Feeling….stressed, despondent…but still wearing positive pants

th-2There are days when I feel I can no longer compete with organisational ‘experts’, with regards to what’s best for me and other people living with dementia.

That I can no longer stop others from deciding what us people living with dementia need, or want to fit their ‘brief’.

I get upset at how what I am saying, or my voice, is being blown away on a wind of ‘organisational’…I am sitting here trying to think what word to use but can’t quite get it.. constrictions, not fitting an organisational brief..

I am a strong advocate for people living with dementia to live with the positiveness of CAN DO.  Of overcoming the fear of their diagnosis and trying to do as much as they are able and then, going beyond that.  Having a say in what they want, what they will accept others doing for them, having a voice that is heard.  Trying something new, revisiting something they used to do.  Adapt what they want to do in a way that they achieve more than they thought they ever would.

The saying “There’s no such word as can’t” is so underrated.

At this point I had written a lot of why I was writing this and then realised that it was the wrong thing to do.  So what I will write instead is what I feel is important for Society/Communities/Organisations to understand.

If you are living with any form of MCI or PLWD (Person/People Living With Dementia), it is import to keep going.  Before diagnosis people had their own autonomy;  do you want to?  how do you want this to be?  give us some ideas that you would accept…  and such like.    After diagnosis this should still be the norm for any organisation when they are providing for us.   Most people working in organisations that provide some service for PWD have training.  NVQ Level 2/3 in Dementia, Social Care degrees/Masters, or ongoing comprehensive in-house training.   But, this training can never take the place of the voices of people living with dementia.  Our actions, ideas or input should never put behind that of an organisation.

It is always worth reminding society that PLWD once had careers and backgrounds that may have surpassed anything that any dementia provider has done.   All careers from shop assistant upwards are vital roles, but it seems that when someone is diagnosed everyone forgets what they are capable of, so if they are making a suggestion or offering to do something it is of no small consequence, because they may just have more knowledge than realised.

I really don’t want to be told what I cannot do, because I can try to do anything I like as long as it is legal and will not hinder any other process.   I don’t necessarily always want to leave things to the ‘experts’ if I can do something myself.

My thoughts are to step away from a situation for my own wellbeing, but this isn’t about me this is about all people living with dementia having a REAL voice.

 

“Nothing about us without us” 

Why is this a hard concept to get.   There are some truly lovely, and wonderful people wanting to offer people living with dementia activities in the community.

My word of advice as someone living with dementia:

  1. Know your community
  2. Make sure you do not do anything without having someone living with dementia to consult with.  If these are the people you are doing things for, then ask them first.

What if you have no one to ask?   What!   Why on earth are you starting things for people without reaching out to them first?   Do you see what I am saying here?  If you have no one to ask then you don’t know who is in your community who need your help in accessing activities or support.

Does your GP Surgery/Memory Clinic signpost your activity to people who are newly diagnosed living with a memory issue or dementia?   These are the people who need peer support and acitivities.  First build relationships with your medical centres so that they can tell someone newly diagnosed there is peer support for them to access. Otherwise they can feel that life is over, that there is nothing for them to do other than let their families take over and sit and make the best out of nothing.

Here in the North East of England, DEMENTIA is a word that no-one will speak.  It appears to be a word to be ashamed of.  Families hide it away within themselves, and will only speak it when talking about having had a member who had ‘it’ – Said with such sadness and dread that requires the voice to lower a little.

I am trying, so so hard to change this in my local town.  I am now having to tell people if you want to reach people living with an early diagnosis then never, have the word ‘dementia‘ prominently in your name or description.  Instead focus on the word ‘memory’ difficulties with the additive of dementia hidden at the end.   Do I think this is a bad thing? No certainly not especially in an area that is not yet open to being open about dementia.   Who cares what it is called as long as people can access it whilst attitudes change slowly.

At the moment I feel alone in being involved in starting support/activity groups up because I am yet to be put in touch with others like me living with this disease.  They are around because I am told they are…..and that is where it ends…  If it were not for the few wonderful people who are passionate about changing our town then I think it would be hopeless.

It’s funny because you can see the other small towns where they have groups for people with dementia that is not focussed on early onset/diagnoses, because their posters and wording is very professional like, and ‘correct’.   It is all about them doing things for us, and whilst that is fantastic, it is all encompassing and not for the likes of younger diagnosed people such as myself.

I was part of a conversation the other day that was being had about groups in my Town, and someone saying “what we need is a minibus to take people to other nearby towns to join in activities”.       NO, what we need is for someone to ask ME, and others like me in my town what WE want.   Sorry, did I shout there.   Anyway, there will be a group/meeting/for people who are living with diagnosis of memory difficulties, MCI, and dementia to see if we can first reach people who are around locally.  Small steps.

 

 

Media, I am not a dementia soundbite!

I have had two radio interviews, one with BBC Radio Tyne Tees, which I have written about, and another with BBC Radio Newcastle.  When I talk I sound fine.  People say to me that I don’t sound like there is anything wrong with me.  Exactly, and I am the first person to point that out with, I might sound okay, I might look okay, but I am not okay.  So, when I talked to these presenters I say this to them.   They ask me questions and I answer,  I tell them how it is for me, because everyone who lives with dementia experiences it differently.  I do however, talk about general things that people with dementia can experience when living with the disease.  But, they are asking me about myself so I answer.

