The Dreaded Quiet week…..

I’ve had such a quiet weeks lately …..only one trundle this week that happened to be yesterday…..
People have said maybe it’s the quiet before the storm…..but I prefer to have a steady continual drizzle. A long period of quiet followed by a full diary is so hard to get through. Dementia lulls you into enjoying the peace. It tries to strip from your memory the process of ‘doing’……’not doing’ becomes relaxing, becomes the norm, becomes a joy……☹️

When I say ‘doing’ I’m talking about being involved and having your mind stretched by the planning and travelling; different conversations in different environments.

I’m not saying I’m bored and have nothing to do, as I always make myself ‘do’ something. But being involved with professionals stimulates the brain beyond simply ‘doing’. You actually feel the door being closed on dementia…..never fully locked but closed enough to prevent it seeping in and wrapping itself around me…..

Some might say that what I’m describing is ‘employment’ but I could never do a regular job as that ability left me years ago. I’d be unreliable, inconsistent and a liability which would do me more harm than good. So we’re trapped, trying hard to keep ‘doing’ but reliant on others asking us to be involved.

It’s been a struggle to keep motivated this last couple of weeks, keep dementia at bay. I’ve had my eyes closed a lot and been tired most of the time..simply because I havn’t been ‘doing’……never good…….

Anyway end of moan and feeling sorry for myself…I know I’m verrrrry lucky really……

So yesterday I had a meeting about a new research project………

Cathryn Hart picked me up from home and drove us to the lovely bunch at Willerby…..
I couldn’t for the life of me work out why I was going so Cathryn filled me in on that bit too🙄

We arrived to find the lovely Alison with my cuppa tea in hand all ready…..I did take a piccie but then realised I had Cathryns notice board for all to see behind her!

And so I sat happily at the table in Cathyns office having my cuppa and looking at Cathryns happy board of all her staff…….

We were there to meet Mark Wilberforce, a researcher from York University to hear about his new project and me possibly being involved.

NIHR and many other organisations are putting far more emphasis on public involvement, which is wonderful, but I’ve come to the horrible realisation that this is back firing on us on occasions.

I’ve had several emails lately asking me to be involved and I’ve turned them down or they’ve not replied when I’ve asked for the finer details . I’ve heard from other people with dementia and what has made me sad is that they have been so grateful to be asked that me thinks they could be used in some circumstances simply to get funding.
I had one email that asked me to be on their steering group and when I asked the usual questions around the detail, I was told ‘Oh it won’t involve you doing much at all. We just need names on applications to get the funding……’
To think such things is appalling, to state them is unforgivable. Some researchers have a lot to still learn sadly……needless to say I turned them down….

We’re all different in the extent we want to be involved and all are important.

Anyway, off soapbox and back to yesterday…………

I’d had a long email discussion about my involvement and was more than happy that Mark gets it and the fact that Cathryn knows him made me feel comfortable………..

His project is about people who could use social care services. It’s about people with dementia and other complex needs who find it difficult to engage well with home care services . Outside help can be difficult to accept. It’s difficult to receive help in that short time and can be distressing in a rushed atmosphere. It’s difficult for the home Carers to deliver care in such a short time and so it becomes distressing for all and the process falls apart.

It’s finding out why they refused care or find it difficult – is it the way it’s being delivered. It’s easy for care workers to say they’re a ‘difficult person’ or ‘refused the visit’ and they go onto the next person. The cycle then starts again when new care workers appear on the scene again.

Support workers (some areas call them Health Care Assistants) are one of the biggest resources in mental health trusts. They’re not qualified, they’re cheaper, but the big factor is, they have more time than Home Carers. They have that bit more experience than home care staff because they can be used to people with complex needs.
We think they’re able to build bridges because they have more time and knowledge.

The outcome of the project is to come up with a manual for Support Workers to enable them to know where the fine lines are, where things become counterproductive.
The resource will be used for support workers to help them with social care. Support workers in mental health teams tend to stay in their post but care home staff tend to swap and change.

Continuity is so important but only with the right person with the right skills…. But it’s important that Support workers be guided towards best practice…..often Support workers can go into a situation and build the bridges needed for Home Care to restart.

It’s being funded by National Institute for Health Research and the final go ahead for this qualitative study should be in the summer……nice to be involved in something early doors.

After Cathryn took me home I was on Billy duty, so trundled along the back lane of the village bathed in sunshine….

And let Billy out for his afternoon trundle of his patch……but it did involve him trying to follow me back home for a while…….


Me and my shadow……or more accurately Billy and my shadow……..

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

18 thoughts on “The Dreaded Quiet week…..

    1. Being a Care Co-ordinator in Social Care and previously a Care Officer in Mental Health I was involved with and my colleagues with many many people who were difficult to engage. It’s again something I am passionate about. So often I saw doors closed on people because it was “their choice” It’s easier and cheaper!!!!!! Some staff for the “cheaper” reason felt they would get “brownie points” for walking away! (In my eyes anyway) The approach and attitude needs to come from the drivers and the top down to ensure the correct attitude.

      Liked by 2 people

  1. Hang in there, Wendy. I read your posts every single time with interest and care. For every agency wanting to use your name to get funding, there are many others who are sincerely interested in involving you and lots of people who support you, even if they may not contact you. Were I not on the other side of the pond (I am in Canada), I would want to be involved with many of the initiatives you describe myself.

    Liked by 1 person

    1. Wendy some professionals are just doing lip service and trying to tick correct boxes for whatever is expected of them at that time. The people they are supposed to so passionate about helping Are so often used in the process. To me these are people in it for themselves, to better themselves. I’ve lost respect for a lot of high up professionals in Hull as I have seen this first hand and it’s cruel. Many a time when I’ve seen them waffling on do I g the lip service when I know it’s not happening in practice they got that “look” from me test said “bullshit” and “I don’t like you” 😁 I didn’t care how high up they were!!!!

      Liked by 1 person

  2. Being a Care Co-ordinator in Social Care and previously a Care Officer in Mental Health I was involved with and my colleagues with many many people who were difficult to engage. It’s again something I am passionate about. So often I saw doors closed on people because it was “their choice” It’s easier and cheaper!!!!!! Some staff for the “cheaper” reason felt they would get “brownie points” for walking away! (In my eyes anyway) The approach and attitude needs to come from the drivers and the top down to ensure the correct attitude.

    Liked by 1 person

    1. I so agree with this Lisa. I spent more than 20 years working as a Senior Social Care Offocer (learning disabilities) and how many times did I hear staff at various levels say “it’s their choice”. If I counted I’d be very rich! It was so often a cop out. Once I got to know my resident / client / service user I was able to work with their “choice” and develop that equalling a fulfilled life, contentment, better sleep, better health generally and folks who looked forward to the next day. Now as a volunteer care inspector, when I hear that phrase “it’s their choice” I am always sceptical!! Time and again when talking with residents and their families I find they don’t want to make a fuss and just go with the flow — hmmmm??

      Liked by 2 people

  3. That went wrong 😂🤣😂 Big thumb!

    When they experience it in practice a lot of people do actually want that support so can’t make a proper choice until they actually experience that so J would say ” well let’s try a little bit and then if you don’t like it we can pull it” Of course when you .ca see someone is vulnerable or a family struggling people that cared would do this. In the end it is always their choice I would never take this away from anyone.

    Liked by 1 person

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