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  • Hi my name is Laura and I am currently studying for a Masters in Health Through Occupation (Occupational Therapy) at Brighton University and have decided to carry out my dissertation on the occupational experiences of relatives currently caring for with young onset dementia (those under the age of 65). I have some experience in this area as my mother was diagnosed with dementia 3 years ago at the age of 55. 

    The aim of this study is to explore and understand your occupational experiences of caring for relatives with young onset dementia. Your occupations are the things you do everyday, such as self care, work and leisure activities. 

    To adhere to the ethical requirements I am required to gain your consent before using your experiences in my research. I will provide you with;


    * an information sheet which explains the purpose of the research in more detailed, 
    * a consent form for you to complete if you would like your experiences to be used to inform my research. 

    I will also need to know your user/blogger name to allow me to use the experiences that you have posted on this site in my research. Alternatively you can write your experiences as a reply to this thread.

    If you are interested please read the information sheet/consent form attached below and email me at lds15@uni.brighton.ac.uk 


    If you have any queries about my research please do not hesitate to ask.

    Many thanks
    Laura (LDS)

  • DAD Video and message

    by Norrms on 28 February 2011

    http://www.youtube.com/watch?v=p9D9pWMHfbo
    Norrms's Alzheimers video February 27, 2011 06:33 AM

    A spoken message from Elaine xxxxxx

    http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.youtube.com%2F&h=1dc78
    Please contact me on

     

    normmc1957@yahoo.co.uk,

     

    We need your help, it doesnt matter where you are, where you live or where you work, just please join in the day xxxxxx

  • Unchartered waters

    by Norrms on 22 February 2011

    UN-CHARTERED

    WATERS

    Well, its official, I am in un-chartered waters now as I have been taking my Ebixa (Memantine) now for 18 months plus!! The first thing I would just like to say to all those people out there who are debating whether to take this medication or not, please give it a try, what have you got to lose ??Last week I spoke to a friend of mine in our group who shall remain nameless about this medication and he said that his wife had asked about it for him but he just said “I hate taking tablets” I replied “Don’t we all?? Nobody enjoys taking tablets, but the difference these “COULD” make to your life will far outweigh your fears of taking tablets!!

     

    It is at this point that I MUST STRESS that these tablets are not a cure, BUT!!! The difference they have made to my life has been “LIFE CHANGING!!” I have just had without doubt the best 18 months of my life!! I have spent so much precious time with my “Angel” Elaine, my wonderful children and beautiful grandchildren which I couldn’t have done without this medication.

    Once I had gotten used to the idea that this disease was incurable (AS YET!!) I made it my goal in life to spend as much time as I could with those who mattered. All this time would have been lost if it wasn’t for my diagnosis and the medication I am now on. I was on the precipice of life before this medication and it has dragged me back into the land of the living. All my passion and awareness raising stems from this as I feel I really have been given a second chance to do something as important as this to help others.

     

    Denial is a horrible thing and please don’t get me wrong, I went through weeks denying that the diagnosis was right and they had got it wrong!! But, because of the love and support from family and friends I am still here and intend to be for quite a while yet!! You can get rid of me that easily!!LOL

     

    But as I said at the beginning I am now in UN chartered waters as far as the length of taking this medicine is concerned and both Elaine and I have noticed a downturn in my health lately. There have been times when I have seen things and heard things that don’t really exist, and done things that are really out of character. I must admit that I do struggle at times on my beloved computer, THANK GOD FOR SPELL CHECK!!!LOL but what I am trying to say to all those who are thinking about taking this drug is I have achieved so much in such a short time, YOU HOPEFULLY CAN TOO!!!! If you deny the illness for any length of time, the disease will creep up on you and overtake your thinking!! Then it will be too late!!!

     

    I know the drug doesn’t suit everybody and I also know, unfortunately it doesn’t work for everybody as well, but as I said “WHAT HAVE YOU GOT TO LOSE????”

    As for myself my dear friends, I am hoping and praying for a cure to come along as soon as possible, but until then I will “Keep Taking The Tablets” as they say and will continue to post for as long as humanly possible.

