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.

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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.

 

 

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.

 

Having a voice…

I was invited by the Alzheimer’s Society to go to the Service Users Review Panel Conference in Manchester here in  England and obviously said yes please.  There were lots of groups represented in the room with both group facilitators and a few people with dementia – PWD.  For those of you who don’t know what these groups are about I shall tell you what they are and about my day.

I belong to the West Berkshire Empowerment Group.  This is a group that meet once a month to discuss and review…just about anything.  Any issues that have any sort of impact on someone living with dementia.  As part of the DEEP – Dementia Engagement Empowerment Project there are around 38 groups in England, Wales and Northern Ireland, and more in Scotland.   The groups are made up of people with dementia and a facilitator and is designed for people living with dementia to have a voice in just about anything locally, hopefully to also have an impact nationally.

First of all, I shall admit I was invited to this day – to go to a conference in Manchester and actually I had no idea what it was about or why I was invited.  I get so confused as to each of the Societies, Services, Groups, and Organisations are and whether they are affiliated to each other.    The trouble is one organisation is an umbrella for one topic, which in turn is an umbrella for various groups…and I can’t keep up with it.   So there I am going to a conference that is by the Alzheimer’s Society Organisation and had no idea it was for Service Users Review Panel groups, and then….I had no idea that the West Berkshire Empowerment Group was a Service Users Review Panel.   And, where the hell does DEEP come into it all, who is that affiliated to?  I have dementia for goodness sake I am struggling to keep up with who is who these days…

Anyway, it was a great day in which highlighted lots of work that many of the groups had done and were doing.  For instance, one group has worked with Royal Doulton in producing dementia friendly china ware which is not an insubstantial impact in dementia care.

In our group the West Berkshire Empowerment Group in the past we have given our opinion to research on books/novels specifically published for PWD.  Reviewed electronic gadgets such as key finders.  The group went to the Royal Berkshire Hospital at Reading to look at the signage and our review was passed back to the hospital for improvements.  We suggested a purple wristband for PWD so that they can be easily identified, because we know that many people like myself do not show obvious signs of difficulties, but after an anesthetic we could quite badly affected with confusion.  This has now been approved and the hospital has put this practice in place.  We also look at public transport and whether that is dementia friendly.  The groups also help the local community become dementia friendly.

This conference looked at what format worked for each of the groups, for instance some of the groups were on a 12 month basis only.  Some of that is because of funding.   The group I belong to rolls on and on and on…we have no time limit.   Our facilitator Louise Keane is particular active in ensuring that we have some great issues to discuss and review, and it became apparent to me that her  attitude towards the group is brilliant and makes our group attractive for institutions such as Reading University, and other services to approach us for our opinions.  Thanks Louise!

The opinions that were talked about were being looked at those organising all of the groups and it was quite surprising for me to hear that the lack of support for facilitators was felt by some of the new groups.  But this was a topic and a great one too to be openly discussed: could it be improved and enhanced. For me it was interesting to hear some people say they didn’t feel supported in knowing how to end a group after the 12 months, or how to deal with someone whose dementia had progressed and could no longer take part in any discussion. So it was good this conference highlighted these issues, and for me as a PWD to hear that.   I am sure that training for our facilitators will improve to enable the groups to grow and give us our voices.

It was great to hear how some of the work that the groups had done had impacted not only locally but was being looked at nationally.

It just goes to show how small groups of people with dementia can have such a powerful voice if only given the opportunity to speak.   Anyone living with dementia who wants something more than just pleasurable activities, who would like a voice then I would encourage you to join your local DEEP group.  You can find your nearest group on their website.  Come along its great to be involved and obviously you get a cup of tea!tumblr_mqmztxxppp1rzwv55o1_500

Dementia: Headaches and stuff

19 August 2015
Went to the Doctors yesterday because I am so tired of headaches,     brainday in day out, the pain in my head just won’t go away.   Sounds like cluster headaches but I have no break in them, so possibly migraine the doctor reckons.  She suggested that I try some Amytriptaline at a very small dose at night. However, Boots the Chemist say their suppliers don’t do a lactose free version!  So, I have a conversation about whether they can get any from elsewhere and here is the rub: they use two suppliers who in turn have a range of manufacturers they use, and they don’t make them lactose free…. So I say “can you not find a manufacturer who makes them?” I add “ I can go on the internet and find out who manufactures some and give you the information”. But, what the guy is saying is that if their suppliers do not buy from these manufacturers then, no, they will not get them.

Thanks BOOTS, what a ridiculous situation to put me in!

Maybe I will have to go back to my Doctor and ask her to supply me with a separate prescription so that I can trawl the chemists in the towns trying to find a different one who uses alternative suppliers to BOOTS, in order to find a lactose free version whilst coping with a head that is being ‘drilled’ constantly.

