How to treat the dementia patient

And unexpected affirmations on the parenting front

July 2023

Shujin came home from his weekly training day, full of information. They had learnt about dementia. Most weeks the classes were extremely boring, with some presenters just reading straight from the text book, like the students couldn’t do that themselves! But this day was different. He’d learnt about dementia, and since his mum, Okasan, had dementia, it was particularly interesting, and extremely useful. He was so pumped about it he couldn’t wait until he got home, but phoned me to tell me all about it as he drove home!

He learnt:

• Dementia patient might forget the event, but they are slow to forget the emotion. How you make them feel in any given situation is embedded in their brain. How you treat them and make them feel is crucial. Part of this is also, don’t correct a memory they share. Just let it be, even when it’s incorrect and hurts you!

• With the memory of emotions that remain in their brain, they start to write new memories. So stories from the past get mixed up and re-written, attached to the real emotions, and these new “memories” become reality to them.

• They easily forget time and date. Repeating what day and the date several times throughout the day is helpful for them.

• You shouldn’t speak about the dementia suffer as though they weren’t in the room, but they should be included in the conversation about themselves. (Eg. It’s wrong for me to ask Shujin, “Is your mum coming with us?” when she’s sitting there right in front of me. I should ask her.)

• Give prompting questions when asking of something in the past. Eg. rather than ask “Did you eat lunch?” instead ask, “What did you eat for lunch?” Or even better, “What types of sushi did you eat for lunch?”

• Asking regular prompting questions about what they have recently done is good for them.

• Don’t put them down and tell them they are forgetful. It will make them more forgetful.

Hearing all this was so helpful! We had been instinctually following some guidelines, but plenty was new to us. So after he shared, I had this feeling of negligence. Why hadn’t we educated ourselves? Should the doctor have given us an information booklet on dementia when she was diagnosed? Or, why didn’t we search for information ourselves? The only thing I can think, is that life was a little crazy. We’d done an international move, now living in a country that is foreign to the kids and myself. Couldn’t speak the language. Had to make a house-built-for-two suitable for six people to live in (and Shujin’s parents were hoarders….!!!) Shujin had started a new job in a field he is completely unfamiliar with, and if that wasn’t bad enough, the financial status was going down the gurgler fast, and it was now his responsibility to keep it afloat. Perhaps we just had a little bit too much going on and that’s why it didn’t cross out minds! We were very grateful now though, for learning all this. Shujin felt compelled to share it with all the family, so we could all care for Okasan better.

I felt defeat once again though. Shujin had a good, serious chat with both our children, but Bob had so little self-control. The emotional memories of Bob that are getting written in Okasan’s brain are certainly nearly all bad! Why was it so hard for Bob to treat his grandma well? Oh, that’s right. He has ADHD… Argh!! If Okasan didn’t react so much, Bob wouldn’t be so mean to her. But how to teach the dementia patient to remember to ignore the ADHD kid? And how to teach the ADHD kid to give space to the dementia patient?? Oh life is hard!

A few months ago Bob came home from school with a flyer, advertising free soccer training once a week at a local school. He was keen to join, and Missy decided to join too. It was all just casual fun. There were two coaches, one middle-aged man, and one grandpa. They both laughed a lot and took things lightly. I immediately warmed to them and really admired how they interacted with the kids. The kids seem to enjoy the first session, even though they had been feeling apprehensive about not knowing Japanese soccer terms. At the end of the training, all the children went over to the side of the school oval, took a large broom (there were many leaning against the fence) and started walking back and forth across the oval, pulling the broom behind them. So that’s how schools keep their fine gravel/dirt ovals so neat!

We are now nearing the end of term and we found out that the free soccer training is actually a ploy and marketing tool to lure kids into their soccer club! I could have felt a little played, but instead I thought, Good for them! They are being active and putting in extra effort to get more players for their team! Missy wasn’t so interested in going “serious”, but Bob was keen to join the soccer club which Shujin and I were supportive of. Having an activity that helps use up some of his ADHD energy was very attractive to us. The soccer club had a compulsory parent’s meeting that every parent was expected to turn up to. Every parent turned up too, except me. I didn’t see the point, even though I may have been expected to be there because it was compulsory, sitting through a meeting in Japanese really is pointless for me! Shujin could just fill me in when he got home. And that he did.

At the meeting they shared that their soccer club wasn’t a normal soccer club. It was more like Scoutts. They had a holistic approach. Winning wasn’t the most important thing for them. They don’t train and play to win. They don’t bench players who aren't the best. Instead, they want all kids to have a go, and they give them all a go. They want to teach the kids good manners and behaviours. They teach the kids to take initiative to pick up rubbish, to help clean/pack up, to become more independent and look after themselves. To greet people (strangers) and be friendly. They said they want parent involvement in the club. It's not a drop-off babysitting service. They want to teach the kids these values and traits and want the parents to be also be teaching them at home.

As Shujin was sharing this with me after the meeting I wanted to just cry. What a failure I was! This was exactly what we had been trying to teach Bob for twelve years. TWELVE YEARS! This is what I'd been working towards, for him to be an independent, considerate, decent person! But I've failed! FAILED! I could see the “Failure” sign plastered to my forehead.

Bob didn't tick any of the boxes of what they were wanting. Shujin told me that he was squirming in his seat, and felt compelled to speak, to try explain our son, or at least, apologise. He had ONE good excuse: in Australia we don't teach children to talk to strangers. He started off on that one point, but continued talking and apologising for the rest of the points that Bob just did not match up to.

The response of the coach, however, bowled him over. He said Bob is a different kid, he is so friendly, he takes initiative and helps pack up without being asked, is independent and looks after himself. And on and on the coach went, singing nothing be praises for my boy and saying, “I wish the other kids were more like him!”

As Shujin relayed the scenario to me, I was struck dumbfounded! Was this really Bob they were talking about? My cheeks were wet, my body could no longer hold back tears as it turned from tension, disappointment and defeat, to disbelief and joy. Rip that ‘Failure’ sign off my forehead!

Parenting is one tough gig, but moments like these give me hope and assurance. He does know what is right, he can chose to do right, and he does do what is right, just not so much at home…

We don't get to see the good traits at home that the soccer coach sees in Bob, so Shujin asked them if they could teach Bob to be like that at home, not just at soccer!!