Loyalty, dementia and giving a damn!

photoGiving a shit is really what I’d have liked to used in the title, but I was trying not to be rude… Oh well, I’ve now failed on that front too!!! People with dementia need a lot of encouragement to keep going, to keep aspiring for change, to stay energised as advocates for themselves and others. Advocacy is a challenging thing to be doing, and it takes a lot of energy, vision and time.

It takes a lot of commitment too, and can also cause a lot of personal angst, as people with out dementia are not yet used to us speaking up. It requires loyalty to our dreams and goals, and if you are part of a global movement, then it requires loyalty to the movement. Without loyalty from the whole team, then the possibility of some saying, ‘I’ve had enough’, or ‘I no longer give a damn’ is high.

This happened to me last week, and I nearly resigned from a couple of things I believe in passionately. However, it is onwards and upwards, with renewed vigour, and lessons learned from the things that pissed me off, and almost caused me to not give a damn. I needed a lot of support from my BUB, as well as being able to communicate honestly with those others it involved or impacted, so that I did not move on. For any group to work together, it takes a lot of commitment, and energy and time. Mostly though it needs acceptance we are all different, and a platform of honesty, which we have.

People with dementia have many struggles functioning in their daily lives, let alone on any committee trying to achieve something beyond their four walls at home. This is mostly due to the disAbilities caused by the various forms of dementia, and therefore more often than ever before, I have to continually question if I’m being paranoid, if I have remembered things accurately, if I am being rational, if I’m over-reacting, if I’m causing others to struggle more, if I am communicating my own messages well enough to others. Many people with dementia are not able to hold onto new thoughts for long, and this means if someone else is talking, then we are in trouble; we either have to interrupt them, or risk losing the thought. We can’t interrupt them either, as then they will lose their thought! And then, not everyone can easily use a computer, or write, or read well enough manage this particular issue either.

So you see, it is very challenging, and takes a lot of courage and management. It has been useful blogging about these challenges, and the notion of giving a damn about things; a reminder that doing all the things I used to do automatically and easily, is now very difficult. Rising above so many disAbilities is a healthy reminder that people with dementia can function and live well in the community, although often need various forms of support for the disAbilities of dementia, as well as patience. Loyalty and a social conscience has often gotten me into trouble as I have a habit of speaking out because of being very protective of the groups I advocate for; I was like this before Mr Dementia entered my world and so it is unlikely this will change!!!

13 thoughts on “Loyalty, dementia and giving a damn!

  1. I don’t know if I’ve understood correctly, but I’d hate it if YOU felt like you were the one that had to change and try to get over something when it should be others doing it too ….. but if you are, then you have a lot of dignity in the fact that you are persisting with it. You are an asset to the dementia cause and people better watch out that they don’t stress you out or burden you too much ……..

    I hope that you felt a bit better about it all after 1 or 2 sleeps …….. chin up ….

  2. All I have to say is – Onwards and Upwards! To one of the most inspiring people I know (and I haven’t even met you). xxoo (Koala hugs xxx)

  3. It must take such a lot of energy to carry on your vital and articulate work. I’m a great believer in an intense period of grumbling — say ten minutes — when under stress. Knowing that I allow myself that means I can then get on with the rest of the day! You are not only advocating now but also preparing the ground for future advocates and everyone knows how exhausting preparing the ground is. Boulders of disbelief and stones of prejudice are hard to dislodge.

  4. This is brilliant, Kate. I think the principles apply to all of us – pushed to the limits by people and ‘stuff’ that distract us from our path, and oh so much harder for anyone living with dementia. Thank goodness you have your dear BUB, family and friends and strong social media community to cheer you on when things are particularly difficult.
    I have been very moved by the spontaneous campaign to support Dr Kate Granger in the UK over the weekend. A different context (terminal cancer) but very similar feelings I think – in this case a national tabloid newspaper twisted her words and intentions but people have rallied strongly behind her, adding rather than detracting from her wonderful #hellomynameis campaign. We all know that she is a wonderful advocate for positive change, as are you. Keep standing up for what is dear to your heart – your courage inspires so many others. xox

    • Thanks dear Gill, and I’m sorry to hear about Kate Granger having difficulties. As if having cancer is not enough!! Onwards and upwards we go, suporting each other. Special hugs to you too atm xox

  5. yes, you were and that I what makes us good friends… don’t stop talking more than not people will support you and sometimes moving onwards and upwards is better than quitting (not that you can’t sulk mind you) hugs

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