What Worked For Me: Learning new ways to communicate

By Hannah C, whose mother has a diagnosis of LBD

After my mother’s first diagnosis, I realised I knew nothing. There was no escape from the fact that I was now responsible for my Mum, and I had to learn how I could help. I bought books. I joined websites. I scrolled through forums, but found them overwhelming, and lacking information specific to mum and our situation. 
 
I’ve found that becoming that expert in Mum, what she needs, has been my approach. Learning a new way to communicate has been key, based on emotion and need, not fact and logic. It’s hard, and is another sort of loss, but ultimately rewarding. 

First off, the SPECAL method – via Contented Dementia – was most useful. There are 3 golden rules: 
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1. Ask no direct questions
2. Learn from the expert (ie Mum) 
3. No contradictions

 
Conversational ‘ping-pong’ gains trust – I still use a lot - taking something neutral to talk about, like a pretty cloud or the cold rain, something Mum can feel confident in talking about.  I found the whole book overwhelming in the beginning, not answering my issues, but I go back to it, and I share it with friends and family. 
 
I’ve learned to trust information Mum gives me. For example, a common refrain was ‘there is nothing to eat in the house’, it took me ages to realise this meant that she was hungry. When I visit in the care home I always start by sharing food. I still have not found a good answer to ‘there is nothing to do’, but I know means she is bored, frustrated, and restless. 
 
Another technique, via Teepa Snow, is for difficult conversations that may escalate. It adds one extra step in the conversation. It might be ‘I just want to go home’, or  ‘I don’t know where Father is ‘ – something unsolvable, but highly emotional. 
 
First repeat the question/issue, with genuine interest. 
It might go like this: 
 
Person: I want to go home!  
Carer: Ah I see, so you want to go home? 
Person: Yes, I want to go home! 
Carer: Hmm, I see. Is there something you need to do, or you just want to be there?
Person: Likely to give more info, e.g. ‘I need to look after the children’ or repeat ‘I just want to go home’. It will give a clue how best to respond. 
Carer: Ah, that sounds complicated/hard/upsetting/ difficult /a good idea. You will have a more information to offer a solution, or distract, to take the pressure out of the situation. 
 
It is hard to do, but keep going even if it feels clunky. I even use this technique in talking about scary hallucinations, and in non-challenging conversations. Teepa Snow’s work is so practical. 
 
Dementia By Day (Rachel Wonderlin) podcast is great too, with ‘what ifs’ for specific situations. I used her method EXACTLY for washing. It worked! It started with a change of socks, a foot wash… breaking down the task into tiny parts.  
 
Believing that I am the expert in my mother, and that I have every right to share this knowledge is helpful. I keep banging on, though sometimes it has been hard. 
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Dementia, and LBD, is heart-breaking, unpredictable, and difficult. So it’s essential to find moments to treasure. I give mum a big hug when I arrive, tell her I love her, in those words. If she says ‘I know’ I take that as my reward. I know there will be a time when she says nothing, and then a time when she is not there for me to hug.