….and breathe!

Today I am running around doing things that need doing at home as the next few days are going to be rather busy.

On Sunday I shall be heading off to NE Kent at the crack of dawn (well, before dawn actually!) to run along a windy seafront for 26.2 miles. At the moment I'm too busy with other things to worry about whether I'll manage it as there's sooooo much to do.

I realised that I needed to think 3 days ahead with my baking and food preparation so at the moment I'm having a coffee break whilst waiting for 2 loaves to finish proving before I can start preparing for our evening meals. Tomorrow is OK because Mike loves to help in the kitchen when he can and so we're having fajitas which means he can do all the chopping of vegetables whilst I'm out. I've already got a batch of spicy beans made up so that all I need to do is make some tortillas when I get home whilst his chicken is cooking. Homemade tortillas are nothing like the processed ones you can buy and take very little time to make. I'll try to remember to write a recipe for them when I get a moment.

Monday and Tuesday I shall be heading off to London each day for the launch of join dementia research which will either be extremely busy or will involve a lot of hanging around, you never can tell with these things. I'm hoping that the media will be interested as there is so much about dementia in the News at the moment - this morning the Alzheimer's Society announced that their 'dementia friends' campaign has now got 1 million volunteers which is brilliant.

The other exciting announcement was this:

'Leading the world'The government has announced that it will be spending more than £300m to tackle dementia in England over the next parliament, as part of plans which include:

• An ambition to reach three million dementia friends

• A dedicated online and telephone service to help people taking part in dementia trials 

• An international dementia institute to be set up in England within five years to make the country a "world leader" on research

• The launch of a global fund to find a drug that can slow the onset of dementia by 2025.

Mr Cameron said: "Dementia is one of the greatest challenges of our lifetime, and I am proud that we are leading the world in fighting it." 

I knew there was going to be some sort of announcement from the furtive phones calls I received late yesterday afternoon asking about my availability over the weekend! What a great start to the weekend and I shall think of this to spur me on if the going gets tough in my marathon tomorrow.

In other news I've been playing around with the curtains tie-backs I stitched. I found a nice wooden frame I'd bought a while ago and it fitted part of the tapestry in rather well. Now I've just got to mount and stretch it onto the backing then it will be going on the wall in my Craft room to remind me that Spring is on the way.

The frame had this watercolour in originally and I thought it was a print but when I took it out I found it was a greetings card.

Inside was this note:

Whoever Nancy was, this little note must have meant a lot to her, possibly when she was about to have some sort of operation or procedure, as she had it framed professionally. I felt privileged to have peeped into someone's precious memories.

On the crochet front, I'm getting on nicely with my latest project and am undecided whether to take that or my remaining sock with me on my train journeys next week.

The colours I've chosen are based loosely on the curtains/blinds in the lounge. I'm using Rowan Summer Tweed, which is now unfortunately discontinued, with a 4mm crochet hook. Thankfully I have a lot of it in my stash.

A trip into Londonium to talk about dementia

Another day, another trip into London for something concerning dementia. This time it was a workshop focusing on current challenges for dementia research and the guest list was a thing of great beauty with eminent Professors from all over the country. Some of them I'd met before, some I hadn't but one thing I did know was that even if some of the things they talked about were hard for me to understand I would still be able to offer the view of a lay person.

The weather had been vile for several days and there was a chance that the trains would be disrupted and delayed not just because of that but also because trains on our line are not stopping at London Bridge station whilst it is renovated. This meant I had to catch a train which arrived 2 hours earlier than I would have liked as the next one didn't give me any contingency.

When I left home it was pouring with rain and blowing a gale and there was flooding everywhere. I half expected to have to turn back in the valley as the river often floods that road but it was OK and my journey to the station was uneventful thankfully. I tried to take a photo of the station in the rain but my camera decided to misbehave and make everything blurry.

Mike liked this photo as he said it was very Impressionist so I've included it. It makes my eyes go funny looking at it though!

