No longer fearful of dementia

no fear 2According 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 emotion as, 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 behaviors 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 most often 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 today, it will have to do!

I used to be very fearful of the symptoms of dementia. No longer is this the case.

The vacant spaces are still happening every day, and more often; standing in the shower wondering what to do, going to the fridge and finding the salt and pepper, half way through a thought, never to find the end. It is a memory loss that is not normal for my age, and with great big vacant spaces. Not remembering being in a girlfriends wedding, or if I have eaten breakfast or dinner, not being able to recall the names of my doctors, the faces of my friends, the names of my children. Big deal, I still woke up today!

This is what I thought might occur when I was 80, but not in my 50’s. Increasing the fear factor used to be the regular discovery there are people, presumably people who have been my friends or are family, who have or are openly saying they don’t believe I have dementia. People who are too pathetic to speak to my face, but instead behind my back.

These days, I have filled my life up with so many meaningful activities and new friends, I no longer have any fear of the changes being caused by dementia.

So what that some abilities have either disappeared, deteriorated, or changed; new ones have taken their place. I have found true meaning and real purpose in my life, have been able to sort out the wood from the trees, am getting better at coping with the lack of humanity in so many humans, and living better with the stigma and discrimination of a diagnosis of dementia.

A long time ago, I made a choice to ignore the Prescribed Disengagement dished out to me at diagnosis, also currently still supported by the health care sector, and am living as well as is humanly possible in spite of dementia. That is not to say I do not occasionally feel fear, weep, or have a truly awful day, but when possible, I ignore the changes, and support them with disAbility strategies and supports.

And when all else fails, I have a truly wonderful BUB.

11 thoughts on “No longer fearful of dementia

  1. Pingback: Let us live better with dementia | Creating life with words: Inspiration, love and truth

  2. Recently I have been thinking about the “elephant in the room” to do with the (still) stigma surrounding dementia. It is one thing to be aware of dementia and another thing to fear it. And where does the stigma come from? From society’s insistence that to live a full life we must all be cognitively 100%. I believe this is a relatively modern idea, perhaps stemming from the increased emphasis on science, evidence etc as opposed to older emphases on inspiration, spirituality, things that cannot be proved. Also there is such an emphasis on conformity before inclusion. We need to widen the scope of our values.

  3. Wonderful Kate. Your words ring true not only for dementia but for anyone who is struggling. Finding peace within themselves by counting their blessings, as you say meaningful activities ..friends …

  4. Reading your post today makes me want to show my friends and work colleagues what it is truly like to have dementia. Especially your paragraph starting ‘ The vacant spaces…’ which I believe can help people understand from a ‘first person’ perspective. You are an inspiration to me and many others.

    • Thanks Mary… and feel free to share with colleagues. I was chatting to someone today, who actually I have a responsibility to speak out while I can, just so those of you without dementia have a better idea of what it is truly like. Of course, me experience is different to others, but hopefully does give some insight.

  5. Hi Kate
    I think nearly everyone with dementia must feel the same, when I read your thoughts it’s like you are reading my mind. And needless to say if all else fails I also have a great husband to back me up.

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