Personal Stories: James

June 27, 2017

To be honest, before my mother was diagnosed with Alzheimer’s, I had a very limited understanding of dementia and the impact that it can have on the sufferer or on those closest to them. Although I remain healthy at this time, it is a concern to note that the occurrence of dementia is on the increase and already touches most families at one level or another. It could be my turn or yours one day.

Whilst, it’s heartening to see stories of sufferers who manage somehow to retain their dignity and a reasonable quality of life, from my experience, it would seem that each case is unique and personal. Children's author Terry Pratchett was fortunate enough to be able to continue working almost until the end, but sadly that was not the case for my mother. It was heartbreaking to watch her slow decline with no hope of a positive outcome. That, I suppose, is what motivates me now to write. By identifying issues early, there is a greater chance of stabilising the condition and delaying the inevitable outcome. Unfortunately, denial was an important factor in mum’s story.

Like Pratchett, mum had early onset Alzheimer’s, which is relatively rare. In hindsight, we can now identify events that indicated a problem long before her final diagnosis, probably as early as her mid-fifties. Initially, the family was unaware of mum's condition, because she was outwardly healthy and relied heavily on my father for support with anything that required thought. Being a very traditional married couple, this was somehow not unusual and my father kept his concerns to himself for a very long time.

It was only when dad suffered a debilitating stroke that mum's issues became apparent. My brother and I tried having mum stay with our families, hoping to offer her the care she needed, but although not diagnosed at that time, she was already quite advanced in her condition. Her belongings would mysteriously disappear around the house and she would automatically accuse my then 3-year-old son, not realising, or not wanting to admit, that in fact she had moved them and had simply forgotten. Her short-term memory was already suffering.

The diagnosis process was educational. It seemed to take many months and left us in limbo, not knowing what the verdict would be. There was one notable appointment with a mental health specialist who had the bedside manners of Attila the Hun. Out of the blue, he turned to my mother and in a very patronising voice and asked, “ you feel as though you’re losing your mind?” The poor lady didn’t know what to answer or how to take him. It seemed to give him some perverse pleasure to watch her struggle and left me feeling anger that he could be so thoughtless and so lacking in compassion.

This was a distressing time for all concerned, and we eventually had to face a tough decision with regards to mum’s future. In the end, we sought a place in a care home where she could be well looked after. Although this was far from ideal, we were faced with the choice of failing mum or failing our children because we certainly couldn’t adequately deal with both. We did what I think she herself would have wanted by prioritising the children, who were all of pre-school age. To be clear, dad by this time was completely bed ridden and unable to offer mum any form of support and eventually died just a few years later.

Selecting a care home in itself was not easy and we had to make changes along the way. It was shocking to see how poorly understood the condition is. For homes that lacked proper training or simply lacked sufficient staff, medication seemed to be routinely administered to keep her quiet and as immobile as possible. Eventually, my brother managed to have her admitted to a specialist unit, where things were much better and the medication reduced to a minimum. There is a shortage of such facilities though, so we had to look beyond our immediate area.

In the 10 years that mum lived with the Alzheimer’s diagnosis (15 years in total by my assessment), she went from a healthy, active lady to a shadow occupying a bed permanently. Even towards the end, I had a feeling that she was slipping in and out of an awareness of her circumstances. It was impossible to know though as there was no clear attempt to communicate.

Due to feeding difficulties, mum had some pieces of food in her lungs and eventually contracted pneumonia. An assessment was made that the doctors would not intervene as her quality of life was already so poor. The end was close and morphine was administered whilst she drowned on her own fluids. I say this not to upset readers but to make them question the logic of a society that would euthanise a dog without a second thought in order to avoid suffering, but would not offer the same kindness to a human being. The very fact that intervention is possible and has been ruled-out is in itself a conscious act. Why then cause unnecessary suffering if a decision has been made? There is no question in my mind, that euthanasia should be permitted in such cases. Even within my family though, my opinion is contested so I am not hopeful of any change in legislation in my lifetime.

If the symptoms had been spotted at an earlier stage, mum's condition could probably have been slowed, allowing her a few more years of independence. I’m still not sure why dad didn’t raise the alarm much earlier, but I suppose, it’s rather like looking in the mirror every day; we don’t notice the gradual change in ourselves as much as we notice the changes in other people. Being so close, perhaps he was not best placed to admit that something wasn’t right; a sense of loyalty somehow or fear of her being taken away.

Openness is key in helping others to realise that they are not alone in their situation and that there is a lot of support if you care to look. Be honest with yourself and those around you. Most people seem to be able to talk about being diagnosed with cancer, but somehow there is a stigma associated with mental illness, which keeps people form putting up their hand. I hope by sharing our story that it may inspire someone out there to seek advice. There is no shame in asking for help or in contracting the condition. It’s simply an attitude of mind. Put your pride to one side and start to face the fact that there may be an issue. Buy yourself some more time by acting sooner rather than later.

Our family’s story is by no means unique. I met a great guy who had served in the RAF as a Spitfire pilot during WW2 and went on to build a well respected hotel business in peacetime. Dementia does not discriminate though; it can strike anyone, however much in control of his or her life they were previously. It can even affect children.

There are various theories about how the condition occurs and I have heard aluminium, diet and mental inactivity all being blamed as potential agents. As a non-scientific person though, I see it from a different perspective. The dramatic increase must be attributed to something, and there can be only 2 explanations that make sense to me. First would be diagnosis. Until you have a peg on which to hang things, its difficult to gather information, so there is a possibility that dementia has always been a problem of similar proportions but we have just become better at identifying it. I don’t happen to think that’s the case.

As the disease is not transmitted between humans and as far as I am aware there is no evidence of it being hereditary, there is only one further potential underlying cause, which is likely to be environmental. A change in our environment is the only logical explanation for such a large number of unrelated people becoming affected. Looking at a graph on the occurrence of dementia, it looks to me like a classic “hockey-stick”. There is an uptick around the time of the WW1, when nerve gas and other nasty substances were used but there is a sustained and much more violent increase which seems to have started in the mid-sixties and continues until today.

Viewed in isolation, it’s difficult to draw conclusions from such a chart, but when you overlay information about the reduced fertility in men, increase levels of heart disease, the introduction of fluoride into the water system and the wide adoption of plastic, you start to build a picture that we may simply be poisoning ourselves.

Fluoride in water is sold to us consumers as a means of improving our dental health, which studies have shown to be untrue. A growing body of evidence reasonably indicates that fluoridated water, in addition to other sources of daily fluoride exposure, can cause or contribute to a range of serious effects, including arthritis, damage to the developing brain, reduced thyroid function, amongst other things. At the end of the day, you can live without teeth and given the choice of a healthy heart and mind, but no teeth, that is the option I would choose as the other options are just too terrible. My opinion though is not researched. It is simply my instinctive feeling that may explain how dementia has become a plague of such immense proportions. Blood sampling of a large enough group could well show common factors that would help to determine that there is a toxic element to the disease. As I have no qualification that would enable me to research this for myself, I will leave that investigation to someone better qualified.

By: James

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