Category Archives: Dreams

7 years ago today, my life changed……

I usually automatically remember this anniversary but this year it was going to pass me by unnoticed until I got a txt from my daughter…..

It’s also my other best friends birthday – happy birthday Julie! And thankfully I didn’t forget that thanks to reminders.

You see, today July 31st 7 years ago I received that devastating diagnosis of dementia. If I’d have believed the medics, my life was over. But unbeknown to me then, that devastating diagnosis opened up a new world, obviously not one I would have chosen, but still a wonderful world with lots of new wonderful friends I call my playmates; with people like Innovations in Dementia who enable and encourage us. To all of them I say, thank you 🙏

But what fun I’ve had in 7years…..yes, every day is a struggle, every day dementia reminds me of its presence, yes it’s a bummer of a diagnosis BUT if all you see are the negatives what a waste of the life there is still waiting to be lived!

Here’s just some of my highlights I found as I flicked through my photographs this morning….the detail has long vanished from my mind, but the emotions the images stir are still there…

Meeting Hollywood star Julianne Moore at the premier of Still Alice in 2015

In 2016 I moved to my wonderful village with all its beauty, all its characters and all its love – I couldn’t believe the date when I saw that as I thought I’d only been here a couple of years 😂

In 2017 I went up in a glider – a birthday present from my lovely daughters and Stuart

AND later that year walked on fire for charity

2018 was another special year as that was the year my book was published in hardback, meaning I’d already had a year of the lovely friendship of my partner in writing, Anna Wharton….

2019 the paperback version of my book was released

AND I became Dr Dr thanks to Hull and Bradford Universities

AND I did my tandem parachute jump for charity..

2020 will become known as the year we all hibernated due to Covid, BUT that enforced hibernation allowed me to write my second book with Anna and is due out next January….more on that in the autumn…..

Which bring us to this year, 2021…..when my latest adventure was my tandem paraglide

So you see, good can come out of bad, but it won’t happen automatically, you have to go out and search for adventures, search for life. There are so many things I can’t do now that I can no longer list them, but I never dwell on them. I have no control over what I can’t do. Instead I focus on having adventures today and if today is a bad day…..tomorrow may be better….

Moral of the tale – never give up on yourself, no matter what people say to you, let them do that if they so wish. Believe in yourself and you can do anything you want……..

A meet up with round the country walker, Karen Penny……

Karen Penny is doing something I can only dream of now – walking the entire coastline of Britain and Ireland. Karen is aiming to raise £100,000 for Alzheimer’s Research Uk (ARUK). When I last looked she’d reached the staggering amount of £90,117 !! 😳😳 Her Facebook page says:

I am now ready to embark upon the adventure of a lifetime; a continuous walk circumnavigating the 20,000 Kms of the British and Irish Coastline, and it’s islands. A feat never achieved by a woman, least of all by one on the wrong side of 50!”

She set off on January 19th 2019..and she thought her journey lwould take about 3.5 years, taking in as many of the islands around our coast as possible. However she now believes she just has 2 months left before completing this mammoth adventure.

Covid meant her walk came to a halt until rules allowed, but she’s now steaming on and on Monday she reached my neck of the coast. Sarah had kept in touch with her and we arranged to meet at Flamborough North Landing last Monday….

To say I was excited was an understatement. Karen is doing something I would love to do – she is living my dream! Sarah picked me up at lunchtime and we drove for just over an hour before reaching this glorious place.

The weather app 2 days before, had said we’d be meeting in torrential rain, but thankfully it had changed and the sun was shining and it was the perfect temperature. People were down in the cove enjoying the peace and beautiful surrounding

Sarah txt Karen to say we were there and we’d meet her on the coastal path. We started heading up, just stopping to take a piccie

When Sarah announced, “She’s there!”

And we could see the familiar hat and flag coming towards us waving. We’d been following her journey all this time so it felt like I knew her and we easily fell into comfortable conversation as we headed for a cuppa. I had so many questions that instantly vanished🙄

We sat on a bench in the shade and heard the most wonderful stories of her adventure. It will make a brilliant book when she has time to actually think about it. Sadly they’ve all vanished now, but at the time I remember being amazed at the stories and people she’d met along the way.

