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.

Diary thoughts with dementia

Sometime life feels like it’s in limbo.  Waiting for something.  Thinking I should always be active and not sitting alone quietly sewing or enjoying a film on TV.   Waiting for time..to what..pass?  I don’t know, maybe this is just how dementia feels like?    Does it feel unhappy?  Nope.  It just is how it is.

Sometimes when I have a diary full of meetings, and events, I just roll with whatever that day brings without feeling I have had any input into organising it but have simply turned up and been a small part of it.    A big hand that fills my diary and hands it back to me smiling.  “This.  This is how you will fill your time in a pleasant and meaningful manner“.  I smile as I take the diary and look with curiosity to see what pleasures I have for the coming week.

Then there is the ‘To Do’ lists I have written down on the righthand page of my Moleskine Diary.   This, however, gives me a hidden creeping fear, no not fear; anxiety, yes that’s it. Anxiety.  I have agreed to do this thing, and now I am scared that I cannot carry it out or finish it, or even start it.  Always in my head ‘I can do that’ , until the time comes to start it and then the dementia reality sets in.  The hesitation of indecision, the confusion of my own instructions where everything falls apart.  Followed by the quiet talking to myself – “I can do this, step by step.  Don’t overthink it“.  Then I when I finally start I am more confident to say whether I can do it, or whether to say I tried but it is now beyond my capabilities.   Admitting when you can no longer do things can free you up to do more of the things that you CAN do.

So, in reality I have a mixture of a Diary life, and my chill out self preservation life.  I attend meetings, give talks about my dementia, am part of a group working towards making my local town dementia friendly.  Then I have my withdrawal from the world life where I stay at home, alone, enjoying my own company, doing a bit of housework, and a bit of craftwork.  But, I also have my craft workshops for dementia in my diary that I attend and love because it gives me inspiration, gives me a place to be with other inspiring people living with dementia.

 

 

Dementia and a visit to the Doctor

Having dementia means I now have to push myself to do things, but recognise when I need to step back and say that’s just too much.   Am now having some tests done for Angina, which has stunted my physical activity for the present.   I just hate it when my body throws me a new problems to deal with.
This has been a long standing problem, and 16 months ago was diagnosed with asthma which may have been incorrect.   I realise that I find it extremely difficult to explain symptoms when visiting my Doctor so have recently been taking my daughter with me.  She tells me I give too much information which can confuse things because they may not be relevant.  It is that difficulty, to sift out what should be said and what is not relevant that eludes me at present.  I need to plan out what exactly I will say when I go to stop overloading my Dr with information!!
It is a help to take my daughter though because my Doctor keeps asking “how long..” and I have to answer, “I can’t tell you because my sense of time has completely gone”.  Still he asks that question, so my daughter steps in and says what she knows.  So, it is a lot less stressful to have someone who is close to you at an appointment.
Being able to be concise is something that gets more difficult with dementia, and not being able to describe something is a real problem.  Think about when you have a pain, how does it hurt?   ache; sharp; sore….it can be more difficult to describe when you have dementia.
Also, I may have a pain but unless the Doctor asks me if I have a pain, I have a tendency not to say.  Why? I don’t know, I just don’t.   My ability to offer the relevant information is sometimes lacking.
I think one problem is that I hate going to the GP Surgery.  I really don’t like having to take medication, although I will if I have to.   So when I do go, I may have a couple of things that have been niggling me a while and Doctors these days only like you to talk about one thing during one appointment.   The way my mind works is that most ‘illnesses’ have more than one symptom so if you can’t give a list of symptoms how can a doctor diagnose you correctly?   I get breathless, my inhalers don’t work, when I get breathless I keep losing my voice totally.  It sort of feels uncomfortable in my chest/neck/throat.  My Dr tells me that he will deal with my loss of voice another time but what if it is connected.  What if I think that I can no longer tell them all of my symptoms because I think that it is too many?  I have fibromyalgia I am always in pain, so won’t say that I also have pain.  I get pain in my arms, my shoulders, even across my chest so I am now confused as to what pain belongs to what.
With my dementia I am beginning to feel I should make allowances for others not understanding the intricacies of my behaviour and speech, but actually I realise that I’m wrong, it is not me who should make allowances it is others who take these things into account.
Of course Doctors are trained to talk to people with dementia aren’t they?  Sadly it seems a many need training.   All the staff in Medical Centres should become Dementia Friends; have training.  What is missed or misdiagnosed I wonder because someone with Dementia cannot tell you or explain if they are feeling unwell?    Having said that, I know that there are some superb Medical Centres/Surgeries. Doctors and nurses around, but not in every areas of the country.

 

Warts and beauty spots of dementia

Having dementia is like being on a roller coaster, with good times, and then a blip of an overwhelming day.   Mind you, life in general can be the same although with dementia it can feel just that bit more ghastly.  th-2So with an inane grin plastered across my face, (remember, smiling releases good endorphins) getting to a more positive state can be achieved adequately.

I’m getting there but thought I would share with you my thoughts so far.

My bathroom; yes it’s still empty; no I have not found help to sort it out yet; yes I am working on it.  The local Alzheimer’s Society have been brilliant in that respect and are working hard to help me.   I am feeling more positive because I might have finally found a company who are professional, use good quality products who can come in and start again and give me a bathroom.  Yay!!!  So, my overwhelming part is that I have to now find the information given me by Social Services to apply for a grant towards getting it done.  Then I have to see if I can get a loan to pay it, or see if the Company does finance preferable at 0% interest.   So, the beauty is that after 6 months of not being able to have a shower I am getting there.  The warts are that I really need someone to talk through this process with to make sure I am doing the best thing for me now that my judgement is somewhat rubbish these days through dementia.

Note to self:  for those of us living with dementia without family able to help us with decisions, it would be great to have a dementia advice line/support to chat to help us make better decisions.   Who can we talk these things over with now?  Someone who can ask us questions to make sure we are doing the right thing.   Is this something that we can put in place locally?   Actually this would work well for anyone who is vulnerable and who needs objective advice.  Hmmm food for thought….

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There are always positives to look forward to.   When my fibromyalgia is not bad (which it is at the moment – it will abate), I have a garden which will become my relaxing escape place to be in away from the world.  I am so excited thinking about the day when I can start it.  Once I have my bathroom finished, I can start saving to get it fenced, and then the gardening starts.  I am of course working on a 5 year plan!!!   I have a beautiful coastline to walk along, pick up sea-glass, watch the birds, embrace the sea breeze.

first-drink-the-coffee-then-i-do-the-stuff-one-3620267Positive actions:  sometimes just 10-15 minutes a day emptying yet another box from moving in will make me feel better, another strip of wallpaper scraped off the wall.  Continuing my creative textile course, sewing the next piece of work.  All these small things make my heart lighten.   Not least is being involved locally in action for Dementia, making my home town dementia friendly, educating, and just being involved is such an enjoyment in itself.

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So, on days when I feel alone and very overwhelmed with the things I used to be able to do without having to prepare myself, I try to look at what I love doing in my life, and what I have and what I can get excited about, and it works.

Take a deep breath, I just have to find a piece of paper I tidied away, make a simple phone call, ask some questions. Write it down so I don’t forget and can make sense of it.  

Today I can do these things.  Putting my pants on now.