New diagnosis, and a failing NHS service

I feel sad for the NHS, I feel sad for us all in the UK who use it.   Good services in the NHS is a postcode lottery.  Sadly, those of us living with Dementia in the North East of England the service falls short of acceptable.

Go on prove me wrong!

On more than one occasion have I heard it said by Memory Clinic consultants and Community Psychiatric Nurses (CPN) that “once you have a diagnosis then you don’t need any other [clinical] follow ups because there is no treatment”.  Yes, that has been said to me with the advice that there is no point in even visiting me to check on my progress.   I felt that I knew more than the CPN about dementia and put it to him the reasons why the service should be ongoing e.g.  developing more than one type of dementia.

At present I am seeing a consultant at the Eye Infirmary because I am having real problems with my right eye.  After a myriad of tests, it shows: there is no physical abnormality with my eye, nor blood supply, my visual field test is normal, but I am missing vision in a barcode pattern.   So, areas of vision is not being processed by my brain.    This is becoming a big problem for me because my vision is becoming blurred.

I recently saw a Neurologist for the first time in this area, after one of the practice GP’s referred me, who discussed with me the problems that I am having with intermittent swallowing  issues, and the fact I have not progressed with Alzheimers in over 8 years.  I sometimes choke when I am eating;  it feels like I sometimes forget how to separate breathing and swallowing at the same time. Not majorly problematic at the moment as I always cough – then sneeze explosively scaring the life out of all those around me !   We talked about how it may be that my brain has to really focus on what I am doing to maintain the attention to do the actions.  Including automatic actions such as breathing and swallowing.   She suggested that I may be able to be referred to someone in Newcastle who specialises and does research regarding people with atypical dementias (dementia that doesn’t follow normal patterns).   She would not see me again but would write to the psychiatrist I have seen in the Older Persons Memory Clinic (there is no provision for younger people in this area) and suggest that.

Meanwhile, one of my GP’s at the Surger also wrote to the memory clinic suggesting an MRI because I have only had a SPECT scan (which measures blood flow).  An MRI would certainly give a clearer picture of my brain.

I was sent an appointment for the MRI and had it done.  Then comes the waiting for the appointment with the consultant (Old Peoples Memory Clinic) to discuss the results…………………………….

But, there is NO appointment!   What do I get – a COPY of a letter she has written to the Neurologist, who is not seeing me again, to say that to:

1)  this raises the question of whether I have Alzheimer’s,

2) I have FTD, Frontotemporal Dementia and

3) Starting the medication Rivastigmene very early has indeed had a slowing effect on my dementia,

4) All of the above

5) She is..

“..leaving and will not be able to follow this up with her but she will remain open to the team at this point.  If she does wish to have a referral onto Professor G,  I would ask Ken S to either liaise with yourselves or discuss with my replacement about the possibility of a referral onwards if necessary”

Let’s recap:   Neurologist is not seeing me again,  Psychiatrist is leaving and has no intention of seeing me or following up on my MRI.  NOBODY has discussed anything with ME and has no intention to.  IF, if I want  referral!!   Of course I want a bloody referral, well this has been left to the CPN who appears to know less about dementia than I do.  This is based on my experience in discussing with him about dementia some of it he was totally unaware of.  Maybe this is because he only sees elderly people who are in the medium to late stages of their disease.

Am I fuming?   Too damn right I am fuming.  A new diagnosis to come to terms with is not just a simple, Oh, I’ve got FTD not Alzheimer’s, or Oh, I’ve got FTD and Alzheimer’s.  The prognosis is different, this is my life, my health that nobody seems interested in.  It took me 6 months to come to terms with Alzheimer’s, is this something new I now have to come to terms with?

 TEES, ESK AND WEAR VALLEYS NHS FOUNDATION TRUST – YOU ARE TOTALLY RUBBISH!

 

 

 

 

Singing for the brain..my way

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Sunday at the Coalhouse a micro pub/Real Ale bar.   Open mike night every other Sunday starting at 3pm.  Home by 8.30 or 9pm!

Of course my friend Lynn and I visit this, our local to enjoy the atmosphere, have a drink and listen/join in with the excellent artists singing.

I sound like an advert don’t I, or a drunken mate trying to get you to join us for a jolly good time

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What I am getting at is that singing is good for the brain, and Dementia Choirs are an excellent way to enjoy a pleasure we can all do which is sing.  It stimulates lovely memories of music you have enjoyed as a teen/mum/dad, on holiday, a celebration, or a time in your life you associate with a loved one.   I am not talking war songs or music from the 40’s here, I am talking music from the 60s, 70s, 80s and so on.   As more people are diagnosed with a memory or dementia related illness younger it is important that music is age appropriate.

