Today is one of those days I feel like hiding under the blankets all day, although where I live, that would be a tad warm as it’s very hot here this summer! Anyway, I suspect, sweat droplets would take over from tear droplets eventually and it will all be ok! But it doesn’t feel ok just now…
How do we negotiate a secure footing, in our world that is always moving and full of confusion, misunderstandings and such constant change in functional ability due to dementia? It needs patience and love, and a lot of bloody hard work. How can asking one simple question turn out so badly? I must get better at managing situations and problems, and find ways to deal with things so they don’t backfire and hurt me.
I’m not feeling strong today, and need time to sit and ponder if this global advocacy work is all worth it. I had always believed a collective voice was far more powerful and effective than individuals trying to make big change to global problems, but perhaps I am wrong. I must refocus o what the goals are, what the vision is for the 47+ million people with dementia and the person who is being signalled every 3.2 seconds somewhere in the world. We must be stronger for them, and the collective voice must not only grow it cannot fail. Onwards and upwards, through the fog together, is the only way forward.
So to remind myself of some of the disabilities of living with dementia, I must remember that our emotional folders are not always working, our words and actions can be misinterpreted, we can misinterpret others words or actions, we have much more difficulty dealing with conflict, we are sometimes happy when we should be sad, and vice versa, we can expect things yet no longer know how to ask for them, we get lonely as we miss those people who have disappeared from our lives, and although we can’t change it, it makes us sad. The grief and loss of dementia never, no not ever, goes away.
We have to wake up every day knowing that some other function or memory might be added, lost, or perhaps has completely disappeared, or some other ability that yesterday was intact is now impaired.
We worry that maybe something we did or said has been taken the wrong way and hurt someone, or that their reaction will hurt us. It is not as easy to deal with this stuff when your thinking has changed so much. And when, not if this does happen we have less ability to deal with it emotionally, hence my feelings today, and why I had to write about it, as my blog really is my free therapist. Half the time, we may not even be aware of some of the changes, especially as dementia progresses. I know now, that my husband notices many things that I do not.
Dementia is a global problem, and great change is desperately needed, not just for a cure, but for improving the care and outcomes for those of us living with it. I will just have to hang in there today, and remember one of my favourite quotes, which usually gets me through.
Never doubt that a small group of thoughtful committed citizens can change the world – indeed it is the only thing that ever does.