Dementia GEC Storyboards

Today is the National Day of Reflection.
At 12pm all across the country, a one minute silence to remember all those loved ones we've lost will be held as we mark two years of Covid-19.

I will be thinking about my Darling Nan at this time, as I do anyway throughout each day, but it brings comfort that so many will be stopping to reflect. If you are joining in, I hope you will find comfort too.

PLEASE READ IF YOU HAVE ELDERLY LOVED ONES IN THE WEST MIDLANDS, PARTICULARLY BEING TREATED AT GOOD HOPE HOSPITAL IN SUTTON COLDFIELD.
Almost two years ago, I was declared ‘clinically vulnerable’ and at risk of COVID-19. I was advised to stay home, which I have done, pretty much have stayed there all on my ownsome since, just trying to get on with things. I lost my job, started teaching online etc and learned the art of online shopping so that everything you need can be delivered and still avoid the antibac and cleaning products I am so allergic to.
I also started Dementia GEC StoryBoards, giving out Dementia Care Home Cuddle Boxes and raising money for Dementia UK, in memory of my Nan who we lost at the beginning of the pandemic. I was always passionate about dementia awareness, but Nan’s diagnosis lit a fire under me and I’m not stopping to spread the word of the importance of dementia care even though she is now gone.
Fast forward to the 1st of February, 2022, when issues with lymphedema came to a head and 999 was called by a specialist saying she wanted me in hospital. I always have been mobility impaired, long walked with a crutch but had a sod-that attitude and did what I wanted anyway, this pandemic though has now made me disabled. Being stuck in my home, wrecked what little mobility I had and when the lymphedema became infected, off to Good Hope Hospital in Sutton Coldfield I was sent. If I could turn back time now I wouldn’t have let anyone into my home all day. The last 19 days have been the worst of my life…
As a teenager, I often joked that if you saw an x-ray of my legs you would have thought I was in my 60s not teens, so I suppose that means now at 39, in leg years I am around the 80 mark. Therefore, I have been ‘cared’ for within elderly care at Good Hope. Often next to or opposite people in their 80s and 90s, often with dementia. I have spent 19 days seeing them being ignored, have their call out buzzers put out of their reach so they couldn’t buzz for help. Being told to go to the bathroom themselves when their bed guards were up and so couldn’t actually get out of bed let alone manage to get to the toilet themselves. I have seen them being ignored, chastised and picked on when they didn’t feel up to eating or are shaking too much and cannot hold a spoon. Being told they have to keep drinking, even though they can barely lift a beaker and if they manage they will either spill the liquid over themselves or find the contents have solidified because of the thickener added to their drink.
My own treatment by Good Hope has been horrific, but if I was elderly in mind as well as in legs, without a voice, without a phone, without a support system, the thoughts are unbearable, so I did what I could do, I would buzz for help when the patient couldn’t, demand treatment for them when I could and advocated to the practitioners their issues when they weren’t being listened to. I was told to stop buzzing for them, they were just ‘confused!’ On two occasions I snapped and got up to help them myself. The first time on 13.02.2022 was for an 85 year old crying for a drink, buzzer hidden away, guards up on her bed so she couldn’t get up and table out of reach. I got her a tissue, she took my hand and I went to help her with her drink, to find it was now a solid block because of the thickener. A HCA walked past and I screamed at her for help and she came and got a new drink, whilst I carried on holding her the patient’s hand as she said with tears in her eyes, “Why don’t they care?” Then a nurse suddenly appeared, chastised me and told me to get back in bed, watched as I did so and then left the room, not once did she try to soothe the patient. The HCA put the drink on the table, I insisted she moved the table closer so she could at least try to drink it herself (she didn’t offer to help herself, nothing like that) and then sat down in our bay and started watching videos on her phone. I think purely as a point of stopping me getting out of bed to help again.
Now, as I said I went into Good Hope with a leg infection, however I was left in bed for over two weeks, physios came once to tell me I was mobile, although I could barely get out of bed to get to and from the toilet, the seat next to my bed was too low so I couldn’t sit on it and I was having to borrow a frame too small for me from the ward as physios refused to see me again throughout my stay and wouldn’t issue me with a suitable walking aid. By being stuck in bed for so long, I started to get stabbing pains in my right thigh and an electric current running through it. My lower back became agony as I hadn’t sat properly for so long. The only time I had relief from the pain was sat on the toilet, so I used to go to the bathroom when I didn’t need it just to sit and ease my back. The final straw came with my left calf, already much weakened by cerebral palsy, so if I don’t move around enough it becomes weak and can ‘snap,’ started to repeatedly ‘snap’, so much so I stopped drinking and tried to eat less to avoid trips to the toilet. The physios still refused to see me.
The next day after getting out of bed to get a drink for the first patient, (so this is the 14.02.22), the 83 year old patient opposite was getting really upset, she was just starting to walk to the toilet on her own but was told she couldn’t do so without wearing slipper socks. She desperately needed the toilet, was on the verge of wetting herself and no one would respond to her buzzer. Her physio, when she had visited her earlier had took her slipper socks off her and placed them on the cabinet next to her bed but out of reach. So, again, I dragged myself out of bed, grabbed the socks and got back in bed, unseen by any of the staff and she went off to the toilet. Neither of us mentioning it to the staff as I had been chastised by the staff the night before.
The next day (15.02.22), this lady was discharged and went home, I was starting to feel really woozy, lightheaded, I had a horrible headache and all my joints were agony. I was quite out of it in bed, but I became aware that my next door neighbour who I had helped with her drink was moved overnight into a side room. I asked after her on the 16th and was told it was for her to get more attention, she had been really ill, was up most nights and we were all getting little sleep, but I did worry that it was because they had seen me help her and I had already been told to stop buzzing on her behalf.

