SIDELINED?

About a year ago, we were introduced to an English couple who have since returned to the UK.  He’s in the advanced stages of AD, restricted verbally but, when given the chance, still able to enjoy himself socially.  She’s his highly competent and loving wife and carer.  We had some good chats and I often remember her telling me the time would come when we would be ‘left out’.  I knew what she meant because I had experienced that with my first husband, Terry, who was brain-damaged in a car accident.  Once home from hospital and trying to restart our lives, we soon found we were considered socially ‘difficult’.  It was very distressing and I lost a huge chunk of faith in various friends, or should I say ‘ex-friends’.

NOT INVITED

Last week, when chatting to a girlfriend, I learned about a 70^th birthday party to which we hadn’t been invited.  I was shocked.  The person concerned had attended several of our significant parties and always appeared to like us both.

Initially I was very hurt, then angry and now I’ve tried to analyse why we’d been excluded.  I know I’m going to have to get used to this sort of thing again, so it’s important to understand why people react the way they do to our predicament.  It’s a sad reflection of our world that the mentally handicapped can bring out the worst in some of us.  I call it the worst because I’m a firm believer that we should be pulling together to support those people, particularly friends, who may be dealing with very difficult situations.  Nonetheless, I try to empathise with others and have come up with the following reasons why those whose brains aren’t working as they should aren’t as socially welcome as they might have been in the past:

HIDING FROM DISAGREEABLE FACTS OF LIFE

• many of us, possibly without knowing it, are scared of those whose brains aren’t functioning properly. After all, God forbid, we could go the same way
• they’re a reminder of getting old, getting sick and eventually dying
• at parties and dinner parties, they might embarrass us or our guests by saying or doing something inappropriate
• they’re likely to be very boring repeating the same old stories in painful detail
• they may not communicate at all, just sit and grin inanely, this can make some people feel very uncomfortable
• they may behave badly and upset the ambience
• they may drink too much and pass out
• we may find their deterioration too depressing
• we can’t be bothered to make that extra effort
• we’ve had a loved one in the same situation and don’t want to be reminded

and there are probably other reasons.

TOO MUCH

To add to these, Leaf and I don’t eat meat or dairy and that can be a big problem for some, even though they’re more than happy to eat whatever I cook but, for whatever reason, they’re not prepared to make the necessary effort themselves.

Another possibility that could explain all of the above may be that they don’t like us, or one of us, very much.  Certainly not enough to go out of their way to accommodate us, fully functioning or otherwise.

Of course we have some friends who are marvellous, who understand and are quite prepared to cope with whatever untoward situation or inappropriate behaviour may be involved.  They’re the salt of our broken communities, those who extend a welcoming hand to all, regardless of their ailments or idiosyncracies.  More often than not, they work or have worked with children or have been in the caring professions.  They usually have a good sense of humour, are very capable and, most of all, kind.

THE BEST POSSIBLE EXAMPLE

It would be unhelpful if I were to end this post without suggesting some ways round this problem for people who wish to hold out a hand to us or others in a similar situation:

• invite those with a mentally handicapped partner, or family member, on their own or with another couple you know would be able to deal with the situation
• if you’re having a party, send a tactful invitation asking if it would be appropriate. It’s good to at least be asked
• drop in on them sometimes – the kettle doesn’t take long to boil
• suggest they might like to join in on an outing
• engage the disadvantaged person in conversation even if you don’t get very far
• show affection – a hand on the arm or shoulder is hugely reassuring

PHYSICAL CONTACT IS GOOD FOR US

I need to add here that whilst personal phone calls are welcome, I rarely have the opportunity or the privacy to spend time having a meaningful conversation.  With Leaf invariably in the room with me, I can hardly talk about him.

As we go forward on our long and increasingly painful journey, it would be good to feel we won’t be left by the wayside wondering what happened to some of those people we had good times with in the past.

 

THERE ARE TIMES WHEN WE ALL NEED IT