Matched Giving - Well done to Ellie Knight
02 October 2023
We are proud to support our colleagues fundraising efforts with our Matched Giving initiative - a way of boosting the money you have fundraised.
Congratulations to Ellie Knight and her daughter who recently completed The Memory Walk in support of Alzheimer's Society who work towards a world where dementia no longer devastates lives. Ellie has raised £200 and received a £250 'matched giving' fundraising boost from Carpenters Group.
Here is what Ellie had to say:
"During the pandemic (2020/2021) we as a family noticed grandad was becoming more forgetful, doing unusual things/doing things that didn’t make sense, such as putting the kettle on the stove and then turning it on, but he would not have any recollection of doing these things.
Despite numerous attempts by mum and grandma, he refused to see a Doctor. Towards the end of 2021, mum persuaded him to chat with the Doctor. Mum and granddad chatted with the doctor, who referred him for a brain scan and made an appointment for him with the memory clinic for the results and a follow up.
We knew deep down he had dementia, but on the 27th May 2022 our suspicions were confirmed, he had advanced Vascular Dementia. Whilst this was shattering news, it was also a relief as we knew what we were dealing with and the “abnormal” behaviour could not be helped.
Exactly four days later, 31/05/2022, my mum got a telephone call from grandad to say grandma had fallen in the kitchen and he couldn’t wake her and get her up. Mum rushed over and unfortunately found grandma had passed away. To say mum’s been thrown in at the deep end is an understatement!
As a family, we are not just grieving the loss of a wonderful mother, grandmother, great grandmother, we are effectively grieving for the loss of a wonderful father, grandfather, great grandfather. Losing his wife of 60 years suddenly, without warning has exacerbated the dementia to some degree.
The last 16 months, things have been extremely difficult, and every day is different. We never know how grandad is going to be, if he is going to have a good/ bad day. We have also learnt so much, and learnt that dementia does not present in the typical way you’d think. It is complex and cruel but also a clever disease. It is not just the typical stigma of people forgetting people, forgetting to eat/ drink. Dementia runs much deeper.
How dementia presents for Grandad and caring for him
Whilst Grandad does forget to eat/drink, remember where he’s going or who people are, he forgets how to use the TV remote, turn the TV on and off or use the fire. These are minor issues. He sometimes leaves the front door open and has let people he doesn't know into the house. He takes everything on trust and believes what they say! Mum has persuaded him to have a "ring" doorbell type fitted and a camera at the back, mainly for his safety and peace of mind that she can see who's coming/going and mum will get notifications should he decide to wander away from the house.
Grandad’s now having hallucinations, one the biggest tell-tale signs that it’s progressing, they are becoming more and more vivid and clear each day. The biggest hallucination he has is that grandma is in the house. He will frequently ask us “where’s your mum/gran gone? She was here a minute ago” but because these images are so clear and real in his head, to disagree with a dementia sufferer is wrong, it's a case of pacifying, and/or playing along “she’s just nipped outside” or "she's being a pest now isn't she it’s "risk over benefit", by bending the truth little is less distressing for a dementia person. He frequently sees his old dogs and when leaving the house he makes sure they have room to roam about and are going to be OK.
Using the TV and remote is a daily occurrence for us. He is constantly forgetting how to use it/ how they work, we have therefore tried to simplify things, by only giving him 5 channels and writing down his programmes and the channel numbers on a white board next to his chair. We often get asked how does the TV recognise what number he has pressed, our go to approach is “there is an invisible line at the top of the remote, you press a button and the line appears, it then touches the TV and “tells” it what number to put on” This conversation/ situation can happen on a number of occasions each day.
Of course there are still the behaviours, off moving things/ putting things in different places without him realising he’s doing it. We therefore have to secretly watch what he’s doing/ where he’s putting things as 8/10 the next day we will be asked where something is.
His speech is becoming very mumbled and he no longer talks in clear sentences and we have to pay attention carefully to each topic he is talking about as he will constantly change topics, but keep referring back to each topic later on in the day.
