According to Wikipedia, “fear is a distressing negative sensation induced by a perceived threat. It is a basic survival mechanism occurring in response to a specific stimulus, such as pain or the threat of danger. In short, fear is the ability to recognise danger leading to an urge to confront it or flee from it (also known as the fight or flight response) but in extreme cases of fear a freeze or paralysis response is possible. Some psychologists have suggested that fear belongs to a small set of basic or innate emotions, including joy, sadness and anger. Fear should be distinguished from the related emotional state of anxiety, which typically occurs without any certain or immediate external threat. Additionally, fear is frequently related to the specific behaviours of escape and avoidance, whereas anxiety is the result of threats which are perceived to be uncontrollable or unavoidable. It is worth noting that fear almost always relates to future events, such as worsening of a situation, or continuation of a situation that is unacceptable. Fear can also be an instant reaction to something presently happening. Fear is an emotion that is pre-programmed into all animals and people as an instinctual response to potential danger.” Wikipedia may not be the greatest resource, but for now, it will have to do!

Earlier this week I felt the inner quandary of one bloggers questioning, how to keep up with the motivation, energy and stories to continue to blog each day! Perhaps it was in the stars or is simply a case of continued synchronicity amongst my blogging community as I was feeling the same. Anyway, thank you to the bloggers who have pushed and gently cajoled me to keep going. Stopping for a few days might in fact be a subtle catalyst to stop forever, and so I decided to keep going. I also felt fear about blogging as I’ve been reminded that blogging is out there for the world to see, and might be fraught with danger. Danger of personal security, danger of people who dispute your ideas or don’t like your creative work, and in my particular case, the risk of people who don’t believe I have dementia because I choose to publicly share that part of my journey, using ways that are more commonly found to be deficit in people with dementia. It has been suggested that because I blog so openly about it, I have a responsibility to prove my authenticity, or at least that there may be people out there who won’t believe me until I do. I felt rather traumatised by the reminder of this, and consequently had been thinking about a fight or flight response, one which might have stopped me blogging. Instead I have decided I will use it to motivate me to write more, to record in greater detail what is happening, and to share in better detail about how the diagnosis was determined. This will take time, but hopefully will offer a deeper understanding.

Increasing the fear factor is the people who know me, who are saying they don’t believe I have dementia; people who haven’t spoken to me, but instead talk about their doubts behind my back. I have been helped to understand this was not meant maliciously or done with intent to slander, but it remains hurtful rather than helpful. One way of overcoming this is to open my home and filing cupboard up to them, or invite them to attend my doctor’s appointments with me. The doubters are welcome to do this if they wish, but if they choose not to come to me about it, then I think it would be best they remember the W.A.I.T. principle. Their behaviour, whilst it may be meant with good intentions, merely increases my fear factor and undermines my ability to positively live with this hideous disease; it also greatly upsets my family, who live with this anxiety too.

Adding to my load, just lately I have become more afraid of the increasing symptoms of dementia. The vacant spaces are now with me more often every day, even though most people don’t see them; standing in the shower wondering what to do, going to the fridge and finding the kettle, half way through a thought, never to find the end. It is memory loss that is not normal for my age, but rather one that leaves great big vacant spaces in my inner world. Not remembering being in a girlfriends wedding, sometimes not knowing if I have eaten breakfast or dinner, or not being able to recall the names of my doctors, the faces of my friends, the names of my children, when I see these people regularly, some even every day. Wondering how to put on my underpants or how to do up the laces on my shoes, struggling with hand writing, wondering when to laugh or cry, confusing my deodorant for my hairspray which merely gives me sticky hair and funny smelling armpits; these are all a significant pain in the arse and are happening more often, causing a renewed fear of the future. They are the sorts of things I thought might occur when I was 80, but not at the age of 53.

