Excerpt

The Dementia Diary

Demented Dementia

Thoughts and stories about mum and how this disease is impacting her - sometimes in a sad and distressing way but there are times of hilarity and much laughter too…

The loveliness of her

Anyone who knows Kay Brown will attest to her beautiful, loving and hilarious personality - she’s  a vibrant and happy soul. When dementia began to take hold of her, we were worried she’d turn into a cranky old bag nobody would want to be around. Including us. How blessed are we that the total opposite has happened. Not only is her usual state, one of happiness, everything around her is beautiful - the trees, the streets, the sky, the people, the buildings, animals and children. It doesn’t matter where we are or what we are doing, Mum sees the beauty of it all. Everyday she tells us how grateful she is and how happy she is to be with us. The chance to be around this loving soul for as long as possible is one Stephanie and I do not take for granted. As long as she is happy and healthy, we know we are doing the right thing for her and for us. 

No filter

I was publishing a digital magazine whilst on the coast and had a meeting with a young graphic designer. It was a Saturday which means mum was staying so we went together. We sat down at the table and started the meeting with a little chit chat. I told the young woman I lived at Dicky Beach. Quick as a flash mum  stated “Oh every time I hear that name I think of all those men on the beach with their dickys hanging out!” God love her. 

The look on the designers face was priceless.

It wasn’t as hard as I thought

When mum and Stephanie arrived in Darwin for the Dry Season, I had no thought of joining them, yet as the day got closer for them to leave the realisation hit me - I couldn’t be without them. Our brother Anthony died in January after a shockingly brief illness and it left me with the feeling that our family had somehow been decimated. Where we were once 6, we are now 3. The Brown Girls are the last ones standing. Literally, and the thought of being apart from each other was too much for us to bear.

The impact of sudden death

Mum’s dementia advanced rapidly  after Anthony died, as she couldn’t connect the dots with how she was feeling to the reason why she was feeling it. She couldn’t understand that she was grieving but knew something was very wrong. It rocked her. She would sometimes say to me “I feel like somebody has died”, and I would answer yes. “Was it someone special?” Again, yes. “Do you know the person?”… “Do I know the person?”  The look of  realisation on her face and then the tears was heartbreaking for us. This happened many times over the first couple of months until mum came to terms with it and found some peace.  It allowed Stephanie and I to breathe a little easier too. 

When the words won’t come

This morning mum and I were sitting having a singalong. We have performed on stage together many times over the years and it’s a blessing to have this connection with her. She has a favourite song which is on her CD and was played at Dad’s funeral. It is her go to number these days whenever someone asks her for a song, because it has a very special meaning to her.

This morning however, it was different. She couldn’t remember the words. I watched her beautiful face as she tried to summon them to her. It was just awful. We took a big breath and  sang together as I fed her the words. We got to the end, breathed sighs of relief and had a laugh at the absurdity of it all. What happens when she forgets every word? 

MSS

Mum doesn’t realise she has dementia though is constantly lamenting the fact that she can’t remember things. We joke with her that we can feed her the same stories  over and over again and they’re new to her every day. It’s a constant source of entertainment for all of us. When her complaints about her memory escalate we tell her it’s because she has MSS. She looks puzzled but somehow knows something funny is coming… MSS = Memory Shot to Shit. It’s the funniest thing she’s heard and the added bonus? It’s like she’s never heard it before.

MSS, the gift that keeps on giving.

10 Things we’ve learnt about Dementia

1. Acceptance
   We’re in this and we have to accept it. Everyday something occurs and Stephanie calls it ‘The New Normal’ and she’s right. Acceptance is big. Without it we would struggle to come to terms with what’s happening in our little world and all that’s left is sadness and distress. This is not what we want our lives to be, so we accept and take every day as it comes, filling it with love, laughter and little adventures.

