“Dementia – making sense of their world” by Ken Johnson

Ken Johnson Dementia Week

This week is Dementia Awareness Week and Ken Johnson, Riverside’s Care and Support Quality Officer, shares his experience of how he has learnt to live with his 89-year-old mum, Grace, who has dementia.

As a former Dementia Friends Champion and having delivered Dementia Friends Awareness sessions and as part of Dementia Action Week I wanted to share three things with colleagues who may have loved ones living with dementia.

Try and not argue with your loved one.

Try and not correct your loved one.

Try and not reason with your loved one.

Because remember, it’s not about making sense in your world – it’s about making sense in their world.

By adopting these coping mechanisms my family and I have found it extremely useful when talking to and interacting with our mum, who has been living with dementia for many years now. 

My mum was born and raised in Liverpool but spent all of her married life in Widnes – over 60 years in the same house. However, mum is currently in a care home and has been for almost two years. When we are sat in her room in the care home and she glances out of the window she almost always points to a certain house and says to me “That was the house where I was evacuated to during the war. I have some lovely memories from that house”. 

That statement hardly ever changes. Mum is right in the fact that she was evacuated as a girl during the war but it was to a small farm in Wales. I never correct her or try and reason with her. What difference would it make? Not a lot. In fact it would probably frustrate mum. The fact that mum says she has lovely memories from that house – that is the most important thing. 

It might be difficult not to correct or reason with your loved one, but believe me it has worked for us, and our mum is in a happy and contented place at the moment.

Another thing that my mum does is the repetitive questioning. Mum might ask me what I have been up to that particular week. Five minutes later she may ask me again. I give the same answer. I could do this for as long as she asks me because she’s finds it interesting. But I’ve learned that if I distract her and either pick up a magazine to flick through with her or talk about the numerous family photographs in her room, more often than not mum moves on, and we begin different topics of conversation.

If the weather is good we like to get out and about and I’m on wheelchair duty. We have a couple of routes that I take but we always end up at a small local park. We’ll do a tour of the park and mum will always comment on the flowerbeds, the children playing in the playground, the dog walkers and their dogs and she seems to get a lot pleasure staring up into the trees and commenting on their size and shape. 

We’ll then stop at a picnic bench and I’ll ask mum for the carrier bag she’s carefully clutched in her lap during our walk. And from that carrier bag I will take a small bag of nuts, a can of lemonade, two plastic cups and a miniature bottle of whisky! We sit there sipping our whisky and lemonades and she’ll turn to me and say “This tastes lovely son, I don’t want this drink to end” and I look at her and think “And I don’t want moments like this to end”. We’ll sit and chat about everything and anything but occasionally mum will recount a story from my childhood and I can only assume that something she’s seen or heard in the park has triggered that memory. We finish our drinks and head back to the care home but my trips to the park with my mum will stay with me forever – they are cherished moments.

I remember walking back once and mum asked me what I was doing that night and I told her I was going to the theatre to see The Dusty Springfield story, I then started singing “You don’t have to say you love me, just be close at hand…….” This made mum laugh and she said “You never change do you son?” And I said “Why, do you want me to change?” and mum immediately replied “No I bloody don’t, I love you just the way you are, son.” Another moment to cherish.

Don’t get me wrong – it’s not all plain sailing getting her out and sometimes mum can’t be bothered and says she has no energy. So I never push it and it’s about finding other ways of engaging and I’ve found cooking programmes on TV are really good. Mum used to do a lot of cooking and baking and we talk about the different meals the on-screen chefs are preparing. This will lead us into talking about the meals she used to cook when we were all at home. And all the different types of cakes she used to bake. And mum is in a happy place again. 

Feel and touch are also important to mum and she likes nothing better than when I rub her neck and shoulders, followed by a head massage. Her eyes close over and it transports her to different world but she will always mutter “This feels wonderful, you don’t know how much this means to me.” And I reply “I do, and that’s why I do it.”

By living in mum’s world and living with her dementia life is as good as it’s ever been. 

It doesn’t matter to me that my mum doesn’t remember all of my visits or all of our chats, but I will always remember them and they will stay with me forever.

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