“Deterioration and Fears”

Discussion in 'I have dementia' started by Barry, Jun 13, 2015.

  1. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Since the beginning of this year 2015 until now “June 2015” my condition has gone rapidly downhill and with the now New health issues of which despite all the added medications I’m not getting very much reprieve so to be very honest I am starting to get very scared and at a loss of knowing what to do next!

    At night times I lay on the bed and my mind seems to go haywire in “fear” of my future, I try to cast the weird thoughts out of my mind by trying to recall past happier days but the constant ‘fear’ and my deteriorating condition cast any happier thoughts to the wayside like fallen Autumn leaves!

    But I’m not just concerned about my own health; I am also very concerned about my dear wife Sumi who has to shoulder the daily burden of taking care of me all by herself, as I’ve said many times before we have no Alzheimer’s society support or no support phone lines, neither do we have any social benefits or any social security financial support, there’s nobody that could come and sit with me to give Sumi a little bit of (Time out) and there’s no respite time for me the only respite I can get is in my own bedroom!

    All this weighs heavily on my mind which I guess doesn’t help my condition it just adds to my growing “Fears” and at times I feel so weak and fatigued I feel as though I am going to pass-out so I have to lay down on the bed until the feeling passes. “BUT” what I find the worst thing to cope with is the constant feeling you can get of still being aware of your own deterioration which I find makes my dementia feel even worse and extremely soul destroying! YET fight on we must!

    Barry © ;)
     
  2. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,493
    Female
    Near Southampton
    #2 Saffie, Jun 13, 2015
    Last edited: Jun 13, 2015
    O Barry how heartbreaking it is to read your so articulate post.
    How much more heartbreaking for you writing it.

    The only thing which helped me where Dave was concerned was that I felt that he was unaware of his condition, though possibly not in the earlier days. Now I doubt my feelings.
    You are so aware of your everything that you go through and express it in such detail, it must be agony for you.

    I wish I had words of comfort but sadly I don't. Have you spoken to Sumi about your concerns for her?
    I don't know her of course but I'm pretty sure she will reassure you.

    Your feelings regarding deterioration are natural as is your fear for the future. I do think that happens with most when we reach old age but it is of course enhanced greatly for those who are suffering already, as you are,

    I doubt my words can help in any way but I do feel for you. xxx



    Sent from my iPod touch using Talking Point
     
  3. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Many thanks for your very kind words 'Saffie' and yes your own words do help;)
    Best wishes
    Barry
     
  4. john51

    john51 Registered User

    Apr 26, 2014
    289
    Male
    Dunstable, Bedfordshire
    Barry
    Thank you so much for putting it into words.
    You have described so accurately what I also feel but couldnt think of the words to express it.
    Your post has helped me communicate to my family what I go through. They now know more about my dementia than they did before and my fears for them in the future.
    Thank you once again
    John
     
  5. turbo

    turbo Registered User

    Aug 1, 2007
    3,851
    Hello Barry, you have so much insight into your dementia world. Your insights help those who are caring for a loved one with dementia but of course also add to your fears about deterioration and your concerns for Sumi. It must be so difficult when there is no outside support for you and Sumi. Thinking of you both.
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,765
    Female
    Dundee
    As always Barry your insights are such a help to others. I'm sorry things are not good for you though. Take care.
     
  7. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Thank you John I'm glad that this has helped your family to understand your own feelings ;)
     
  8. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Many thanks for the kind comments Turbo ;)
     
  9. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Many thanks to you all my friends;)
     
  10. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    As always you have been and still are the "backbone" to this site, for me, at least, and i suspect to many others. You say what we feel and think. You understand us and we understand you and that is wonderful/awful! I haven't been on for quite awhile because I was doing so much better and trying to "live" while i had it mostly-together. Somehow this month of June scrambled life and the EXHAUSTION is unbelievable! Even keeping my eyelids open is like lifting weights! So sorry you are not doing well either, but so good to still see you doing what you can still do. You are an encouragement to us all. Thank you.
     
  11. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Hi Jaffy
    Many thanks for your kind comments, I'm pleased to here that you at least had a bit of a reprieve (all be it to short I here you say) and I know that sort of thing myself when for some unknown reason the dementia takes a back seat and slows down and as you rightly say at moments like that we must make the most of the reprieve and enjoy life to the full

    as always it good to hear from you
    Best wishes
    Barry
     
  12. shelagh

    shelagh Registered User

    Sep 28, 2009
    476
    Staffordshire
    hang in there

    Barry you describe the fear and the deterioration so well. I know that - got to lie down -feeling. We hang on or we give up. Your posts have always been so helpful to me.
    Shelagh
     
  13. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    I'm pleased that they help Shelagh;)
     

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