     

    Very best wishes, Norrms and family xxxxxxxxxxxxx

  • Thank you so much !!!

    by Norrms on 21 February 2011

     

    We have just smashed through the 5,000 mark on the "Help set up' a Dementia awareness day cause" INCREDIBLE to think we only started on 3rd Jan 2011. Thank you so much YOU WONDERFUL PEOPLE!! CANT WAIT FOR SEPT 17th !!! best wishes, Norrms xxxxxx

    Help set up a Dementia awareness day, please pass this on.

     

  • ANGUISHED CRIES.....

    by Norrms on 20 February 2011
    Anguished Cries

    Anguished cries through the night,
    Alzheimer’s holds my dreams so tight
    Invading every single scene,
    Always knowing where I’ve been,
    Thrashing legs, flaying arms,
    My “Angel” Elaine staying calm,
    Gently wakes me from my hell,
    Saving me from his deathly Knell,
    Another night has been survived,
    Whatever next will he contrive?
    But I will be ready, no matter what,
    He has planned, because I have got,
    My “Angel” here next to me,
    So my defeat, he will never see

    Best wishes, Norrms and family xxxxxxxxxxx
  • CARE PACKAGE and FEELING BETTER

    by Norrms on 17 February 2011

    Care

    Package

    With this illness of Alzheimers there are many milestones along the way. Every so often something happens and the penny drops as to how ill I actually am. This morning was one of those moments.

     

    We had a phone call from a social worker who would like to come and talk to Elaine about my “CARE PACKAGE” Yes!! I have a community support worker who comes and sits with me on Monday mornings for two hours and I have another one who is arriving anytime now (Wed morning) who will also sit with me for two hours while Elaine has a break to do what she wants, and very well deserved as well.

     

    This has been happening for a couple of weeks now and I am just about adjusting to it BUT!!!!! By having a social services lady coming to assess my “CARE PACKAGE” and see what help I need really brings it home to me how seriously ill I really am!!! What’s wrong with me?? I just can’t seem to get it into my head that I have this awful incurable disease!! A CARE PACKAGE!!! I AM 53YEARS OF AGE FOR GODS SAKE!!!!!!!! Yesterday there I was, laughing and joking with all my friends at the memory clinic, telling jokes over the microphone and playing games, and today I feel as if I have my heart and life ripped away from me.

     

    The sheer frustration that wells up inside of me makes me want to run in the street screaming!!!! I AM 53 YEARS OF AGE AND I HAVE ALZHEIMER`S!! I repeat this over and over again in my head!! 53!!!!!! It’s not that long ago my kids were borrowing my CD`s from me!! I am not that close to retirement age; I should be out there working and providing for my family!! I should be looking forward to retiring in a few years with a future to look forward too!! Why is it, I am reminded every so often of how ill I really am? And every time I am reminded, this happens!!!! Surely other people who are in the same boat as me feel the same?

     

    Every time a Drs Appointment comes along, or every time my Community support workers call to sit with me is just a constant reminder or how bad things are!! Now I am being financially assessed about my care!! HOW DARE THEY!!!!! We have worked so hard all our lives bringing our children up (and their children!!LOL) we have never ever asked for any kind of assistance!!!!

     

    Then, the feelings of anger and frustration subside, the feelings of being absolutely uselessness drift away as my resolve and determination to beat this thing slowly rises through my body and mind and I become at peace with myself again, with a rock hard will and determination to beat this awful disease that has invaded my brain and my body!!!! All I think about is the next steps to raising awareness even more, how to end the misery and sorrow this illness brings and how I will once again walk tall and who knows? Even get a job!!!!!

     

    Well, until the next time the phone rings or the doorbell chimes and in walks my Support worker to sit with me!!

    My GOD I AM ONLY 53yrs old AND I HAVE ALZHEIMER`S!!!!

     

    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

     

    FEELING BETTER NOW!!LOL

    DO

    YOUR
    WORST!!!!

    Come on Alzheimer’s, do your worst!!

    In your creeping style, and your terrible curse,

    Don’t you know it’s me you’re fighting!!

    And all the others you are frightening,

    Well you don’t frighten me, not one bit!!

