In three weeks I will be taking part in the Memory Walk in Brighton to raise money for Alzheimer’s Society and to raise awareness for the disease. If you’d like to sponsor me, you can do so here. But this isn’t just a post begging for money, I also wanted to talk about why I’m doing the walk and how Alzheimer’s has been a part of my life for almost ten years.
Dementia is the broad term for a persistent disorder of the mental processes that are caused by brain disease, like Alzheimer’s disease, or a brain injury and that causes memory problems, personality changes and impaired reasoning.
My grandad got diagnosed with dementia when I was fifteen. While there had been various instances that we were all noticing leading up to the diagnosis, when we look back now we can see that things hadn’t been right years before but no doctor or anyone had said there was anything wrong. Looking back, my grandad had a couple of strokes when I was very young, only about six or seven, and when he was in the hospital bed he’d say there was a bird sitting on the end of it or there were rabbits running around the ward. We all found it funny and as he was otherwise fine and had no physical problems from the stroke we all thought nothing of it. Now we think that that might have been a sign of dementia but then we were unaware that such things as dementia and Alzheimer’s even existed.
If there’s one thing I’ve noticed over the past ten years is that dementia and Alzheimer’s are words used much more frequently, before my granddad was actually diagnosed doctors just said it was a man getting old.
When my gran struggled to cope with my grandad, he came to live with me and my mum (his daughter) while my gran sold their house to move closer to us. One of the main things my grandad would think was that he was staying in a B&B and he would think that my mum was in fact the owner of the B&B. One day, mum was at work and I had to phone her up because grandad had brought down an empty bottle of bleach that had been left in his bathroom and was very anxious about it – turned out mum had cleaned the bathroom but had forgotten to take the empty bottle out. He believed that “the woman that owned the place” had put bleach into his shampoo bottles and was trying to kill him. It took a while for me to calm him down and it was probably a distressing thing for a fifteen-year-old to deal with – I can’t really remember to be honest. I remember the incident happening, just not what I felt about it (it’s weird how that happens).
The thing with dementia is, the person who is suffering from it 100% believes what they’re saying and seeing is true. If you correct them because you know they are wrong, like if they pick up a mug and say what’s in their hands is a hairbrush and you say no it isn’t, it’s a mug, you will end up having a row about it. They believe what they believe and even if they are wrong, sometimes it is best to go along with it so you don’t cause any arguments.
Eventually my grandad went into a nursing home. I visited him only once, mainly because when I visited him he knew who I was and called me my own name (something he hadn’t done to my mum for a while by that point) and I wanted to remember him, knowing who I was. My gran wouldn’t visit him that often either but my mum would go multiple times a week. Towards the end he didn’t know who she was but was quite happy and capable to talk to her about things in the past. That’s one of the kind of amazing things about dementia, mum learnt more about her father and his childhood through talking to him then, than she had through decades of knowing him.
My grandad died about seven years ago. I can never remember the actual date but I do remember it was a Saturday because he died in the early hours of a Saturday morning, mum and gran went to the hospital to see him, and I had a Saturday job and mum didn’t tell me he’d died until I got home from work. I was a bit mad at her from keeping it from me and remember calling one of my best friends in tears. It’s funny how you remember certain things from a big event.
With my grandad, I missed a lot of the bad stuff. I was young so my mum and gran would try to keep the worst away from me while still being honest and my mum was the one who really saw her dad deteriorate and fade away before her eyes. Now though, with my gran I’m an adult and so feel more responsible to help her and to help my mum with her.
About four years ago my gran got diagnosed with a form of dementia. We believe hers came about after a routine operation which went perfectly well but then while she was waiting to be discharged she drank a lot of water and almost killed her kidney’s. Her brain was starved of oxygen for a while and since then she’s had some problems with her memory and her speech. She’s nowhere near as bad as my grandad was and because me and mum have already lived with being around someone with dementia we are a lot better at dealing with it and helping her.
Now we know not to argue with her (something my mum finds harder than myself), while my gran isn’t seeing things she often forgets a lot of things or will say we haven’t told her something when we did days ago. I tend to agree with everything she says, even if I know I told her I was going out on Friday or whatever it was, but she’s acting like it’s the first time I shared this information I’ll just roll with it.
She gets her words wrong a lot. Her problem is that she knows what word she wants to say, she can visualise the thing and can even describe it a bit but can’t say the actual word. She’s said that she wants help with that so if she’s talking to us and we can figure out what word she’s maybe trying to say, we suggest it and then it’s a bit like trial and error until between us we get the right word.
A part from that my gran is a fit and capable 80-odd year old. She still lives on her own (about ten minutes away from us so we’re never far away if she needs something) and can cook and clean and look after herself. Sometimes mum helps her with paperwork for stuff to do with her home or the bank but everything else she can do for herself. She loves to read, has a tablet which she uses every day and she does her yoga on the Wii Fit.
It’s an experience having people in your family with dementia or Alzheimer’s. You learn to be calmer and more patient and you certainly end up with a bit of a dark sense of humour – or at least me and my mum have a weird sense of humour about it all. It sometimes is hard and frustrating and upsetting and you have to take a step back from it all. You never want to see someone you love regress or become someone that isn’t them but nowadays Alzheimer’s and dementia is becoming more and more common, especially because we as a people are living longer.
The Alzheimer’s Society provides support and information for both those suffering and those caring for someone with the disease as well as funding medical and social research into the disease and its effects. It’s important work because like I said, we are all living longer so there’s a chance that we or someone we care about will end up suffering with the disease.
The Memory Walk I’m doing in Brighton on 8th October is 7km long and I’ll be walking it with my mum and we’re borrowing our friends dog Trixie the Irish Terrier as well. If you do want to donate money to the cause and to our efforts, you can do so here. We’ve raised over £500, more than we aimed for – our first goal was £200 – so now we’ve raised the target to £1,000. It would be amazing to achieve it but all I really wanted to achieve by doing this walk is to make more people aware of Alzheimer’s and dementia and how it not only affects the person with the disease but everyone around them too. This is what this post is about. I don’t really post much personal stuff here but I just wanted to show the human side of dementia and share my story.
I hope this has helped you understand the disease and the repercussions of it a little more than you maybe did before. If you have any questions I’ll do my best to answer them. I’m by no means an expert and can only really comment on my own experiences as dementia effects everyone differently.