As you can see on her rucksack, she’s so far done a staggering 9,500 miles and has 1500 left AND has is on her 10th pair of boots! Not only does she walk but she carries all her camping gear on her back too! Sometimes kindness comes her way and people offer her hospitality and a bed for the night but for the rest she camps.

She had to cut short her walk around the Shetlands so still has 30 miles to do there and that will be where she finishes towards the end of September. I so wish I could be there to see her take her final step 🥰

She spoke kindly about how meeting people spurred her on and gave her that incentive again, as it must get very lonely and tiring sometimes. She has also met two other playmates along the way, Peter Berry and his wife in Suffolk and Sue Strachan in her neck of the woods. 

After an hour or so, much chatter and laughter, and putting the world to rights about charities, it was time for her to complete her final miles of the day and we had to say our goodbyes. Her easy relaxed manner and wonderful smile oozes calmness.

I couldn’t stop clicking my camera

We walked with her just a little way before waving her off and watching her go heading further around the coastline. She was heading towards Bempton Cliffs and hoped to see the elusive Albatross on her way.

We sat and watched until she was almost out of sight…and then she turned and waved one last time…

….before disappearing round the headland. We sat with beams on our face. In the car I suddenly felt totally exhausted from the exhilaration of the meeting. I knew dementia would make me pay for such an exciting day in the morning, but it was happy exhaustion; happy from having met this woman who was living my dream……

If you’d like to see more and follow her journey , her Facebook page is called Karen Penny – The Penny rolls on Walking Britain and Ireland. Even more important, if you’d like to contribute however small amount to her fundraising, you can do it here:

https://www.justgiving.com/fundraising/thepennyrollson

Another wonderful dream of Sylvia…

I watched Sylvia’s funeral on line again, without the pressure of being there and it was more beautiful than I remembered. I was able to be a bystander, watching from the wings. Although I wouldn’t have missed being there for the world, it was hard to take it all in. So much more to think about, where to sit, trying so hard to remember all the names of all the people and failing miserably. 

I txt David afterwards to tell him how even more beautiful it was watching it again in silence. He replied saying he was picking up her ashes that day, some to be used for rings, the rest, and here was the surprise, the rest to be scattered on Derwentwater in my paradise of Keswick; the place she introduced me to many years ago.

I was overwhelmed with joy as that is also where part of my ashes will be placed. He also posted a video of her on the beach at Fraisthorpe, where she went on her last visit to me and where Sarah often takes me. On the video she was talking and I kept playing it over and over again just to hear her voice – never forget to record your voice as it provided even more comfort than a photo.

That night another wonderful dream entered my night. I was there with Sarah and David was there with Amanda and Tosca. Me and David were sat in my favourite spot on my favourite bench at Friars Cragg.

Robins are very territorial and will fight for their territory and will die without it. However at Friars Cragg, the Robins there have different rules and live happily side by side, enabling smaller territories for them all to live together. So many souls of those long gone living around that very spot, together. So many ashes spread just like mine will be. The Robins here, if you look carefully, have a huge community. I’ve seen them all around Derwentwater but no more so than at this spot.

So. going back to my dream. Me and David on the bench and Sarah videoing our conversation; Tosca and Amanda watching on beside us. I held out my hand, a few grains of seed and suet and we waited. Then, as I knew would happen, this slim elegant Robin appeared and landed on my hand and ate a tiny seed, our gaze holding the moment…..before she pooed on my hand, signalling Sylvias presence as I’d asked of her. 

I told David to put a piece of the suet between his lips and the Robin flew up and kissed it out of his lips. She then flew to the branch and sat there watching us all. Being greedy for more contact, we held out the seed but the Robin refused any more of our offering. 

That proved even more that this Robin was Sylvia as she would never want to become a fat round Robin….always the elegant slim Sylvia…….

