Coming To Visit

You’re planning a visit to see a family-member or friend with dementia and you’re apprehensive. It’s been a while. How will it go? It depends largely on you – there are some things you’ll need to forget too.

Dementia Visits
Marie-Anne, Lena and Bosse two years ago - How will the visit be this time?

Bosse and Marie-Anne are coming from Sweden to visit us this week. Bosse is Lena’s brother. It’s been a couple of years since they’ve seen us, but Bosse calls regularly to see how Lena’s doing.

– I’m a bit worried. How is it going to be when she sees us?

I know why Bosse’s worried. Two years ago, I’d have passed the mobile to Lena after a minute or two, and they’d have chatted. Not for too long and in any depth any more, but Lena would have told him it was lovely to speak to him and she was fine.

But then, a year or so ago, it changed. I’d finish speaking, and offer Lena the phone.

– It’s Bosse, Lena. Your brother. Do you want to speak to him?

– Om du vill.

If you want me to. She looks at the phone and doesn’t quite know what to do with it. I put it in her hand. She shifts it to the other hand.

– Speak into it. Say hello to Bosse.

And I show her what to do, miming a phone call, then gently raise her elbow, manoeuvring the mobile to the right position. I’m wishing I’d got our house phone repaired. Somehow I think the shape and style would have made it easier, more obvious for her. But now she’s almost there with the mobile … and then she turns it upside down.

This isn’t going well. I pry the phone out of her hand and speak:

– Sorry, Bosse. Give us a moment. I’ll put you on speaker-phone, OK?

I hold the phone in front of her now.

– That’s better. So let’s start again.

– Hej, Lena.

She looks at me and smiles, but says nothing.

– Aren’t you going to say hello to Bosse?

– Ja.

Bosse tries to encourage her.

– Hur mår du? Det går bra?

But now she’s suddenly fascinated by the mobile. She takes it from me. A dim memory comes back – how you’re supposed to use these things. She swipes down. And the call is over.

Disconnected.

After this happened a few times, I stopped passing the phone over to her any more. Bosse understands. But of course he’s worried.

Our daughter Annelie is worried too. She’s been in Australia for the past two years, apart from a brief visit back last Christmas. She says she’s coming back to stay in October. It’ll be wonderful to have her back. (And I’ve got half a dozen jobs she could help me with – she’d be perfect!). But the other day she asked:

– Will Mama even recognise me when I come home?

 

Well Bosse and Annelie, here’s your answer. Yes, as you come smiling towards us through that Arrivals gate, of course she’ll recognise you. Just as she recognises anyone who greets her with a big smile. And when you give her a hug, she’ll know it’s someone really special, and she’ll give it right back. When it’s real personal human contact, not just an abstract technology-mediated communication, Lena has no problem responding. Now the words will come tumbling out, even if you don’t understand too many of them.

Will she remember your name? Probably not. She remembers my name, just, but then I’m with her all the time. And she doesn’t necessarily associate Alan the name with Alan the person.

– Where’s Alan?

– I’m Alan. That’s me. Here I am, Alan.

– Alan was here. Alan says he was coming.

– Yes he did come. He’s right here. It’s me. (Pounds chest for emphasis.)

Will she remember that you’re her brother, her daughter? Unlikely. Family relationships are all a bit too complicated for her now. In the old days she used to talk about her mum and dad a lot. Not any more. Sometimes I bring up their names, hoping that just hearing them again will trigger a response. It doesn’t. The same with nationality, place-names – all the labels we use to put things into neat categories – none of them mean anything now.

And don’t expect her to share your memories. Waves of dementia have crashed across her mind for too many years now, eroding them, leaving them fragmented, unrecognisable.

But should you be afraid? Will your visit be a terrible experience? No. Absolutely not. Not if you’re ready to embrace the Lena of today, instead of trying to make her the Lena she once was.

Memories, our shared history, that’s the glue that binds family relationships and friendships. But we’re perfectly capable of love even when the sharing isn’t reciprocal. Think about the relationship we have with our new-born baby. Or with a favourite pet. We don’t expect them to have memories – or even if they do, they can’t voice them. They don’t know the labels either – mother, father, brother, sister. They can’t call you by your name. But since we have no expectations, there’s no disappointment, no feeling of awkwardness. And as we wrap the arms of love around them, our reward is their wordless display of content.

So it will be when you’re with Lena, if you just forget the past, forget the family, forget the labels. Focus instead on the now, this time, this space. That’s the world she inhabits now – and she’d love you to join her there.

Later in the evening, when she sleeps and we talk, we can fish out our Lena memories again and share them and smile. Maybe we’ll be able to add a new memory or two – things we did today.

 

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We have an army of dementia carers all fighting their battles alone. That's no way to win a war.

Alan Miles

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5 thoughts on “Coming To Visit”

  1. Lena is in such capable hands. You write so beautifully about your experiences. I wish everybody working in this field had so much empathy.
    Love to you all. I hope you realise how fantastic you all are.

    • Thank you Ann – it’s lovely to hear from you. I’m learning as I go .. it’s just like having children really – I didn’t know what I was doing to start with then either, but you get better at it with practice. But you’re right about the lack of empathy. The way care is configured at the moment, we almost have no option but to ‘warehouse’ (as one of my campaigners puts it) the elderly and the infirm because there’s no other option. Full-time carers get worn out. And their adult children can’t help because they have jobs to go to or their own children to take care of during the day. If we can get our Bine Centres to catch on though, we could change things completely. Just changing our perspective, caring together rather than caring alone, could give us a truly caring society – at minimum cost, while improving everyone’s wellbeing. It seems worth fighting for.

  2. Lovely piece Alan. My Mum would forgot me, but I always loved seeing her and she enjoyed my company.
    Wish you had written this six years ago.

  3. Lovely piece Alan. My Mum would forgot me, but I always loved seeing her and she enjoyed my company.
    Wish you had written this six years ago.

    • Thanks Jilly. I wonder whether you have any good anecdotes to share, lessons you had to learn, anything you see differently now, to help those who are following in your footsteps today? (I’ve been writing about the importance of sharing stories in Through The Looking Glass.)

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