HELLO from Me 

Not sure what day my retention of facts are very poor now which is making blogging difficult 


this is Donna With her Dad  looking after us takes time Donna has been all things to us 

Attending to our forgetting how to use smart phones to keeping us cheerfully engaged in life 
So her Dad and I was so pleased for my daughter Donna she was in Glasgow getting peer support 

From carers like herself not older carers but ones still of working age this was  thanks to Life Changes Trust funding she was at a conference in Glasgow RUN by CARERS FOR CARERS 
They say it’s never too late I hope not as both Alan And I are wanting to get our Daughter back and leave assisting us to paid professionals ( we never know our relationship was changing or how much Donna Was supporting us ) we had no insight 


Thank you Donna for Assisting the Scottish Dementia Alumni for 2 years while we found rooms for taking notes making phone calls you went above and beyond for us because you believed in getting our voices heard our needs met when no one else was listening 
You helped me to remain campaigning on Sensory Challenges when I was not being supported you helped us to travel by coming with us 


to maintain our gym our community life to do this I am trying to access Self Directed Support A thankless process as I have been told my case will be highly unlikely to get Self Directed Support in North Lanarkshire 

But Alan and I are adamant that no more years of Donna’s life has to be given to supporting us She needs to get released to a normal life to be a daughter do the fun things reflect and see what direction her life her career should go 
That’s why I support the Carers Conference cause At last some identification some validation for the 11years she has supported us she has on her own filled in forms took us to appointments and this year carried us both through the dreaded PIP forms 

Yes this has taken a toll on her it’s too much to ask of any family but Donna is an only child so had to shoulder it alone 

No body to share her load 

Below is a photo of other carers who in the past have done what Donna has done but now their loved ones are in nursing homes or have passed away 

Our Carers need help support don’t  just pat them on the back and say they are doing a grand job 

Or criticise their decision or say look after yourself when that means neglecting our care while they look after themselves as their are no systems in place to support Alan and I 

Both my husband and I are sad that she had to give up her nursing carer to keep her parents functioning and in the community 

No services were personal to our needs as young people with Dementia 
If only we could have obtained Self Directed Support at the beginning and had the know how to purchased the help we needed then she might still have her nursing carer 
Lots to learn lots to be fixed in Scotland for our Carers but this conference is a first step in the road to seeing the whole journey THE BEGINNING THE MIDDLE AND THE END 
THANK YOU ALL CARER BOTH PAST AND PRESENT 

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MY TIME IN Luxembourg September 3rd till 5 th 

I was invited by the European working Group to be part of a research advisory consultationwith ROAD MAP 

It was a busy  Agenda scheduled over two days 

There are no direct flights from Glasgow to Luxembourg so two flights and with the waiting times it’s long and tiring especially the way back after such a busy schedule 

Donna had to keep me right as my fatigue was causing my Dementia symptoms to be more marked my way finding and concentration was very poor 

It was so nice Helga from Germany was in reception to meet us as you can see from Photos the Sensory Booklet was on hand 

It was great to see Carmel and Helen from Ireland they sponsored me for part of my Churchill Fellow now we go in for our evening meal and meet old friends and opportunities to make new friends 

I Meet Mia for the first time although we both are part of Edinburgh University faculty 
The hotel bedroom is really challenging my Sensory issues white shiny furniture and a full size mirror in the bathroom I suppose it’s acetically pleasing for some but a Dementia and Sensory nightmare I am covered in bruises and spent ages looking for stuff 


Jean George the CEO of Alzheimer’s Europe came in to the Discussion about the Lancet Article 

This is a picture of the European Working Group with Hillary and myself as invited guests 
Below is some photos of our session listening to Chris , Mia , Amanda presentation and then we get heads down to work 

We split into a carers group and a people with Dementia group for the next sessions these are some photos of our coming together. Give feedback and summing up 

All in all a great time I learned more about myself and recieved lots of help from people with Dementia on How to cope with my challenges 

We’ve finished morning session on last day had lunch now we are hanging around waiting for transport to airport Chris makes himself useful it’s always sad to say farewell after getting to know each other and bonding as a group 

At at the airport we meet up with Lars and his wife they’re anxious on flight times and boarding gates me I got confused and thought we were flying to Amsterdam it’s London City Mum  Donna keeps me on track 
We won’t be home till 11 PM a long day

