Living with Lewy Bodies Dementia (or why I want my Mum to die)

Hello. This is a very personal and emotional post written by my Sister in law. Please read and help her raise awareness, thank you.

 

Not every day…just on those days when the nurses have held her head under water because they thought that she’d murdered the three, beautiful babies staying on the ward; or the day that she identified me and James after we were killed in a car crash; or even just those days when she’s fallen over so many times because she can’t see where the chair is and she’s covered in bruises and feels stupid and useless and is living in constant fear.

On other days, my Mum makes us smile when she explains how the night before she’d won a motorcycle rally, despite only travelling at 20 miles an hour; or how she’d won the best saleswoman prize at ‘Mainly for Men'; or how she’d spent a lovely afternoon on the bus with her mate Anne, eating sausage rolls and looking out from the hospital rooftops. On these days Mum smiles with us, proud of her achievements.

On these days, I look forward to seeing what miracles the Alzeihmer’s drugs have to offer my beautiful, brave Mum.

Our story started nearly four years ago. Mum had been having a few trips and stumbles and complained that the ground was swaying beneath her feet. Opticians and doctors couldn’t find anything wrong with her eyes. Nobody thought that it might be her brain.

Then came the anxiety, depression and tremors, for which she was prescribed medication, although this seemed to have very little effect on her symptoms.

By October 2013, my Mum was reluctant to leave home, craving constant visits and phone calls for reassurance. In December of that year, my Mum had her first hallucination. Because she hadn’t been sleeping at night, doctors passed this off as a daydream. Some days my Mum seemed fine, at other times she was confused. Some days she’d make a lovely cuppa, others she was putting hot water directly into the coffee jar.

It’s heartbreaking (and I’m not sure whether we’ll ever really forgive ourselves) when I think that my brother and I questioned whether she was ‘attention seeking’ – after all, she could pass all the memory tests. She wasn’t. Lewy Bodies doesn’t affect memory until the later stages of the disease. Unlike other forms of dementia, Lewy Bodies doesn’t even show up on a brain scan. Diagnosis relies on doctors listening carefully to patients’ and carers’ personal stories.

If the doctors had listened carefully to our story, and took into account all her symptoms – her tremors; periods of confusion followed by periods of lucidity; her inability to sleep at night; depression; visual/spatial difficulties; diminishing reasoning skills (she couldn’t use the microwave, kept getting lost in her one-bedroom flat and had a tendency to put the toaster on the kettle stand when she wanted to make a drink) and her hallucinations – they may have considered the Lewy Bodies that were invading her brain. If this had been considered 15 months ago, my Mum (with the help of medication) might have been able to hold off the devastating effects of this disease, while she could still share a fulfilling life with us, and while she was still ‘Mum’ as we’ve always known her.

These ‘what ifs’ are no use to us now. My Mum certainly can’t make a cup of tea, she can’t even turn on the tap. She forgets why she has to eat and how to feed herself. She’ll probably need 24 hour care for the rest of her life, whether that’s years, or the months that we’ve been told we might need to prepare for.

I am bitter. I am angry. It was because I picked up, and read, a leaflet in hospital (where doctors kept declaring my Mum ‘medically fit’) that Lewy Bodies Dementia was finally considered. You might be thinking that this is an incredibly rare form of dementia – it’s not. It accounts for approximately 10% of dementia cases, although I admit that it is unusual in a person of my Mum’s age (66).

Although I do want to speak to the dementia specialists and Mum’s psychiatrist about why they never suspected that she had Lewy Bodies, this is not about censuring the care that she received. My hopes are simple – that medication will make my Mum less frightened and we can enjoy the time we’ve got left together, but also that other people are informed about Lewy Bodies and its strange set of symptoms, just in case they ever face something similar.

Please follow the link below for more information on Lewy Bodies, share the information regarding its symptoms and, if you can, please donate to the fund for research into this disease.

Thank you.