I felt the interviews went reasonably well, apart from Tyne Tees chap who kept using the word ‘suffering’ grrrr!   He actually had no idea he was continually saying it, which means he was just doing a job and not at all interested.

When I listen to them back I am horrified by how they have been edited.  I sound like someone with more advanced dementia!!!!   The answers have been cut so that what is left are the words I am saying inbetween the answers I have given…just words, going nowhere in particular.

Why do reporters do this, why should I be shown as a media stereotypical dementia soundbite?   I AM NOT A SOUNDBITE JUST SO YOU CAN TICK A BOX TO SAY YOU HAVE INTERVIEWED SOMEONE WITH DEMENTIA.

Why can’t the media accept that more people are being diagnosed with dementia earlier at a younger age, and can still hold a sensible conversation.  

I need to have a cup of tea to calm down now 🙂

Dementia Action Week for me

Good grief time flies.

Dementia Action Week was all go!  On the Tuesday I was at the launching of Dementia Friendly Murton working group, which I might add was a fabulous decorative do, with a spread of the most delicious looking home baked cakes, and sandwiches you could ever wish for.  The Ribbon Academy, Primary School children were absolutely delightful, they sang a couple of songs, and came round to everybody in the room to chat.   All sporting their Dementia Friends badges on their left collar (as suggested by one of the pupils), they embodied what being dementia friendly is about.   I spoke to them about the importance of becoming a dementia friendly community from the view of someone living with dementia, which was followed by filmed ‘Ask me anything’ questions.  Two girls, Molly and…I can’t remember her name got together and thought up the questions together.  My word I am so glad these children are our future.  They get it.  They understand why learning and knowing can help people living with dementia.   Some good question were asked, one with nearly stumped me; “what do you find most frustrating?”   I could think of a thousand answers but it had to be a short bite size one, so the only one I could think of at the time was losing things in my house after I had put it away safely!

The Thursday was to give two Dementia Friends sessions to parents of Seaham Trinity School children who had already had their sessions, but, no one turned up!  Not in the morning, nor in the afternoon.   I can say that the Head was not happy.  Shame on the mums and dads.  Next time maybe.

Friday we had a stand in the local Byron Place Shopping Centre, kindly offered us by the Gemma Stokoe, management of the centre who is firmly committed to becoming Dementia Friendly.   It certainly is great to have support and commitment of local businesses.    This was an information day, and lots of people asked us for leaflets and information.  I found it sad to see some people lower their heads and walk past as I feel that they are the people who probably wanted to ask for information but were afraid to.  In close communities that have pulled together in tough times for years gone by, Dementia is still a stigma in families.  They are hiding it away inside their families.  Oh how I feel for them, I want to say “what if you could talk to someone, get some support.  Feel the relief of someone who talk to you, and help make things easier for you.  Make the life of your person brighter by giving them an opportunity to attend groups”.

So Dementia Action Week was a positive week even though I got really stressed and anxious before hand.

 

 

 

Confusion, viruses, overmedicating with Dementia

I was poorly earlier this week.  Monday morning and I woke feeling okay but it went down hill from there on.

61w3maLkAxL._AC_UL200_SR200,200_I went to take my medication and hesitated, the compartment for Monday morning was empty… had I already taken them?  I felt so confused.  I had a vague memory of thinking that I could take my Monday mornings medication from the original packs, or did I?  Why would I do that?  What reason would I have for doing that?  I couldn’t think what to do but decided that I had left out my original medication boxes for a reason and took my usual dose.   It is hard for anyone to understand how you can get so confused at either sorting out your medication or taking it, but when you have dementia confusion is all so real.   When you come across so normal to most people and look like you are in control of everything, conveying that you easily get confused is difficult for most people to believe.  But, on Monday I was confused.

Then I started to feel very sick , started vomiting and continued to do so most of the day.  My daughter arrived at lunchtime and called 111.  There is a stomach virus doing the rounds so I may just have been unlucky.  But, one of my tablets is for newly diagnosed overactive thyroid so doubling up on that didn’t help.  I was feeling too poorly to say I may have doubled up on my medication.   It probably was the virus but certainly wasn’t helped by taking too much of my medication.

I took advice the next day from a pharmacist and then my GP, and have sorted out Weekly Pill  packs for the future.

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This is a Nomad pack. Pre packed medication by the pharmacist

Never underestimate the possibility of someone living with dementia to be confused however well they live.  So, it helps to plan and put solutions in place to continue to live well without stress.   Most people already know about these weekly pill packs, but may not necessarily feel that they need to use them yet.  From my own experience, I am certainly going to feel more confident using them so that my occasional confusion won’t cause me to overdose on my medication in future.

 

 

I became a Dementia Friends Champion

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Last week I attended a session to become a Dementia Friends Champion.  I guess there were around 15 of us from all walks of life and jobs but I was the only person living with Dementia.  Obviously when I go places it is not something I announce to the world and his wife, why would I?