The train arrived on time but was delayed outside London Bridge station due to speed restrictions causing a backlog so I arrived with over an hour and three quarters to kill. Thankfully the rain had stopped and so I decided to take a leisurely stroll through some of our old haunts in the West End and I'm so glad I did.

As I wandered through the streets of Soho I walked past the offices of Private Eye, a satirical magazine, and it made me think about the murders in Paris. Then I spotted this beautiful sculpture on the front of The Nadler, a 'boutique hotel' created in 2010 in the centre of Soho. It is entitled Selene and was commissioned by the hotel to represent sleep. In the details, the sculptor says it was created in the image of a black woman but I couldn't actually see that. It's very interesting though with lots of bits to catch your attention.

Even though I dawdled all the way I was still there far too early so I sat with a coffee and croissant and watched the world go by for a while. I love people watching. You can just let your mind wander as the images flood over you. Then I thought I'd go for a short wander in Regent's Park, known as one of the Royal Parks (on land originally owned by the Monarchy), which is directly opposite the venue and I'm so glad I did.

Regent's Park was used as a hunting ground for hundreds of years but when the lease expired the Prince Regent, who later became George 1V, commissioned  the architect John Nash to develop the area. The park was first opened to the general public in 1845.

This is the first thing I saw when I entered the park - this sweet man feeding the squirrels. I asked him if  he'd mind me taking some photos of him as it was such a charming sight and we chatted for a while. He was feeding them with pistachios and they looked very plump and prosperous. He told me he goes there every day so they must love him! They were so tame.

I love to see a park being used by all ages groups and it was nice to see some toddlers and their nannies coming out to play and run around. I saw several runners and lots of dog walkers, thankfully all on their leashes. I mention that because a fellow runner, Jeff Prestridge, (****warning, do not follow the link if you are squeamish***) was attacked by a dog in Hyde Park recently. 

It was lovely to see the bare bones of the park displayed and what kept drawing my eye were the huge planters and fountains.

The section of the park I was in is known as the 'Avenue Gardens', laid out and planted in the Victorian style. There are lots of walkways edged with evergreen hedges and rows and rows of deciduous trees. This massive planter atop winged lions, known as Griffins or Lion Tazza, make an impressive feature. 

I love the contrasting foliage used - the black strappy grass-like plant is Ophiopogon paniscapus 'Nigrescens' which I use a lot in our garden at home and in the main bowl there's a form of Heuchera, possibly 'marmalade', and a dark-leaved Phormium.

Beautiful cascading fountain

The ground was so sodden it looks as if this bed has got a moat around it!

I loved the shape of this tree and its beautiful catkins

At 10:30am I headed across the road to the Royal College of Physicians which is the oldest medical college in England with a focus on public health and preventive medicine. It was founded in 1518 during Henry V111's reign.

View from the side

This current building was built in 1964 and is considered a modernist masterpiece and is now protected by a Grade 1 listing (a system for protecting building of historical importance).

However, when the building was erected it did not receive a warm welcome from the local residents because they felt its modernity did not sit happily next to the glorious buildings nearby as seen in this photo below.

Inside there is an interesting display including this model of the building. I've enlarged the plaque so you can see a comment from a local resident who obviously did not like the building at all!

I didn't have much time to look around so I just snapped away at anything that caught my eye and I loved these 2 decorative plaques:

There were lots of paintings and busts of famous physicians but it was this stained glass window panel that caught my eye as the bright colours broke up the starkness of the marble tiles.

I met some very interesting people with whom I would love to speak in more depth, especially those dealing with end of life care and those dealing with severe dementia. It became clear that research into the final stages of dementia is virtually non-existent which was disappointing and the other thing that struck me was that no-one seems to be studying the effects on the carer of caring for someone with dementia. I exchanged email addresses with several Professors so it will interesting to see where that leads, if anywhere.

