Dementia Action Week – taking part day 1

It is a busy and exciting week, this week.   Dementia Action is all about getting communities to pledge some action towards helping people living with dementia to be inclusive in the community.

Today Monday 21st May 2018, our first day locall; Cineworld in Dalton Park, County Durham had a dementia friendly showing of The Greatest Showman.   Which was a brilliant film I might add; the music was wonderful, and all the people I asked as they were leaving enjoyed it immensely.   The music was memorable and definitely worth being played in any care home for their residence to enjoy!

So what changes did they have to make for a dementia friendly film showing?  

Lighting:  Well, they left a minimal amount of lighting on during the film.  This didn’t make any difference to the quality of watching the film, in fact I didn’t really notice it, but it was comfortable if you needed to visit the toilet during the film.  Also for people with dementia it meant that there was not a scary blackness around you.

Sound:  The sound was lowered to an acceptable level.  All too frequent the sound in a cinema can be so loud that it is quite traumatic for people with dementia, and also for people with any autistic spectrum.   It was not so low you couldn’t hear what was being said, but was comfortable and loud enough for the singing to wonderfully uplifting.  Music is so important to people living with dementia, they may not speak, or appear to respond but give us wonderful musical and you can reach parts that you never knew were still excited by such sounds.

Time:  the film did not start until everybody was ready, seated comfortably and happy for it to start.  No, this did not really take long at all, and we all waved to the guy in the box at the back running the film:  and he gave his thumbs up – what a perfectly British acknowledgement that there is someone working in the back!

Being Comfortable:  Being a dementia friendly showing, it was fine if anyone wanted to  talk during the film,  Maybe they were remembering a time when they sang or danced and wanted to talk about it to whomever they were with.  It was fine for them to do so.

In the foyer some of the ladies asked for tea, not fizzy and popcorn but a nice cup of tea!

At present the floor in the foyer is a very shiny sparkly black polished granite type of flooring and there are several red florescent strip lighting overhead, which is supposed to reflect on the black…. heck I felt I was on a rolling boat as the red reflections appear to roll along as you walk.  Very show biz!! but not very dementia friendly.  However, they will be rolling out a red carpet along the floor, I presume for days when they are showing dementia friendly films.  Who on earth are these architects with their heads in the clouds or worse…

Cineworld at Dalton Park has really tried hard to accommodate all the people living with dementia and the manager must be commended for being so accommodating.  Hopefully this can be a once a month event for all people with disabilities and dementia.

I got to say a few words and was so pleased to see so many people with dementia enjoying this wonderful film.

So, this was my first day in supporting dementia friendly events in my new local community, and one which is one that is becoming more dementia friendly.

Tomorrow is another event….

Gill x

 

 

Is dementia fascinating in its development? Maybe.

Bizarrely I have developed an obsession with counting fingers and toes.  I know a bit weird eh!   It’s just that when I see a picture of people or animals hand or feet, they look like they have far too many digits on them!   This is only when I see pictures mind you, not real hands or feet, or I don’t think so…no, I don’t usually focus on peoples hands..but I do focus on cats paws now I come to think it!

What is this about eh?  I can’t just think ‘that’s a nice ordinary looking pair of feet’ , I actually have to count the toes, or fingers.

Far too many digits here!

Some might say, what a load of rubbish, what has this got to do with Dementia.  Answer, probably nothing, I have no idea.  I do know that I have not spent my life counting fingers and toes and this is new to me, this compulsion.   Why I thought to write about it was because it made me think of fiddle blankets.

It makes me wonder whether the change in the brain that makes some people with dementia more comfortable with keeping their hands busy with buttons and ribbons and the such like has any link to me needing to confirm that what I am seeing (fingers and toes) is just fooling me into thinking there are more.   Okay I understand that it could be more to do with anxiety but that’s not how it feels to me.  I don’t feel anxious about it, just curious about the illusion that I am seeing more than what is real.

So, I still have no idea why this has become something of a ‘thing’ for me right now but I think I might make myself a fiddle blanket for my future and maybe put some fingers and toes on it to count!!

Dementia is more complex than most people realise.

🙂

 

 

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….

staying-positive-fiOc

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.

il_340x270.1134402131_mxds

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.

 

 

Living with Dementia alone..support as well as education

I reached out to my online friends who live with dementia to ask about their thoughts, on being alone with dementia and caring for a family member with disabilities or mental health difficulties and the problems of finding physical/emotional support.  I found others in a similar position to me so I am going to have a bit of a rant if I may.

Here’s the thing, the pictures I see in charity leaflets, papers, online, TV etc., of someone with dementia generally do not give the appearance of PWD living alone without support.  Living with dementia can be equally as fulfilling as without it.  We have the capacity to make the most of our lives.   With support we can live a normal life.

