Living With Dementia – Sunday 18th September

Much like the rest of my blog, I am writing this for myself because the wonderful thing about the electronic world we live in is that it’s easy to view the stats of who visits your site and what they do when they are here. With the realisation that this kind of stuff might not interest anyone, but with the knowledge that I enjoy writing and who knows, someone at some point who is going through something similar may happen upon my witterings, I thought I might write something related to my mother’s dementia journey and the affect her illness has had on me and the choices I have made since she gained her diagnosis. Perhaps gained is the wrong word to use in this context as it suggests a gift or provision of some sorts and that is not how my mother’s diagnosis feels to me and it has never been how she has described it. I will certainly use past tense a lot if I ever commit to writing more than one of these entries as mum doesn’t say a lot of anything these days. She is minimally responsive most of the time, and when she is able to respond these days it is through confused ramblings that bear little relevance to any type of formal communication I experience with any other human beings I come in contact with, apart from her fellow traveller’s in the care home. Communicating with the other guys and gals on the top floor of the care home is often interesting, seldom less than challenging and frequently entertaining. Two days ago I was explaining to one of the nurses that it looked like a lot of mum’s clothes were missing, at which point Archie (not his real name) shuffled past in his slippers, corduroy’s, and my mum’s navy Marks & Spencer rain coat. When the nurse highlighted to Archie that she believed he might not be wearing his own clothes, he responded by angrily stating that it was obviously not his coat, because if it had been his coat “I wouldn’t be having the fucking problem’s I am trying to get it buttoned up”. Archie moved on and the nurse followed trying to get Archie to remove the coat as they headed out of the day room and into the corridor. The sad thing is I would love to have mum back at the angry/confused stage Archie is at. While I accept Archie’s version of angry/confused is obviously different from my mum’s, there will be no dementia generalisations on this blog, I recognised some of Archie’s responses in my mum’s recent past. The steadfast insistence that she is fine, or at least would be if every other person in the fucking world would stop behaving like complete tit’s and ceased being confusing. The ability to rationalise every action taken, no matter how ridiculous it may seem. The ability to blame the whole world for even the simplest error, because to admit to these errors would mean admitting that something is clearly going wrong, to be able to think on her feet, react, blame, and move on while at the same time forgetting the entire transaction is taking place thereby exonerating herself from all future responsibility for what is happening in these moments right now. And to be able to get angry at everyone for not just accepting they are wrong, whatever they believe is happening is wrong, because if they are right then she is ill. She has Alzheimer’s. And that can’t be right because she feels fine. What I wouldn’t give now for my mum to be back at the angry/confused stage. It was so recent as well, just a few months ago really, but she started noticing things weren’t right almost 9 years ago, and she got her provisional diagnosis back in 2008. And it’s now 2016. And today when I paid her a visit she couldn’t eat soup, and she couldn’t really speak. Today when I visited her she complained about a sore head, so I helped her from the day room where all the guys and gals on the top floor were having their version of lunch; where Alice and Sadie (not their real names) were playing a weird game which involved Sadie shouting for her mum a lot and Alice threatening Sadie’s hand with a spoon whenever Sadie looked like dragging the salt and pepper shakers off the table and onto the floor. Where Jim rocked back and forward clapping his hands and Julie sipped her soup from a mug like it was juice. Where Norma just sat and stared and Linda wandered around the room smiling. Where the staff members conducted this chaotic symphony in the steadfast, resolute and mostly good-humoured professional manner that is regularly evident at these events. Where I got mum into her room and helped her to lie down on her bed and take her shoes off and cover her with her duvet, and where she started snoring almost immediately. Where I put on Radio 2 and listened as Michael Ball stood in for Elaine Page on Sunday and as I left the room I stopped to check mum was still breathing, and where I didn’t feel guilty at all as the thought crossed my mind that I was only a bit relieved that I could see her chest slowly rising and falling.

 

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