Cat cuddling…

I am in great need of cat cuddling this morning because I am falling into a black pit of  despair.   I cannot stop the tears leaking from my eyes so am smiling.  Did you know smiling increases the ability to lift your spirits through….lets just say the effect of smiling has in the brain lifts moods.   Is it working?  Not really although I realise I look somewhat mad smiling through tears hold tight to my cat, who is loving it.  She loves a good cuddle and her ‘motor’ is running on full right now – yes even whilst I am typing this, tucked under my arm her paws on my laptop.

This morning I am realising the enormity of my situation.  No bathroom and I can’t find any practical help.   The well meaning questions of have you contacted…such and such is not really helping.   15 years ago I wouldn’t be in this position, I would never have given my money over to a builder before they had at least done a good deal of work.   But, having dementia means that your brain is seriously compromised.  Just because I look and sound fine, well more than fine really, the hidden part of what dementia does to you is missed.   Like how can you tell if someone is telling you the truth or not?  How can you tell if what someone is saying is ‘joke’ and not meant to be taken seriously, how can you tell if someone is conning you or not?    I can’t and it quite frankly terrifies the pants off me because you need these skills to make every day decisions.

So what I want is practical help.  Someone who can do some hand-holding through what I need to do next.  Someone who knows what to do and why it needs doing.     People keep saying about how this organisation or that have given them practical help so I want to know ‘how did you get that help’?    Here I am, no money, no bathroom and I cannot find anyone who does anything other than say you need to do this or phone this agency.  Age UK don’t offer help apparently so they tell me, Citizens Advice Bureau offer advice, Alzheimer’s Society…don’t get me started on that one.   So, what I need to know is WHO can give me some practical help of what to do?

Most of these charities, have now stopped giving practical help and have chosen to focus on advice.  Well, advice to a single person who is trying to sort something out alone is  absolutely worthless when they have dementia.  What we need is someone to sit with us and ‘walk’ us through what to do, perhaps give some help on that, stage by stage.  Give support, practical support.  Someone to tell you “it’s okay we will sort it out”.    

I hate dementia.

Going back to cuddling the cat.

Rant over.

Simons Cat does it best….simons-cat-channel-frederator-network

 

Food, dementia and me

Whilst my brain seems to be remarkably good still, other things about my dementia continues to ‘trouble me’.  When I say trouble me, I don’t actually mean they trouble me, I mean they are not quite normal for people in general.

I think food and eating with dementia is a very complex thing, much more so than people realise, especially when you live alone.  The usual questions at the GP or Memory Clinic appointments are:

Q.  Do you cook for yourself okay?      A. yes

Whether or not I finish eating it or not is another matter, or indeed whether I can save some of the excess to keep for another day.

I still don’t get hungry and have to look at the time to see whether I should eat or not.  I could quite happily go all day without food.  On average I would say that half the time I have one cooked meal a day and nothing else, the other half I manage to get a Gluten Free sandwich or snack at lunchtime.  There lies another problem being Gluten Free I don’t always have any bread and everything else is a poor quick snack substitute so I don’t bother. Regulating how much I eat can be tricky sometimes, especially if there is something I really like the taste of because I just want to experience that taste till whatever it is has all been consumed.   For instance I cooked a ham joint and wanted to finish the whole thing because I like the taste, I did manage not to though !    A lot of food has lost its taste for me and things I used to enjoy seem..tasteless and I can’t really be bothered to finish eating something that doesn’t have that – taste appeal.

Drinking enough fluid can be a problem although I try my hardest to drink a fair amount of water and other drinks, weak coffee or fruit teas, throughout the day.    It is, for me, something that it a conscious effort I have to make.

So when you ask a person in the very early stages of dementia if they have eaten, or are they okay with cooking for themselves fine, understand that the answers are far more complex than the question.

Note:  I am not managing to lose any weight so I am definitely not starving myself!!

 

 

 

 

I feel angry…

Why oh why are there so many articles about how to prevent dementia by changing your lifestyle?  This Guardian article makes me go……. Grrrrrrrrrr!

Lifestyle changes could prevent a third of dementia cases, report suggests

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Before commenting, read the article please.

