of the hardest things for me, it’s always the things that involves my family. I have always been a family man and they have always come first no matter what, but losing memories of them tears at my heart each and every day, unfortunately, nobody or nothing can ease that particular pain.
Sometimes I would love to look back at some old poems I have written or some of my blogs, without scratching my head and thinking “Did I really write that? Did I really feel like that on that particular day? Or even worse “Did I really act like that? Elaine must have been horrified! Or sometimes when I get an e mail asking if I could help with something only to forget it shortly after. I would love to rustle up a good curry, or Bacon Hot pot which I used to cook with pride, but, alas, I am no longer able to do this or even make a cup of tea as I might forget the oven is on or spill boiling water over myself. Yes, my friends, I am one (Sorry) I WAS, one of those strange blokes who used to enjoy cooking.
Sometimes when spring comes around I wish I could get excited about remembering the names of all the plants which are bursting into bloom, or remember the ones I used to grow from seed. Elaine says there are not many flowers or vegetables in the UK I haven’t grown!! I only wish I could remember which!! When I walk through the complex where I live I wish I could remember all those people’s names that remember mine and say good morning or goodnight, or even have a conversation about what was the latest news on the TV.
These may seem like such little things to some people and not that relevant or important, but to myself, and I am sure others who have this terrible disease (dementia ) , they mean the world of difference! To be able to function everyday without fear or fortune of what I may have done or said earlier, or not remembering if I have upset a loved one or not and their own politeness stops them from mentioning it to me for fear of upsetting me.
Sometimes, my dear friends, just sometimes, I wish for the same thing we all wish for…………………………..
Norrms and family
LIFE BEFORE AND AFTER EBIXA
Hello, I thought I would just write down a few lines about my life before my prescription of Ebixa or Memantine as it’s called in the professional circle. Well, when I say I, that’s not strictly true as what I am about to write is only what I have been told by my Darling Wife Elaine (My Angel) as either its very sketchy to me or impossible to remember so if I speak in the “Third person” I apologise now and will try not to.
After the shock of being diagnosed I was quite quickly put on Exelon to try and stabilise my condition. Unfortunately it made me quite ill and I asked to be taken off it. At this point in my life I was very down about the whole thing and with the heart failure I had as well compounding my problems I decided to let nature take its course and not take anything for my early onset of Alzheimer’s
Within a matter of weeks I noticed my speech was slurring as if I had too much to drink, my walking ability worsened to the point I fell a couple of times as I had forgot to put one foot in front of the other and my memory function was much worse.
From herein this is what I have been told but I have no memory of it.
I got up a couple of times during the night looking for my store keys (I haven’t worked for eight years) My nightmares got a lot worse (if that’s possible as they are still horrendous today) I had trouble remembering my children and grandchildren’s names which has always been my biggest fear /forgetting my family. I slept more during the day and couldn’t sleep properly at night. I also got lost a couple of times when out shopping with Elaine and after a particularly bad time at a garden centre we visited Elaine said that enough was enough.
So off I was marched to my local memory clinic to have yet another test which showed my score had fallen yet again. Then, about a two year`s ago I was prescribed the Drug “Exiba (Memantine)
Thankfully my consultant is without doubt the best in the world as within a couple of months it was like I had come out of a dream or “THE FOG” as I have always called it. Yes I have lost yet another two or three months of my memory completely but as the days passed I found myself being able to do more and more and my communication skills came back. Apparently when I was “In Limbo” without medication I could hardly string a sentence together, would never go out anywhere and was very jumpy and bad tempered.
The way I describe myself now is it’s just like “I HAVE MY LIFE BACK! I can communicate much better, I don’t get as frustrated as much as I used to and can still remember all my children and grandchildren`s names (well sometimes anyway LOL)
Yes I still have cloudy or “Foggy Days” and yes I forget things on a very regular basis but compared to how I felt it’s a huge improvement. Yet, it’s still tinged with worry and sadness as I know deep down it’s not a cure and eventually (unless the find one) the Dementia Demon will come to call again. But until then!! I will continue to do my best to raise awareness and try to change things so that Dementia sufferers and their carers/loved ones see a great difference in how things are done regarding Dementia, and hopefully wash away the stigma this horrid disease has attached to it.
I would just like to say that I am so lucky the drug worked for me but I do know and have learned over the last few months that it doesn’t work for all, unfortunately.
Thank you for listening, best wishes, Norrms and family xxxxxxx
This is how it all started, how i was diagnosed and what happened, this was the first thing i ever wrote about my illness
Me And my Alzheimer’s
Hello, this is my most recent account of how I first found out how I was suffering from Alzheimer’s (The early onset of) and how it has affected my day to day living and how its deteriorated since despite the help of some wonderful medics and medicine.
