Living with Dementia: I am fine, maybe they got it wrong?

I consider myself to be high functioning with my Alzheimer’s.  In fact some days I can almost feel like there is absolutely nothing wrong with me.  I’m ok.  No problem.  Maybe the diagnosis is wrong after all.  Maybe I will continue being ok forever.  Yeah!

Then something happens and it throws me.

Yesterday, I went out.   It was 1:30pm and we went to a marina and I spent a little bit of time alone browsing in the shops.  In the handbag shop I chatted to the assistant about Radley bags, Kipling bags, and I bought a new slimline Kipling purse for my small bag.  I walked around another shop full of pale goods that have no function other than to look pale and interesting.  All very nice, all very expensive.

Next was another marina, I went into the shop and bought chocolate, and then sat on the bench outside to wait and watch the world go by.   On to shopping to get some provisions in.  We walked round the town, into the mall, around some shops, and on to the supermarket.  My fibromyalgia was flaring up, my body was/is screaming with pain, have done some brass polishing on my boat previously.  But, these things have to be done!

We got home at 6:10pm.  I hurt like hell and could barely move.  Took my coat off, dumped shopping in the kitchen, and bent down to take my boots off…………….

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HOW IN THE WORLD DID I MANAGE NOT TO NOTICE THAT!!!   

My first reaction was to laugh hysterically.  Well who wouldn’t.   Then, reality set in.  Fear of not being able to dress properly.  Ok this was not the worst thing in the world but it has ‘rocked my boat’ a bit.

 

 

 

 

 

 

 

 

 

 

 

 

 

What is Dementia Friends? – I attend a talk

I received an email which said one word “Interested?”.   It was information about a talk being given at the Derby Women’s Centre about Dementia Friends (find out more here) which is an initiative with the government and Alzheimer’s Society.

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Should I go?  Then I realised that although I knew about Dementia Friends I didn’t really know what to expect of them so decided this would be a good time to find out.

There were a good mix of people there, and I introduced myself to the speaker.   Sorry but I can’t remember her name – I am not good with names, the whole world should start wearing badges with their names on!

She was pleased that I was attending and asked if I minded talking about my own experiences, which of course I didn’t.

What an excellent morning it turned out to be.  The talk was tremendously appropriate and informative.  I can see why they are so important to be spread across Britain – everyone should have the opportunity in taking part in one.

A Dementia Friend is someone who has learnt what living with Dementia can mean to people.  Everybody has a different experience but it is important to treat everyone with the same positiveness of what they can do rather than why you think they can’t do.  Never assume someone has less capabilities than they may have.

I was asked lots of questions about how I live with it, and was able to answer about how I experience my own cognitive difficulties.   It was great to meet these people and learn about the Derby Women’s Centre.  I hope to pop in again sometime.

This was my first time in public talking to strangers about myself living with Alzheimer’s and I think they were surprised because the image is always someone who is elderly and in the later stages of the disease.

How did this make me feel being there?

It was great to learn more about what education is available to everyone regardless of who you are, where you work, age, race or religion.  Dementia has no cultural specifics, and how we educate the world should be in the same manner.   I felt like I could contribute something positive, and show that life for me good.  My glass is half full not half empty!   I felt the warmth and interest of the people there and they reached out to me.  Lovely 🙂

Inspiration I take from other people living with dementia.

I just have to share this with you all.   My friend Truthful, whose blog I have referred to before has worked hard on putting together thoughts from us people living with dementia to show some great positive stories.

She asked me if I would answer some questions and whether I would mind them being shared globally.  Of course I don’t mind.

Today, I see she has posted a list of positive stories on her page and I was so inspired reading through them that I want everyone to see them.

Each of us have different types of dementia, we live in all parts of the world and have different stories, BUT each one of us feel strongly about education how we live well with this disease.

Please take a look and read through our thoughts, the link below will take you to the page.

She has called it:   PWD (Person With Dementia) Success Stories

Thank you Truthful, you are truly inspirational in your tireless work for Dementia education.

 

Coping strategies with Alzheimer’s that invokes the feelings of guilt.

