Strange times and the loss of routine, with dementia

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My goodness it is indeed a strange and dreadful time it is with the Corona virus throughout the world.    I have been struggling a bit with staying in, well, more than a bit but trying not to give in to it.  Dementia certainly doesn’t make things straight forward.

I have lost my routine.  Never thought it would matter much, but apparently it does even if your symptoms of dementia can still be seen as early days.  Who knew.  I learn something every day about myself and my disease.  Of course what this does mean is that everything has stopped….the ‘non existent’ follow up appointments with consultants to find out what my new (if any) diagnosis will be.  Appointments to investigate why I am choking occasionally, and appointments that have been investigating why I have holes in my vision that doesn’t appear to be anything to do with my eyes.   Suddenly it all seems so inconsequential with what’s happening in the world.

How difficult it must be for those with dementia who simply cannot understand, or retain the knowledge of social distancing.  When someone is used to being able to go out of their front door and wander down to the shops,  go the local pub on a Friday night and then POW..suddenly everything changes and stops.  A daily walk can still be done, but the rest of the time distraction can be tough.   One of the things to think about is creating a memory/life story book.  Doesn’t have to be a book, it can just be on loose pages.  Get out all the photos and go through them.  Sort out childhood, working, holidays and any special time that was good.  Never focus on dead relatives, even parents because it can become too distressing.   Write some good times down, so that in the future you will always have a photo to look at some information about it and a topic to chat about, especially if it brings back happy memories.

Being shut away from the outside, I thought I would be doing lots of crafting, but somehow I can’t seem get my head together enough to do that, yet.  It will come when I have decided how to focus my creativity.

My confidence has certainly taken a massive dip, down to somewhere between staying comfortable and peeping over the parapet to keep up with what’s happening with the art group.   Which of course is re-wiring itself to the circumstances.  We will, hopefully, be continuing some art at home, via ZOOM, or by post.   Wish I could remember the details but lack of the exercise of having to try to remember things has seem to taken a toll.   This of course is interesting in itself because it shows that people living with dementia who are not going out, not joining in with activities socially of any sort are likely to become more ‘brain institutionalised’, than those who do things.    What I mean by ‘brain institutionalised’ is that treat someone like a ‘patient’ and they start acting like a patient.  Same with children really, you need to challenge what they can do and what they think they can’t do to inspire their brains to be stimulated into trying different things, and hopefully enjoying it.   Not sure if that makes sense to anyone, and of course it is only my thoughts on it.

So what have I been occupying my mind with?  I have begun reading again, something I stopped doing a year ago, because I was busy.   I have to argue with myself that you are never too busy to read!!   So, I have been wading through a series of pandemic/apocalyptic books… hahaha yes I have!  I love them.  I reckon I should be okay now if everything truly falls apart because I know how to arm myself and survive!!   Anyway the latest one is truly dreadfully written, which only goes to show I am at last reading like a reviewer again.  (Having reviewed books for authors and publishers).

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I cleared the detritus (wood) in my garden to one corner, ready to dig an area which will house my little orchard.  Today I had delivered an eating apple bush, and a big cooking apple tree (maiden – long single trunk)… my daughter bought them for me at Christmas.   Will be googling how to prune the cooking apple tree to get it to fit in my small garden and not being a very knowledgeable gardener, I shall be out with my secateurs and my mobile phone watching a YouTube video whilst I do it!  No problem, how difficult can it be? 😬

I have watched plenty of films and documentaries on Netflix, TV, and Prime, so I know how the justice system works both in the UK and USA, I also know more about psychopathic murderers..well you never know when it will come in handy knowing these things.  Of course I have watched some comedy programs, re-watching some favourites.

I think we will all be a little scared of venturing out when we are able but I also think that everyone will have learned how to slow down a little and enjoy peaceful times, and the small things in life.

Stay upbeat and well guys.

Gill x

 

 

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 …

Change of site name!

Some of you who read my posts may have notices that I have changed the name of my page.  It used to be ‘Before I Forget’, and I realised that there are so many pages with that name which may be more important than mine so thought of a new name.

My URL is http://www.handbagwarrior.com, the domain which I bought a year or so ago, and I identify with the name handbagwarrior in my passion for helping to educate my local town about living with Dementia. I sometime feel like a warrior trying to support my local community to stop being ashamed of the  diagnosis and to start looking at how people can live well.   So, for me the most natural name for my site is Handbagwarrior: Dementia and me.   It has been a long struggle for me to identify who I am now.  No matter how others see me, it is how I feel about myself that I needed to change.  For a long time I have felt lost as me, when you leave work because of illness you lose your identity initially and when your illness is Dementia it felt like all that I had been disappeared then.

Today I am firmly ensconced in my new community.  I am a handbagwarrior in bringing about change in how dementia is seen within the community, and the provision for younger people and those with early diagnosis.  I work hard networking and trying to change perceptions.  I have set up a peer support group ‘Lets Meet Up, peer support group‘, and am formalising the constitution for the umbrella group ofLets Meet Up’.  So under this umbrella is also Lets meet up Art and Social Group.  Constituting the group will enable us to raise our own funds with the sale of things that the Art Group can produce.  My next challenge is to find a permanent home for the group to meet in every week.  My dream would be to have an empty shop to open up a Community Hub in.  Somewhere that groups such as ours can meet on a regular basis, a place that can house information about all the groups and charities that are available in the area.  Lots of peer support groups look for somewhere to meet, so I don’t think it would be hard to fill the place.  I have already made some noise regarding this and fingers crossed this will happen within the next year.  Of course its not just me doing this, I do have a side-kick, Lynn B.  She is a tireless whirlwind! and we bounce off each other as we attend meetings, appointments and network together to achieve what we need.  We are the working group of Dementia Friendly Seaham so there is a cross over in our endeavours.

So, my dementia is very slow progressing and during this time I have a need to get done as much as I can within my community for other like myself.

So, that is why I have changed the name. 😁

Gill x

 

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………….

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.