The importance of being a voice of Dementia

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Been a while since I have put pen to paper/keyboard.   I have been away travelling the world again.  Making the most of life, making memories to look back on, to be reminded of when my dementia has progressed.    I will upload my photo’s, look through them, and then write about my experience as a traveller with dementia later.

What else..When I got back I went to Chippenham with the Alzheimer’s Society to take part of a training day for staff in the Swindon area about using PLWD (people living with dementia) appointing staff and volunteers.   My part was a short talk about how important it is for PWD to be involved in every part of organisation aimed at supporting them, whether that is by activities or information.  As it would be with anyone caring for a PWD.

I also sat with each of the groups during exercises which was very interesting to experience.  Hearing how one group of people thought it was not appropriate for someone with dementia to be part of the whole process with volunteers, thinking that it should be reserved for induction training.  That was interesting listening to that train of thought, one which I believe will be discussed and addressed further.

I was able to contribute by talking about why I feel it is so important that we have a voice in the Alzheimer’s Society.   Also, how much they need us as much as we need them.

Once they had discussed whether it was appropriate for someone living with dementia to be on a panel interviewing, I gave my personal thoughts and experience of why it is important for inclusion of PWD and on own experience of being on a part of a panel interviewing for a post in Reading Alzheimer’s Society.  I have been really grateful for Sarah and Claire there for allowing me a role in so many things with the Society.

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The thing is, being able to be a small part of Alzheimer’s Society work gives me a sense of purpose, a sense of dignity and obviously a voice for all of us living with dementia locally.

What was exciting was to talk to one of the members there who is just starting a *SURPs group (Service Users Review Panels) with people with dementia.  What is more she was excited to be setting up this local project.  I just know she will make a great success of it.

I think it is important to have a voice in how services are offered to us.  It is important to have a voice in anything, especially locally that affect us in any way.

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I urge anyone who is living with dementia and feel that they can still have a voice, or if you are caring for someone, or living with someone who you think who would like to have their voice heard, please do contact your local Alzheimer’s Society, Dementia Action Alliance, councils and any other groups to see how you can be involved.   It is not scary, it is personally empowering, it is as much as you want it to be or not.

*Service User Review Panels (SURPs) are a type of User Involvement group and provide an opportunity for people with dementia to influence the work of Alzheimer’s Society wherever they live in England, Wales and Northern Ireland.

Now to upload my photos from my wonderful travel and then I can tell you all how it went. x

 

 

I feel angry…

Why oh why are there so many articles about how to prevent dementia by changing your lifestyle?  This Guardian article makes me go……. Grrrrrrrrrr!

Lifestyle changes could prevent a third of dementia cases, report suggests

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Before commenting, read the article please.

What I would like to say is that change your lifestyle to drink less, stop smoking, be more active, keep your brain active and it will make you feel better, make your health better but it WILL NOT STOP YOU GETTING DEMENTIA.

The research/study they must be using to suggest lifestyle can prevent dementia can be applied to any of the following:

Heart disease, Lung disease, obesity, high blood pressure, Diabetes, help with arthritis..and any other condition that being active can help with.

Articles like this make me so angry.  Why?  Because it gives false hope and mis-information.   At present there is no cure for Dementia.  Research has yet to find out what causes dementia, they are beginning to understand what is going on a bit better, but not why this happens.  If they did all of us living with dementia would be on some sort of medication to reverse it, or totally halt it, and we are not.

These articles are really about unhealthy lifestyles and what can happen in the long term.  So why not write that?   Some dementias can be directly through lifestyle such as Korsakoff Syndrome caused by alcohol misuse or nutrient deficiency.   Some dementias can develop through the result of traumatic brain injury.

Here are some REAL sites to find information about dementia from professional bodies and people leading the support, help and information sharing for dementia.

So, I wish these newspapers stopped writing this rubbish just to fill space because it is not helping.

Rant over……..

 

 

 

Proud to present…..

This is my story in my own words with the help of journalist Penny Bell who is creating a series about dementia, you can follow her on Twitter here.  Or view Linkedln profile  here.

Discovering Dementia, Season 1, episode 3 Gill’s Story

I recommend you also listen to the first two episodes:

The first episode is with her Mum who was diagnosed with dementia.  This is lovely to listen to.

The second episode is recorded at the Alzheimer’s show held in London.   This will give you an idea of the shows that are worth a visit to learn everything about dementia, for people with dementia, family and carers.

I know Penny has more to come.   It was fun working together with her during the recording, especially as she came along with me to the YPWD (Young People with Dementia) gardening group which I love.