    You`ll be defeated with sheer grit,

    And determination of those you call,

    Because together we stand tall

    We are many, you are few,

    I await the day, when we beat you,

    Until then, you can do your worst?

    One day we will beat your awful curse,

    This is my promise from me to you,

    I will defeat you, in all you do

     

    Where there is HOPE there will be life xxxxxxxxxxxxx

     

     

     

     

  • WHO AM I KIDDING ?

    by Norrms on 14 February 2011
    Who Am
    I
    Kidding?

    Who am I kidding? Inside I am dying, inside I am crying and inside I am raging!! On the outside all is well and hunky dory!! It’s all smiles and waves and “Yes I am fine thanks”

    This is my fight on a daily basis, this is how every day goes without fail, never changing, never different and a never ending deceit of myself!!! I am so tired, I am tired of pretending, I am tired of trying to convince people all will be ok. I sometimes wonder if I am Schizophrenic!!! To everybody else around me I am just Norrms, but too myself I am just a fake!!! I am not really this outgoing confident chap that everybody see`s. I am just someone who is very very frightened of the future and what it holds.

    I DONT WANT TO DIE THIS WAY!!!

    And I know that unless a cure is found the dementia demon will come along and take his prize. Truth be told I am petrified of going to bed each night as I know the dream monsters will make an appearance. The feeling of uselessness during the day of getting most things wrong and not being able to think straight most of the time drags you down as if you are in quicksand with no chance of being saved!!

    The things I think about, the things I imagine (I Think) and the very dark places I visit when my concrete overcoat descends are things that no person should ever see or visit, yes, I do because I can’t help it sometimes. I know I am getting worse; I lay in bed yesterday morning and heard a loud bark of a shout!! I sat up bolt upright in bed!! My eyes wide open searching the room for the source of the voice that called my name!! I knew the voice but couldn’t understand how I had heard it so loud and clear, as my father has been dead for over three years now!!

    All these things and more happen when I am wide awake some days, but thankfully not every day. But just lately it’s been happening more often. I have been on the Ebixa for 18/20 months now so I know I am in UNCHARTERED territory as I haven’t heard of anybody staying the same for much longer than that (Answers on a postcard please) and I know it’s well documented that the younger you are the quicker it “COULD” progress.

    When you are diagnosed with this awful disease, this is without doubt the worst kind of baggage you can carry round with you, knowing, every waking moment of the day that

    THERE IS NO CURE!!!

    So how do you get up every morning?? I hear you ask. “How do you face each and every day living with the fact that you have a terminal brain disease that will rob you of everything you hold dear and cherish? And at this present moment there is absolutely nothing you can do to stop it??”

    THIS IS HOW!!!!

    By opening my eyes every morning and looking at my “Angel” Elaine, by looking around my bedroom and seeing pictures of my wonderful family and children/grandchildren and by taking a very deep breath and thanking the “BIG FELLA” because I had survived another night from the monsters in my dreams.

    And just by the sheer knowledge that all my family and friends have so much to live for, so why shouldn’t I?? If they have faith in me to keep up the fight until a cure comes then why shouldn’t I???

    At the beginning of this tale I told the truth about how it is every day of my life, now, at the end of it I have told of how I try to deal with it on a daily basis.

    Nobody ever tells you these are the rules (If there really are any) nobody ever tells you this is something I have to go through every day of my life, and nobody ever tells you wonderful carers/Caregivers and loved ones that this is what goes through our minds each and every day

    UNTIL NOW

    HOPE THIS HELPS xxxxxxxxxxxxxxxxxxxx
  • Demon dreams

    by Norrms on 13 February 2011

    Demon

    Dreams

    As I lay me down to sleep,

    In my dreams the Demons creep,

    Alzheimer’s/Dementia will be there,

    Causing chaos without a care,

    Running wild within my mind,

    Screaming shouting, never kind,

    Reminding me of days of old,

    But yesterday is not so bold,

    As I awake with body shaking,

    Rubbing eyes, my mind awakening,

    Trying to focus, pitch black night,

    Wide awake, full of fright,

    Beads of sweat run amok,

    Whimpering softly, still in shock,

    I slowly realise I’m still here,

    Wiping away a salty tear,

    Again I lay me down to sleep,

    And hope my demons cease to creep

     

    Best wishes, Norrms and family xxxxxxxxx

  • Three

    Years

    Later

    Hello, well it’s been just over three years since I was diagnosed with this awful disease and if I am very honest it doesn’t get any easier. When I was first diagnosed I started to research it, and the general opinion was it takes (Very roughly) between eight and twelve years before the end arrives. I am now three years in and on that count I should have between six to nine years left.