I was interested to hear from some people who are looking at caring for the emotional needs of dementia patients rather than just using a pharmaceutical option (aka 'interventions'), i.e. dispensing drugs. I've always said that the reason we were able to keep mum in the early stages for so long was that she lived with us, had interactions with all age groups, was surrounded by music, animals and plenty of mental stimulation.

It was rather disappointing that within my group there was little enthusiasm for Join dementia research and there were comments such as "theres no way to link researchers with sufferers of dementia" and "there aren't many people registered". Given that when I last checked there are 1421 volunteers and 26 studies on the system I think we might need to do a publicity drive in the Universities to capture these Professors! 

I'm hoping that the National launch will get lots of publicity so that more people will sign up. I am already signed up to take part in a long term trial known as the PROTECT study which will help understand the way our brains age and look at certain risk factors (genetic and lifestyle). 

The trial is open to anyone over the age of 50 in the UK who does not have dementia or any other neurodegenerative disorder. I think this is an excellent study as if we know how and why dementia develops then we can stop it happening rather trying to find a cure after dementia has taken hold. 

All I had to do was answer a series of questions focusing on how I feel I react in certain circumstances compared with 10 years ago (for example, am I more forgetful, less self-assured, problem solving/reasoning powers, that sort of thing). Then Mike answered the same questions based on how he perceived my reactions, not how I perceived myself. The next thing will be to provide a DNA sample using a simple kit to take a swab of saliva.

If anyone reading this is interested in taking part in any research studies, please take a look at the  Join dementia research website and sign-up. There are helplines available if you have any questions and representatives from both Alzheimer's Research UK and the Alzheimer's Society will be able to give you more details. 

Please do join me in the fight against dementia as together we can make a difference.

Unfortunately I missed my train on the way home and had to wait another 1.5 hours for the next one. I used the time to wander round a bookshop nearby and when I got back to Charing Cross station I glanced over towards Trafalger Square and the spire of St martin-in-the-fields looked so beautiful glinting in the sun. You can see some photos of the church and crypt here.

More from before!

Continuing my day in London

When I arrived at the Barbican centre, with the help of a friendly delivery man and a traffic warden (I had 2 sets of instructions, neither of which were accurate!), I headed into the foyer and looked for the lifts as I knew I needed to go to the 4th floor. You'd have thought they would be easy to find, with clear signage, but apparently I'd entered the building by the one entrance where there weren't any signs. So I asked a friendly man, who was very unfriendly actually, where they were and made my way up to the reception area.

Morning speakers had been asked to be at the venue for 8:30am for a briefing which was why I'd left home at silly o'clock. There was no-one else there so I wandered off to the reception area and grabbed a coffee and choccy biscuit, which made everything seem better. The reception was held in the massive greenhouse area, adjacent to which is a sort of atrium full of enormous exotic plants:

To the left of the photo below you can see lots of windows and there is a walkway along there with our conference room just off it.

Refreshed by a dose of caffeine and chocolate I wandered off to find our room where I found Alexis, the organiser, and his technician busy setting things up.

I think there were around 120 attendees from all sorts of different areas involved in dementia care.

I'd taken my trusty ARUK dongle along which holds my slides and photos so I just had to check it was loaded in OK and then I could trot off for a wander and to chat with people.

Everyone should have a purple dongle!

This is the view on one side of the building. There are lots of flats in the complex and they are enormously expensive as it's what is referred to as a 'desirable address'!

There's a very pretty stretch of water there with fountains and greenery which help to soften the harshness of the concrete structure (well, a bit).

I rather fancied dangling my toes into the water as it was a really hot day! 

Then I headed back inside to find more delegates had arrived so there were people to chat with.

I had a lovely chat with Suzy Webster whose mother is in the early stages of dementia. She lives in an inter-generational household consisting of her parents together with herself and her family which is the best ever arrangement.