On the 17th I continued to feel awful, the nurses came and went doing all the usual checks and I woke up on the 18th with a vicious sore throat and a text from the NHS Tracking text service, I had Covid-19, the very thing I had been trying to avoid for 2 years. We had been aware that Covid was on the ward, as bays started to close and certain toilets became out of bounds but we were assured our bay was negative and clean. I had trusted them. Due to living on my own and my legs being so bad, social services have become involved and I knew that I was to be sent to an assessment bed after hospital to see what additional support could be put in place to help me. Shortly after the diagnosis text, I had a phone call from social services to say that the original assessment bed was not possible because of my ‘covid contract’ status having been in contact with someone with Covid on the 13th February, so they must send me to a covid contact bed before an assessment bed. I said to her that I had just received a text saying I had covid and asked who had informed them of this contact as no one had told me.
A nurse then came to tell me that I had covid and that a covid bed needed to be arranged for me in a care home so I could be discharged. I was then moved to a care home yesterday, one who knew someone was coming with covid, but didn’t know who, had no prior warning as to my medical needs, so I have now been in an unsuitable bed for over 24 hours, one that I am struggling to get in and out of, all seating in my room is too low, so I can’t sit down and Good Hope sent inappropriate medication and guidance, including one type of medication I am allergic to, so the last time I had my proper medication was 8AM on 19.02.22, to say I am in agony is an understatement.

The covid is now affecting my breathing, so I am writing this now to make sure I can get the information out that DO NOT SEND ANYONE ELDERLY YOU LOVE TO GOOD HOSPITAL IN SUTTON COLDFIELD, ESPECIALLY WITH DEMENTIA. I saw what they were doing, I know what they did to me. I have to assume that the first lady I helped was positive (though no one ever confirmed this to me) and I am worried sick about the second lady I helped as she went home before my testing and diagnosis, I told every practitioner I saw to contact her, but they all dismissed my concerns, so I have no idea if she was told.
I feel awful and am in so much pain, but am so worried about my elderly friends I left alone in Good Hope as if I’m not there to buzz for them, who are. So, I am sorry if this is all a covid-rambling mess but I need to spread the word.
ALSO THANK YOU TO MY FRIENDS SARAH AND ANNA FOR THEIR SUPPORT, WITHOUT THEM I WOULN’T HAVE COPED XX

Dementia UK Alzheimer's Society

Today marks 2 years, since Nan & I put up her final Christmas Tree. It was such a lovely afternoon. As her got worse, anything on a surface or on the floor was at a high risk of being hidden away, but she would leave alone anything on a wall, perhaps because her perception was it was attached to the wall, I don't know...

