Callum’s story: ‘Dementia scares the hell out of me.’

Callum ran the Brighton Marathon in remembrance of the woman his Nan once was. And for all the other families affected by dementia. Watch his full story.

Dementia is the biggest health crisis facing society. Someone develops the condition every three minutes.

Thousands of you came together in 2017 to unite against dementia. Whether baking cupcakes, running miles or volunteering your time, we can’t thank you enough for everything you’ve done this year.

Callum is just one of our brilliant supporters. If running the Brighton Marathon back in March wasn’t enough, he raised a whopping £1000 in the process! Here he shares his story and explains why he’s uniting against dementia.

Callum’s story

Dementia scares the hell out of me. It’s hard to imagine anything much worse than losing your memories, your character and your ability to communicate. Everything that makes you, 'you.'

Like many of you, I have a personal connection with dementia. My Nan has a less common and genetic form called Frontotemporal dementia (also known as Pick's Disease/Frontal Lobe dementia).

Unlike Alzheimer's there are no drugs to help stay the effects of this form of dementia, yet.

Fond memories growing up

I am lucky enough to still have my Nan here and hold lots of fantastic memories of her from when I was younger - playing in the garden, making bows and arrows, walks with the dogs and picking pop-peas and raspberries.

I can’t eat a raspberry without being instantly transported back to being with her in the raspberry patch nearly 10 years ago. Her smile sticks in my mind.

She also had a real way with words and self-published two books. Recently, whilst going through her things at her home, we found all sorts of short stories and tit-bits about our entire family. These now treasured pieces of paper capture something she, and we, will unfortunately never have again.

How dementia affects my Nan

As lucky as I am to have her here and hold these wonderful memories, the reality is that my Nan is not the same woman she was 5 years ago and every time I see her, the woman I met last. Unfortunately, that is only going to continue.

At the time I ran the marathon, amongst other things, she was more withdrawn and losing the ability to express herself or have a conversation. Luckily she still had her physical health and loved a hug.

Since then, she has sadly rapidly declined: her health is deteriorating, she is eating and drinking less and less (if at all) and often won’t speak.

When I went to visit her recently, she didn’t recognise me at all. I sat and read a book to her for over an hour (a favourite not too long ago – she used to like the pictures), but she rarely made eye contact with me and didn’t say a word.

That was incredibly tough for me. I can't imagine how difficult the whole situation must be for her.

On top of seeing the effect of this terrible disease on her, it’s also incredibly hard seeing its impact on the rest of my family.

Why did I choose to run the Brighton Marathon?

Callum running at the Brighton Marathon. He looks like he's going strong!

Going strong at the Brighton Marathon When setting up my fundraising page I was asked whether I was running in remembrance of someone. It seemed odd to put my Nan, who is still here. But the reality is that she isn't the same person I grew up knowing and am fortunate enough to remember.

So I ran the marathon in remembrance of the woman my Nan was. She was, and in my mind, still is, a wonderful woman - very loving, incredibly caring, a wordsmith and a filthy cheat when playing Snap!

But I also ran in support of all of those people who provide support and care for someone affected by dementia. And to those who have lost or are losing someone to this dreadful condition.

That’s what got me through the training and the sweltering 26.2 miles.

It was hard. But the sense of achievement I felt when completing the marathon, as well as the generosity of everyone donating in order to be able to raise all the money, was incredible. Needless to say, seeing friends, family and everyone else cheering you on whilst making it around the course on the day is unreal.

Dementia affects so many people. It’s not just my Nan. It’s not just my family. It happens to thousands of people across the UK. If the money I’ve raised can make even the smallest of impact to someone’s life somewhere, then it’s all been worth it.

Fundraise for Alzheimer’s Society

Challenge yourself by taking on one of our many fundraising events and raise money to help fight dementia.

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5 comments

Add your own

Callam very moving story and great achievement in running the marathon to help dementia sufferers.

One thing I don't understand is that the Alzheimer's Society do not allow donations to specific local branches; everything has to be sent to the central body.
My wife wanted to donate money for percussion instruments for the local branch in Barnet when her mother died but she was informed this was not possible.
Also in Sutton when singing for the brain and the memory lane cafe ceased operating, members and carers were not allowed to contribute to mainaining these well loved and popular services.

Dear Mr Stone,

Thank you for getting in touch. You may have seen my other reply to your comment on our Campaigns blog here: https://blog.alzheimers.org.uk/campaigns/autumn-budget-dementia/ If not, this is just to let you know we have passed your message on to Tim McLachlan, our Operations Director for Local Services, who will be in touch with you in the New Year to discuss this in more detail. Thanks again and all the best.

Thanks for your response.

Lets hope the policy is reversed so that local services can be supported by local people.

All the best

Jack

i am 66 knackered and do not like ppl wife has dementia alzheimers mixed so i have been told married 45 yrs +courting,she poos anywhere occ.does not like going to pub which we always have done,i now have no life no help unless i pay loads on wifes £145 pension ie £60 aday i heard.not a natural carer hate poo .i can see only one way out as i do not have alife any more a few hours rest would be great,have a meetiung next week continuing health but doubt getting it,plenty of whisky gets me out of this world.HELP AND NOT IN WEEKS OR MONTHS.

Hello, thank you for getting in touch. We’re so sorry to hear this - it sounds like a difficult time for both you and your wife.

We have some information on paying for care that you might find useful. It is only your wife who pays for her care and if she has less than £23,250 (not including your house if you have one) then the local authority will contribute. If less than £14,250, they will pay for her care. If she has an occupational pension too, only half of that can be taken into her financial assessment as the other half can remain with her husband.

These links provide more information to getting care and how it is paid for. Assessment for care and support in England: http://bit.ly/2nqhDKE Paying for care and support in England: http://bit.ly/2sezVkk

If you ask for a carer’s assessment at the same time as your wife’s needs assessment, you may wish to say that you’re unable or unwilling to continue to care for your wife, and this will affect the care package that is offered.

Secondly, if you’d like extra support or information around continence, your GP can refer your wife to the continence adviser to help. You may also find our Toilet Problems and Continence factsheet helpful: http://bit.ly/2pnipaG

Lastly, if your wife is said not to qualify for NHS Continuing Care, we have a small team of volunteers who can offer advice on her appeal by phone and email if you wish to appeal. Please call our Helpline team on 0300 222 1122 if you would like their help.

Our Helpline team is also on hand if you need any other information, support or advice. You may also find it helpful to visit our online forum 'Talking Point', as other people may have discussed similar issues. You don't have to sign up to search through the forum, so you could just read other peoples' posts and find out about their experiences. The forum can be found at:
http://forum.alzheimers.org.uk

There may also be local Alzheimer’s Society services nearby that can offer face-to-face help, advice and support. Details can be found at: http://www.alzheimers.org.uk/site/scripts/home_info.php?homepageID=428

I do hope this is helpful, please feel free to contact us again if you need any further information or support. Thanks again and all the best.

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