Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.
If one looks around the room you soon see the ones with dementia, the quite ones, the people that find it so hard to filter the back ground noise as the volume gets louder, so much so that one soon finds it easier to just be quite. Why oh why don’t people just take the time to listen to what WE want, cafés should be held in two rooms, one jointly for both parties and the other room for just people with dementia, where it’s quieter, where we can chat unprompted to each other, where we can have some peer support, where we can be truthful and share with out upsetting others that don’t want to hear.
Two hours ! A cafe lasts, usually once a month. We need at once a week, a crèche of sorts, not PC I hear you say, but that’s what’s needed especially for the mild to moderate people out there. We just need somewhere secure with a toilet , a kitchen and one helper, there could be a charge which I know most would pay ! There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left ! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want !
no one leaves till they are collected, could it be so easy, there are 1000’s of empty buildings in every major city in the uk .
Some one could even make a lot of money out of it, so we’ve just invented adult care, a youth club for adults of any age !
I would just like somewhere to go when I need time out from being myself, from being me! It’s bloody hard work ! It’s hard work for those around me too, my wife for instance, she wouldn’t say it but I’m sure a day off to herself would be nicer if she didn’t have to leave me in an Elderly Mental Infirm Care Home ! What do you think ?
So what’s the alternative, as I said earlier , there is the memory cafés ! And day care in an EMI ! NOBODY SHOULD HAVE TO SIT AND LOOK AT THEIR FUTURE ESPECIALLY WHEN THE FUTURE IS SO BLEAK AND SO HORRIBLE !
Yes we can live with dementia, yes we could even live well ! Yes we could live even better !!
Sorry about spelling etc but it has started to become quite difficult, what you see is what I have ! No less and definitely no more x
Thank you for your great support ! A great friend indeed !
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Well said Chris.
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Thank you for listening Anita ! X
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I have just come across all this information and blogs…I have very very early diagnosis of Alzheimer’s without dementia, but with some cognitive difficulties, and as yet have not met anyone as early as me! I will certainly read more.
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Early stage alzheimers/dementia support group on face book is an excellent forum just for diagnosed. Sorry to hear you don’t anybody, it can be lonely on your own, most areas have an early onset group, ask your local memory clinic.
I’m also on FB, Chris Roberts, and on twitter, @mason4233. Keep in touch x
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Got you on Twitter, cant find you on FB – maybe you could search for me? Gillian Hsg. I am amazed at how many people are ‘out there’ being involved. I will try and find out if there is anything in my area.
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Your frustration is so evident. I wish people were better educated to the needs of any person with dementia.it should be about their needs, not the needs of the carers. They can go anywhere to socialize. The person with dementia at any stage need less external stimulation.
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Well said and thank you, I know from experience and of speaking to others the biggest thing is to mix with others that have dementia and not activities
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Hello Megan, “less external stimulation”, don’t you mean ,the same ! Thanks
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Definitely agree with you Chris!
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It’s a personal thing , nobody of any age should have to look at their future ! Thanks for your support Freda x
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