What I would like to say is that change your lifestyle to drink less, stop smoking, be more active, keep your brain active and it will make you feel better, make your health better but it WILL NOT STOP YOU GETTING DEMENTIA.

The research/study they must be using to suggest lifestyle can prevent dementia can be applied to any of the following:

Heart disease, Lung disease, obesity, high blood pressure, Diabetes, help with arthritis..and any other condition that being active can help with.

Articles like this make me so angry.  Why?  Because it gives false hope and mis-information.   At present there is no cure for Dementia.  Research has yet to find out what causes dementia, they are beginning to understand what is going on a bit better, but not why this happens.  If they did all of us living with dementia would be on some sort of medication to reverse it, or totally halt it, and we are not.

These articles are really about unhealthy lifestyles and what can happen in the long term.  So why not write that?   Some dementias can be directly through lifestyle such as Korsakoff Syndrome caused by alcohol misuse or nutrient deficiency.   Some dementias can develop through the result of traumatic brain injury.

Here are some REAL sites to find information about dementia from professional bodies and people leading the support, help and information sharing for dementia.

So, I wish these newspapers stopped writing this rubbish just to fill space because it is not helping.

Rant over……..

 

 

 

Proud to present…..

This is my story in my own words with the help of journalist Penny Bell who is creating a series about dementia, you can follow her on Twitter here.  Or view Linkedln profile  here.

Discovering Dementia, Season 1, episode 3 Gill’s Story

I recommend you also listen to the first two episodes:

The first episode is with her Mum who was diagnosed with dementia.  This is lovely to listen to.

The second episode is recorded at the Alzheimer’s show held in London.   This will give you an idea of the shows that are worth a visit to learn everything about dementia, for people with dementia, family and carers.

I know Penny has more to come.   It was fun working together with her during the recording, especially as she came along with me to the YPWD (Young People with Dementia) gardening group which I love.

Groups for younger people with dementia are very important because it stops isolation if you live alone, enables fun activities which are age appropriate.  Younger people with dementia have different needs to elderly people.  We come from a different era, singing groups will focus on 60’s and 70’s music, nothing like having a good old sing song to ABBA and the like!   Not that I sing, in fact I have no singing voice at all, when I try to sing a weird soundless screech emerges that is not very pleasant.  If I am ever required to sing my miming abilities knows no bounds.

Sadly there are not enough groups that support younger people living with dementia throughout the county.  Especially groups that provide a wide range of activities such as walking groups, Kayaking, Art workshops, Poetry groups, gardening groups, furniture recycling… the YPWD offers all of these and more in the West Berkshire area.

 

 

 

 

Reading Buses and Dementia friendly signs and instructions

where to catch image WEB

This is a picture from the internet of Reading (in Berkshire) bus ‘terminal’ stops.Spot the No 1 to Newbury stop….don’t see it?  nor did I when I was there yesterday.

Firstly I must say that Reading is upgrading its service into colour coded bus lines.  Each colour has a different area.  Newbury bus line is Jetblack where the buses are grey and black, some of the newer buses being grey, but no problem.

So I had a trip to the Royal Berkshire Hospital, and travelled into Reading by bus.  Because it was before 9 am I had to pay £5 single because my disabled bus pass card does not start till after 9.30am, something Newbury Council has changed to save money.    It takes a full hour on the bus so I guess that is not a bad price.   When I get to Reading I get off and then have to look for another bus to take me to the hospital.  I had done some research and thought a number 19b would be suitable……but none of the bus stops have any signs telling you what buses stop there!   As you can see on the map Station Road has about six bus stops/shelters but all without any signs.   All the time there is a steady flow of different coloured buses passing, stopping, then carrying on.   As to where they are going that  remains a total mystery to any visiting stranger to the town.

I am pain because of my fibromyalgia and I was feeling quite stressed out by now because I don’t know Reading at all having only visited the town twice before, so I walked up and down looking for signs to tell me where the hell all these buses were heading to.  Nope, nothing.

Fortunately there were some drivers standing around chatting and I asked them what to do and they pointed me to a bus which would take me where I was going.    I got on a bus, got off and then proceeded to navigate the hospital.  No it wasn’t a 19b but it was going where I wanted it to!