I am not keen on joining a choir, I don’t have a particularly good voice, not that matters one bit, but I think I don’t like the organised bit of it.

For me I like to hear a live band, or a live singer.   Music in the Coalhouse can range anything from folk, Snow Patrol to Creedance clear water, even a bit of Hendrix.  Now there’s my type of music at times!   To these I sing my head off!  Lynn and I are occasionally give a Tamborine and Maracas and we go for it.

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Lynn took a picture of me and my daughter singing, playing and having fun.  This for me, is my singing for the brain.  Suck it up Dementia singing loud and out of tune!!!

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So don’t stop going to the pub when live music is on, stay for as short a time as you want, choose an ‘open mike’ event, where singers with a guitar, or singer songwriters just get up and sing.   Staying even a short amount of time is invigorating.  If classical music is your thing, then how about finding lunchtime concerts?   I find it difficult to cope with loud noise or too much background noise, but this is something I find immensely enjoyable because in a small place the level of sound is usually pitched correctly and not enough to blow your ears off.  Everybody is singing, you are so engaged that any other background noise simply disappears.

So get your positive pants on and go for it …

Dementia is so complex

Lots going on, a year of changes, a year of perplexity.

You can read any amount of literature on Dementia, what it’s like to live with it, how do you know if you have dementia, what are the signs, but there is not one source of absolute certainty showing a list of traits of dementia that everyone living with these brain diseases with have together.  Not one.  Each person experiences something different, each person may have one trait, but not another.  So what is a typical experience of dementia?   It is important to know that there isn’t a typical experience.

Thing is, we need to put symptoms, traits, diagnoses into lists, tick boxed so that we can make sense of whether this person ticks all the boxes to say they have a definitive diagnosis of this type of dementia or that.  We expect the neurologists, psychologists, psychiatrists to know how to make sense of what is happening to someone to say, yes you have X type of dementia.  They do their best with the knowledge that we have about the brain, which is relatively little.

Then who really understands the nature of how the brain works, or fail dramatically, or incrementally in the non academic world?  Sometimes we feel that because we know someone with Dementia we are an expert in ‘knowing’.  Perhaps it is because we know so little that is why we are so afraid of brain illnesses, we simply don’t understand what is going on and how to deal with it.

Remember when Cancer was a word that was spoken in hushed voices, if at all.  Way back then little was know and people died horrible deaths whilst surrounded by families tortured by the process.  Cancer.  There are treatments that cure now, there are treatments that enable someone to continue to live far longer lives.  We are not afraid to say the word or talk about it.  Dying is always hard, but now deaths are easier and can be be pain free.

Dementia.  Brain cells die through disease.  We think we know how but not why it happens, what starts it?  Why some people and not others?   Auntie Lizzie used to wander, but Iris never did.  What was the difference in the two people?   Auntie Lizzie born in the late 1800’s died in the early 60’s and had no real diagnosis..  Iris born in the 1930’s had vascular dementia and so it affected different parts of her brain and different functions.   Auntie Lizzie talked all sorts of nonsense, but Iris lost the ability to speak.  She was unable to tell those around her that she understood what people were saying about her, whereas Auntie Lizzie had little comprehension any more.  Iris was bedridden with the loss of mobility,  Auntie Lizzie used the wander the streets in her nightie.  Jack feeds seagulls and paints the most beautiful pictures, he goes to the pub on a Friday night on his own and meets his mates.  His behaviour can be inappropriate because he is unaware that you shouldn’t say some things out loud, or approach people/children you don’t know and interact if you’ve known them all your life.  His short term memory is non existent, and repeats himself over and over.   He has interesting stories of working down the coal pits, and as a welder on the oil rigs.  He is mid 50’s.  Sally lives with her husband and her two boys.  She is late 40’s.  She doesn’t handle money anymore because she doesn’t understand coins and counting.  She saw some long lost friends across the cafe and catches up with them like anyone would but then looks at the tea pot and the cup not sure what she is supposed to do and struggles with the order of how to pour a cup of tea.   She talks about holidays, politics, social activities happening in the town.  We laugh at how we can never remember each others names.

Then there is the marvellous Wendy Mitchell – Which Me Am I Today (blog) who has written a bookSomebody I Used To Know .   Wendy travels around the country talking about her life and educating how to live well with dementia.   How can she do that if she had dementia, some would say.

When you look at people living with Dementia it is easy to see how nobody appears to be the same – until the final stages of their life.   That’s it, that’s the reality of how people see dementia mostly.  The final stages.  ‘Oh my mother had dementia and it was awful, she never knew any of us, and just sat’.  ‘My father/husband got angry all the time for he had to go into a home, then he died’.  ‘She kept accusing me of stealing from her’.  ‘I lost my wife before she died, she slowly disappeared before my eyes’.