     

    Now that may seem an age to some but when you consider its only a blink of an eye to me, since I was diagnosed, it`s not that long at all. And please let’s not forget this is a terminal disease, even though I have yet to hear it described that way by the NHS which has always puzzled me and always will!!!

     

    So, here I am three years down the line and wondering what’s coming next. I have been through the stages of throwing my toys out of the pram and shouting why me and I have also hovered on the edge of the precipice regarding middle to late stage dementia before I was very luckily prescribed Ebixa which brought me back from the brink. But I really believe that being on that brink and hearing from my “ANGEL” Elaine what my behaviour was like has made me who I am today.

     

    It’s like being given a second chance of life and one I don’t intend to waste!!! People often ask me what drives me and lights my passion about raising awareness so much, and apart from the obvious answer my wife and family, it’s because I firmly believe I am back from the “Brink” to make a difference and by doing what I do I will hopefully not only help people at the moment but people in the future.

     

    But as I always make perfectly clear. My tablets Ebixa is NOT A CURE!!! It’s just staves off the inevitable unless they find a cure, and please don’t think I am capable of living a normal life at the moment because I am most certainly not. My tablets are good, but not that good!!LOL

     

     I cannot tie my shoelaces anymore; I cannot fix a tie or put my belt on. I seem to miss my mouth when eating quite a lot. I have some trouble holding my knife and fork and especially in the right hands. I only realised yesterday that I had forgotten how to photocopy, and for the first time today no matter how hard I tried I couldn’t remember my great grandson’s name. I am absolutely devastated at that and hope and pray it was just a blip.

     

    When I am in front of the camera’s or at the memory cafe I seem like the most confident person you have ever met, but when the “FOG” comes down in front of my eyes I am just a frightened little boy who is petrified of the future. When I am sat at home, staring into space in a Catatonic trance and my mind is imagining allsorts its takes such great strength from Elaine to bring me back to the land of the living.

     

    And at night times which are always the worst and I have started to dread, is when I am screaming out in sheer terror and thrashing about as if the devil himself is in the bedroom with me!! As I sit there with head in hands in the darkness, bewildered not knowing exactly where I am,  trying to make sense of everything as Elaine puts her comforting arms around me and tries to calm me down,

     

    THIS IS THE SIDE OF DEMENTIA PEOPLE NEVER SEE!!

     

    This is what my friends and most of my family don’t see and this is what I have to carry around with me every day of my life, this is what I call   HIDDEN DEMENTIA”

     

    This is the side of this EVIL disease that most close families/ carers and loved ones have to put up with every single day and yet to the general public most of the time all seems well. Without a doubt this is the most conniving, deceitful and underhand disease that exists and I really do think that people should know what they don’t see.

     

    I really hope you don’t mind me sharing this with all of you but I think it’s so important not to ignore the true facts of this terrible disease and to make sure that sometimes, even though all seems well on the surface, somewhere deep in my mind lurks the most evil disease that mankind has ever seen just waiting it’s time to take over me completely and win the war that’s going on between us.

     

    BUT GUESS WHAT!!!!!

     

    IT’S NOT GOING TOO!!!!!!

    Best wishes, Norrms, Elaine “MY ANGEL” and family xxxxxxxxxx

  • What to do

    by Norrms on 10 February 2011

    WHAT TO

    DO?

