Life goes on with its ups and downs and you think, ‘I really must write my blog‘. But then you think ‘I better not write that‘. I know that many of you know what I am talking about because it is that moment when you have an urge to share something very close to you but worry that it will cause a problem if others read it. But how to let people know how everyday things affect you otherwise.
For me, living with Alzheimer’s (ALZ), there are things I want to just write because I am at a very early stage still and it may be of use to people knowing even at this stage how it affects me. So, what do I do? My blog is not anonymous in the sense that it has a name, not a random couple of words. Maybe that was my mistake, maybe I should have made it more anonymous. I could have called it something like – ‘Missing A Marble‘ perhaps. I guess it would not have made much difference apart from not being seen as a real person.
There are lots of things that go on in my life where my ALZ or dementia affects me but only in the slightest way. In ways that would make me question why it affects me that way in particular. The type of wondering that lingers in a corner of your mind knowing that you can’t quite put your finger on why you should react that way.
For a while, I have been under some stress at specific times. To all people living with dementia, stress is awful but then stress is awful to everyone you could argue. Why is stress worse for me? When someone is shouting at you and you have no way out, it can make your dementia feel worse. Most people can shout back, hold their own, and stop abuse towards them, and of course, there are many who simply can’t. But, what if you have always been able to deal with angry people and suddenly you can’t? You find yourself trying to diffuse a situation where someone is shouting in your face about nothing in particular, maybe most would find it difficult to do. Not me, I trained three years as a counsellor, I understand how to diffuse situations, can read the body language, can see past the abuse that is vomiting from someone’s mouth.
Now, though as I draw on all my knowledge and experience, all I can come up with is – “la la la la la la” as loud as I can! Worked, but even I realised that it was a bizarre thing to be singing at a time when another person is at their most aggressive.
Next time is different, I can’t cope with being shouted at. The red face thrust at me as the mouth is opening and closing with the most absurd ridiculous noise emanating from it. I start shaking and crying as I call the police…..
I have Alzheimer’s, I don’t need this. Nobody needs this. But, I, cannot cope with it. They should not be abusing me this way knowing I have dementia.
This is what families can do to each other.
I strike back. I will not be overlooked, patted on the head and accused of being “unstable“. I will show you how capable I am. How I can still organise charities to pick up furniture, quotes for house clearance, create timelines, communicate with solicitors, get things moving. Not because I want you to see me being capable, but simply because I have the time and I can do it.
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