October 2014 – Handbagwarrior: Dementia and me

Recently I felt anxious, not for any particular reason but for its own sake. Alzheimer’s anxiety? This is not the first time I have experienced it but let me explain what I mean.

Back in the 70’s there was a slapstick program called ‘Some Mother’s do Ave em’ (1973 – 1978) about a character called Frank Spencer, his young wife Betty and their baby. Frank Spencer was played by Michael Crawford, his wife Michele Dotrice. The character of Frank was accident prone and was constantly destroying things, his tolerant wife would just sigh and say ‘Oh Frank” in a wistful way. He appeared so clumsy but was so innocent as he managed to get himself into another scrape whilst looking for a job. I identified with him, being a ‘clumsy’ child myself (through dyspraxia) but instead of gaining sympathy in my clear lack of bodily coordination I would get a verbal and physical chastisement. Yes, this explains why slapstick comedy makes me anxious but does not match my experience of anxiety with some everyday things and events.

These bouts of anxiety comes and goes, but when it comes it affects me totally. I wake in the morning with my head pounding, the muscles in my face taut and tense, pain completely engulfing one side of my head and face, the right side. I am in so much pain I feel sick; migraine maybe, but not every single day, so no. I try to relax my face easing the pain in my muscles being screwed tight. Of course I have asked the doctors over the past few years why I get this pain in my head, it’s not normal is it, but so far no one has ever tried to find out why. I think this is because I seem to have other things not quite right and so they focus on those first and never get round to sorting out the pain in my head. At this point noise; sounds outside, inside, talking, bangings etc all make me feel more anxious and make me want block my ears.

I digress, because this is about being anxious. Lately as I say, there are certain TV commercials that make me feel very anxious watching them. At present there is a commercial on television about an energy company, showing an orang-utan walking through streets of people, looking through shop and office windows, at light bulbs and people being together. There is a blank expression on this orang-utans face: absolutely nothing. What do I see when I watch this commercial? I see the pain of an ape being alone in a strange place, his environment destroyed to provide something shallow and artificial for humans. There are no other apes around, there are no trees just streets, buildings and lots of artificial light, he is lost and there is nothing left for him. The last shot is of him is swinging on a street lamp, then it cuts to the name of the Energy company. All the while I am watching this I feel anxiety building as I see all hope slipping away for the animal. It builds so that it makes me want to roar in pain. This is not the only commercial to affect me so physically and all are seemingly innocuous.

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People without patience getting visibly frustrated also makes me anxious, it doesn’t matter if they are throwing things about in irritation, verbally expressing their frustration, impatience on the road driving, or waiting their turn in a queue and it doesn’t matter who it is. My anxiety builds silently until I want to shout for it to stop, stop, stop! At these times I need calm and silence, so I silently withdraw into myself like a Buddhist monk in meditation.

Seemingly small things make me anxious and just know some inward silence, blocking out the world helps.

This all sounds quite dramatic but in reality these thoughts are well worn and fleeting as I activate my strategies to focus on something else and writing helps, even if it is about being anxious. I try to get rid of all anxiety as soon as possible and peace resumes inside my head.

And breathe…..and relax…….

Current research shows that there is a possible link between the loss of the sense of smell and death perhaps within five years. http://www.theguardian.com/science/neurophilosophy/2014/oct/01/your-nose-knows-death-is-imminent The theory is that when the brain is no longer able to process smells that it is possible that death can occur within five years. There is no single cause of death found in the link. The diminishing sense of smell is something that is one of the many symptoms in dementia.

I first remember a problem with my sense of smell was when I was about 14 years old.
I was home ill from school and was on the sofa, it was a wet day and my mother had draped some washing to dry on the large square fireguard surrounding the hearth. On it was my older sisters new twin-set that my mother had bought her to wear in her first job. My mother came into the room and started shouting at me, ‘couldn’t I smell the scorching?’; actually no I couldn’t. The light grey twin-set now had yellow scorch marks over the sides facing the fire.
From then on I noticed my faulty sense of smell: a lack of smell for some things, not being able to identify some, and over sensitivity for others.

When I was 18 a factory next door to where I was working had a problem with chemicals they were using and the smell of it was making me vomit throughout the day. I was the only one who had this reaction to the smell and investigations by the Public Health Inspector (who happened to be my father!) concluded that Napthalene was the chemical and that their chimney needed to be raised.

Then at one workplace in my 40/50’s the perfume ‘Vanilla’ worn by a work colleague, (which one I don’t know but it is one of the more expensive fragrances), would make my nose bleed. When women lust after the current ‘must have’ perfume to wear, I just sniff and grimace wondering why they all smell badly of soap, or compost heaps! The brain is instrumental in interpreting what the olfactory organ presents it, and it appears that mine has always been a bit ‘damaged’ in some way.

The smell of food; bacon frying, pizza, roast chicken, fresh strawberries or whatever our personal favourites are all have an effect on our brain when we smell them. You smell something wonderful like freshly baked bread and coffee and your brain processes that with perhaps memories, ideas and hunger. You can imagine the taste, the satiated feelings of being fed, but for me smells of food did not appear to trigger anything, especially not hunger. I can honestly say that from a very young age I have never felt hungry. Food was not something I enjoyed, eating was something that you had to do each day. I remember as a child never wanting to eat, crying as I sat at the large square dark oak dining table with thick barley twist legs that I loved polishing as I sat underneath. I was not allowed to get down unless I ate something and so I sat seemingly alone for hours, crying not wanting to eat the black cabbage that had been cooked in the pressure cooker for 20 minutes until it was bitter. As a baby I would not eat and no-one knew why; this I was told by my mother who said it accusingly as if I was wilfully starving myself to make her life a misery.

So now I read about Alzheimer’s and how it affects the brain, I read about different symptoms that show a cognitive decline consistent with the disease. It is hard not to try and fit your own ‘disabilities’ into the pattern that combines towards early Alzheimer’s and as I look back at these anomalies and hear other people living with dementia talk about when they first noticed these ‘symptoms’ as they have got older, I am transported back to childhood to a time when my mother was hitting me round the head with daily regularity (a clip round the ear is often spoken of in jest nowadays).

One of the first things I noticed when I started to take Rivastigmene as prescribed for me for my Alzheimer’s, was how my sense of smell appeared to be awakened. I could walk past cafe and the smell of food made me feel ‘hungry’. Now Iunderstood what others experience with the aroma of food, however eating the food does not stop the ‘hungry’ experience so that I am not satiated when I eat. What I now experience is the smell of food triggering a notion of enjoyment of eating, and a connection between enjoying the 102493883 smell and the taste.