My voice was analysed on radio last week and I was glad the few minutes I was interviewed on air showed very little of the impairment in my speech that is more often evident at home when I am relaxed. To most people, it showed virtually none; to my husband who knows me well, it was evident. For me, on the day, I know how hard I worked to sound ‘normal’, but realise how often this works against me as it further cements the notion of disbelief. Many of my friends with dementia talk about this disbelief too, and we all get tired of constantly having to defend ourselves.
So the question is, do I [PWD] simply give in and stop paddling against the disabilities of dementia, and accept the humiliation that brings with it, or do I keep fighting to accommodate the disabilities of dementia, to hide them as much as possible. It is a conundrum, as the annoyance my family feel when someone like Ian Henschke says, on air, ‘but it sounds like there is nothing is wrong with her’, is tangible. Sadly, it is something that would never happen if it was cancer, he would have said something like, ‘you look so well in spite of your disease’.
The saying ‘it is what it is’ gets quite a hammering in this house, because that’s exactly what it is! When a person is diagnosed with dementia, research says they feel humiliated and ashamed. I can confirm I still occasionally feel ashamed, and certainly still feel humiliated every single time I get something wrong, miss a word or meaning, stumble with my words, or publicly display a disability. It is of course, one reason I work so hard to hide them. For now, during my moments in public I can usually overcome or hide things, but I am definitely going out less often as it is getting harder.
My dear husband is currently prodding me with an electric poker (figuratively speaking of course!!) as I’m wanting to give up a few activities simply because it is becoming so much more difficult, and taking a lot longer, to achieve a result of any kind. We’ve seen others who appear to ‘give in to dementia’, who stop fighting against the symptoms, and it is a very slippery slope. My head [and husband] pushes me to keep fighting, to keep speaking out, to keep ignoring those who openly doubt, to just accept the conundrum that doing well with dementia brings with it. We have to, as it is the only way we will ever beat the stigma and discrimination, and break down the myths and misperceptions about PWD in our communities.
kateswaffer.com is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones. Follow her blog at http://kateswaffer.com/