So you think you know what Dementia is because you know/knew/lived with someone who has/had it.   This is one person with one type out of the 150 so types of dementia, showing one or more out of a whole host of symptoms that may not be present in anyone else.  The combinations are endless.  Just as individuals have different personalities, so do dementias.

What I will say though is, becoming a Dementia Friends and Champion is something that all people should do, because even if it doesn’t explain all the dementias it does give an insight into how living with it can be.  Knowledge is the best form of action towards becoming prepared for the future, and inclusive in their own community.

Seven years on and my dementia is….what.  I don’t know.  Any different?  A little.  Progressed much?  not sure, a little.   People are questioning me; are you sure you have Alzheimer’s?   Do I have brain damage which is causing symptoms of dementia?  How does that make me feel?  Confused…totally and utterly confused.   New brain scans to come and then what………….

Dementia: Always explaining myself

I went to see a doctor the other day, because I have a long standing problem with my knees and they hurt.   I have not been able to use steps/stairs for a couple of years now.

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So, I explain that I have a congenital deformity in my knees and they are so bad now I can’t climb stairs etc…   Doctor asks me to explain what ‘congenital deformity’ I have.  “The knobs on the top of my tibia are too narrow for my patella to move over up and down without rubbing the bone, and my patella sits too high”  I answer then telling him that I had an operation on one knee in my 20’s giving the correct term –  “A Tibial Tubercle Transfer”.   He murmurs something about my patella, which I don’t quite catch so can’t answer him.

His next question is:  “Why do you have your medication in a nomad pack?” (see my previous post on this subject)  I suddenly feel like I am in a parallel universe in a different consultation.  What?

Me:  “I have Alzheimer’s”.    Dr: “You have it delivered weekly?”  Me: no I collect it monthly.  Dr:  4 packs at a time?  Me: Yes!?!?  Another Doctor from this surgery phoned the chemist and arranged that I could pick it up once a month.  I am not housebound I cannot change my life to collect it every week.

Then I find I am justifying myself by telling him that my Alzheimer’s is at the very early stages.  I say this twice.   I swear if I find he has stopped this arrangement to give me a  4 weeks of nomads packs of medication I will scream….. Arrrrrrggggghhhhhhhhhhhhhhh!   and breathe…

Knees, focus on my knees!

And yesterday I go for some X-rays on both my knees, some standing up, then they tell me to go over to the bed.     I don’t understand what they mean?  So they repeat ‘go over to the bed‘.    This is where my dementia kicks in, go over to the bed, then what?  Do they mean me to get on the bed, sit on the bed, lie on the bed?  I am tired of my brain not working properly at times.    It is frustrating not being able to understand the meaning of simple sentences at times.  It makes me feel stupid, which of course I know I’m not but other people don’t know that when I am not responding.   The X-ray technicians would not know I have Alzheimer’s which makes me even more embarrassed that I stood there like a dummy whilst trying to work out what to do.

Hey ho.    Onwards and upwards.  🙂

 

 

 

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.

 

 

 

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“.

Staying proactive when all you want to do is sleep!

I have been busily trying to put together some pieces for a Dementia Friends working session I am doing with Rowena from the Alzheimer’s Society on Monday.  This is with Social Worker students at Durham University.

I always enjoy these Dementia working sessions as it gives me a voice and hopefully I can help towards making a difference for people living with Dementia if it gives a better understanding.

However, for the past few months I have felt so exhausted all the time and it has got to the stage where I am sometimes too exhausted to even shower in the mornings and when I do I have to rest afterwords.  I have Fibromyalgia so am already in constant pain, 24 hours a day 7 days a week…  and as I have previously said I don’t take any medication because of the side effects all of the medication.  At present I spend a lot of my days sleeping which is a tad non productive personally, but I just can’t stay awake!extreme-fatigue-contentPreviously putting together a talk about dementia for me has been relatively easy, because once I start writing I can’t stop as my head can go at a hundred miles per hour,  but lately the physical and mental effort of trying to think is so draining I am really struggling.  I don’t want this to be the end of my work, but I think I will have to reassess what I am able to do for the foreseeable future which is gutting.

So today I need to finish off what I have put together so far for one talk, and re-vamp another already written to suit.  I am not sure that I will be able to fill all the time allotted to me but will have to be content that I have done my best and not feel that I am letting anyone down too much.

Will let you know how how it goes.    Also Doctors on Wednesday for the results of a blood test, but have been told to look up Chronic Fatigue Syndrome (CFS) and see if my symptoms match.   What can I say, sometimes life kicks you when you’re down and you just have to find a way round to get up again.

Thanks for reading  🙂