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“Deterioration and Fears”

Barry

Registered User
Oct 14, 2006
1,898
73
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 © ;)
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
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
 
Last edited:

john51

Registered User
Apr 26, 2014
289
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
 

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.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,130
68
Dundee
As always Barry your insights are such a help to others. I'm sorry things are not good for you though. Take care.
 

Barry

Registered User
Oct 14, 2006
1,898
73
Indonesia
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
Thank you John I'm glad that this has helped your family to understand your own feelings ;)
 

Barry

Registered User
Oct 14, 2006
1,898
73
Indonesia
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.
Many thanks for the kind comments Turbo ;)
 

Jaffy

Registered User
Oct 24, 2013
168
74
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.
 

Barry

Registered User
Oct 14, 2006
1,898
73
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
 

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
 

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