As anyone with experience of dementia will know, it is a disease that plays tricks with the mind. Sometimes those tricks can be fairly innocuous moments where clarity of thought is absent. They can be mild and pass almost as quickly as they came, but for many people, my father included, they can come to define life during a particular phase of their dementia.
As a carer, developing an appreciation of and a strategy for helping with the effects of your loved one’s dreams, hallucinations, imaginings and other – almost movie-script-like – beliefs and visions isn’t easy. Short of setting up camp in the mind of someone with dementia, seeing what they see, hearing what they hear, and trying to make sense of it all from the point of view of someone with a brain that is working less than perfectly, I don’t think any of us looking from the outside in will ever truly grasp what dementia can make you see, hear or believe.
In my dad’s case, elements of reality were twisted into fantasy, leading to a bizarre period of a few years where he increasingly lived in a world that made absolutely no sense to us. We dubbed this ‘eccentricity’ at the time – only later learning that it was actually the workings of vascular dementia.
Dad started living in a world where he believed that he had formed ‘friendships’ or ‘feuds’ with certain people on TV. He never met them or contacted them, he just believed that he had a personal relationship with them that was, in his mind, either positive or negative. From there he progressed to believing that people in TV programmes were sitting in his lounge, and that what they were acting was really happening in his home. In the end we couldn’t even sit down in certain seats because ‘someone’ was already sitting there. He would put out food and drinks for these ‘people’ and we would be forbidden from touching it.
For dad, his dementia almost fed off of the TV – the people, scenes and actions were like fuel to his damaged brain, playing all kinds of tricks on him. I would be the first to admit that some of these tricks seemed to give him happiness and purpose, but others were much darker and more sinister, disturbing his equilibrium, his sense of worth, his understanding about where he was, who he was with and how his neighbours were behaving, and in the end it affected his ability to sleep, eat or even leave the house.
Of course, since we knew nothing about dementia, least of all that he had it, we fell into the classic trap of trying to reason with him. We told him countless times that what he believed wasn’t true. We would attempt to demonstrate that it wasn’t true, that it was all just in his imagination, often leading to arguments. We would clear away the food and drinks he put out for these ‘people’, which only made him more upset and frustrated. In his mind he couldn’t understand why we weren’t making a meal for, or conversation with, his room full of ‘guests’.
These were the sort of ‘guests’ that never left however. Week after week, month after month, their presence only got stronger. It was a bewildering, frustrating and ultimately extremely strange period in all our lives. Looking back now, I can see so many occasions when we went wrong, when we could have handled situations differently, but then of course hindsight is a wonderful thing.
So how do you avoid the mistakes we made and help your loved one through what they are experiencing? First of all look around their home: TV screens and mirrors are commonplace and entirely innocuous in most homes, but when someone is living with dementia they can become the source of much angst. Think about lighting (both artificial and natural sunshine) – the way it reflects off of objects or creates shadows can play havoc in the mind of someone with dementia. Patterns on furnishings, floor coverings, wallpaper or even plates and cups can also fuel the imagination in a very disturbing way.
Dealing with the tricks the mind can play in someone with dementia can be very exhausting and at times utterly baffling. When you have a loved one who has dreamt that they are lying on a beach in the Caribbean and now wants to go outside in their swimsuit in a freezing gale, it is very tempting to tell them not to be so ridiculous. Likewise, if they are spending the entire day terrified that they have murdered someone as a result of a nightmare that they have had (and are now too petrified to do anything, including sleeping), patience can run very thin on the ground.
Ultimately reassurance about anything troubling your loved one is vital, remembering that arguments are futile and very counterproductive. Avoid contradiction since it will often make the situation more distressing. If possible, encourage the person with dementia to talk about what they are experiencing and make sure that you listen carefully to what they are saying. From this, try and gain an insight into what is happening to them and think long and hard about how you could implement changes within their environment or routine that might alleviate what they are seeing, hearing or believing. Think about keeping a log of their experiences – are they connected to a particular time of day? Consider vocabulary issues too – is what your loved one describing to you not so much what they are seeing, but their description of something that they cannot remember the correct word for? Finally, eliminate any illnesses, emotional disturbances, medication side-effects or problems with vision that could be contributing to what they are experiencing.
Stepping inside the world of someone with dementia often takes courage and resilience, and never more so than when you are dealing with a situation that, whilst it is the centre of your loved one’s life, you cannot see, hear, touch, smell, taste or feel it yourself. As someone who knows and loves them, however, you are uniquely placed to help them through a huge challenge for you both.
Until next time…