I will need rest and recuperation for days after this but it’s been worth it it’s medicine for my soul and keeps me going with my Dementia 

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1st September 2017 

So excited to be having coffee at our favourite place in Glasgow where Dr Julie Christie from Hammond and I  have our tea scone and catch up 

To day we will look at The Design School Event for people with Dementia also Event in Birmingham gosh it’s in 2weeks  time how time flies 

My trip from my local train station Blairhill to Glasgow became challenging the steps to get into the  Station was closed I watched my train leave will I still tried to nogotiate my entry 

later in the day I found this article in the local advertiser  


Now I know to add 10 mins to negotiate these new changes for travel into Station the barriers etc cause confusion and wayfinding is difficult 

I catch the next train I am still on time as I always factor in mishaps I arrive in Glasgow Queen Street more barriers more changes  How to get out they have moved the ticket office nothing looks familiar they’ve even changes the seating arrangements 

I think these improvements ( I hope they’ve consulted with People with disabilities especially invisible disabilities like Dementia ) ill eventually be to everyones benefit but for the now and for me To stay mobile and able to travel I will need to relearn 

How will I do this it will mean taking  time to practice these new challenges these new barriers how to overcome them 

I will take someone with me to help guide me until I feel safe I believe the new buzzword for this is resilience you get knocked down but bounce back ( I dislike this word ) as it glides off professionals tongues but please believe me it’s not as easy as it sounds it takes time it’s tiring it’s tough 

I finally arrive I so need my cuppa and guess what 


It’s closed no notice 
My thinking begins is this the right place maybe I have it all wrong my confusion doubts desend But no I see Julie all is well again I can relax she smiles let’s find another place for cupp


All is well again I am safe I get my bearings my cuppa and we begin to catch up then work begins we put out heads together 


On reflection I am blessed because I learned from other people with Dementia not to panic when these incidents happen to take a deep breath and calmly ask for help people are kind

On the way home I still had difficulties I got disorientated with the barriers the busy signage Sensory overload 

change is not easy but it’s more challenging when you add Dementia and Sensory Challenges to the mix 

The outcomes the laughter from my catch up with Julie was worth it all thank you Julie 

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Last day of August 

To day I was asked to cut the ribbon 

for my local park to recieve from Paths for all their Dementia Friendly walk accreditation 

This has took a lot of hard work training of Walk leaders to be Dementia inclusive also a lot of thanks goes to Live Changes Trust who has funded these projects which brings not only wellness but lots of joy to participants 


Now the walk begins it’s a mile walk round what is locally know as the locks a beautiful place with swans boats lots of benches to sit on and when you finish you have a cafe with nice things to eat and in the winter nice lentil soup 

You also have seats outside to just view the lock and what is happening 


I enjoyed the walk the sun was out lots of people around you could smell autumn was coming lots of chatter smiles 

Then the walk was finished we went for tea and cake to celebrate we chatted we planned I was so busy enjoying myself I forgot to take pictures 

Typical of our weather it started to rain a downpour but being Scottish and used to it we all had waterproofs in our rucksack 

If you are near us or have free time on a Tuesday come along and join us 

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GLASGOW FILM THEATRE VISIT 

 morning I travelled by train to visit the Glasgow Film Theatre I have been invited to walk round using my experiences of Dementia to say how the venue feels well I was pleased as I had in my bag the new DEEP checklist on this so fingers crossed all goes well 

 

All went well I met Jodie as arranged and we walked to the film theatre now the work starts 

The manager of front of house joins us I was impressed as the staff are listening and looking to make changes some of the things I point out the staff were aware of them them we looked for solutions 

The biggest problem for me was the carpet and the slop going into a Theatre 1 at first it looked like stairs then up close it looked like a moving walkways we did come up with some possible solutions other than replacing the carpet 

The lift had a door that opened towards you this was not good and I felt the signage needed to make the user more aware of this 


The GFT as it’s known has Dementia aware staff the venue is being tweeted to be more Dementia Inclusive it gas great films showing as well as special showings for people with Dementia and their care partners 

This will be fabulous for days out so we now need to get carers care providers etc to be aware of this wonderful resource 
 Below is a picture of the DEEP checklist I found this an amazing useful tool I gave walked round many venues but this checklist was a great aid for me 

