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.

About teentweentoddler

Hi, I am a SAHM to 4. Two teens, a preschooler and a baby. This is where I share some of our ups and downs of life.
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