The few days we had in Kangaroo Island were deliciously relaxed, but on the other side of that happiness pill, being relaxed highlighted the symptoms of my dementia. This has scared my husband and me a little, bringing a renewed feeling of trepidation about our future. How long will I be able to fight and publicly hide the symptoms, will my efforts eventually be in vain? The increased concentration and focus required for me to speak now means when I relax, my word and name finding difficulty is more evident. My language when I speak is becoming more generic, as the struggle to name people and things is more difficult. At home during our shared family dinners where I am also more relaxed, it is like playing charades as the boys and my husband keep guessing what a particular ‘thing’ is. Charades without clues, but made simpler by the fact they know me well which makes their guessing a little easier. One friend who had younger onset Alzheimer’s hid her symptoms for many years, and then at the age of 62, she went straight to end stage dementia. We had been in a coffee group sharing time together for years, and my husband and I didn’t even know she had Alzheimer’s. She suddenly stopped knowing any of her family or friends, and the symptoms she had obviously been fighting and hiding for so long, simply appeared in full. It was devastating for her husband, children, grandchildren and close friends when this happened during a family celebration, and she was moved quickly from living at home into a secure dementia unit of a public hospital.

It’s okay with me that I need to justify the diagnosis, but sad that living with it well is not seen as more positive. If I had sustained brain injury through a car accident, and was doing really well with rehabilitation, my success would be applauded and explored, rather than the injury questioned. And, if my success was significantly greater than others with a similar brain injury, I’m pretty sure others would want to know what I was doing differently to bring about a more positive result. In the mean time, I will work on combating the fear I have of dementia and the increasing vacant spaces, and any future hurtful words of others. I have decided it is not to be a fight or flight response, but one where I will continue to speak out and continue blogging, rather than remain silenced by fear. And, I will work so much harder on applying the W.A.I.T. principle to myself as realise I too have been at fault of speaking about others behind their backs, words that were not meant to be malicious or to be hurtful, but thoughtless just the same.

Of course this doubt has also made me question once again, the diagnosis of dementia, as there are many days when we wonder is it true. For example, late in 2009 I was told I had Motor Neurone Disease (MND), and saw various specialists about it including attending the MND clinic at the Repatriation Hospital (I was prescribed Riluzole at the time), and I was even booked in for a gastric feeding tube to be inserted (PEG) at the Royal Adelaide Hospital, but then had a fall and needed a L4/5 discectomy, which made me defer the PEG. I have not really progressed with the MND type symptoms, although do still have fesiculations (seen by one specialist even last Tuesday) and still cannot swallow many things, plus increasing weakness in limbs. I was told last week when I saw the physician, “the MND is not ‘on the table’, but it seems is ‘not off the table’ completely either.” THANKFULLY things have not progressed. I was also told “it could be some other neurological but currently undiagnosable condition, or MND, but I have no idea!!!” It is often difficult living with such uncertainty, and has been very challenging accepting a ‘confirmed diagnosis’, that has later been put back into the, we have no idea basket. Being told I had 6-24 months to live late 2009 by numerous ‘medical specialists’, told to get my Will, POG, POA and Medical Directives paperwork in order, and having palliative care staff visit our home to discuss my end of life issues with my family was very traumatic for us all, and has been a huge emotional roller coaster. Unfortunately it has possibly been part of what has made some people sceptical. A MND health care professional said last week after hearing the words from my specialist, “Kate how confusing is that!! I imagine I would face the challenges much the same as you are – taking it as it comes although how do you cope with the uncertainty of it all?”

There are many moments in most days I am reeling from it all, and the only way I have been able to rise above it is to write about it. Real support for people with dementia is minimal, especially age appropriate support for those with younger onset dementia, and I hope by speaking out I can change perceptions and break down some of the negative barriers and myths and thereby improve service provision. Fighting dementia, and winning, increases the doubters which definitely ensure both sides of the coin are seen. The doubters, especially those who talk behind my back, increase the difficulties of living with a disease that is a terminal illness. Those of us diagnosed with dementia have much to fear and worry about, and therefore can’t afford to think about what others might think or say as we just have to get on with the business of living in the best way we can.