This checklist is Hot if the press and was only published in April this year 

This is me trying out the seats for comfort 

These are  the girls I spoke with to day 
I would highly recommend you to check out the Glasgow Film Theatre website or just call in 

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It’s Saturday 

How time flies its Saturday and time for me to leave Ann’s cottage and journey with Sarah to Inverness

Sarah is making to day a fun day taking  time to stop and enjoy the scenery it was wonderful We had lunch in a nice cafe and just meandered along even finding time for a walk on the beech 
Sarah has kindly offered to put me up tonight at her home before I catch a train on Sunday for Glasgow 

Sarah is making it a day to stop and enjoy the scenery it was wonderful 
After Diner in Inverness we had a walk along River Ness what a great day x  home time for bed 

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Friday in Helmsdale 

Friday morning weather is still dry this is me leaving Ann and Andrews cottage 


we have the Dementia Friendly Community Rural Board meeting Sarah Muir from Popoy Scotland and myself arrive early decide to go for a walk before meeting starts here are some photos 


This is the van from the creative communities we walk down to the water I love the vibrant flowers the smells of the water and the countryside

I sit to reflect and enjoy the ambience now it’s back to reality and the  board meeting 

I loved the new office space bright with the posters of the various project happening in Helmsdale and sorounding ares 

This is us getting down to work meeting is finished now it’s lunch at a local cafe then off to see Helmsdale Men’s shed one of the recent projects I love working with wood so Andrew sees this and I do a little hands on woodwork 


It’s now wet wet wet and we go for a coffee and low and behold I bump into a fellow veteran we had a good chin wag and he gave permission for me to use the picture on my blog 
he talked of how much he really appreciated Veterans first point reaching him as far away as Helmsdale 

I believe more work needs to be done with Neurological issues and quality of life for Veterans is maintained I would like reminisce workshops for veterans with Dementia like my Husband Alan ex Navy who has Double Dementia Vascular and Alzheimer’s and myself ex Q.A.R.A.N.C. 

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THURSDAY afternoon in Helmsdale 

After lunch by the river I walked back to the Hotel collected my case and as I was crossing the bridge I heard familiar voice saying ” is that You Agnes ” I’ve been following your tweets but didn’t imagine we would bump into each other it was Richard Baker from Age Scotland wonderful we walked to Poppy Scotland I left my case and Richard treated me to a scone a cuppa and a blether 

We said au revoir then I went into Poppy Scotland to meet Sarah and the team another great exchange of ideas and it was great to meet fellow veterans 

Then we travelled to Helmsdale for out Dementia Friendly community work Ann had cooked Lobster just caught fresh yesterday 

 and a lovely home made strawberry cheese cake scrumptious 

at 7 pm we all retired to bed as it’s been a busy day 

Internet very poor fingers crossed I can send this 

 

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Thursday Inverness Aug 2017 

Well woke up and having issues with time yes my friends Dementia time kicked in the staff at riverside Premier inn so understanding I had my breakfast no hazzle  stress free then managed with assistance to book out the whole process was done with a smoothness and they made me feel good 
I said I had time till after lunch so The took care of my case and showed me the ness Riverside walk 

This was so pleasant the Sun is shining the sounds of nature men were fishing people walking glorious I was looking for place for mindfulness 
The cathedral was fabulous but I decided I wanted to be outside in nature so here I am justfinishedmy mindfulness session by the river with the sound of the water and the sun on my face so blessed 

Thank you Wendy and George who have helped me with doing these blogs 

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WEDNESDAY Inverness 

Anne Milne went back to Edinburgh last night so I have a free day to day 

After breakfast this terrible fatigue came over me I had to go back up to my hotel room and rest 


Then I went to 10 am service in St Mary’s Church thankfully it’s only 3 doors down from my hotel the Premier Inn because fatigue has overwhelmed me so it’s back to bed till 1:30 pm 

Then I forced myself to go to the Inverness Museum this was interesting but I was aware of being very tired I could not read or take in what I was seeing 

So I headed back to the hotel but couldn’t resist taking a photo of this Piper 


Great signage in the hotel staff are so helpful pity that they play music in the ladies toilet also in the restaurant areas 

I have no booklets left or I would have given them one I wonder who I could contact to give feedback and maybe tell them about Sensory overload just. Thought 

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