So I tweeted to Reading buses:

The hospital

The letter says:  Main x-ray department…..  so I follow signs up to the second floor (this is a weirdly set out hospital believe me) only to realise that it isn’t the right place.  So I look at the letter again and further down it reads ‘the Mammography department is on the the first floor’  So it is the Main X-ray department in the Radiography department!!!!      How many MAIN X-RAY DEPARTMENTS have they got for goodness sake!

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What I want is a bullet pointed ‘letter’ that has roughly these bits of information on:

A Heading With Appointment DATE and TIME

  • Department name  e.g.  Radiography – Mammography,
    • Main X-ray of Radiography department
  • Detail of how to contact the department if need to cancel or change appointment – with Telephone number etc.
  • Instructions:  Arrive 15 mins early for whatever reason
  • Do I need to bring anything with me?  No
  • What to wear:   You will need to remove your top.
  • How long will this take:   15 mins
  • When will I get the results:   Result will be sent to your GP/consultant may be able to talk to you at the time of the appointment.
  • And whatever else is necessary for the appointment……

How to get to the hospital:   A separate piece of paper showing:

  1. bus services
  2. small immediate road map
  3. parking
  4. Bus service numbers and stops outside of hospital
  5. Map of Hospital Departments

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I find it hard to wade through all the words of a letter these days.  I am only really interested in the information that I need.  I do believe that this is not just about dementia because there must be other people who struggle to read standard letters that have too many superfluous words on.   This is something I will take to my DEEP – Empowerment Group I think.

By the way, the staff in the hospital and are lovely even though every one of them had absolutely freezing cold hands!   They could do with a small hand warmer in every room.

Living in Pain and not remembering why

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Living with dementia can be strange because you don’t always feel like there is anything wrong with you.  In the early days, you know that there is something ‘not quite right’ with you but you can’t always put your finger on it.

I don’t feel like I am any different to any person over 60 whose behaviour and memory is starting to get a little wonky, but in reality, there are things that are creeping up  that I am not comfortable with about what is happening to me.

I keep forgetting what it means to live with Fibromyalgia.   I live with pain 24 hours a day, 365 days a year, in my feet, wrists, hands, knees, back – hell everywhere really.   So when my fibromyalgia is flaring up and I am so debilitated by the pain and fatigue, I should not wonder what on earth is wrong with me.    I toddle off the the Doctor’s to find out why my finger is so swollen stiff and excruciatingly painful with a lump on the joint (which later disappeared).  At the same time I tell him my glands hurt, my eyes are sore, it is uncomfortable to breathe and I am in so much pain I can’t get out of the chair.  I sleep for hours because I feel so ill, but I can’t sleep at night because the pain is so bad.

I have some blood tests done, even though he says he thinks it is just my fibromyalgia……..I go home and feel a fool.  How did I not remember how ill my Fibro flare ups make me.  Now I feel so guilty that I am beginning to recognising that this is happening every time it is at its worst.   I simply forget how ill it makes me.

I think this is to do with my dementia.  Yes, I function fabulously day to day, but living on my own has its drawbacks.    This is one of them, having no-one to suggest to you that this is simply a Fibro flare up, and can I remember how it was having the last one?   How bad it got, how ill I was.   No cooking, cleaning, in fact daily living just stopped because I was not able to do anything.  ‘Fibro Fog’ meant I felt more confused and forgetful than usual.

When these times arise and I am sitting amongst the mess of my home, living off quick snack type foods, too exhausted to wash, I look at whether my dementia has worsened.  I think I am less able to be spontaneous than I have always been.  I find it harder to ‘sort’ things out and it takes me more time than it should.   There are times when I think ‘why didn’t I think of that?’ when something obvious has been pointed out.   I feel like I am forgetting a lot of things that I have learnt.  Recipes I have cooked forever, people’s names, places, things in my past.  However, having dementia means I always adapt and not worry – try not to sweat the small stuff.

So, right now I am in so much pain without any painkillers that will touch it, waiting for it to dissipate enough to function normally again and somehow I need to make myself a reminder to understand the next time this happens that the possibility that it is my Fibromyalgia and to wait but what happens when I can no longer understand what is happening?