One of the most often said things by those caring for someone with dementia is that ‘they just want their husband / wife / Mum / Dad back.
This is something that features strongly in the wonderful book that Robin Thomson wrote about life with his much-loved wife, Shoko. In ‘Living with Alzheimer’s – a Love Story’ Robin tells it as it is, the joys and the struggles – a book that will definitely help anyone who is trying to care for someone who is not always the person that they once were.
Robin tells us that ‘Shoko had become very different.’ Both Robin and their daughter, Sarah, felt sad that Shoko ‘isn’t as she used to be’.
This was a cause of distress and unhappiness and was very unsettling. This was Robin’s wife and Sarah’s mother, this was Shoko, but it wasn’t always the Shoko that they knew and loved. All their usual conversations and ways of being together didn’t seem to work anymore.
Robin is an author and he turned to a book to help him. John Zeisel’s book called ‘I’m still here’. Robin told me how, in this book, Zeisel talks about the person with Alzheimer’s ‘still being a person with whom we can relate but that it’s a different relationship.’ He tells his readers that we can’t go back to the old relationship, but we can build a new relationship, and this feels like the most important point to understand. Zeisel says that we can help someone with Alzheimer’s by the way that we relate to them. Robin found this book enormously helpful and shared with me some of the key points that he turned to again and again.
Zeisel looks at what he calls the ‘four A’s of Alzheimer’s’ – four ways for us to relate differently but meaningfully. It’s worth pausing to look at these in some detail – they helped Robin so much that he wanted me to share them with anyone who might be wondering what to do for the best to live and care for someone with Alzheimer’s.
## A is for Agitation
Agitation arises ‘from the lack of ability to initiate for oneself’ – this often means that the person with Alzheimer’s becomes restless – not sure how to start something – not sure where to begin but often saying the same thing over and over, knowing that there is something that they want but not able to get it. We, as the carers, will need to work through this with them or distract them if the riddle can’t be solved. Robin wondered if Shoko’s continual need to go to the loo was part of her agitation – her need to do the same thing over and over again. It’s is like a complicated dance to music that you can’t hear – but move with them and you might just get the rhythm. Understanding the agitation helped to explain the behaviour and once it could be explained then it could be minimalized and didn’t irritate so much. Shoko wasn’t deliberately being irritating – she was agitated and that was how she was showing her agitation.
## A is for Aggression
This behaviour comes about for a couple of reasons – firstly because the person with Alzheimer’s is often unable to control their own emotions and reactions. I have seen this type of behaviour time and time again. It’s as if the socially applied brakes are taken off. The normally quiet person becomes more and more withdrawn, the organized, bossy person tries to run the care home and the chatty, gregarious person overwhelms everyone else with their constant talking. Often this results in what we might call ‘socially unacceptable’ behaviour. It’s a thin line and it can often feel that this gets crossed. I have seen this happen and it is often embarrassing for the friends and relatives of the person with Alzheimer’s until we all realise that this calls for a new type of relationship – often involving ignoring all but the most extreme behaviour. Aggression seems to come as a result of being unable to explain coherently what is actually wrong and needed. This behaviour can be really hard to witness and be part of. My mother could be aggressive but managed to use a tone of voice that I knew all too well from my childhood. Her remonstrations sent a chill through me and were difficult to dismiss. I know it was her way of expressing her frustration, but it is very hard to take. Robin shares with us how sometimes his attempt to help would provoke Shoko to such an extent that she would lash out at him, shouting for him to ‘go away’. Remembering that our new relationship is no longer one of child / parent is helpful. Remembering that the relationship might just be one of ‘holding and waiting’ is hard – but it can help. Above all, Robin told me, it was important to ‘let it go’ – not to attribute hate or lack of love to the outburst – it was simply an expression of Shoko’s mood when her usual ways of talking eluded her.
## A is for Anxiety
This springs from not knowing what is happening and what is going to happen next. Imagine being pitched into a world in which uncertainty is rife. We rely on routine and familiarity to anchor us – we rely on our ‘assumptive world’ as Worden calls it. We assume that our world will be the same when we wake up as it was when we went to bed. If this isn’t the case, then we struggle to make sense of life and this makes us anxious and unsettled. We need a new relationship to reestablish a pattern of life – one in which someone explains everything to us – including the day of the week and what to eat when. The strong, organized person might get muddled and the confident partner might become dependent and we have to change to be what they need. Shoko would get very worried when things appeared to be missing and appear to over react and Robin wonders if this was how her anxiety showed itself. An overwhelming need to assuage her anxiety resulted in Shoko’s need to constantly check and seek reassurance. This could result in Robin having to repeat the same assurances multiple times, irritating
but essential for helping to calm Shoko.
## A is for Apathy
If you don’t know what went before and what is coming next, then it’s really hard to plan and this can just lead to a sense of hopelessness and helplessness and then to apathy. The person with
Alzheimer’s, Zeisel tells us, just can’t be bothered any more because nothing that they do makes any difference at all. This will call for more enthusiasm on our part, explained Robin, more
cajoling which might be hard if this hasn’t been your role before. Shoko would sometimes be indifferent to suggestions, but she might crave going out or a specific food. This unpredictability can be hard to manage as can be making what might appear to be a double effort to motivate someone and will ask a lot of you.
Once we understand these four elements then we have much more chance of changing how we relate to someone with dementia of any sort. The person is still there but we need to find a new relationship with them that takes into account the different way that they now have to view the world. It’s about being ‘where they are’ – about understanding these four reactions and seeing these as symptoms of a nasty disease. Realizing that their reactions are to the situation and not to us, the carers can help and that takes away the pain. Showing love and patience is hard but it’s the relationship that we are now called to have. Every now and again we will get something back, but the relationship is often one way and takes all of us to sustain. Once Robin had discovered the need for a new and different relationship, he found it easier to connect with Shoko. He told me how it was possible for him to connect with and love Shoko but in a different way. For him, it was accepting the ‘new normal’ that helped him to come to terms with the changed relationship that he could establish.
That’s why we, the carers, need help too – more of that in the next article