2. Patience
   If ever there was a time to test our patience, this is it. Everything is slower, laborious and sometimes merely impossible. We’re not dealing with the person we have known all our lives  - the energetic, active, smart and intelligent one - no we are dealing with someone who has some of the same characteristics, but in a much smaller, more contained way.
   Patience in understanding she no longer understands. Patience in repeating ourselves sometimes on a minute-by-minute basis. Patience in waiting, waiting, waiting. Patience in hearing the same story or same song over and over again. 

3. Language
   Language is everything. What once was easy to get across, is now fraught with misinterpretation. Add this to the fact hearing is now an issue, we have to be very careful in what we say and how we say it. If taken the wrong way, what has been said can be seen as a slight on her behaviour or as a complaint. Tricky. Where something was once a given, it now needs to be explained in a way that’s easily understood. Subtly and nuance have all but disappeared.

4. In the moment
   In the moment, means just that. Simple repetitive tasks are completely new each time they’re done. Playing a dominos for example, each game is new and must be explained. Going out for lunch with family and close friends is done as soon as we walk out the door. There’s no memory of the event or the people.  Hair done, medication taken, food eaten, all forgotten in an instant.

5. Physical
   The physical changes are dramatic. This is a woman who can still touch her toes and kick her legs high, but has also started to bend over like a question mark. She can no longer walk for long periods of time and tires very quickly.  Often shaky on her feet, she’s slow and well, old. We’re not used to it. Where has the all singing, all dancing Kay Brown gone? 
   The other part to this is cuddling which we do often. Kisses and cuddles every day. Holding hands, arms around shoulders, touching and stroking. All of this brings such joy and happiness to all of us.

6. Comprehension
   Cognitive reasoning. Where has it gone?
   When her son - our brother - died, she knew something wasn’t right because she felt uneasy and unsure. She couldn’t remember he had died but knew something was definitely wrong and it made her scared in a way. We had to explain her feelings to her, so that she could understand what was happening in her mind and body. It was distressing for all of us.
   When she’s not her usual happy and carefree self we need to sit quietly and talk with her, to try and discover what may be bothering her.  She may be unwell, in pain, sad or tired but can’t connect the dots in her mind, so we have to try to do it for her. Watching her struggle with this is very difficult; it will only become more pronounced and we have to be ready for it.

7. Behaviour
   Compulsive is the word to describe it.
   Blue. That’s the colour. If it’s not blue it doesn’t stand a chance. Blue earrings, tops, pyjamas, rings, bracelets, shoes, towels. Everything. And if you’re wearing blue the compliments come fast, effusive and fast.
   Tissues. Look into her bag and there are tissues, pieces of paper towels and paper napkins neatly folded into every compartment and glasses case. Many have been used, folded and kept as if they’re precious objects not to be lost. 

8. Family
   Without family we are lost. The care for this beautiful being is a 24/7 activity. She can’t be left alone which means this is not a one person job. Stephanie and I have different roles to play to make sure this dynamic works for us. Stephanie is the mistress of  routine   - the one who makes sure mum is showered, dressed and ready for the day, had her medicine and dressed into pyjamas and tucked up in bed at night. The one who keeps the wheels turning with our everyday life.  I’m the the comic relief, entertainment and the negotiator, the cajoler, the interpreter - the one who sits and gently asks questions to get an answer to what may be troubling her. We juggle and play off each others strengths and it works for us, most of the time. When it doesn’t we step away, take a breath and hug each other and go back to it.

9. Laughter
   This is huge. We laugh as much as possible. Coming up with ridiculous accents, stories and antics keep the laughter coming. We are a funny family so between the three of us there is much hilarity. Mum can still throw out a quick quip to floor us. She has no filter now which makes for hysterical comments coming out of her mouth willy nilly, especially funny when we are in company.

10. Love
    Without this, everything is lost. This is what fuels our days and lulls us to sleep at night. This is the reason we are doing this and why we Brown Girls are sticking together. Love is what makes us tick and drives us to do  what we do. Love is who we are. 

BECAUSE LOVE MATTERS.

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Excerpted from The Dementia by Christine Brown. Copyright © 2024 by Christine Brown. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.