With support……..bear with me here

Living alone doesn’t always mean ‘with family nearby‘ to support you.  What if, you have a child, an adult child, who has disabilities of some kind?   Autism, a physical disability, mental health difficulties that YOU support?   There can be love there in abundance.  The warmth and friendship of a parent and child that has grown over the years; what if they do not have the capacity to support you, but still needs you as their mother/father to make things okay for them?   I don’t know any parent who would not want to be there to support them whatever age if their child needs them.   The dilemma for me is that my child feels that they cannot burden me with their mental health problems.  That is like a needle piercing my heart to hear that, knowing that they feel that my dementia stops me being a parent.  With my own support, I could go to the moon and back for my child.  I could be that support, because I would not be alone in doing so.

I believe some charities were originally set up to offer support, correct me if I am wrong.  Choose any charity – they offered support by reaching out to the people who needed them.  Listened to people face to face, and showing people they were not alone and they mattered.  Supported physically, by chatting, having a cup of tea together and made them feel that they could do things.

Education is the key word these days so that most of the charities that work for Dementia is about awareness now.  They have ploughed their funding into focussing on education.  There is a great element that works to help communities to be dementia friendly but there is a massive hole now in befriending help.  Finding a scheme that can offer a befriender/support to sit and chat to is impossible.

Where do they think we all go to get support when life is tough, when we are struggling really hard to cope with our own dementia and support our family at the same time?  Who do they think we talk to, to get support with it?  Giving out phone numbers for this agency or that agency, who only tell you that ‘it is not what they do‘ just sucks!  Or suggesting that if you live on your own get to know your neighbours to fill that role.   I am not sure that is so easy these days, especially when you have moved to a new area.  Do you want your neighbours to know ALL of your family problems?   If they are personal friends of yours they probably will anyway, but I am not sure if the suggestion means you should use them as support that way.

There are many people living with dementia, who live alone, without any family nearby, who are the main support for children (or other family members) with severe problems.

Whilst I am on support, I still have no bathroom- thats nearly 5 months now.  Social services stood in my near empty bathroom a couple of weeks ago and said..

“We usually come and look to see how we can make adjustments for you, but you have no bathroom so there is nothing we can do”

They gave me a leaflet to apply for a grant that may be given toward getting one.   I have phoned three people to get a quote….and not one has given me one.  Why?   Oh it would be so so good to be able to have some support to ask me ‘how’s it going?’  Spur me on to get another quote, or another and chase them up.  In the meantime my child is having a mental breakdown, I do what I can, we speak every day, I try and help sort out finances – yes me! who struggles with her own stuff.  (Funny how it is always easier to sort out someone else’s than your own).  I relish doing this for them, I love them dearly and would go to the ends of the earth for them..I just need some support.  Someone to talk to face to face.

All you charities out there supporting people with Dementia I say to you – Please please keep offering befriending services, not just education.

Thank you all, rant over.

 

 

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

 

When the S**t hits the fan…

..Turn the fan off..and…what next?

Okay, I have been hiding a bit of a trauma from you all.  I moved, you know that.  I have a lovely little bungalow that needs updating.  Late November I got a quote from a builder to replace my back boiler from the fireplace with a new combi boiler siting it in the attic space.   Rip out my bathroom and replace it with a shower and a vanity unit across the end wall.  Along with some other things to do with the radiators, flooring, skirting boards etc..  Boiler replaced.    Bathroom ripped out………………………………………………………….

They start 3rd December and I returned home on the 27th to find the brick sized tiles I requested for the shower now – 6″ x 8″.  The shower tray the height of 19″, no problem because they will build a step up to it.

The end wall vanity unit now – a cloak room sized sink with a small cupboard underneath and a small toilet suitable for a cloakroom.

Then:   No work, nothing.   I have been conned.  I am left with no money and no bathroom.   Before you ask, of course I knew what I should and shouldn’t have done, but I have dementia, I live on my own and still make stupid and bad judgements.    The builder tells me he is going into liquidation (with my money).

I cried for a whole day and night, then stopped because it doesn’t help me solve it.  I feel so alone in trying to sort this out right now but I am not downhearted because it is not the end of the world really is it?     The provision for support for people with dementia here in the North East of England is quite frankly non-existant, so there is no one for me to phone and say I just need some support through this.

So, I phoned the Citizens Advise Bureau Consumer Dept and they gave me advice in what to do next.  I have sent a legal letter giving them 7 working days to complete my building works (I think that this is enough in the circumstances) which they have received.  Next Wednesday I have to get some money together and start the process of taking them to Small Claims Court to get my money back or try to at least.

I have just had a quote to complete the shower so that I can wash properly which is reasonable at around £500 to include parts and labour.  At the moment I haven’t quite got that so will be saving in the next month or so to get it done.   The rest of the bathroom work will have to wait.

Dementia:  When my Doctors tell me that it doesn’t really affect me much yet I will beg to differ.  I believe that my judgement is very poor now.  I have been thinking about this and wonder if it is to do with being unable to read peoples faces and voices, or negotiate in my mind whether the words people say to me add up or not.  How do people make a judgement on whether to trust something or someone?  I guess it can be a combination of things, including experience, how they look, or sound, that is greatly diminished for me these days.  But, that doesn’t mean I will make the same mistake twice!!

For now, I have turned the fan off.  I will deal with it day by day without worrying too much because right now there is absolutely nothing I can do to change it.

 

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!!