Being willing to change

The first year of looking after mum and dad with dementia was really hard.  I didn’t know what to say, or how to get them to do things or go places without stress, anxiety and arguments.  I sometimes found myself in tears through sheer frustration and stress. 

I only did my best with what I knew about dementia, which was basically nothing! 

I communicated the way I had always done; I used logic and reason and present-day reality.  All of which made little sense to poor mum and dad with their dementia.  I didn’t understand that mum and dad had zero insight into their dementia, and therefore thought there was nothing wrong with them.  As a result, they couldn’t understand why they needed my help, and at times mum would say to me “I think you’re the one with the problem not me”! 

I hated arguing with mum and dad and all the stress, frustration and sadness it caused.  And I found myself increasingly dreading visiting them, and when I was with them, I would find excuses to leave as soon as I could.  Spending more than a half hour was sometimes too much for me, and I would often leave feeling angry and frustrated. 

I hated how much dementia had changed my parents, and I deeply disliked how much it was negatively impacting my relationship with them. 

I slowly began to realise that mum and dad’s dementia wasn’t going to get better, and that their brain changes were here to stay.  And that in fact, I was the one with full brain capacity (although at times I found myself thinking I had dementia too!), and so therefore I was the only one capable of changing this awful situation. 

I found myself reading every book I could find on dementia. My first light-bulb moment occurred whilst reading “Contented Dementia” by Oliver James.  Coupled with listening to Jane Verity and her Spark of Life Model of Care, I realised I had to start looking at the world through their eyes.  I began firstly by thinking how I would feel and react if I were in mum and dad’s shoes, which helped me find compassion and understanding for them, and allowed me to begin changing my approach and communication. 

My vividly remember my first go at doing things differently.  Dad was going through a period of being convinced he hadn’t taken his pills.  Every night he would ring my sister up full of worry and fear, and each conversation would end in an argument.   We tried everything – logic and reason, telling him he had taken his pills, or getting him to sign the calendar only for him to swear it wasn’t his signature.  He would ring the GP practice almost daily to make an appointment to see his GP; thankfully the receptionists were very understanding and kind.

I was in the middle of reading “Contented Dementia” when I had a sudden brainwave.  What if we accepted dad’s reality and told him that he was right, he hadn’t had his pills.  But this was because the doctor was so impressed with his amazing health, he no longer needed his pills.  It worked!  Instead of getting off the phone upset and angry, dad was uplifted, happy and proud.  And the next day because he had forgotten the conversation, he continued taking his pills.  After a few more conversations as I outlined above, he never worried about his pills ever again. 

I was amazed at the result and it was a massive game-changer for my sister and I.  By using a ‘loving lie’ we met dad’s underlying feelings of fear and anxiety, and his repetition and fixation with his pills stopped.  From then on, we began accepting mum and dad’s world and using ‘loving lies’, which fundamentally changed everything.  I found so much more connection, calm, trust, love and even joy, all by being willing to change my approach and communication. 

Thank you for being willing to change as your person changes along their journey of living with dementia.  I promise you it will be worth it.