Support (or lack of it)

My new Twitter life is, I'm finding, providing a new dimension to the every day.  Not sure I'm quite there with it all yet and sometimes I feel bombarded with information but the nice thing is that, as far as dementia is concerned, almost all of the messages are positive which makes a change in my experience from most areas of social media (eg.  Guess what happened to me today?  You think that's bad, wait until you hear what I went through etc etc).  Anyway I've begun to put snapshots of my thinking on there and one in particular I wanted to share with you.  As the quote suggests, with the right support we can make a difference on this journey through dementia but my take on it is that it must be the right support and it needs to come from all sides.  If we can give the right support to our loved ones then we can make things so much better for them (and for us too) but for us to be able to do that we need support ourselves and not just support from friends but on-the-ground support from those who know exactly what we're going through and in this county (and I suspect many others) that support is sadly lacking.  I've documented elsewhere in this blog of the day we were given the diagnosis and how we were asked to wait for a prescription to be handed over and then left to get in the car and drive home.  This was the week before Christmas 2017 and the next time we spoke to another NHS professional regarding Ash's dementia was February 2019 when I phoned to see if someone would be coming to see us anytime soon.  We were lucky because we had friends in a similar position, we were lucky because we were pointed in the direction of Contented Dementia Trust, we were lucky because I can use a computer and have the sort of brain which likes to dig up information on any subject I'm interested in but what of those who don't have that luck?  Three months after diagnosis I was given strategies which helped (by a friend not by an NHS professional) but the time leading up to that was hell and I shudder to think what would have happened if all that luck hadn't kicked in and not everyone is as lucky as we are.  We are bombarded from every direction with fundraising requests to help find a cure for dementia and that's completely right - it would be lovely to think that at some point in the future all our fears will be things of the past - but we also need funding right here and right now to support us to get this journey right.  We can make a difference but we can't do it on our own.

Don't forget you can sign up to have this delivered straight into your inbox, just remember to click on the validation email (which may be in your junk mail/trash box).  You can share specific posts with others by clicking on the 3 dots at the top right hand corner of the page, you can share the blog by copying and pasting the web address or you can email me at if you have anything you want to say privately.  You can also now follow me on twitter, just search for Memory For Two.


Cornwall Girl said…
I couldnt agree more Jane there is a massive void in any care for coping with dementia at home. Its all smoke and mirrors. They say there is support but aside from help lines for carers which turn out to be just talk ....who sadly offer very little of practical use. My world up until now has been cancer ...I know a lot about it and like you Jane am always wanting to find out what I can to help myself. As cancer research looks for the cure hundreds of thousands of patients are stuggling NOW with life with cancer. Sadly I now know so it is with dementia. Having said that in Lanivet( Cornwall where we live at the moment) there are wonderul support groups run by professionals with big hearts. I also know that you only have to go 10 miles south to find the opposite is true. Meanwhile we all cope but at what cost. As long as the cost isnt to the NHS there seems little appetite to help us in more practical terms.Rant over!!
Jane said…
Well said! Maybe one day things will be different but as things stand I look in the mirror and see the circles under my eyes get darker by the day.
dasntn said…
Seems like we had it a bit easier.

My wife was diagnosed in October 2014 at the National Hospital for Neurology (we lived near London at the time, luckily) and straight after the diagnosis we spend about 40 minutes with a nurse specialist who talked about how things could go, what to expect etc.

My wife also signed up for some research projects at the hospital, which at least meant we felt like we were "fighting back" a bit.

The local memory clinic put us in touch with the Alzheimer's Society who ran courses on dementia and caring for it, and Young People With Dementia - a wonderful charity that organised events (walks, talks, singing, gardening) for sufferers and their carers aimed at people mostly under 60, so still mobile. YPWD was just covering Berkshire at the time (maybe still do) but they were a great help, and a chance to meet other carers in a similar situation.

But since moving to Devon, that has all changed, although I am going to go to a once a month session starting in February run by AS that is for carers and sufferers (but I will go alone - my wife would not be able to cope). Not sure how useful it will be but let's see!

It's a postcode lottery.
Jane said…
What you describe at the beginning is exactly how I think it should be and what a pity the professionals around the rest of the country can't see it or aren't motivated enough to do something about it. How wonderful you had that when you very first needed it.