I did some research and found this felt tree with Velcro decorations and took it along with us to see how she would react. As I have said before dementia creates dark days and light days, unfortunately Christmas Day itself was a dark day, she was on new medication, tired and wouldn't get out of bed, I managed to get her up in the end and she opened presents but it was a really difficult visit. So, for me the 15th December was our last with Nan. She loved decorating the tree, happily wore her Christmas hat and even left me with instructions as to what else she wanted to decorate her care home room. We had a really lovely afternoon and I had no idea at the time how much I would treasure it or this felt tree so much. So, if you have a loved one with dementia, I really do recommend looking into one.

My special memories of this day also meant that I wanted to announce how much we raised in the Santa's Little Helper Challenge and Fundraiser on its anniversary. I had hoped to raise £25 to get over that £800 raised mark and shockingly after eBay fees etc the fundraiser raised over £65!!! So, now at £840.94 raised for Dementia UK! So, thank you to everyone that got involved and bid.

The are also in the process of being shipped out. 5 went yesterday and I'm just awaiting confirmation that it is safe to send the others because of COVID restrictions, but hopefully they will be out in time for Christmas too.

So, 15th December continues to be a good day for me. A good day in Nan's . Not every is great, many are very dark, sometimes very very dark, so you appreciate those good days even more and putting up Nan's final Christmas Tree is amongst one of my favourite Christmas memories ever now and I love celebrating and remembering it.

Just under 3 hours before the nominations close and 10 UK Care Homes will be selected for the Christmas Dementia Cuddle Boxes.
So, this is the last peak at what is in these special Christmas boxes… .

Shortly before her dementia diagnosis, my Nan lost her engagement and wedding rings. She was so upset to lose them and always kept looking for them. As her dementia deteriorated though, she forgot she had lost them at all and became more and more distressed about not wearing her rings.

So, I looked into costume jewellery for engagement and wedding ring dupes and found these which she loved (the more sparkly, the better!)

Unfortunately, we never did find her rings, but I always kept a set of her ‘dementia rings’ in my handbag for when I visited her, in case she was without rings again.

I have enclosed a set for of rings within each cuddle box, in case they have residents who like my Nan, didn’t feel themselves without their rings.

So, if you have connections to a UK Care Home and would like to help me gift their residents Christmas Presents, DM me quickly.

Alzheimer's Society Dementia UK Dementia Friends

LESS THAN 24 HOURS TO GET YOUR UK CAREHOME NOMINATIONS IN FOR A DEMENTIA CHRISTMAS CUDDLE BOX!

In the last few days I have been giving you a sneak peak into what is inside these Christmas Gifts Boxes, and so here is your sneak peak for today. Hand cream...

Well, not just any hand cream, shea butter hand cream. My Nan always had hand cream on her, it was always in her handbag, there would be one in each room in her home and usually one in her pocket too. Though she loved a bargain and would never treat herself to a more expensive brand.

Her love of hand cream stayed with her throughout her dementia battle, but she just would lose bottle after bottle. Every week their would be two in my handbag, one for her to keep (and most probably lose) another for me to keep to help remove her chin whiskers she hated.

One visit I arrived and had forgotten to top up my bag and I didn't have any of Nan's hand creams on me. Only my own French shea butter one, which she used to tut at because of it's cost. So, I had to use this on her whiskers and she loved it, no tuting this time time, referring to it as the "French posh one".