I am writing this account so all my friends can understand how far I have come with it and hopefully forgive but remember me in the future when the e mails stop. Also to all those who don’t know me, but who read it, then thank you, and I hope it helps if ever you or anybody of your friends/family are touched by this awful disease.
P.S. Please don’t pity me… just come along for the ride and I will tell you it’s not all doom and gloom!! LOL
The First Signs…
It would be about nearly two years ago now when I visited my mum in my home town ofBoltoninLancashireand a great time was had (Apparently). Within three weeks of being up there my wife Elaine and I were talking one night when she mentioned it. I honestly thought she was kidding me or “Winding me up “as we say and it wasn’t until much discussion was had, and I saw that worried look in her eye, that I thought something might be wrong.
I have suffered from heart failure for the last six years so we kind of put it down to the amount of medication I was taking for that ailment. Was I just kidding myself? Personally, at the time, I didn’t think so but looking back now, probably. Over the coming months things used to crop up, only little things like forgetting who had rung up that day, or finding my shoes, on my own !! LOL… Also people and places seemed to fade away into a distant haze as if I had dreamt about most of them but they weren’t really real. Believe it or not the penny dropped at a Football match.
I had visited my brother and we had gone to a local football match when, while having a coffee at half time underneath the stadium he turned to me and said something that made my hair stand on end and still does. He explained that while he had been driving down toLondonthe other day he lost all his bearings and didn’t know where he was or where he was going. This sounded so familiar but I didn’t say anything at the time. He said eventually all came back to him thankfully and he went on his way as normal.
We talked about how our Father had died of Alzheimer’s and also our gran on my Mum’s side so the odds were stacked against us, but as usual, me being me I just laughed it off. It wasn’t until we got home to Torquay that I repeated the same conversation with my darling wife Elaine and we both decided maybe a trip to my local Doctors was the best way to find out.
The test I was given was a very simple twenty questions test about Date, time, day month ECT. All came good apart from the date and that wasn’t a major problem, apparently it was the time was taking to answer these simple questions. A decision was made to see a Brain Specialist at our local memory clinic.
After what seemed like an age but was really only a month (my idea of time was getting mixed up by now) I saw a really nice doctor who gave me a complete physical and was then passed on to a nice Psychologist who sat me down and gave me what I have fondly since called a “Stupid Test” which lasts about one and a half hours. I didn’t think I did too badly but that wasn’t the case as very soon after I was asked to attend the local hospital for what is called a perfusion scan on my brain, this I did and it took about three quarter of an hour. This was on the Wednesday of the week and by Friday I had a phone call from the brain specialist saying he had the results and wanted to come round that day to see me!
I being me didn’t want anybody coming round without Elaine being there and as she was out on a very rare and well deserved day out with our youngest daughter I decided to make the appointment for the following Monday at the clinic, bad move !!
After I had explained to Elaine the reason I didn’t ring her (not a happy lady!!) we tried to bring forward the appointment but to no avail. It was the longest weekend of my life!!
I had convinced myself that the reason for my results coming back so soon was that they were completely clear and with him being such a nice Doctor didn’t want me to worry unnecessarily. How wrong could I have been!!
As we sat there in front of him he asked me if I wanted to know the results. Being a kind of black and white of guy I couldn’t understand why he would ask us to see him if he wasn’t going to tell us?? I found out later that even when the results can be bad some people still don’t want to know?? Very strange!! LOL… Eventually after the pleasantries he said the results had shown a lack of Oxygen flowing on my left hand side of the brain, even less flowing on the right side of the brain but more worryingly much less flowing over the top of my brain which in itself was a sure sign of mild to moderate Alzheimer’s.
When he told me I just laughed and said, can you repeat the last bit again please? But as Elaine gave my hand a squeeze I knew I already knew the answer. It went so quiet and I knew I couldn’t look at my beautiful wife just yet as the tears would have flooded out. “I’m only 51 I blurted out!” How? Why? When?
All this was coming into my head but no words were leaving my mouth. I turned and looked at Elaine; she had tears in her eyes…
The only thing that ever upsets me is when one of my family is upset, I feel their hurt and cry their tears, I want to protect them all so much and keep them safe but when they are hurting I feel so helpless. Our hands gripped tighter as the doctor explained that there was a drug on the market called “Exelon” and even though it only had a 25% chance of slowing this awful thing down it had to be worth a try.
