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living a day at a time

A page in the diary "Sue's thoughts on life"
Written by suew Monday, 28 December 2009 22:36

I am sitting here crying, I just looked at the two photos I posted in the Gallery. It is not a good idea to look back when you are looking after someone with dementia. It is better not to think of the way things were last year or how they will be next year, it is better to just concentrate on today and live one day at a time.

Today was a good day as was yesterday. On both Christmas Day and Boxing Day I had to clean Ray up just after five o’clock. He doesn’t cope well with different foods to what he usually eats and meals at different times to what he is used to. No wonder so many households run like the trains, right on schedule. It is the routine that seems to be our saving grace so times like now when there is no routine are far harder to deal with.

There has been no-one to chat to on this site for a while now. 38 people have read my last diary entry, so where do those 38 people come from? Why did they read what I wrote but not sign up on the site and post a diary entry or come to chat? Are they/you afraid to participate for some reason? It is not scary; support is a good thing, to give and to receive. Without support I would not be able to go on caring for Ray.

If you are reading this why don’t you register and come and support the people who so need help? Tell us about the person you are caring for, how you do it day by day, what support systems you have and how that came about. If you are a dementia worker tell us about that, what you do, how you feel about it, maybe give us some tips for caring for our loved ones. This is a good site and as an Australian site could do with some new members to make it a worthwhile place to come to.

Sometimes I feel so lonely, not so much during the day but this time of a night when the world goes quiet. I know I can watch some tv, pick up a book, listen to music, all that helps but not a lot, once Ray goes to bed I have no-one to talk to, I am virtually alone. I go onto the Facebook site and see all the “friends” I have listed busy playing Bejewelled or being a good neighbour in Farmville. We deal so well with fantasy, but not so well with real life.

Tomorrow will be another day of looking after Ray “for richer, for poorer, for better for worse, in sickness and in health” etc. One day at a time is all I can do.

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Comments from the community :

hi suew
sorry you are having a hard time.I find it hard to get on and when i do it is quick as lawrie is always lurking.
sometimes i have good days and bad. sorry i do not always get on the chat room. when i am feeling happy i can sometimes find it depressing. which i am sure others feel we need to make the site a bit more happier. there is very little updates on the site you seem to be the only one adding to the site.
hope my comments cheer you up. will check out the chat room for a bit.
cheers laurel

Written by  laurel, Sunday, 3 January 2010 03:37

Laurel, thanks for the reply. Yes, I am mostly the only person on here now. I know what you mean about depressing but so are a lot of support sites, or maybe subdued is a better word, or sombre. I guess dementia is not a feel-good topic.

When we chat though we do get to talk about many things and end up having a laugh. Maybe I'll just be like everyone else and play Farmville on Facebook, it is the equivalent of reading Mills and Boon for computer users.

Lawrie watching you like a hawk must be so hard for you, at least Ray ignores me a lot of the time, which of course is why I am lonely and enjoy chatting.

Guess we just have to put up with the hand we have been dealt and find joy where we can.

Sue.

Written by  suew, Sunday, 3 January 2010 23:45

Hi Sue,
Am sorry I have not been around a while myself, still coming to grips with things. Not easy - funny how you can live with some-one and yet feel so alone, and the nights are the worst, sometimes I want to get on and chat to unload, but then I think that is not fair to others, as they too have their difficulties to deal with. Christmas was very quiet this year - the way people distance themselves from those afflicted with dementia and those of us left to care for them is infurating and makes things just a bit harder to deal with. i have Laurels problem, hubby watches me like a hawk and is always hovering over me, like a small child. his language is failing rapidly now, and his eyes look distant, am still working but am burning out, but that is my link with sanity, you know an intelligent conversation, not having to interpret every word, is so refreshing - why do we do it - duty i think for the person we married no longer exists. I guess in a way when I hear how hard it is far you now Lawrie is "slipping" it scares me because I too will walk in your shoes and god help me, I don't know that is where I want to be. Thinking of you - Faye

Written by  Faye, Monday, 4 January 2010 01:10