Why was I there?   I’ve already accompanied others when they have delivered Dementia Friends Sessions to both adults and children in local schools as part of working towards becoming a Dementia Friendly Community, with the steering group Dementia Friendly Seaham.  So it seemed natural that I could start delivering them myself at some point.  Becoming a Dementia Champion you start by committing to delivering one session in the first four months, and that can be to just one person (family and friends) or to a group of people (etc workplace).

Getting back to the information day.  I am not sure how I felt at first, listening to the facilitator talk about ‘people living with dementia‘, as it felt like he wasn’t talking about me.  It is a very strange place to be, listening and ‘learning’ to read a script educating others about dementia.  I somehow felt detached emotionally from the whole event, even though inside I kept thinking “this is about me”.

The script is necessary because it is about facts, and gives standard information that is not  personal but really informative.  Every dementia friends session given around the country will be the same.  This is how information works best and Dementia Friends Sessions are so, so important to educate as many people as possible about how, individually, they can make a difference.   It is as simple as being aware of how a person living with dementia can see the world around them.  Example – Black door mats = holes in the floor, or difficulty counting money at a supermarket checkout slowing everyone up.   Those are just a couple of small examples.  For me the real bonus is about people just learning to have a bit of understanding about the many difficulties of living with dementia.

So, here I am in this Dementia Champion Session feeling somewhat disconnected from everyone around me, obviously this was just a person introspection of mine and not in anyway about the people I was with.   I think that sometimes I just wish I was one of those people learning about dementia and not living it.

Anyway, it was a good day and I came away with the confidence that I could do this, I also caught up with people I had met before with was lovely.

I am looking forward to delivering my first Dementia Friends Session following the script, and possibly at the end when I finally ask the people attending ‘what someone who is living with dementia looks like?’  I will say “me“.

Alzheimer’s and living

Sometimes, on a good day, I find it hard to believe I have Alzheimer’s.  I question whether I have ‘dementia’ as a symptom.

Of course it doesn’t last long the wonder and the doubt, because I looked at how confused I get at certain times, and the lack of memory intake of recent information amongst other things.

What I am understanding is how I can never be seen as totally ‘normal’ and I then think how can anyone want to be friends with me knowing that I am slightly broken?   I think I have always been a person who spends a lot of time alone, feels comfortable with my own company.  Sometimes that can be a sort of a silent world, when I have no radio, tv or music on.  The silence feels okay and I don’t feel lonely, but I do worry that it is my way of retreating from a world that I have always felt not quite at home in.  That is of course, the dyspraxic part of me speaking, but it has an impact on how my Alzheimer’s is.

When my ability to be coherent and indeed, sensible in my thoughts, ideas and speech shines it is difficult to see any brain disease.  But, I know it’s there.   I know my vision is currently a problem.  Patterns are beginning to dazzle, confuse and mislead me into being cautious of levels of flooring.  Steps where there are no steps in changes of colours, missing steps where there are steps because of the lack of contrast.  This is all new for me, and quite I feel quite shocked by it.  How can I mentally feel so alert and normal still and be affected by these Alzheimer’s symptoms at the same time.  I am grateful that my progress is still slow and is more physical than mental.  I am fascinated by all this and would love to be able to have an MRI or scan or something that I can look at and see exactly what parts of my brain have ‘holes’ now.  I loved the neuroscience part of my Psychology degree and if I had the energy I would really like to read current thinking on it!

I have been reading books again which is good.  I took my kindle on holiday to Cuba, yes Cuba! and read about 6 books, lying in the shade on the beach in over 30 degrees heat!

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Going through airport check in can be a problem now as they try and hurry you but I can’t be hurried anymore, the more they chivy me along the more flustered I get.  I should have learnt the word for dementia in Spanish before I went!  Booking assistance is a bit hit and miss and not really available/understood in some countries.  However, I love travelling still and don’t want to stop until I physically have too.

I loved Cuba and its people who have been shielded from a totally consumer driven lifestyle.   They are friendly and if they stop to talk to you in the streets, they are not trying to sell you anything, they just want to chat.  The county is lovely but like stepping back in time in parts with oxen ploughing fields, although there are tractors too.  Cubans are proud of their country and who they are and I feel deservedly so.  Their political history fascinates me and I realise that I hardly knew anything about it other than the words: Fidel Castro, Che Guevara, revolution and Communism, and that says very little.  We had a private taxi and a guide who was so knowledgeable and spoke with an Eton accent!  He laughed telling us he had no idea how when learning English in school he managed to get his posh accent!  Us British are so embarrassingly poor at learning languages, why the heck don’t we take pride in pushing languages in schools?

Being in Cuba did not present a problem for me at all, I don’t think I mentioned it to anyone, I didn’t need to.  I think the simplicity of these countries do not have visual difficulties of shiny floors, fancy patterns etc.  To my mind we have become like magpies obsessively attracted to a complicated shiny world.  Bring back simplicity in architecture, and design both inside and out I say!

I can still travel the world making memories of being in these places that sticks in my mind and live well with the brain disease Alzheimer’s.