As humans, we are all subject to tiny mini strokes where the heart misses a beat and the blood supply is slow to reach the brain, we don't know we are having them and they can happen to any of us, dementia sufferers are more prone to having strokes, sometimes they can have big ones, sometimes they can have lots of little ones, usually when you see the “decline” in your loved one, the likelihood is they have had a mini stroke, but it’s been mild and goes unnoticed, carrying on with their day. The reason for this, the cells and nerves in the brain have shrunk and die due to a shortage of blood supply,
Despite all the doom and gloom, there are a lot of positives. We have fallen lucky with the fact that the dementia has given grandad a sense of humour, and he is doing things he would never have done previously. He socialises more and happily leaves the house and goes to support groups. He goes to 4 different groups, reacquainted with old and made new friends.
New memories are being made, my current favourite memory, is him having me climbing his apple tree, getting all the apples and then having a competition to see who can throw a rotten apple the furthest.
We are also finding that he is constantly rummaging through the house and finding things we did not know he had, he recently showed us a map of Manchester City Centre from 1875 and 2 completed stamp books from 1942 to the present day.
Whilst we are gaining new memories, the new memories are in a way allowing us to revisit old memories.
Grandad has also developed a mask and will not show people who he’s not comfortable with how he is doing/feeling. He has his constant people who are myself and mum (mainly mum). Mum goes to see grandad during the week and I go at a weekend. Any weekdays mum can’t do, I take over, working depending.
We no longer see this as caring for him anymore, instead we see it as spending time with him and building more memories. Whilst there is the typical stigma off a dementia sufferer forgetting people and forgetting faces, mum and me have fallen fortunate that he still knows who we are and to see his face light up when we walk through the front door is the most heart-warming feeling and the biggest relief ever!
The Memory Walk
On 09/09/2023, I and my 8 year old daughter decided to do the memory walk, in memory of grandads and all dementia sufferers! Dementia is one the UKs biggest killers, and someone is diagnosed with this disease every 3 minutes, sadly there is no cure. It was therefore important to me to raise as much money as possible for research and support, not just for sufferers but for carers and family members who have a loved one with this disease.
Me, being me, thought September would be a great month to do the walk, it wouldn’t be too hot, or cold, but low and behold we had temperatures of 28 degrees plus. However, we did it!!! Our pooch, Charlie Boo joined us too (it wasn’t THAT hot when we left the house!!) we saw some beautiful sceneries, and treated ourselves to some cheeky McFlurry’s when we got our destination. To say it was tiring and hard is an understatement but it was also rewarding, empowering, and something I am going to be doing every year.
Whilst our journey is hard, tiring, heart-breaking, stressful, it’s also empowering and is the driving force behind us to keep going what we possibly can. Mum is an absolute superwoman, we never thought for 1 second we would be going through this journey without gran, but to say mums keeping the water at a high but steady level is an understatement. If anyone needs a rest and recognition it’s this wonderful woman! She is not only looking after grandad, she is also learning more and more about dementia and raising awareness herself by talking about dementia and how it presents!
Personal tribute to grandad
I’m sure you call tell by my story just how much my grandparents mean to me, but to say I am proud of this amazing gentleman is a massive understatement! From finding out he has dementia, to finding his wife of 60 years on the kitchen floor 5 minutes after talking to her upstairs 4 days later, he has not once sat in pity and wallowed. He gets up every day, puts a smile on his face and gets on with his day as best he can. Even with the dementia he still tries to be a grandad, forcing us to eat, drink, not letting us lift a finger if something needs doing.
I am beyond lucky to have him in my life!
Grandad, you are a massive inspiration! Thank you for everything you have done for me, and continue to do. I love you beyond words can describe
Our heartfelt thanks
Firstly, I, mum and our wider family would like to pass on our heartfelt thanks to each and every one of you who has donated. We will be forever in your debt!
Secondly, to Carpenters Group, thank you so much for allowing me to share our story, if this story helps one person within the company recognise the signs of dementia in a loved one and get them the help they need, my goal is complete! If I help more people, even better!
Whilst we might be going through this long, hard journey, my inbox, teams chat, DM‘s on social media is open for anyone who wants a chat, rant, advice, ear to listen to! Please don’t be afraid to reach out!
Please see pictures which show our walk and off grandad!
Ellie, Angie, Ava and Dennis