Groups for younger people with dementia are very important because it stops isolation if you live alone, enables fun activities which are age appropriate.  Younger people with dementia have different needs to elderly people.  We come from a different era, singing groups will focus on 60’s and 70’s music, nothing like having a good old sing song to ABBA and the like!   Not that I sing, in fact I have no singing voice at all, when I try to sing a weird soundless screech emerges that is not very pleasant.  If I am ever required to sing my miming abilities knows no bounds.

Sadly there are not enough groups that support younger people living with dementia throughout the county.  Especially groups that provide a wide range of activities such as walking groups, Kayaking, Art workshops, Poetry groups, gardening groups, furniture recycling… the YPWD offers all of these and more in the West Berkshire area.

 

 

 

 

Reading Buses and Dementia friendly signs and instructions

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This is a picture from the internet of Reading (in Berkshire) bus ‘terminal’ stops.Spot the No 1 to Newbury stop….don’t see it?  nor did I when I was there yesterday.

Firstly I must say that Reading is upgrading its service into colour coded bus lines.  Each colour has a different area.  Newbury bus line is Jetblack where the buses are grey and black, some of the newer buses being grey, but no problem.

So I had a trip to the Royal Berkshire Hospital, and travelled into Reading by bus.  Because it was before 9 am I had to pay £5 single because my disabled bus pass card does not start till after 9.30am, something Newbury Council has changed to save money.    It takes a full hour on the bus so I guess that is not a bad price.   When I get to Reading I get off and then have to look for another bus to take me to the hospital.  I had done some research and thought a number 19b would be suitable……but none of the bus stops have any signs telling you what buses stop there!   As you can see on the map Station Road has about six bus stops/shelters but all without any signs.   All the time there is a steady flow of different coloured buses passing, stopping, then carrying on.   As to where they are going that  remains a total mystery to any visiting stranger to the town.

I am pain because of my fibromyalgia and I was feeling quite stressed out by now because I don’t know Reading at all having only visited the town twice before, so I walked up and down looking for signs to tell me where the hell all these buses were heading to.  Nope, nothing.

Fortunately there were some drivers standing around chatting and I asked them what to do and they pointed me to a bus which would take me where I was going.    I got on a bus, got off and then proceeded to navigate the hospital.  No it wasn’t a 19b but it was going where I wanted it to!

So I tweeted to Reading buses:

The hospital

The letter says:  Main x-ray department…..  so I follow signs up to the second floor (this is a weirdly set out hospital believe me) only to realise that it isn’t the right place.  So I look at the letter again and further down it reads ‘the Mammography department is on the the first floor’  So it is the Main X-ray department in the Radiography department!!!!      How many MAIN X-RAY DEPARTMENTS have they got for goodness sake!

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What I want is a bullet pointed ‘letter’ that has roughly these bits of information on:

A Heading With Appointment DATE and TIME

  • Department name  e.g.  Radiography – Mammography,
    • Main X-ray of Radiography department
  • Detail of how to contact the department if need to cancel or change appointment – with Telephone number etc.
  • Instructions:  Arrive 15 mins early for whatever reason
  • Do I need to bring anything with me?  No
  • What to wear:   You will need to remove your top.
  • How long will this take:   15 mins
  • When will I get the results:   Result will be sent to your GP/consultant may be able to talk to you at the time of the appointment.
  • And whatever else is necessary for the appointment……

How to get to the hospital:   A separate piece of paper showing:

  1. bus services
  2. small immediate road map
  3. parking
  4. Bus service numbers and stops outside of hospital
  5. Map of Hospital Departments

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I find it hard to wade through all the words of a letter these days.  I am only really interested in the information that I need.  I do believe that this is not just about dementia because there must be other people who struggle to read standard letters that have too many superfluous words on.   This is something I will take to my DEEP – Empowerment Group I think.

By the way, the staff in the hospital and are lovely even though every one of them had absolutely freezing cold hands!   They could do with a small hand warmer in every room.

Living in Pain and not remembering why

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Living with dementia can be strange because you don’t always feel like there is anything wrong with you.  In the early days, you know that there is something ‘not quite right’ with you but you can’t always put your finger on it.

I don’t feel like I am any different to any person over 60 whose behaviour and memory is starting to get a little wonky, but in reality, there are things that are creeping up  that I am not comfortable with about what is happening to me.