The ride home in the car was a very quiet one and as I don’t drive I knew Elaine was trying to concentrate on driving instead of what we had just been told. On getting home we fell into each other s arms and cried so hard we thought there would be no fluid left in our bodies, then Elaine being Elaine looked me squarely in the eyes and said “ Right !! That’s that, now, what are we going to do about it!! LOL… We both laughed so hard you would have thought we were both completely mad, not just me!! LOL…
It was decided to tell all our immediate family straight away as I thought that at least if they know from early on they will have time to get used to their Dad, Granddad going slowly round the bend!! LOL… telling how much I loved my children/grandchildren… how much I loved them and always will was very easy for me; it was the reason behind it that wasn’t…
It’s been a few months now since I started taking the “Exelon” but I still have what I call my “Cloudy Days”. This is when I find it hard to coordinate anything I do, I can’t get my words out and as for the computer, well, and that’s a complete no. Whatever I write and no matter how hard concentrate I still write gibberish but the thing is when I’m typing it all seems perfectly normal to me!! LOL…
Lately I have forgotten what day it is and even when I’ve looked at a calendar it still made no sense. Then yesterday while I was out for our usual ride out I was convinced it was the year 2006 and had very little memory of anything else since then for a short while until most of it came back. This is a sure sign that the Exelon isn’t working as I know it should have kicked in by now. This disease is horrifying as it eats away at your self confidence bit by bit. It’s like having two illnesses, Alzheimer’s and knowing you have Alzheimer’s. I know that one day I won’t be able to look after myself and all the trials will be on my darling Elaine which makes me feel guilty enough but do you know what the worse thing is? Knowing I might not be able to recognises the love of my life and all my children/grandchildren. It’s heartbreaking.
Am I frightened? YES, very much so, but I am happy in the knowledge that I have raised a loving kind family who will stand by my side till the end. And I am also very lucky to have a large social network of worldwide friends who I will also be very grateful for their friendship and correspondence…
The only advice I could give to anybody who finds themselves in my unfortunate position is try to get help early on, the earlier the better, don’t be afraid of telling people, you are ill, not Mad but more importantly smile and laugh at it or it would truly drive you insane!! LOL…
How long I have left before I have to give the computer up?
Only the “Big Fella” upstairs knows but I would just like to take this opportunity in saying the biggest ‘THANK YOU’ to everybody and I will cherish all the memories I have of you for as long as possible…
Norrms (Real nameNorman)
PS: I was also diagnosed with heart failure seven years ago so I am hoping it doesn’t really come in three’s!! LOL
Link to all my writings on care space
When somebody asks me what’s the worst thing about being diagnosed with Dementia (Apart from the obvious) the one word that always stands out is “Frustration”
It’s the frustration of not knowing “How Long”
It’s the frustration of knowing (At the moment) its terminal
It’s the frustration of losing your everyday abilities bit by bit,
It`s the frustration of not being able to remember people’s names and faces
It’s the frustration of being wrong, most of the time
It’s the frustration, to some, of losing their temper, whereas before it would never have never happened
And it’s the frustration of having Dementia and knowing you have dementia (two diseases in my eyes not just one)
And so the list goes on.
Living with this disease day by day throws up all sorts of obstacles, but my point is as much as I try to overcome them, sometimes how to do this is impossible as I can’t remember. Can you imagine if you woke up one morning and you went to your sock drawer to get your socks? Then, as you have them there in your hands you have absolutely no idea what to do with them? Or in my case every time I go to put a shirt on, as much as I try to remember I cannot fasten my buttons, I can neither fasten my shoes, a tie, put a belt on or swap belts on my trousers when putting clean ones on.
I am no longer allowed to cook, or even make a cup of tea or coffee for fear of burning myself! So here I am, at 54 yrs old and having to rely on my “Angel “Elaine to do the simplest of tasks for me. Can you imagine what that feels like?
Elaine has to hold on to me tightly as she guides me across the road as I have no fear of oncoming cars or traffic apparently and have come so close to death many times. Can you imagine being led across the road by the hand in your fifties??
If there was a stronger word for Frustration I would love to hear it!! Please don’t get me wrong, I am certainly not complaining as I love life itself and no matter what is thrown at me I will always have a smile on my face, but I am writing this just to try and explain that the next time your loved one, or the person you are caring for goes red in the face, or shouts out in a fit of temper, its might just be that the sheer frustration that wells up inside of us who are diagnosed with this terrible illness has surfaced, and the actual outburst or change of moods is not down to what you are doing, but is purely directed at this invisible force that stopped us from doing what we should be doing with ease.
Hope this helps, best wishes, Norrms xxxxxxxxx