We discussed how things have changed, for the better, since I was a carer all those years ago. Mike and I had no outside help whatsoever and were just left to get on with things. Which is exactly what we did and it's gratifying to hear that nowadays many of the things we did instinctively are now part of mainstream care.

I firmly believe that we managed to keep mum mentally engaged and physically active for much longer for several reasons; she lived with us (this has to be better than living alone or in a care home), Mike worked from home and so there was music in the house all the time (now there are music/singing groups for people with dementia), we played lots of games such as scrabble/jigsaws/word puzzles/cards (the experts now stress how important it is to keep mentally active) mum still helped out around the house and garden for as long as she could and we had a mix of people of all ages visiting us and we went out visiting gardens/museums etc for as long as possible. The other thing I always did was to make sure mum had lots of time outdoors, or sitting by a window if the weather was bad, as one of things the experts say now is that often the lack of sleep in the elderly is caused by not getting enough sunlight because they stay indoors all the time.

The keynote address was given by Baroness Sally Greengross who hosted the event I attended at the  House of Lords earlier in the year. She's an exceptional lady and totally committed to this cause and we had a lovely chat beforehand. Next up was Matt from ARUK which outlined the latest developments in dementia research and talked about their £100m fund-raising plan.

Then it was my turn. We were each allotted 15 minutes but as Matt went over I did too (only a bit mind!). I know from experience that I can talk about dementia and what happened to mum without stopping for 45 minutes so I have to really focus on what I want to say in each different talk. This time it was more about the care side of things and how I felt that our more holistic approach kept her engaged for much longer. 

I also added in some things I don't usually talk about because they are too painful and just hoped that I would be able to speak about them without crying. I did get a bit wobbly on a couple of occasions but at least I managed to get the words out.

As always, I was introduced, by Alexis, as the 'extreme knitting redhead' and so I ended with the story of why I do my silly stunts. My talk was followed by Martin Orrell who cleverly introduced the word 'knitting', 'knit' or knitted' into his presentation!

After his talk there was a coffee break and I had a chat with several delegates, one of whom was Sean Bone-Knell who is Director of Operations with Kent Fire and Rescue. His father suffers from dementia and so he was particularly interested in mum's story. He also told me how he is trying to educate the fire service personnel in what it's like to live with dementia as apparently they have seen fires caused by people being forgetful or not being able to think through a problem correctly. An example he gave was an elderly lady who didn't have any matches when she went to light the fire and so used some paper to get a light from the gas stove and then walked through the house with the piece of flaming paper, dropped it and caused a fire. He asked if I'd be willing to talk to groups of fire service personnel in my area if he could organise it so of course I said yes and we exchanged our contact details.

I couldn't stay for the afternoon session so I headed for home. By that time it was really hot and I was very glad I was wearing a sleeveless dress.

As I walked over London Bridge the tide was low and you could see the banks of the River Thames.

In this next photo you can see a ship, or more specifically a galleon. It's a replica of the Golden Hind, captained by Sir Francis Drake. On the corner next to it you can see lots of people enjoying the sunshine outside a pub whose name I can't remember (the Ship Inn?, Doggetts?) which is really annoying as it was a meeting point for me and a friend as it was halfway between our respective offices!

As I walked towards the station I spotted an ice cream van so made a short detour to grab a gloriously lush strawberry ice cream before I headed off for the train home. 

The Alzheimer's Show

On 16-17 May it was the 2nd Alzheimer's Show. The inaugural event was held last year in the Horticultural Halls in London but this year it had moved to a much larger space within Olympia.

We had a nightmare of a journey with cancelled trains & tube lines not running/stopping where we needed to get off! Thankfully Mike and I always allow lots of time for our journey as we can't bear to be late for anything so when we ended up a 30 minute walk away from where we wanted to be we just jumped in a cab for the final section.

My first stop was to the Join Dementia Research stand to meet up with Zara and the team. Anyone who's been following my blog for a while will know that I have been banging on about the need for a way of linking researchers with people suffering from dementia - how else can we learn more about the condition and find ways to prevent/cure it?

