Talking to Ghosts

At the latest meeting of our local Carers’ Support Group we were joined by a new member who is caring for someone with dementia.  As we talked, it became clear that they were struggling.  Some of their friends and neighbours had “disappeared” since the dementia diagnosis was made and didn’t visit or keep in touch anymore.  The person admitted that they felt lonely.

Fortunately, I have great support and loneliness is not an issue for me.  Nevertheless, the person’s comments struck a chord.

Dad’s stroke in 2014 exacerbated his brain impairment and his communication difficulties.  Since then we too have noticed the subtle slipping away of many family friends.

Some people have surprised me by staying touchingly loyal – phoning now and again to see how Dad is doing, popping in occasionally just to say hello, talking to Dad at his weekly coffee morning, sending a birthday message or postcard from holiday.  They are small things, but they mean a lot.

The majority however, have simply slipped away.  I think because of his age, some people assume that Dad has dementia and won’t remember them.  I’ve been asked several times how his dementia is coming on.

Some days it can feel as if Dad has turned into a ghost – he’s still here, but some people just don’t see him anymore.

Of course, people are busy and have their own responsibilities and concerns.  I don’t want to sound too judgemental here – I don’t always phone friends as often as I mean to for a start. 

From what I’ve heard and observed, maintaining friendships seems a particular problem wherever communication or socialisation skills have become difficult.  A person might struggle to find the right words to express themselves, to process another person’s speech or to pick up social cues.  Anything that makes the to and fro of normal conversation tricky can be hard for others to handle.  It’s simply not what people are used to.  Whether it’s the embarrassment of not knowing what to say, the fear of saying the “wrong” thing or simply lack of awareness of the person’s condition, it can be enough to inhibit or intimidate people who are not familiar with these situations.

It’s understandable, but it’s still a shame. 

It’s easy to forget the power of a word here or there, of a quick phone call or text, of a few minutes to stop in the street and pass the time of day.

Dad’s conversation is very limited now and I appreciate that can be tricky for anyone unfamiliar with his speech and behaviour.  But although Dad’s speech is poor, his comprehension is still good, as is his memory of who people are. He enjoys listening to others’ conversations - hearing about what they have been up to and what’s going on in the world.  He likes to hear me read interesting articles from the newspapers or magazines.  He likes to see people, even if he doesn’t say much.  He likes to be present in the fullest sense of the word. 

Even if someone’s brain struggles to remember who or where they are, they are still human.  They may still appreciate, or have the capacity to respond on some level, to a kind word or a smile or the touch of a hand.

So if you’re reading this and have a friend or family member for whom conversation or social situations are now a struggle (for whatever reason), please don’t give up on them.  If you’re unsure or worried about what to say, why not discuss it with their carer?  Most carers I know would far rather have an honest conversation about it than simply have people slip out of their lives for fear of embarrassment or awkwardness.  

Remember that simple things count.  Making a quick phone call, popping in for ten minutes to say hello, reading out aloud, sharing old photos or simply chatting to the carer or another mutual friend while the other person listens in. 

You don’t have to be an expert – sometimes you just have to be there.

I once heard someone describe developing dementia as akin to becoming their own ghost.  That must be hard enough, but hopefully they don’t have to become a ghost to the rest of us too.