There is this wonderful site by Ann Napoletan, who was a carer for her mother with Dementia. The site is packed full of information on the disease. Who can help, support for carers, support for those with the disease; what is Alzheimer’s with signposts to tests to check yourself.FUNNY-FUN-FUN.COM

One thing that struck me when I was browsing through it was that I need to address the fact that I have a reluctance to ‘acknowledge’ the trauma of caring for someone with dementia.

This is a tough thing for me to write about because I risk not meeting expectations, and of being too honest with my thoughts.

At first I thought it was a simple case of me feeling somehow angry that they spoke so loudly about the trauma of being a carer, (which I was told was my own coping mechanism), but then that made me feel really guilty. Inside my head is a chamber holding contradicting thoughts each trying to have their say; caring vs living with the disease. Too much ‘shouting’ does not allow me to sort out the mess of emotions that make me feel the way I do about it. It would be so easy to simply shut down without processing any of it and become the ‘patient with the disease’ mindless, and accepting of the confusion, blocking any meaningful process of mental activity, blocking out the effect of my disease will have on my family and friends.

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What I feel when I read about the torment suffered by carers is: irritation and anger:
Question: Why?
Answer:   How dare they shout about a disease which they don’t have. They can get support from their own groups, because they are competent enough to seek them out and have their moan/talk about their guilt of moaning/loss of life outside of caring etc. They are not facing a slow lingering death with confusion but with the knowledge of being aware of it happening.
Comment: Is that fair of me? OF COURSE IT’S NOT in fact it is a hideous thing for me to say.

Independence is something most of us fight hard for.  Meeting friends outside of the home, choosing our own actions; what to wear, what to say, who to say it to.  What this disease does is end all of that but slowly and with the knowledge it is being lost.  Fighting hard to keep it can delay it but not stop it.  Being aware that you are the cause of your loved one’s change to their lifestyle can bring on the most heart wrenching guilt – sorry I never meant this to happen forgive me.  Watching someone you love battling with; trying to come to terms this change, with their future as a carer, again causes guilt.

This is still selfish of me to write this because look..somehow I have still not acknowledged the pain of being a carer. The life you wanted to lead has been diverted to a different path and certainly not one thats easy or pleasant to walk. You want to run away from it, because you know once you take that first step in acknowledging the journey you are about to begin, your life will never be the same.

See, I have done it again – spoken for you without addressing your pain.  Someday you will speak for me, guessing what it is I need to say.

What I am trying to say is that, I am scared to read your pain about how emotionally draining it is caring for loved ones, I want to empathise, but struggle to because it is too painful for me to think that I may cause that one day.  I would never willingly cause anyone so much suffering but it seems I will.   So, if I seem self centred I apologise but right now I cannot cope mentally with how I am going to change your life, the loss you may feel of a loved one or the lost promise of your own active future.

But, I recognise that this is my coping strategy, please forgive me.

Of course I can’t leave it like that because I will also acknowledge that there will be bright times when I say something that will make you laugh that I will be able to join in with that. Times when our love will shine through and be comforting.  Times when both of us will feel the best we can that day.

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Review of my Alzheimer’s of 2014

Looking back on last year I think I have become more settled with myself. I am very proactive in looking for solutions for difficulties I have and not worrying too much if I don’t find a solution. Here are some things I think might help for people with dementia.

• I use a calendar to record everything, (as much as I remember) even writing on the notes section when on the phone and recording information I know I will forget after the phone call.
• A blackboard in the kitchen is vital when I run out of something as I write it down immediately, and photograph the board when I go shopping.

There are lots of ways to help yourself when you have dementia, and also to help others who are living with the disease. I found a great idea recently when I was reading a crime thriller. Yes, really! The main character had brain trauma which affected her short term memory, so she started to develop strategies to help build a memory database by using her mobile phone to photograph everyday things and writing a description. For instance:

new doctor: photo+name.
New appointment: take a picture of the building and label it so you can see where you have been.

How many times have we been to an appointment or an event somewhere and not been able to remember the building, or even match the building with a person who I am seeing. I get confused with who is where, and who is what service! Yes it’s an easy mistake to make but when you keep making them it gets kind of stressy. Taking a photo of the building and the person could make things easier – obviously you’d have to ask their permission to do a mug shot.