I also talked to her about my mood being up-and-down at present, becoming annoyingly teary throughout the day. It seems the past 6 months has finally caught up with me. My marriage breaking down and leaving my husband, moving home to a new area not knowing anyone and my mother dying, along with the trauma my sister is constantly putting us all through with her constant bizarre and unforgivable behaviour with my Dad.

After a visit from a lovely lady (Alzheimers Support) giving me all sorts of information of what was available for Young people With Dementia, I joined a group for a ’stroll and supper’ at a nearby park. Not knowing the area at all, I planned my bus journey on the net, which stop to get off with a walk across the park to the meeting place. Yes, I felt anxious as I left and found I had forgotten my mobile phone, but ‘not sweating the small stuff’ decided it was not important enough to get it and risk missing the bus.  It was a good night and met some lovely people, but I was excruciatingly aware that I was the only single person there, and this upset me greatly. So, I am going to ask whether it is at all possible to find out if there are other people with dementia who want to meet up as a group singly.

So, all in all struggling a bit at the moment.

Dementia: Witnessing release is a comfort

blue_irises_by_naglets-d2yie11I am watching my Mum slowly succumb to her dementia daily, but it feels like I am seeing it from the inside.  I don’t know how to describe this so you can understand.  I am invisible in a room full of people, Gill has dementia so do we include her or not?  Am I the only one who is experiencing this feeling of when this is my turn, because you may not get dementia.

My Mother’s name was Iris, and like the flower she was a very complex person.

It was Sunday 14th June, our family had somehow managed not to avoid each other and all visited my mother together.  So, my Dad, my Brother and Sister-in-law, Sister and Brother-in-law, nieces and my daughter were in my Mothers room at the nursing home.  The rift in the family growing wider and wider with my sister and her family on one side fighting some bizarre war in her head with us all, and everyone else at ease with each other on the other side.  My Dad torn in two in the middle  My Mum lying between us, her breathing ragged but looking peaceful as she is in her final hours.  She does not seem aware that anyone is with her, but I believe she can hear us all and knows that for the first time in years we are all in the same room together.  We spent the day chatting about our memories, listening to some music, and talking generally amongst ourselves.  My mother may not have appeared conscious enough to join in, but it felt like it was normal family get together with people chatting and laughing and I am sure she was with us.

We had the call later that evening to say she had passed peacefully away at 10.34 pm.  I believe she had waited until we were all together.

I cherish having visited her every day the weeks at the end.  My daughter and I played her favourite hymns on her iPhone and watched her tears.  We played her favourite music and sang along (out of tune but no matter it was fun).

She was no longer able to swallow, so she had no food for weeks, and finally she could no longer have liquids.  Every day the nurse and doctor would say “it won’t be long now, she may pass tonight”, and the next day there she would be defiantly showing she was not ready to go.  Fourteen days she continued without any liquid, and everyone was amazed by her stubbornness, and strength of character to fight to stay with us.

One of the nurses sat down with me and explained how they knew she was not in any pain, at the end I don’t think she was, before I am still not sure.  Her death was natural without any pain relief so I am sure she was aware of her last day with us all.  Yes, I can now see that perhaps it is easier for us to want her to be given pain relief just in case, but then it could have changed her perception of her final hours.  So have I been wrong?    No; my view now is that a small amount of morphine ‘as and when’ may have been better when the sores were painful.  But, then at the end when she had no pain = nothing.

The carers thought she was lucky they said, most people never have visitors.

I designed and created the Order of Service on my laptop, and my brother had it printed up.    We found a poem that my mother had cut out and stuck in her book and I read that at her funeral.  We had no flowers apart from a single spray that lay across the coffin from the family; blue irises and white – roses, chrysanthemums and others.  Instead of flowers my Dad wanted donations to ALZHEIMER’S RESEARCH UK if people wished.   Thank you Dad x

She is gone

You can shed tears that she is gone
Or you can smile because she has lived
You can close your eyes and pray that she will come back
Or you can open your eyes and see all that she has left

Your heart can be empty because you can’t see her
Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone
Or you can cherish her memory and let it live on
You can cry and close your mind, be empty and turn your back
Or you can do what she would want: smile, open your eyes, love and go on.

Written: 1981 David Harkins 1959 -Silloth, Cumbria, UK

(This is also the poem that the Queen chose to be read at her mother, the Queen Mother’s funeral which is why my Mum loved it as she was a staunch royalist)

I am glad I had time to make my peace with my Mum, I am glad I had time to sit with her, talk to her and be back in my family.  I am glad I witnessed the end of her dementia, it has left me feeling comforted with my own dementia.

A new chapter with my family now begins.  I need to visit my Dad on a more frequent basis to support him, and do my part in taking care of him to stop my sister from mentally ‘abusing’ him.    This scares me because staying strong and being capable takes more effort than I think people realise.  Still, it’s what we do isn’t it?