'Have you seen your father recently?' asks my mother. Sadly, he's been dead for over 20 years. How do I answer a question like that? Do I say ‘yes' - but then what do I say next? Or say ‘no' which feels wrong even though it's true. Or do I remind her that he died and risk opening up old wounds?
Speaking with others in a similar situation, I know I'm not alone in this dilemma. Since my mother lives in a care home, I was fortunate to be able to speak with a dementia advisor there and talk it through.
She explained that it can be helpful to think about memory as a set of bookshelves: the lower shelves are the oldest memories and the most recent are at the top. Dementia shakes the bookshelves, and the books become disordered or fall off the shelves altogether. Those on the shelves nearer the ground are more stable and less likely to be affected, but those at the top are very vulnerable. This is why people with dementia may have clear memories of childhood but are hazy about recent events.
Depending on the type of dementia, the person may have varying degrees of awareness of what is happening to them. It's an ever-shifting scenario: which ‘books' fall, and which remain will change over time. Increasingly the ability to apply logic and reason will fade but the feelings and emotions persist as strong - or stronger - than ever. Therefore, the advice is to listen to the feelings behind the words spoken in those confusing questions and utterances. The words may not make sense but what do they tell you about how your loved one is feeling? For example, they may say that they want to 'go home' - and yet they are at home. What has prompted this? Perhaps they are feeling anxious and thinking back to the security of childhood, the cosiness of being with their parents, or the happiness of their early married life. 'Home' means 'when I felt happy and safe.'
Perhaps your loved one seems not to know who you are - which is very distressing. But you can be sure that they know how they feel about you, despite losing the 'label' of your name or relationship. The advisor recalled being consulted by a man who was upset that his mother seemed not to know he was her son. She called him by his name, 'Tom,' but she did so for several other people - her doctor, one of the care staff and a family friend. 'Do I mean nothing to her?' he asked. The truth was that the mother had forgotten much but remembered that he was someone who made her feel particularly safe and happy - as did the doctor, care worker and friend. So 'Tom' meant something special and positive to her, so much so that she generously applied the term to her other important visitors. Understanding this made a huge difference to Tom and made his time with her much happier and easier.
Here are some guidelines for those 'difficult' conversations:
As for me, for the question, 'have you seen your father?' if it comes up again I'll say, 'Well I think about him often, and how special he was. For example, the time when - 'and talk about something he did or said which I hope will raise some happy feelings for her. Always go for the feelings.
For support with all types of dementia. Their online forum provides a way to share experiences and thoughts with others also affected by the condition.