I woke all excited believing it to be real. In my dream Sarah had taken photos of the moment from the video she made and I was all for sending them to David, Amanda and Tosca. But as I looked through my ipad for the evidence I realised it was in fact only a dream, but how wonderful it was…..and you never know, one day it may happen, maybe not in that way, but I know I will see the new Robin at Friars Cragg…

A Dementia Strategy that comes from our own heart……Our hearts

For the last few months at my weekly Zoom meeting of me and my playmates at York Minds and Voices, we’ve spent a portion of the time putting together our own Dementia Strategy.

For so long Organsiations, Health and Local Commissioners, Councils,  have been putting together a Dementia Strategy that does not or rarely meets our needs. It’s often many pages long, making it a prime target for sitting on a shelf  in a back office somewhere redundant of use. The outcomes are rarely achieved and often unachievable and simply not what we need. 

Whether or not you have dementia, no one likes to have a live document which is heavy in text, fancy words and light in deliverables.

Well, we got fed up of all the jargon that was being used to make those decision makers  feel good as though they’d ticked a box – i.e. they had a strategy….but did anyone read it?

We’ve got ours set out simply and to the point:

The Issue, the Examples and we’ve even given the Solutions…..

We’ve broken it down into 4 sections:

Before Diagnosis

At the Time of Diagnosis

Post Diagnosis

The Future

if York City Council at least don’t take note of it, then we might boycot their strategy. They’re about to produce one themselves and we’ve sent them ours……how much will they take note of? 

How many Commissioners will compare our Strategy with theirs?

How many organisations will look at our strategy and change theirs?

Only time will tell.

Any way here’s the link if you’re interested in seeing what WE think should be our strategy…..

Maybe my dreams show me my possible future …..

I woke up after a disturbed night. Reliving my past through my dreams and waking moments where images wouldn’t fade away. Of the cruelty of young girls at school, believing them to be your best friends and then they turn their back on you. Images of loneliness following me through the night, waking sad and shocked, then sleep returning only to continue the solitary journey, like a Pandora’s box opening up everything that had stayed silent.

I finally decided to get up, darkness still hanging in the sky. The thought of trying to sleep again to relive cruelty and sadness too much to bare. My head feeling worn out by the gruelling night, I had my shower, following my normal routine to give me some normality back.

I looked at the kettle as I shuffled downstairs, my eyes heavy with the desire to sleep. I flicked it on automatically, but then noticed the sky just about to get light, so both arms into my coat, zip up against the cold, duck food hanging from my wrist and camera round my neck, I ventured out, hoping the cool morning air would wake my tired body.

It was bitterly cold, a strong wind blowing, clouds racing across the sky

Holding tight to my hood, I crossed the road to climb up through the snicket, in the hope of some shelter. My stick the only sound I could hear faithfully keeping in step.

The morning walk went by in a blur. I remember standing and watching the sunrise in the far field

My limbs felt heavy, my arms felt weak and simply wanted to hang at my side. I felt my body shutting down again. ‘Ring Gemma’ a voice said inside, but my hand feeling around for my phone found nothing but emptiness, empty pockets meant I’d forgotten to pick it up in my haste for fresh air….I stood for a moment, trying to distract my body by looking at the sky

I’ll count my way home, concentrate on counting. And so I did, one foot in front of the other, counting in sets of 100 before starting again……44, 45, 46… I hadn’t even fed the ducks yet, but today the food would be thrown on the grass for them to help themselves…..87, 88….just needed to get home and lie down…..1, 2, 3 

I don’t think I saw anyone that morning as my key gratefully slotted into the keyhole and let me in, where I collapsed on the stairs and just sat……..

As usual, after a cuppa tea and snuggle into my bed, I felt more normal, but could tell today wasn’t going to be a good day…looking at my app, it read 2hrs 31 minutes of sleep and today it really felt like it…

I no longer dream of the present, only the past, as though my dreams have regressed, showing the haunted life I may be immersed in at a later stage of dementia…my girls always appear as young children, sometimes doing adult jobs, but it never seems odd at the time. The ones with my daughters in are comforting, but the fact that my ex is also there very disturbing. The ones of me even younger are just haunted with distress and very disturbing.

So if dementia chooses to take me back in time, I hope I’ve been gone long before that day…..