“My Ninth Dementia Anniversary”

Discussion in 'I have dementia' started by Barry, Dec 22, 2013.

  1. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Well as Christmas 2013 and then January 2014 inches towards its climax it also marks the “Ninth Anniversary” with my capricious bedfellow… and I find myself pondering as just where those past Nine years have gone to since I heard those fateful words from my doctor (Sorry Mr. Barry, ‘but’ you have mixed dementia with Alzheimer’s) and the sound of those words still echo out in my thoughts each day and I start to wonder just how many other people have heard those exact words in these past Nine years… which I’m sure by now must run into the tens of thousands, and then with the sudden realization that you have to try and adapt to the whole new way of daily life that any type of Dementia brings with it that can cause us all (meaning both sufferer and spouse alike) to have more high’s and low’s than the Pyrenees mountains…

    But now when I try to recollect over my past Nine years I have little recollection of what’s been happening, the only way I can tell is to read the notes in my daily diary and when doing just that it horrifies me as to the many changes that have taken place within my being and my personality.

    Where, and what, has devoured at the once placid man that had immense confidence in-himself, who could stand unfalteringly for hours in front of a vast audience lecturing and demonstrating about his profession as a Master Baker and Confectioner, who could answer any technical questions on that given subject and demonstrate the skills within his hands… that once man has now become a quivering wreck that shies away from any direct human contact due to his inability to clearly communicate as a result of the Alzheimer’s/Dementia yet sits fighting with the computer each and every day trying to find the words now lost within his brain…

    As we all know it’s an illness that destroys the heart, soul and spirit of a person… yet we must not acquiesce to its relentless bombardment of bewilderments at our being, we must stay as steadfast as is possible, and for as long as possible, everyday fighting our way through the density of clouds that form in the mind that can lead us astray and towards an abyss in life.

    ‘NO’ it’s not easy and there have been days over the past Nine years when I’ve said “I’ve had enough of this life” not just with regards to my own anxiety… but because of all the anxiety it causes my dear wife Sumi who at the best of times feels helpless as to knowing just how to help me, I’ve said this before, but I will say it again, for those of us with this terrible illness our days will slowly diminish beyond comprehension, but for our spouse the torment goes on beyond our demise, and one thing I know for sure is that without my darling Sumi at my side to support me, then I don’t know what I would do, so for Sumi’s sake, and for the sake of my children, and my grandchildren I will keep on staunchly fighting until the heavenly clouds of God come to carry me away…

    Barry
    1 Me Jan 2009 019.jpg
     
  2. Noorza

    Noorza Registered User

    Jun 8, 2012
    6,542
    Whatever this disease has done, it has failed totally to take away your written eloquence and your ability to educate others as to what this disease does is a way that evokes emotion and empathy, that is genuinely, to me, quite an achievement.
     
  3. starryuk

    starryuk Registered User

    Nov 8, 2012
    1,300
    #3 starryuk, Dec 22, 2013
    Last edited: Dec 22, 2013
    Barry,

    I wanted to respond to your post, but couldn't find the words.

    Noorza has expressed my thoughts (and those of us all I should think) exactly.

    Thank you so much for your insight and courage. You are one amazing man.:)
    xx
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,876
    Kent
    Barry, you were diagnosed the same year as my husband and he has the most limited communication left.

    You have done so well. xx
     
  5. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    199
    N Lincolnshire
    May you and yours enjoy this Christmas and new year as much as possible Barry. I totally agree with the above comments, you are an inspiration to me and i'm sure many :)
     
  6. loveahug

    loveahug Registered User

    Nov 28, 2012
    1,071
    Moved to Leicester
    Barry, dementia hasn't killed your spirit, it pours out of your posts in bucketloads! Your spirit carries us along and gives us the strength to keep our loved ones with dementia close and safe. Thank you for always being an inspiration.

    Hugs
     
  7. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Thank you all my friends for your very kind comments, 2012 will b a bright new year ;)
     
  8. jackanory

    jackanory Registered User

    May 10, 2011
    17
    Hi Barry i was told of my dementia three tears and take medication which is arracept.i was told it wsa hereridy because my mum and sisters .haveing worked with dementia i was aware i hadit .would like some tips on handling it doris
     
  9. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Hi Doris/jackanory
    I’m so sorry to hear that you have also fallen victim to this terrible illness and wish I could give you some advice on how to handle it, problem is that all type of dementia affect the sufferer/ people in so many different ways its almost as if it affects us individually so it’s very difficult if not almost imposable to identify a like for like, all I can say is to try and fight back at the illness as hard as you can with all the will you have in your heart, soul and body, and keep writing about how it affects you and your family here on TP
    Best wishes to you
    Barry
     