What other challenges have I met last year? Well, it has been a tough time for both my husband and I coming to terms with my diagnosis. However, he has been trying very hard to understand when I repeat something, or to explain when I can’t understand a simple sentence without getting irritated. It takes the patience of a saint when someone with dementia is constantly asking what you mean because they can’t process what you have said.

I am trying to do as much as I can to keep myself mentally healthy. Okay I know the day will come when I am unable to keep my own control on everything but hopefully I can have a good number of years before that happens.

Getting things sorted is getting harder. As you might know from my book review blog I receive books from publishers, read them and write reviews, easy right? Say what I like about a book – no sweat.  Wrong: even though I know why I liked a book putting it down in words gets harder and harder. Firstly I have to motivate myself to start writing, next comes my thoughts, but that’s where I have to really push myself. I love writing, I love words, and I love books, so why does my brain become tongue-tied when I attempt to write it for the publisher?   This really is hard work for me but I will not give in, my encouragement is the odd email from a Publisher or an Author thanking me for my honest detailed review.

Travel – I no longer have my driving licence, and I miss it like anything. Could have I carried on driving? Possibly, but really my attention is not always great now so I would rather be safe on the road than sorry that I caused an accident. I am now becoming a train and bus traveller – alone I might add! You bet I am terrified before I travel, and stressed whilst I am travelling, but so proud that can still do it.
I have downloaded a LIST app to my phone and put in every detail of my travel details, departures, arrivals, times, places, other information etc etc.
So far it has worked. Travelling to London and then across via the underground can stress out even the most season traveller, but I have learnt to be single minded follow my instructions. If, like my last journey, all the trains ceased to run out of any of the stations I was travelling from, I managed to negotiate with any official looking person in a Network Rail/British Rail uniform on which train I should be. Oh yes – bring it on (actually it was really stressful but I did it). A simple journey is no longer simple – see my last post.

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Socialising – I find myself wanting to be in large groups of people less and less. I might of want to be with groups of friends before, but now it somehow fills me with apprehension. What has changed? Too many people means I can’t always process what people are saying, combined with the fact that I don’t always get jokes. When everyone is laughing because someone has said something funny and I have no idea why, it can leave me feeling outside of the ‘group’.
Hearing – I am finding it hard to process what people are saying, even though what they are saying might not be complicated. Also, if more than one person is speaking I have absolutely nil chance of hearing one voice! One person speak at a time please. I am no longer willing to meet people in pubs anymore because there is too much noise for me to hear only one voice. It is like being deaf in a sea of noise.
Vision – Definitely need several different glasses but doesn’t everybody as they age. Some days when I read the lines on the pages are wavy, or they get smaller on one side which is to do with my Alzheimer’s. Or sometimes I cannot understand the sentences on the page and have to stop reading.  My perspective is worse I believe. I can look up a road and not be able to work out the perspective of the street, houses and pavements are. Another reason I don’t drive now.
Memory – Apparently goldfishes have more than a 7 second memory, unlike myself at times! I think my memory remains in the same state thankfully, somethings I am ok with, some things I have no memory of. I recently received a copy of a letter from my consultant Neurologist, with information that I agreed to phone her after six weeks of our appointment to discuss my medication. I have no memory of that conversation so obviously I haven’t yet phoned!
Communication: I met an online community of people living with Dementia who have inspired me to try and get involved in bringing awareness to the realities of living with this disease. That is my most significant undertaking ever. So roll on 2015 when it starts.

The thing I have learnt the most is that I STILL CAN attempt to do anything I feel able to do, but I don’t beat myself up when I fail.

Travelling with Azheimer’s

So, I travelled to London to stay with my daughter for Christmas.  A one hour journey with one change which went well I got to Euston fine.  No sweat.  Next – two tube journeys to meet my daughter.

No problem eh?  First tube was ok, I started to feel a bit anxious but the instructions were clear, get the Victoria line Northbound.  Just follow the signs.. and yes I got on the right underground train.  I alighted at Highbury and Islington and had to get on the overground to New Cross Gate.  I couldn’t see the map on the top of the wall to see where we were, and started to worry that I was on the wrong train.  What if I was on a train going in the opposite direction?  My anxiety levels started to increase.  I was no longer sure about what train I was on.  This should be so easy, I have the directions on my phone as a list.  But can I be sure the list and the train I am on is the same?  The feeling of anxiety is heightened even though I am trying hard to convince myself to calm down; I am on the correct train.

