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.  🙂

 

 

 

“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.

 

 

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.

 

 

 

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  🙂

 

Dementia Friends sessions in schools

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Today I went along with a Dementia Champion to a Primary School where I live to deliver a Dementia Friends session.

Oh my word, I was absolutely blown away with the comments the children made when asked questions.    Questions such as ‘when memories have gone from recent events, what is left?’   The number of children who said ‘feelings’ was amazing.

They simply get it.  You can see their minds working and understanding what they are listening to.   They sit quietly, and listen, they write their ideas on what the brain ‘does’ on the brain pictures we give them.    At 10 years old they try and think about what memories someone of 70 has.   How difficult is that when you have only lived for 10 short years?   Things like ‘losing your husband’,  and becoming a grandparent.

I am so hopeful for the future when I see and hear the compassion and understanding of children today.  They are our future, they are the people who will perhaps be caring for their parents one day.

I am simply in awe of the pupils today of Westlea Primary School in Seaham, County Durham.  This is the second time I have been part of Dementia Friends Sessions in schools and I can’t wait to be part of more.

More importantly how wonderful is it that schools are so willing to be involve in becoming part of a Dementia Friendly Community.   A lot of adults could learn something from their children I think.

At the end of April I will undertake my own Dementia Champion training so that I am able to take Dementia Friends Session as well and I look forward to that.

🙂