Dealing with my husband and my own chronic fatigue while returning to work has been difficult. I recently completed a survey aimed at Long Covid sufferers like myself. I ended up articulating for the first time why even relatively harmonious conversations are so very tiring.
The survey asked about brain fog and how we struggle to find words to express ourselves and answer questions. I realised that living with someone with dementia, there are a whole load of extra steps in this process.
For a start questiond may sound utterly random. My husband largely forms sentences which make sense in themselves, but make little sense without context. So the first task is to try and understand where the question came from and what is wanted. For example ‘Have you seen a small black purse anywhere by any chance?’. Grumpy, tired me wants to answer ‘No’. But unless I translate this as ‘I have lost my wallet since coming in the house’ I won’t be able to help. Actually this means ‘please find it for me as I have forgotten where I put it’ (and ‘I’ll find it tomorrow before you next need it’ will just bring on repeats).
Then no matter how well I understand the question, I cannot answer off the top of my head. My duty as carer is to make my husband’s reality easy. For example, the right answer, after a search, to the previous question is not ‘It was in your dressing-gown pocket’. This won’t make him happy or stop him randomly putting it there. I have to work out in each situation what the right thing is to say for him. I admit I don’t always manage this.
Then there’s the repetition. Sometimes it’s only mildly tiring; same question, same answer. It’s irritating when I am struggling to concentrate on work, but at least I can just repeat what I said before. But sometimes it tells me there’s something wrong which won’t go away. I can’t always prevent bad things from happening, but I should try.
So, pretty much all interactions with someone with dementia are tiring because they all require thought. Why has he asked the question? What will the effect of my reply be? What happens if he can’t take my reply on board? If, like me, you find conversation tiring anyway, it makes daily life exhausting.
Of course it all becomes easier if you stop caring. Indeed I have been given advice from friends and family to ‘just get used to it, it will only get worse’. As I have said before, I am not yet ready to separate my feelings from the person I married six years ago. And he thinks of me as the same person. So we’ll just have to continue as we are for now.