The world is not what it seems…..

Dementia Everyday

It’s been a while since I have written anything relating to my Mum, not because nothing has been happening, but more because of several other factors which have seemed to get in the way. I have been busy completing my accreditation for BABCP, and I really couldn’t justify writing blog posts while I had other documents demanding my attention. I also have been running a lot to raise money for my work with Addictions Support & Counselling (ASC) and Forth Valley Recovery Community. Other reasons for not writing range from spending more time doing fun stuff with my wife, learning how to play in a band again and playing a live show with the mighty Escobar 9, to simple things like reading more. If I am being honest, the relentless, brutal drag of continual decline can be extremely draining. I thought writing about my Mum’s condition would help me, but recently even the thought of capturing some of what has been going on has just been too much. I have to catch myself here, “even the thought of capturing……..” If one of my clients or service users said something like that to me during a session, I would be very interested in following THAT up.

Anyway, the point of these blog posts is not to look at how I cope with my Mum’s dementia, or what strategies/interventions I could use to feel differently about my Mum’s dementia. The point of these blog posts is for me to describe what it’s like for me, no more, no less.

Prior to xmas it was decided that some of mum’s medication would be altered, particularly an anti-psychotic drug she takes which among other things helps to reduce the impact of her petit mal seizures. The drug seems to work as she hasn’t had an episode for some time, but due to the nature of her pathology the doctors are always attempting to reduce the dosage because there can be an elevated risk of side effects. These are noble reasons, but having been through this before I guessed that the past would be prologue and what would happen is that when mum’s anti-psychotic medication was reduced, she would begin hallucinating more and enter a phase of delirium. The doctors believed it was worth the risk, I didn’t but as I am not a doctor, and as I am a believer in evidence based practice, I listened to the medical advice and agreed that it was worth reducing the dosage. Within 4 weeks I could tell mum’s hallucinations where becoming more regular and more acute. I highlighted this to the nursing staff at the care home and continued to highlight this to them on a regular basis. Eventually, when her symptoms became so obvious it was impossible to ignore they called in the CPN, who in turn called in the consultant. Everyone agreed that the dose would be increased back to the previous levels. Less than a week after the decision was made, and before the change in the prescription had been implemented, mum picked up an infection and entered a delirious, psychotic phase. She is currently in Glasgow Royal Infirmary being treated.

So once again we enter a period of inpatient treatment as an intervention to attempt to balance the chemicals in my mum’s body to allow her enough peace to leave hospital and get back to the care home so they can manage her gradual decline leading to the inevitable complete imbalance of chemicals and functionality of her body. If it sounds counter-intuitive, it’s because it is.

Many years ago, in what feels like a past life now, I used to use drugs. I was very fond of hallucinogens and had incredible experiences while tripping. As I sat with my sister in the emergency receiving ward of the Royal Infirmary last night, watching mum run through her entire range of ever more bizarre exhortations, verbalisations, hallucinations and emotional outpourings, I considered the fact that I had paid money in the past to gain experiences like this. The difference being that I was paying money to somehow feel more connected to myself, others, and the universe by chemically altering my perspective. Watching my mum, it was apparent I was watching as the chemicals and neurotransmissions in her brain attempted to piece together her experience of how her world is, or should be. But as those pesky plaques clump together and block the normal transmission/reception process in her brain, it appeared to me everything was connecting in the wrong order, providing nonsense outcomes. Her world is no longer how she perceives it; it is a fractured glimpse of a series of interconnected and disconnected experiences, some real, some pieced together from what’s left of her memory.

As she grabs her light blue hospital issue blanket, she can feel what it might be. She can feel the pressure of her fingers on the material, she can sense something is in her hand. But the hospital bed is not a bed, and she is not 68. She is 16 years old, and she should be in work, and she is worried that her mum is nowhere near her. And she really needs her mum to be there to tell her that everything will be alright.


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