    Cries and echo`s from the heart,

    Mounting worries, where do I start,

    Fleeting memories here and there,

    All my feelings wanting to share,

    Life passing by, in a blink,

    Experiences past starting to shrink,

    This is what they call Dementia,

    I never asked for this venture,

    I`m 53, so not that old,

    Total shock when I was told,

    Three years ago he told me,

    My old age I wouldn’t see,

    But on I fight, until the end,

    My resistance will not bend,

    Come-on Alzheimer`s do your best,

    I will not succumb, I have too much zest

    A zest for life and will to live,

    My life to you I will not give,

    The battle rages every day,

    Kneeling I begin to pray,

    For that cure will surely come,

    Before the setting of the sun

     

    Best wishes, Norrms and family xxxxxxxxxxx

     

  • I JUST LOVE SPRING DONT YOU ???

    by Norrms on 05 February 2011

    I
    Just Love
    Spring
    I just love spring!! Don’t you? All the snowdrops are shimmering in the cold morning light and the Crocuses are just about poking their yellow and purple noses through the soil to have a sniff and see its time to wake up!!

    Spring is a time when nature awakens from its winter slumber emerges from the darkness of winter.
    (You know where I am going with this don’t you??LOL)
    It’s a time when flowers and trees wake up, stretch and change from the stark emptiness of bare branches and start to bud, just before exploding into leaf. This is nature’s time, this is when nature makes a difference and breathes new life into the world and shows everybody that out of darkness can come not only light, but new life, new expectations and new beginnings.

    LET’S MAKE THIS SPRING AND YEAR OUR NEW BEGGININGS!!

    LET’S BRING DEMENTIA OUT OF THE DARKNESS AND INTO THE LIGHT!!

    LET’S BREATHE NEW LIFE INTO THE AWARENESS OF THIS DISEASE!!

    AND MOST OF ALL LETS SEE A CURE IN THIS OUR NEW SPRING AND “THE YEAR OF HOPE”

    I am fully convinced this is achievable, and with the help of each and every one of you all my dear friends, I know we can do it.  We can bring this disease and stigma out of the darkness it’s been in for years and years and show people that it’s just an illness like any other illness and not one to be hidden or shut away and forgotten about.

    As always, very best wishes and HUGS, lots of love, Norrms ,Elaine and family xxxxxxxxxxxx

  • Hiya everybody, i had an e mail today to say that my book "Me And My Alzheimers" in now availiable "On Loan" from the Alzheimers Society Libarary, so if any of my dear friends cound`t manage to get hold of it because its printed in America and would like to read it, this is how to get hold of it on loan, i hope and pray it helps in some small way, these are the details
    Dementia Knowledge Centre (DKC)
    Current Awareness e-bulletin Issue 10
    The latest issue of our fortnightly dementia e-bulletin which keeps you up to date with all that's new in articles, books, DVDs and websites - content selected from resources in the DKC. It also features Society publications including factsheets
    Editor: Andrew Holland andrew.holland@alzheimers.org.uk.
    Search Knowledge-net, our A-Z of dementia and Dementia Catalogue, our database of published information about dementia - resources created in-house by the Knowledge and Information team. You can find them both on Arena 
    Through Arena you can also access our e-learning programmes which include the Introduction to dementia training modules
    Or Ring the Alzheimers Society on
    02074233500   and ask for loan library quoting reference number 14654
    Life stories
     
    Me and my Alzheimer’s by Norman McNamara
     
    Diagnosed with Alzheimer’s disease at the age of 50, the author shares his thoughts, emotions and experiences as he fights the condition
    NB Author is known as ‘Norrms’ and is a regular contributor to Talking Point- read his blog at http://bit.ly/9avqZL
    Loan copies available to borrow from the Dementia Knowledge Centre - quote library number 14654
  • Is This Denial Or?

    by Norrms on 31 January 2011

    Is
    This Denial?

    Or do I just not remember?

    Hiya, as you know we had a great meeting with two very good friends last Friday and it was great to catch up and make plans for the future (ever the optimist loll)

    The one thing that did come out of it was my total surprise at some things I (Apparently) do. As we were all chatting I started to listen to Elaine telling one of our friends how I put the Camera in the breadbin and how I can never get the shower right, turning all the dials with no known danger of hot water!! How taking me across the road is like having a three year old with her as I have no idea how to cross a road or have any road sense!! (I must admit I have heard the road sense one before LOL)

    Not only that I apparently need help with dressing/washing/shaving and getting my socks on!! All news to me!! Well, apart from the socks!! And I think some of the things that I can’t do any more were to embarrassing for Elaine to mention!!