  10. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,499
    Female
    Near Southampton
    Barry, you know that I have tremendous admiration for you.
    Your illness may have destroyed some of your spirit but it has not destroyed your soul, that is your special inner core which shines through your posts and it has not destroyed your heart either.
    You may not be the same man you once were but you are still a pretty good man.x
     
  11. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Thank you so much for your very kind words Saffie
     
  12. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    nice one keep writing

    Hi Barry good to see you’re ok ****** me nine years now how time flies by I was on another TP thread earlier about lying got a bit carried away as I do but I was saying I just wrote on the other thread for me it’s 14years last month since I was diagnosed with dementia I expect they will think that’s a lie , obviously my dementia I struggle with words but still doing the odd jobs well quite large jobs really unfortunately age is slowing me down not dementia Anyway Barry keep writing your experiences down sent you email earlier hopefully have some more news to send on when new year is over

    cheers Tony
     
  13. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Hi Tony yes got your E-mail OK and replied, yes I know the time does fly be very quickly but with this illness I think it seems to fly by even faster. Good for you still going strong after 14 years, but why shouldn't people believe you! As that’s just one of the facts about our illness in that it affects each one of us in different ways so 14 years is not so unusual now not with the fantastic medications we have available.

    Keep on going my friend
     
  14. Noorza

    Noorza Registered User

    Jun 8, 2012
    6,542
    #14 Noorza, Dec 29, 2013
    Last edited: Dec 29, 2013
    Of course I believe you, I don't think anyone would question it, and like Barry I think 14 years on and still debating eloquently, you two are giving dementia a damned fine kick up the behind and I am all for that. You both are an inspiration to others.
     
  15. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Thanks for the comment 'Noorza' as I'm sure that will make Tony happy as well;)
     
  16. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    Hi Barry hope you’re ok on here early today as you say we both a long stint with dementia and with bit of luck lot longer yet

    Barry 90% of all the information you put on TP I can relate to at some point that is what I try to get across on TP you can only understand dementia if you have dementia anyway its good to read Noorza put so nice comments and yes we do appreciate the comments

    cheers Tony
     
  17. Shash7677

    Shash7677 Registered User

    Hi Barry, it's so nice that you can still be so eloquent as others have said after suffering so long with the dreadful disease.

    It took 9 months from diagnosis for my mum to go into a psych ward and then be placed into care, she is in an EMI Nursing Home now, 2nd Christmas there for her 2nd Christmas for dad without her home.

    It is nice to read that sometimes dementia does not snatch people away so quickly as it did with mum. Long may you continue to be well.

    Here's to a good 2014 for you,

    Sharon
     
  18. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Thank you for you kind words (Sharon) and I am so sorry to hear about your mum, this illness really is very ruthless and cruel and I still can’t understand why some people with the illness decline far more quickly than others? Maybe it has something to do with which particular area of the brain was affected at the preset of the illness to me it’s an unfathomable illness… :confused:
     
  19. Shash7677

    Shash7677 Registered User

    I think in mums case Barry her diagnosis came far too late. She was already not washing or changing her clothes, had stopped cooking and cleaning and generally had lost capacity completely. Her CPN said she was probably showing signs, all be it not particularly obvious signs from her late 50's, we struggled for 3 years to get a referral for her (63-66yrs old) and her referral finally came when she had no recognition of me when she was off wandering and ran out Infront of a car to get away from me!

    She was also at the point where she didn't realise that I was taking her home wen she finally got in the car 'this is not my house, I'm not going in there' etc etc. I'm not saying with 100% certainty that things would have been different if she had been diagnosed earlier, but it's a thought that always crosses my mind.

    A bit of an anomaly my mum, her CT scan showed nothing, no abnormal brain shrinkage for her age, no tumours, no bleeds on her brain, no TIA, small vessel damage, nothing. So there is actually no real indication as to why she is as bad as she is. Her brain scan showed nothing out of the ordinary for a lady of her age. It's good in a way as there was no nasty surprises when we got the results but, if there was something significant to note on the scan her rapid decline would be easier to accept.

    Anyway, enough about us. It's just lovely to be able to have a conversation with someone who knows how it feels to have the disease but is thankfully still doing well.

    Take care Barry,
    Sharon
     
  20. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,922
    Female
    Dundee
    I wonder that too Barry. I know people who have relatives who were diagnosed around the same time as Bill (over 12 years ago now). Many of them have passed on or are in care homes and not able to recognise people or respond in any way. I read on the this forum about people who have had a fairly recent diagnosis of Alzheimer's yet have deteriorated far more quickly than Bill. Bill is clearly progressing quickly within the illness now but we've been lucky to have these 12 years. As you say - unfathomable.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.