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  🙂

 

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.

🙂

 

 

Dementia Friendly Communities

Been just as busy February as January.   Last week I spoke at the launch of Blackhall and Hesleden Dementia Friendly Community.   Since our own launch of Dementia Friendly Seaham things have been moving along nicely.   But boy, these things take work, and time and commitment.

What does it mean to launch a dementia friendly community?   Look around your own community and see if there are any stickers on shop doors that indicate that staff have taken part in Dementia Friends Sessions.  How many do you see?   The large supermarket, does that have a dementia/disability friendly slow checkout lane?   What about cafes?  Your local library, council offices, your GP Surgeries?  What sort of groups are available; support for carers, peer groups, and activities, are in your local area?  Where do you think you would find out information telling you what there is?

Out of all of the members of our working group there are, effectively, only two of us doing anything.  Working groups, should be that, not just meetings where we discuss and others ‘do’.     However, there will always be people to want to make a difference and do put their time into making a change.  Equally there will be people who can network locally which is just as important.

My talks are becoming slightly more hard hitting, so that I am prepared to say that I am still waiting to meet more people like myself in my area.  Where are the people living with dementia I ask?  Why am I the only person able to speak at these events.  Reaching people in your own community living with dementia is not easy when you have no provision in place to sign post after diagnosis to support that does not yet exist.

My area with the aid of the Alzheimer’s Society have made wonderful strides towards looking at how we can be more inclusive to all.  There are a core of people that I meet at these events who are fabulous and work extremely hard at promoting change.   What I would now like to see is the general public supporting us.   I am touched when people come to speak to me at events telling me how brave I am to speak out, but I don’t feel brave, I am not brave.  I just have a desire to make things better for myself, and for the other people living with dementia in my area.  I just want to be able to have the choice of different groups I can attend or get involved with.  I don’t want to be sitting at home whilst my Alzheimer’s progresses and have no art group to go to, or anything similar.

When I am at home I am scared.  I feel dread at having to think and write a talk for the next event.  Maybe this is my dementia making me shrink back in stepping forward.  Part of me longs for someone else to take over but then I know I will never be able to step back and not get involved.   There is a wonderful core of people who are working hard, but I want to be a voice for dementia because I live with it, they don’t.

It is hard work for me to do these things on my own at home, the will is there but I have to admit to struggling to follow through sometimes.  I am finding that I can no longer organise things that need to be done ‘just like that’.

Days when my Fibromyalgia is flaring and I am wracked with pain making it harder, and now it is possible that I also have Chronic Fatigue Syndrome which is pants quite frankly!  I have to pace myself so that I can do one major thing per week with the Alzheimer’s Society, attend Art Group, my Knit n Natter group, then sleep the rest of the week.

I find it harder to get things sorted out at home these days, the small damp patch that needs doing before the walls can be painted, and the skimming of the ceiling too.    I need to find someone to help me dig the garden over, re-fence…….   Why can’t I just do these things?  I don’t know why, all I know is that I feel scared to do any of it.  It doesn’t make sense.  Once I have forced myself to do it I am relieved.  It almost feels phobic.   How I wish I had someone who could actually sit and do these things for me, or with me.  I am understanding that it may be time to de-clutter massively ready for when I progress.  Time to get a cleaner to help me keep my home clean and tidy.

In the meantime I will continue amidst the constant exhaustion, to give a voice for dementia when I can.26992176_1933561930010577_3170965173589389220_n

 

 

 

 

 

Dementia: a disability?

I have recently seen a question that asks if you consider yourself being disabled living with dementia.   I think this is a really interesting question.

One of the meanings as in the English Oxford dictionary is:

Disabled:  1(of a person) having a physical or mental condition that limits their movements, senses, or activitieshashtag person not disability

Do I consider myself having a disability?  Yes I do have a disability because I am now limited but not restricted in what I do.  But the whole question of whether living with dementia is a disability is another question all together.  Some would argue no, because it is a life limiting disease not a lifelong disease, but even that argument does not stand up, because there are other diseases such as MS (Multiple Sclerosis), or Anxiety and Depression that can be equally life limiting.

I think the difficulties lay with getting a diagnosis in the first place.  Do you have a disability only when you have a diagnosis?   It would seem so.  Which brings me back to Dementia.  Speaking for myself, I consider it to be a disability because I can no longer carry out my everyday life in the way I used to, mainly because my mental capacity to organise things is diminishing.   Physically my body is not working like it should either as the signals and messages from my brain are getting more foggy.   Mentally, I can go into a ‘meltdown’ where I need to shut down in peace and quiet, alone, when things get too much to process.   So yes, I would consider myself to have a disability.

 

As I have said before I have two disabilities, but Dementia can mean the other is overlooked.  Fibromyalgia for me means living with constant pain restricting my physical abilities.  During a ‘flare up’  the pain and exhaustion is so intense throughout my body that I do very little other than sleep.  Fibro ‘fog’ melds with dementia to shut me down for a week or however long it is.   However, I may not tell anyone around me that I am in more pain than usual because I live with it dailyinvisible_disability_stickers-r449f8209b2e24f9e99cbbfda6d03ece2_v9i40_8byvr_324

Does this stop me doing things?   It slows me down certainly, but you can adjust your life to cope with it as much as you can.  Disability is a noun and identifies what hinders me, but does not stop me.

Disability is a word to bear in mind only, for each and every person has their own abilities or disabilities.

As per usual, these are my views alone and are not necessarily definitive information.