Back in 2009 I attended a Ministerial Summit on Dementia Research at the Royal Society in London and this need was expressed. Since then I've been involved with the Dementia, Neurodegenerative Disease Research Network (aka DeNDRoN) to develop a new on-line service to link people with dementia and their carers/families with researchers and  so you can imagine how excited I was that the project is nearing the launch date. For the last few months I have been part of a conclave, in conjunction with the system developers, testing how the system works.

The website isn't live just yet but it will be here soon.

I put some leaflets on the chairs in the lecture theatre where I was going to speak.

After a look round at the stands and chatting with a few people I know we headed off to find Louise from ARUK and check out the venue. It was the same size as last year but this time they'd sorted out the sound system (last year I was the first speaker and the microphone wasn't working properly and the speakers weren't set up in the right position!).

Chatting with Louise

A quick sound check before people started to arrive

We set up the slides, people settled into their seats and I went into my serious mode. As I've been supporting ARUK for 9 years I like to start my talks by telling people why I chose them originally so on my first slide I had:

* Devastating effects of dementia (on my mum and on us)

* Stigma of mental illness (especially heightened when referring to the elderly - I've heard people say that the elderly have had their lives so it doesn't matter!!!)

* Social isolation (I could talk about this for an hour rather than the 20 minute slot I was allowed)

* Research into dementia is vastly under-funded (still, after all these years)

Sadly, all those reasons still apply.

The photo I chose to show whilst I was speaking was of my mum, aged 79, digging in our garden, hair all over the place and a big smile on her face. That's how I choose to remember her; as an intelligent, active and very capable person who was never afraid to get stuck in. As always, she was with me both in my heart and I was wearing her ring (which I also wear whenever I run a marathon so she's clocked up 35 marathons so far).

Me and mum take the stage together 

I should mention now that I don't like addressing a small audience because it's so up-close-and-personal and I can see every tear that falls, every blot of the eyes with a hanky, every gulp. Inevitably I spot these little things and I can lose my focus. Give me a few hundred people and I'm much more at home as I can't distinguish individual details.

There are many elements of mum's story that I never talk about because they are just too dreadful but I do have to mention some things so that people understand the horrors of dementia. So I told them about the psychotic episodes, the realities of double incontinence, how my sister died and mum didn't know that Judy was her daughter (the audience was dabbing away the tears by this stage) and then I switched to this slide of me and mum when I was little. 

This was the first time I've spoken about this episode in public although I mentioned it on my blog here. I thought I could do it, I really did, but when I started to speak my chest tightened and I felt the tears pricking behind my eyes. I had to take a moment to compose myself. 

Here's what I wrote about the photo in my earlier post:

You see one of the things we did to help keep mum's mind active was to look at old photos and talk about them - who they were, what was happening, where they were taken etc. One day when I was tidying her bedroom I found a whole pile of photos ripped up and stuffed into the wastepaper bin. Photos of mum and dad together (their courtship and wedding), my sister & me as children - all the usual family photos.

When I asked her why she'd ripped them up she said that she didn't know anyone in the photos so there was no point keeping them. She'd also scribbled over some of them in pen. It's brought tears to my eyes just typing that. 

If you look closely you can see a pen mark on mum's nose.

By that time I was getting near to the end of my allotted slot and so I had to quickly talk about my fund-raising antics. I thought I was safe talking about that but when I mentioned the crochet chain and its significance I saw 2 people wiping away tears and I was mighty glad to finish!

Why do I keep doing it? 

It's simple; I was so horrified by what happened to my mum that I can't bear to think that anyone else will suffer that way. 

Is it to keep my memories of my mum alive?

I would prefer not to have to relive my memories of mum during the time she was gripped by dementia but it's the only way I can get the message across.

We need to raise awareness about this devastating disease and invest more money into research.