 

http://www.lewybody.org/

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The Dream Snatcher by Abi Elphinstone

Dream Snatcher trail

Twelve-year-old Molly Pecksniff wakes one night in the middle of the forest, lured there by a recurring nightmare – the one with the drums and the rattles and the masks. The Dreamsnatcher is waiting. He has already taken her dreams and now he wants her life. Because Moll is more important than she knows…The Oracle Bones foretold that she and Gryff, a wildcat that has always been by her side, are the only ones who can fight back against the Dreamsnatcher’s dark magic. Suddenly everything is at stake, and Moll is drawn into a world full of secrets, magic and adventure. Perfect for fans of J.K. Rowling, Michelle Harrison and Eva Ibbotson.

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I loved this book! It has a perfect combination of characters, humour, magic and action! It’s a really easy book to read, only taking me a couple of days. It grips you on every chapter and makes you want to read on. I loved the storyline. In all honestly I was thinking this was going to be another one that my tween enjoyed and not really for me, but I really enjoyed it! Talking of the tween, he also read it and enjoyed it.

Tween: I liked this book. I thought it would be more for girls when I looked a the cover but it was ok. It didn’t take me long to read, about 3 days. I like the magic and action in it and the dream snatcher is my favourite character. I would read it again.

Both myself and tween rate it a 4/5

 

This is not a sponsored post. I was sent this book for the purposes of this review butall words and opinions are my own (and tweens) 

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Challenge Set- Results!

So at the beginning of February I set myself a challenge to cut out fizzy drinks and crisps. You can see that post here 

So it is now the beginning of March and I have my results. I would be lying if I said I was really good and completely stuck to it, because I didn’t BUT I was a whole lot better that before. I was eating crisps and drinking fizzy drinks every day (and not just the one can and one packet either) but this month I didn’t buy any crisps with my weekly shops, I only had some when I treated myself at the shop (three times) and I drank pop when I had a KFC and McDonalds, because I just forgot. I also had a couple of cans.

So OK it’s not going to show you a true reading of cutting out them both all together, but if these are the results of drastically cutting back, imagine the results if I had cut them out!

(Note: I am wearing different outfits each week, but you can get the general idea)

WEEK ONE 

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I was kind of rubbish this week because I had a packet of crisps and 2 can’s of fizzy pop the second day :) I did walk Harry to and from Nursery twice a week and I also walked into town with him.

WEEK TWO

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This week I was pretty good. Walking lots again and I don’t think I had any crisps or pop. I think this week is the biggest change. I felt like I had lost some and I think you can see I had.

 

WEEK THREE

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This was a bad week. It was half term so I didn’t do the nursery run. We had takeaways so I ate lots of rubbish including about 3 packs of crisps. I was good with fizzy pop though because I opted for water on our car journey to my sisters and at the restaurant. And I had juice at McDonald’s. I think it clearly shows in the photo how cutting out those nursery runs does.

 

WEEK FOUR

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This was a good week. I have been back to cutting out the crisps and fizzy pop, having none. And I was back to walking to Nursery and back. We also had a massive walk to town on Monday (choosing the long way). I was really poorly all week with flu so that helped the lack of eating but I still did all that walking. I don’t think I lost a huge amount this week, but you can see a change in my face.

 

 

So there you have it! I’m disappointed that I couldn’t completely stick to it but I am proud of myself for cutting them out drastically. And now I have seen with my eyes what a difference it can make, it has definitely made me more aware,  And that it’s really easily achievable to lose weight and get healthy with just a few small changes. I really don’t have any excuse not to now.

 

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Silent Sunday 



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Saturday is caption day!

ChelseaMamma
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Word of the week

UNWELL! 

Yes I know, a boring word, but very fitting. I have been so poorly since Monday evening with flu. I’ve been unable to eat, sleep, move and look after the kids. I haven’t even been on any social media all week and this is my first blog post of the week. It just hit me and wiped me out :( 

The teen has also been off school because of a bladder infection and sore throat, she’s struggled to get anything down. 

The tween and toddler have been a bit off but not enough to be off school. 

My poor OH has been fantastic though. He works nights, but he has stayed up in the morning so I got a rest, had around 5 hours sleep (not enough) and then got up and let me go to bed. He’s definitely a keeper! 

The Reading Residence
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Silent Sunday

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