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Discussion in 'I have a partner with dementia' started by maryjoan, Aug 15, 2018.
It’s like the compassionate communication thread - what we should do in the perfect world. I take such things as targets and reminders but don’t beat myself up when I fall short.
I do try ...
But I often fail!
And then I feel guilty, and I have enough of that.
Think this is called a no win situation....
bit like my life xx
Hi...your right, sadly I fall short too often, but just have to keep on trying
The tip of an enormous iceberg, as are most commandments, albeit well intended. The secret is in having such already embedded, so that communication becomes an instinctive thing - like helping a fallen person to their feet. Rules can be followed to the letter, but once a living being stands before you, the 'reality' becomes just that. Such is the challenge with dementia.
So true but also so hard to actually do and I fall short often but just have to keep trying ....take care A x
May I suggest that "yes" is the word to pin our hopes on rather than he word "never".
To try ... "YES, that's what we'll do when all our other jobs are out of the way"
" YES, Good idea........the weather will be perfect tomorrow"
"YES" - when your brain is crying "I really can't find anything worthy to say - I'm floundering"
God knows I said this a thousand times.
actually, I object to being hectored in capital letters like this! We are not idiots.
GxxAlso there is no right of reply for us to do a list of commandments for PWD. Kindred.
I often failed at this last time round, I’m hoping to do better this time.
Yes it is good advise but you’d need to be a fully paid up saint to be able to follow it perfectly.
So I take it as a guide lines and try not to beat myself up when I fall short.
I agree, I often found this much easier and it mostly worked .
Thanks for reminding me.
Dead Right, Kindred - that's why I put it on here. I think whoever wrote it has never lived with a person with dementia.........
These 'absolutes' are from a book by American Jo Huey who has experience of caring for her Mum with Alzheimer's: http://alzheimersadvocate.com/about-2/history/
Probably another one of those books that may be useful to some but not others, although the book might contain more context than a printed list of the key points being 'shouted' at you
I personally think that these sorts of 'printed lists' can do more harm than good by making people feel inadequate so choose to ignore them!
I could manage each of those ONCE a day. It's the extra and endless dozens of times that get me to choke on my halo.
Important points raised here. Lists like this make the Carer feel inadequate and might make them feel guilty.
The problem is, in life you choose to all sorts of things you have an aptitude for. If you become a Carer for a PWD by choice, well that’s one thing, but unless it’s a profession, most of us haven’t had a choice. What’s more, some of have a natural aptitude, but many of us don’t. Some of us have had a good relationship with the PWD, but lots don’t - and that goes for partners as well as parents.
Compassionate Caring is good, but so wordy, this list is succinct but hectoring and negative. So how do we do help Carer’s in a simple way?
I have to agree with you @Bel72 even if the intention is good with the list, it does get my back up a bit. I read it ages ago when an in law posted it on Facebook, but never thought I would be in this position. As I have posted already somewhere, I am very bad at this even though I have some experience in my working life, and break ‘the rules’ a lot and then try harder next time. My daughter obviously knows all about it because she says the same things when I get at my wits end, and I think well maybe he should come and live with you! I know she is right so my current mantra for dealing with it is, ‘Think 5 year old, think 5 year old’ and yesterday it worked when I got a bit steamed up at an outpatient consultation, which I have written about on another thread.
Bel72 - that paragraph just completely sums up my situation - I don't want to be a carer, I have done it before 5 times, don't want to do it again.....but the default situation kicks in - guilt , love etc Mmmm just get on with it I suppose
I think when you’re not feeling well and constantly being worn down like we are, any list of do’s and don’ts Is annoying, even though well meant and, in an ideal world, good advice........but how many of us live in that kind of world. It’s not like we’re surrounded by outside help that we can turn to at a moment’s notice. I found I coped better when I was feeling fitter physically but even then it’s very hard. As previously said, we’re not saints or idiots, just humans who are in a position that none of us chose. Maybe we should draw up a list of Epic Fails that we could all contribute to! Mine would be a long one
No way can I even read that list today! In fact reading it is offensive at the moment.
My husband is having a bad day, or is it me having the bad day because he is having a bad day.
Life.... going round in circles.
Didn’t help matters that I was up listening to drip drip drip at 3 am. This woke my OH who thought it was time to get up. Drip in loft is something else for me to try to sort that would have been OH domain.
Then trying to sort his mobile phone... what password! Whatever he thought it might be, it isn’t!
Need to get my act together, but wish I didn’t have to, every minute of every day... and lots of nights to.
I’m such a misery guts.
You’re not a misery guts, just someone who’s being put through the mill in ways that only those of us dealing with a PWD can understand. Know exactly what you mean about that list being offensive at the moment. It smacks of the “Living Well with Dementia” patronising stuff.
Thank you @longlostfan for your welcome words.
I feel so alone, but on here I feel I have friends who understand. So much more important than an idealistic list that makes me feel useless and without compassion.
The bullet point list might feel a bit condescending the way it is written but is essentially right and not much different to the compassionate communication that is listed so often. Maybe people respond better to an article with examples in it but once you've read that, there is no harm in printing this and putting it somewhere where you can look at it now and then.
One thing I have learned while looking after a PWD is that there is no value in needlessly being right. When OH and I went to a place we had never been to before, he looked round and said "We've been here before, right?" What good would it have done to correct him? So I said cheerfully "yes, you're right, we have been!" And smiled at him like he was very clever. So instead of feeling small and corrected, he felt good and encouraged. That's the essence of compassionate communication. And yes, it doesn't always work, and if you don't feel able to follow it, don't - but people giving these recommendations are only trying to help.