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………….

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.

 

 

 

A Dr failing to understand Dementia, and the risk that poses

I had a disturbing appointment at my GP on Monday, one which I can’t quite get out of my mind.

I had a letter giving me an appointment for a “Medication Review”, okay, so this is just a review no need for my daughter to come with me.

I get into the Doctors surgery to be told this is a Dementia Review.  That is not what the letter says, I think but hey ho I have never yet had one of these before so I will go with it.

Dr C reads directly from the screen and I answer his questions.  They are short and succinct and not very useful to anyone really.

Dr C:   Do you have a carer?   Me: No     Dr C, mumbling to self ‘Oh there is not a box on here for not having a carer’       Failing number one, he knows me and understands I live alone and manage well.   Not all people with Dementia need carers for quite a while.

Dr C:  (he talks about this being a difficult question) Have you thought about an Advanced Directive, and DNR (Do Not Resuscitate) and have you got one?

Me:  Yes I have thought about it and I want DNR when the time comes, and I haven’t done one yet.

Dr. C gets a form out and starts filling in, ‘We can fill one in now’.  I answer general questions and he says that as my Daughter isn’t with me she will need to sign it, after I told him we had talked about it.

Here it comes…………..

Me:  Obviously I don’t want that now because I am fine.

Dr. C:  “This is an Advanced Directive for the future”

Me:  Yes, but I am not likely to have a heart attack now, my heart is healthy.  [I have recently had a heart scan and an angiogram and have been told my arteries are healthy and my heart].   And, I am capable of leading a perfectly happy life-style now. So not yet.

Dr. C:  This Advanced Directive is for the future 

He repeats this several times, and I am saying yes but not yet.  Then Dr. C says ‘maybe we can look at this on a yearly basis then’ and rips the form in half and places in the bin.

I am mortified.  I am more than that.  What just happened here?   This GP was suggesting, and filling out a form so that I would not be resuscitated should I need be in the near future, in fact it could have been next month even.  I have no intention of doing this until the time is right when my dementia is advancing rapidly.

What is scary, this GP appears to have no idea about Dementia at all.  The more I think of it I am very concerned that Dr. C could be a danger to patients.    How can this be happening today when there is more knowledge about Dementia than ever.  I realise now that even though when I ask him to explain things because of my dementia he just doesn’t get it.  He will just say the exact same sentence, so that I have even told him that repeating himself doesn’t mean I will understand any better!

I am changing Doctors rapidly because what if, that form had not been torn up and I was taken ill next week and needed resuscitation?  Obviously this is not the only reason, there are others that are equally worrying.

 

 

Is dementia fascinating in its development? Maybe.

Bizarrely I have developed an obsession with counting fingers and toes.  I know a bit weird eh!   It’s just that when I see a picture of people or animals hand or feet, they look like they have far too many digits on them!   This is only when I see pictures mind you, not real hands or feet, or I don’t think so…no, I don’t usually focus on peoples hands..but I do focus on cats paws now I come to think it!

What is this about eh?  I can’t just think ‘that’s a nice ordinary looking pair of feet’ , I actually have to count the toes, or fingers.

Far too many digits here!

Some might say, what a load of rubbish, what has this got to do with Dementia.  Answer, probably nothing, I have no idea.  I do know that I have not spent my life counting fingers and toes and this is new to me, this compulsion.   Why I thought to write about it was because it made me think of fiddle blankets.

It makes me wonder whether the change in the brain that makes some people with dementia more comfortable with keeping their hands busy with buttons and ribbons and the such like has any link to me needing to confirm that what I am seeing (fingers and toes) is just fooling me into thinking there are more.   Okay I understand that it could be more to do with anxiety but that’s not how it feels to me.  I don’t feel anxious about it, just curious about the illusion that I am seeing more than what is real.

So, I still have no idea why this has become something of a ‘thing’ for me right now but I think I might make myself a fiddle blanket for my future and maybe put some fingers and toes on it to count!!

Dementia is more complex than most people realise.

🙂