Once upon a time I would take all this in my stride, no stress, on the wrong train – no problem just get on another tube in the right direction.  Sadly now that is a harder option because I am no longer confident in trying to sort out where I need to be.

I am well aware that I am at a very High End Functioning end of Alzheimers/Dementia  – thank goodness.  Keep going like this for as long as I can.

Anyway, I got there fine and we had a very nice time, nothing special, nothing racy, just quiet and normal.  We cooked a wonderful dinner together, we watched Disney films:  Frozen, Brave etc.. lovely!

And then……we just remained cosy and normal for Christmas days.  Eating, drinking (not too much) watching TV, chilling, sleeping..etc, just the relaxing time you would want for the holiday period.

Journey back:  just hell

No trains back from Euston.  Various routes:  but mainly from Marylebone – via Banbury/etc etc..  I had negotiate my ticket on the train because I was not on the Midland Mainline.  I had a change at Birmingham Moor Street with a walk to Birmingham New Street.  Sorry but I could not contemplate trying to find my way to New Street Station so i called Mr Hsg and he picked me up from Moor Street Station.

Phew, anxiety breakdown averted.  I feel so good that I did it.

I used to be able to go anywhere without much trouble, if there were challenges to work out the route – no problem.  Just find the destination and work it out.  These days I plan, I write out the plan, I get anxious that the plan is not working.  But, right now I can make it.

When you think of someone making a simple journey difficult, think hard.

A simple bus journey that you and they have always done, suddenly becomes the most complicated journey ever.  Don’t expect a person with Dementia to be able to negotiate a simple journey like they used to.  Written instructions may have no meaning, memories of the journey may be lost.  Do not assume that because they did the journey before, they can do it again.

Fortunately, I am still at a stage where I can phone people who I know can help me when I get confused.  But the time will come when I am no longer able to make that simple train journey on my own,

Before you assume your loved one can travel the same as they have always travelled, ask them if they still feel able to do so in the same way.  Do they feel confident? Has anyone written out their route for them?   Is there anyone who can meet them?

When I can no longer travel alone, who will be willing to accompany me to where I want to go?

These are the things that need to be thought of in Early Onset Alzheimer’s Disease.

Just thinking……………………..

 

 

 

My Dementia Dreaming

Adventures with friends!

My dreams are becoming more complex.  They are not scary, but they are so involved it is like watching a film.  It is not like seeing snatches of scenes but whole segments of an ongoing story.  It appears that I am weaving people, bits of television programs, reality and events into fantasy all involving myself into a nighttime world that I step into.  I have caught trains, been in airport terminals, I have been pregnant, built houses, had adventures, travelled with friends and companions I have never known before, with my friends who bear no resemblance to their real selves, and all in 3D and colour!

The dreams are relentless each night, and sometimes leaves me mentally exhausted in the morning, without the ability to retain the memory of the details of them.   I simply wake with my daily head pain, my brain stuffed full of mental activity, which by the time I have made a drink and takeDreams or realityn my tablets and ease into the day, dissipates.  But I know one day they won’t.

There is no real point in trying to work them out because they are garbled meanderings that have no meaning.

from_machination_of_dementia_series_by_lukaszwodynski-d5lssdw.jpg-142250I know that they may get worse, and hope that they do not develop into nightmares, common with some types of Dementia.

 

The problem with dreams is that as the disease progresses they become mixed up with reality.  I have had odd flashes of thinking of something and wondering whether it was real or did I dream it?  Did I talk about that to someone?  Did they tell me?    I don’t want the day to come when I am awake and the dreams are still real.   I mean that the people in my dreams are there in my waking, or the events in my dreams are part of the reality during the day.   When the day comes when someone starts arguing with me that what I have just told them is not real it will be sad.

Reality of Alzheimer's

So just don’t argue with me, I want to say now, my reality is not the same as yours okay!