    I must admit at one stage I was sat there thinking “Who is Elaine talking about??”  “I didn`t know we knew somebody else so close who had a diagnosis like me??” Then all of a sudden it hit me like a thunderbolt it was me who Elaine was talking about and I was absolutely GOBSMACKED!! I just sat there and listen to some of the things I had done ( I must admit I giggled at some loll ) and shook my head whilst pretending I knew what Elaine was talking about!!

    It wasn’t until we got home later that night that we had what I call “A Sit Down Talk” (we all remember them don’t we (LOL)
     After explaining to Elaine I couldn’t remember half the things she was talking about I began to wonder if a certain amount of denial had started to creep in without me knowing it.


     This is what this horrible illness does to you!

    This is how it treats you with a total lack of respect!!

    This is how it makes me and every other person with this awful illness doubts themselves, their sanity and their lives!!! Make no mistake, as a good friend of mine has said to me, this is the EVIL we have to put up with!!!

    Everybody who is touched by this awful disease has to put up with this at one stage or another. Can you imagine being told you have been doing things you have absolutely no memory of and over such a period of time???? Can you imagine how frustrating this is?? And can you imagine what goes through the persons mind as he or she is being told this?? I know what went through my mind but that is unprintable!!LOL

    So, is this me just being in Denial? Or is it just the nature of the beast we all have to deal with?? To be honest I am not quite sure but one thing I am sure of is

    IT WILL NOT BEAT ME!!!! THAT I PROMISE EACH AND EVERY ONE OF YOU!!!

    All this will take some time to get used to but get used to it I will, and as long as I have breath in my body I will continue to raise awareness and see a cure to this horrible illness !!!

    Best wishes, Norrms and family xxxxxxxxxxxxxxxxxx

  • Hiya, just got back from a meeting with the South west of England Alzheimers society managers and they have asked me to be (As a volunteer) their senior Advice Spokeperson in a group called" Involving people with Demetia steering refererence group" which includes advising on how to invlove more people with Dementia in desicions made on how things Could  BE run,

    Its a group which will include not only people like myself with dementia ( which the Torbay Dementia leadership group is) but also Senoir Hospital staff. GP`s and carers alike and will give us hopefully such a big say in how things are run and how we are treated ect. This could open so many doors as per talking and training Hospital staff on how to deal with people with dementia, What do you think about involving people with dementia more ??  next meeting in Bridgewater Feb 8th, will keep you posted, hope everybody having a great day xxxxxxx

  • Who will be there for my end of life care?

    Who will be there?
    For my end of life care,
    How will they know?
    I want it just so,
    We’ve had this discussion
    Me and my wife,
    Of how I want things
    At the end of my life,
    Don’t say that!
    Some people say,
    But how will they know,
    At the end of the day,
    How I want things,
    If we don’t talk,
    To get it all ready
    For my last walk,
    I wish more people
    Would talk about this,
    Before they share
    Their very last kiss,
    So who will be there?
    At my end of life care,
    My family and friends,
    Will all be there

    Best wishes, Norrms and family xxxxxxxxxxxxx

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Welcome to the dementia blog

Norrms was diagnosed with heart failure at the age of 44, and at the age of 50 was diagnosed with early-onset Alzheimers. He is now 52 years old old intends to beat both! He says Please join me on my journey with this horrid disease and share my ups and downs but dont worry, its not all doom and gloom. Hopefully it will help not only sufferers but loved ones, carers and professionals to understand this illness a little better from this side of the fence.

Norrms older posts can be found on the mental health blog.

Find out more about dementia, Alzheimer's disease and living with dementia on NHS Choices.

More information:


Nothing in this blog should be taken as medical advice and the opinions are personal and not those of the NHS. If you have any concerns about your health you should contact your GP or use our medical advice now section.

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