The next visit arrived and I was better prepared and had her hand creams back in my bag. You probably can see where this is going but with Alzheimer's short term memories can be hard to hold on to, something that happened minutes ago can be very quickly forgotten. Well, I got out her creams and went to do her whiskers and she turned to me and said "Don't you have that French posh one?" The things she forgot and that is what she had remembered! And not just this time, numerous times afterwards, to the point that when I needed to refill my hand cream (because we were both using it now!), a face cream for her was added into the same basket and remained in my bag for the rest of her life. I still have it now, I can't get rid of it, it is too lovely a memory to throw out. So, of course, I had to make sure that shea butter hand cream was included in the cuddle boxes. Not quite the French posh one, but I hope she would still approve.
Alzheimer's Society Dementia UK Dementia Friends

Another addition to the - mystery DVDs.

I am sat here watching my favourite Christmas movie wrapping up presents for these TEN special cuddle boxes, and my thoughts drift to my Nan. I CLEARLY remember her and my Grandad taking me and my sister to see this movie when we were little. So, many of my memories of my Nan from childhood involve her taking me to the cinema, and the roles reversed as I became older when I would take her. No doubt in the last ten (ish) years of her life, the was her favourite. Indeed, after my Grandad died, she repeatedly told me it was the only thing that made her smile. I lost count of how many times I watched it with her as we grieved, it just put a for a few hours. The second Mama Mia was released shortly after she was diagnosed with dementia and transferred into care. We were all determined to get her to the cinema one last time to see the sequel. Little did we know it chartered the story of a daughter losing her mother and me and my family sat in tears throughout whilst my Nan happily sang along oblivious. When you lose someone, you often look back at the 'lasts' with them. Because of the pandemic we missed a lot of lasts with Nan, but I am so grateful that we got her to see as her last movie in a cinema.
Every care home my Nan lived in had 'movie days' and she happily would tell me about a new movie she had been out to see (with us knowing 'out' meant an upstairs room), so for her, she didn't lose her love of movies and TV drama in
care, she gained so many 'new' ones. So, in each of the cuddle boxes, I am also including some of my Nan's favourites as 'mystery' gifts for these homes' movie days.

Thanks for reading, and on the anniversary of its release I say and get in those nominations of UK Care homes for me to send all these mystery DVDs and cuddle boxes to please x

The story behind the Dementia GEC StoryBoards Dementia Cuddle Boxes.

When my Nan was diagnosed with back in 2018, it was a whirlwind for us all, looking back there are so many things that aren't clear in my mind as everything happened so fast and Nan deteriorated fast. One of the things I remember clearly though was attending a Christmas Party and ours being one of the only families there. Visiting Nan at all her care home always was tinged with sadness as so few families were there. But for some reason at Christmas it didn't sit right with me and I couldn't shake the feeling of so many not having a present to open on Christmas Day, so I went and purchased every resident at Nan's home , a calendar just like these. 48 calendars for 48 residents ( I will get to Nan's later...) I wrapped up 48 calendars and took them in. It didn't feel enough but it was a start.

Now comes the funny part, when I purchased the calendars, I already had one for Nan to open when we were going to visit. But, I didn't want her to become distressed that everyone was opening one and she wasn't. So, I took hers in early, so she could open it with her friends.

Dementia blew away Nan's filters, the understanding of knowing what to say and not to say, and she could be brutal, but also funny with it. Which takes me back to the calendars. Let's just say she had not been impressed that everyone had got these 'lovely calendars' and she was left with this random one! Yes, she wasn't having any of it, she wanted a lovely calendar, not the one I had purchased especially for her. For weeks after she would steal them from people's rooms and hide them in her own! Every visit I would hear about the calendar snatcher and it was just so funny to me and just summed up an aspect of dementia that people don't talk about. Her filter was switched off permanently.

So, when deciding to make special Christmas Dementia Cuddle Boxes for residents, I knew I had to throw in some lovely calendars for Nan.