I keep forgetting what it means to live with Fibromyalgia.   I live with pain 24 hours a day, 365 days a year, in my feet, wrists, hands, knees, back – hell everywhere really.   So when my fibromyalgia is flaring up and I am so debilitated by the pain and fatigue, I should not wonder what on earth is wrong with me.    I toddle off the the Doctor’s to find out why my finger is so swollen stiff and excruciatingly painful with a lump on the joint (which later disappeared).  At the same time I tell him my glands hurt, my eyes are sore, it is uncomfortable to breathe and I am in so much pain I can’t get out of the chair.  I sleep for hours because I feel so ill, but I can’t sleep at night because the pain is so bad.

I have some blood tests done, even though he says he thinks it is just my fibromyalgia……..I go home and feel a fool.  How did I not remember how ill my Fibro flare ups make me.  Now I feel so guilty that I am beginning to recognising that this is happening every time it is at its worst.   I simply forget how ill it makes me.

I think this is to do with my dementia.  Yes, I function fabulously day to day, but living on my own has its drawbacks.    This is one of them, having no-one to suggest to you that this is simply a Fibro flare up, and can I remember how it was having the last one?   How bad it got, how ill I was.   No cooking, cleaning, in fact daily living just stopped because I was not able to do anything.  ‘Fibro Fog’ meant I felt more confused and forgetful than usual.

When these times arise and I am sitting amongst the mess of my home, living off quick snack type foods, too exhausted to wash, I look at whether my dementia has worsened.  I think I am less able to be spontaneous than I have always been.  I find it harder to ‘sort’ things out and it takes me more time than it should.   There are times when I think ‘why didn’t I think of that?’ when something obvious has been pointed out.   I feel like I am forgetting a lot of things that I have learnt.  Recipes I have cooked forever, people’s names, places, things in my past.  However, having dementia means I always adapt and not worry – try not to sweat the small stuff.

So, right now I am in so much pain without any painkillers that will touch it, waiting for it to dissipate enough to function normally again and somehow I need to make myself a reminder to understand the next time this happens that the possibility that it is my Fibromyalgia and to wait but what happens when I can no longer understand what is happening?

Quandaries and solutions

Life goes on with its ups and downs and you think, ‘I really must write my blog‘.  But then you think ‘I better not write that‘.   I know that many of you know what I am talking about because it is that moment when you have an urge to share something very close to you but worry that it will cause a problem if others read it.  But how to let people know how everyday things affect you otherwise.

For me, living with Alzheimer’s (ALZ), there are things I want to just write because I am at a very early stage still and it may be of use to people knowing even at this stage how it affects me.    So, what do I do?  My blog is not anonymous in the sense that it has a name, not a random couple of words.  Maybe that was my mistake, maybe I should have made it more anonymous. I could have called it something like – ‘Missing A Marble‘ perhaps.   I guess it would not have made much difference apart from not being seen as a real person.

There are lots of things that go on in my life where my ALZ or dementia affects me but only in the slightest way.  In ways that would make me question why it affects me that way in particular.   The type of wondering that lingers in a corner of your mind knowing that you can’t quite put your finger on why you should react that way.

For a while, I have been under some stress at specific times.    To all people living with dementia, stress is awful but then stress is awful to everyone you could argue.  Why is stress worse for me?  When someone is shouting at you and you have no way out, it can make your dementia feel worse.   Most people can shout back, hold their own, and stop abuse towards them, and of course, there are many who simply can’t.  But, what if you have always been able to deal with angry people and suddenly you can’t?  You find yourself trying to diffuse a situation where someone is shouting in your face about nothing in particular, maybe most would find it difficult to do.   Not me, I trained three years as a counsellor, I understand how to diffuse situations, can read the body language, can see past the abuse that is vomiting from someone’s mouth.

Now, though as I draw on all my knowledge and experience, all I can come up with is – “la la la la la la” as loud as I can!   Worked, but even I realised that it was a bizarre thing to be singing at a time when another person is at their most aggressive.

Next time is different, I can’t cope with being shouted at.  The red face thrust at me as the mouth is opening and closing with the most absurd ridiculous noise emanating from it.  I start shaking and crying as I call the police…..

I have Alzheimer’s, I don’t need this. Nobody needs this.  But, I, cannot cope with it.  They should not be abusing me this way knowing I have dementia.

This is what families can do to each other.

But,

I strike back.   I will not be overlooked, patted on the head and accused of being “unstable“.  I will show you how capable I am.  How I can still organise charities to pick up furniture, quotes for house clearance, create timelines, communicate with solicitors, get things moving.  Not because I want you to see me being capable, but simply because I have the time and I can do it.