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Discussion in 'I have a partner with dementia' started by maryjoan, Nov 21, 2018.
I certainly need this attitude now when I feel that this is a living hell. Where has he gone?
You are dead right - it is a living hell.
I hate my life, there is so little in it. I hate his life for being as it is.
When we were young we never thought about dementia did we? We thought that some old folk were strange, but never for one minute did we think of the anguish that their families endured trying to keep them safe and the emotional trauma involved.
We did not think, because we were young with our whole lives ahead.
Now we are not young any more, and our lives have disintegrated...
And so it is with people we know who have no contact with PWD. They have no understanding of what it's like. And not just young people. Some of my older friends say how difficult it must be for me, but I know that they have no idea. It's not something that can be easily explained. I believe that only my friends on here know what it's really like.
I have just listened to a carer describing her life looking after her husband with dementia in the MOOC course and appreciate even more the community on TP who help each other with insight and support. The lady who described her life was just like ‘one of us’, and I understood everything she was saying with complete honesty, no sugaring of the pill. I have learned so much especially that we are not trained to do this work, didn’t sign up for it and come to the end of our tether often. We cannot be saintly carers 24/7, and need to be kind to ourselves as we battle with this irrational person without anyone understanding unless they have experienced it themselves.
If anyone would like to read my article in this months Devonshire Magazine click on the link below - go to the top of the page where it says 'read more' in red, and click, then look for page 96.
Have a look at the whole magazine - there are some stunning relaxing photographs in there as well!
Brilliant article, @maryjoan
Well done xxx
thank you @Lorna44 - I was asked to make it 'no holds barred' and there will be a continuing 'diary' in subsequent issues......
thanks for that link @maryjoan ......verymoving article, and, as you said, some beautiful photos. I read quite a lot of the mag.....bit of nostalgia as we used to go camping a lot in Devon when I was a kid.....made me homesick! Let us know when the rest of your diary goes online too
Thanks for link, I could not find it before. People need to know. Your well written article is brilliant. Let us all know when the next part is out.
The magazine is lovely, brought back many happy memories. X
What a good magazine @maryjoan.
I found your article but couldn`t enlarge the print enough to be able to read it.
Just below the article on the right is an icon to make it 'full screen' - I clicked on that and then just enlarged it using the wheel on my mouse...... I am no expert, but that worked for me
Thanks @maryjoan. I got the full screen but have a different computer set up. I`ll try again.
Excellent article @maryjoan. Lovely magazine as well.
For a long time I was the only one really concerned about my mother's behaviour. It was when someone from the company that manages her block of flats rang up to say he'd had a disturbing phone call with mum and was concerned about her that I realised it was moving on to something more than old age forgetfulness.
I think it is the realisation that is the hardest part - and then the 'what to do'....
Excellent article, members having difficulty viewing may find clicking on thumbnails easier.
Click on thumbnail | click on 'open in new window' upward sloping arrow top right | Click anywhere on image to enlarge to full screen
Alternatively a pdf of the relevant 3 pages of Devonshire Spring 2019 can be downloaded >>>here<<<
Hello all - I just read the article and,as with all others here, i dread the deterioration of the person i love - becoming more difficult to manage. Today our doctor has decided, after many eating difficulties, that my husband should be examined by a surgeon for a possible stent - some anesthetic is necessary - is there an article on the problems with anesthetic and vascular dementia!? Any experiences !?
With thanks for any advice MJ
Thank you so much @nitram - I am not as tech savvy as you - and thank you for saying my article was 'excellent' hopefully I will improve further as the diary continues in the May/June issue...... it's a lovely magazine to browse through as well - the photos take me to the parts of Devon we can no longer get to, not having a car any more....
That's an excellent article, MaryJoan, and it rang so many bells with me. I think you've been very brave, I really do.
Thank you indeed - I will carry on writing - the next one is in the May/June issue ( I hope)
I flew to Edinburgh on Friday to meet my brand new grandson. Carers in at home 4 x a day for himself.
Returned to Bristol last night, and texted himself,, to say I had landed.
Sweetly he said " Would that be at Bristol?" - exactly where did he think I would land...........