More Christmas Dementia Cuddle Box stories to follow, but if your loved one's UK care home has a too, please do nominate the home to receive 1 of the 10 cuddle boxes we have to giveaway

And the first Christmas Dementia Cuddle Box is wrapped up and ready to go... but where to?

This box and it's 9 siblings each need a UK Care Home to be sent to. Thanks to those of you who have already nominated a home, but keep them going. I have lots of toys and mystery gifts ready looking forward to having a new home this Christmas morning.

So, DM your nominations!

A sneak peak of what is going into these Christmas edition Dementia Cuddle Boxes and how my Nan's battle with inspired them will be posted about later tonight and all throughout the weekend, so get your thinking caps on, which care home residents need a cuddle this Christmas?

For me, when I think of my Nan's dementia, this is the face I see.

Before, her diagnosis, she would never have been missing her teeth, let alone smile for a photo without them. But I was visiting her at her Dementia one day, took out my phone and said smile and she did. I can't begin to describe how much I love this toothy grin or how much I miss her.

BUT NOW this photo serves as a reminder that with dementia, yes, there are dark days, too many dark days, but there are also loving, funny, even hilarious, wonderful days, just like this one was. I started because there is too much emphasis on 'remember them how they were.' BUT I refuse to, in my 37 years of having Pam as my Nan, 2 of them were spent with her smiling at me like this- why would I want to forget that? Dementia takes away too much. Dementia patients shouldn't be forgotten, just because they begin forgetting themselves. And that is why I started fundraising for as they are specialists in helping patients and families to live well with dementia and I can't believe this weekend, in nearly a year and a half since we lost her, I will have raised over £800 (through ) for those , those families, carers and patients who are living with dementia NOW. This fundraiser on eBay is shaping into becoming the most successful one yet and I am sat in what appears to be (or my living room), wrapping TEN worth of , so that another family, or a carer gets to see a toothy grin when a dementia care resident gets to open a present this Christmas.

So, please contact me if you have a UK Care Home in mind that I can send one of these cuddle boxes to (I post them all on Tuesday), they are full of , , and as well as some I will discuss with you more tomorrow. AND/Alternatively, check out the awesome fundraiser sale that is running through eBay at the moment. The link to check out the eBay sale is:

https://www.ebay.co.uk/usr/gec-storyboards?_trksid=p2047675.l2559

THANK YOU.

Dementia UK

“A REAL CUDDLY CHRISTMAS PROJECT” UPDATE TIME!

I can’t believe I am saying this, but thanks to the generosity of all of the donators. I now have TEN Dementia Christmas Cuddles Boxes to post out this Tuesday! This is the most boxes I will have ever sent out at one time!

All I need now is your nominations. So, please contact me with them before 6PM on Monday 13th December, 2021.

THANK YOU SO MUCH to everyone that has got involved. SO, many dementia care home residents will have a 'real' gift to open this Christmas because of you.

With three days still left of , we have already SMASHED through the £800 mark raised for Dementia UK in memory of my Nan. Excited to see how much we raise in total now. Check out eBay page and !
https://www.ebay.co.uk/usr/gec-storyboards?mkevt=1&mkcid=16&mkrid=711-127632-2357-0&media=TWITTER&sojTags=media%3Dmedia

So excited that as there have been lots of bids, we will definitely smash through the £800 raised mark for Dementia UK in memory of my Nan.

Can we make it to £850? Check out this BRAND NEW & SOLD OUT The Vamps V necklace https://www.ebay.co.uk/itm/284554330119 The Vamps Updates

The**VAMPS** BOY ** BAND GROUP Sold Out V Necklace (Proceeds go to Dementia UK) | eBay Find many great new & used options and get the best deals for The**VAMPS** BOY ** BAND GROUP Sold Out V Necklace (Proceeds go to Dementia UK) at the best online prices at eBay! Free delivery for many products!