The conundrum of dementia

AnEpistemologicalConundrumco·nun·drum

/kəˈnəndrəm/
Noun

1. A confusing and difficult problem or question.

2. A question asked for amusement, typically one with a pun in its answer; a riddle

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.

12 thoughts on “The conundrum of dementia

  1. What I love about your writing is that you deal with the ‘real’ issues of a dementia. So much of the disease is medicalised – but you really talk about being the person living with the disease feels. I am often overwhelmed with emotion reading how your thinking and feeling about a challenge, a loss, a tough time….
    What I read is a blog by a super smart lady who is advocating for others who suffer. Kate, if you’re tired it’s OK to take a rest. Perhaps it’s time for someone else to take on the fight. But I recall seeing you speak here in NZ and promising to “live ’til you die” – if you take a break/a rest/some time out – just remember to get back up and keep living.
    It’s not just what I want, what your other readers and friends want, or even what Peter wants…it’s what you want too! (just in case you forgot 😉 )

    • Brilliant advice Esther, and thank you for reminding me what I want! I think I’m like a skittle, because,every time I fall over, or get knocked over, I seem to pop back up, but it is great to have you and others lending me a hand up too. 🙂

  2. My dad never lost his dignity. He was one of the most intelligent people I ever knew. He held onto his “brain” with brute strength and willpower. Many people battled to believe that Dad had AD. It is important to realize that AD sufferers lose their memories – not their minds… Keep fighting Kate!! Do give in or succumb to preconceived ideas or expectations. You are so brave! I salute you!!

    • Good on your dad for not losing his dignity, which also probably means you treated him with dignity. I like your words, losing our memory, not our mind, thank you.

  3. I know what you’re saying Kate ….. there are a lot of “invisible” disabilities so you’re not alone. Unfortunately though people will still make those rude, crass comments.

    And your dilemma is “worse” because you’re often under more scrutiny since you’re the voice of the younger onset group. So maybe you shouldn’t try so hard to “appear” normal because you may just be doing youself a big disservice. Because when you eventually will not be able to hide it all even with a lot of effort you might just get upset with yourself for not being able to control the symptoms ….. when in fact you shouldn’t need to get upset. If anything you should get upset with society for making you feel that you need to be “normal” to just fit in.

    Maybe you can make that a new “goal” for your advocacy ….. to be yourself, “warts and all” and try to teach everyone that you are still an active member of society and deserve everyone’s respect.

  4. Feeling shame Kate is a by-product of third dimensional thinking, it is part of the ego and is what is so wrong in the world today….If no one judged each other there would be no reason to feel shame. If we are going to get to that beloved fifth dimension, it is up to us to end the judgment and to do that we have to end self judgment and no longer care what other people think. If someone is judging you it is THEIR issue, you are who you are and you love who you are warts and all. If they can’t love you that is THEIR problem. The real issue here is for you to get beyond letting what others think worry you. Loving yourself just as you are and feeling pride for who you are. This is your PWD challenge in this lifetime Kate. Can you learn to love yourself with Dementia and not care what others thin? If you can and stop trying to hide it but still stay filled with pride you will inspire others to do the same and we begin winning our battle to get out of 3D….You can and you WILL do this. I know you will. You are strong and as your blog says, you are inspiring to others!!!! Stay with it however it comes to you and love who you are 🙂 VK xxoo

    • Love your wisdom VK… I am slowly learning to love the new and evolving me [PWD], and mostly just get annoyed and offended by the ignorance of others. But none of us know what we don’t know, until we learn to, so even then it is hard to get too angry, and this helps us to push on with advocacy. 😉

  5. “Doing Well With Dementia” this is the kind of phrase doctors need to use when they diagnose somebody. It gives hope to both patient and carer. It could be followed up with referral to a clinic or memory cafe where people could learn how to do well with dementia. Perhaps?

  6. Keep fighting Kate not just to counteract the stigma you are talking about, but for yourself , to help the ‘little grey cells’ work for as long as you can. 🙂

The only thing missing in this global conversation is YOUR voice... Thank you.

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