about writing and life and God

Dementia Diary 22: In this together

on November 19, 2012

They’re everywhere. Folk with loved ones – parents (usually mothers or mothers-in-law), spouses, older brothers or sisters – in residential care. And the largest percentage suffer from dementia of one form or another.

It’s like a 1960s spy film.

Mention the password (dementia or care home), and the other party nods and launches in to their story. This happens in shops, with the assistants as well as other customers joining in! It happens in cafes, the doctor’s surgery and the dentist’s. The hairdresser’s and the post office queue. Today, the nice lady supervising my husband’s annual retinal check was telling me about her mother…

There’s a lot of it about.

But you don’t find out about it till you start the ball rolling. It’s still a very private thing, despite being nearly everyone’s experience.

And that’s a pity because we’re all amateurs, all beginners in this. The professionals don’t really share their expertise. We’re the ones with the real nitty-gritty knowledge and it would be great if folk would be more upfront and share!

I think the pink ribbon that shows support for breast cancer sufferers and research is a good idea and I wish we had something we could wear – something discreet that would flag up to others in the know/and in the same situation. Then maybe we could have more conversations. Learn those hard-earned tips.

The tip for me today was about staff in care homes. Don’t get cross or distressed because the staff member you’ve spoken to doesn’t seem to be well-informed or bothered. They can’t all connect with every resident. But there will be at least one who has made a real connection with your loved one. This is the person you need to seek out and keep in touch with. She or he will then be your main contact, who will keep you informed, reassure you. You can talk to them.

I found this enormously reassuring, especially as I know there is someone special at the care home where my husband lives who has made that connection with both of us and I’m very grateful for her and to her.

But to return to the idea of a badge/a signal to others in the same boat. What would be appropriate? I can come up with a few very unsuitable ideas (and no I won’t share them!). Any ideas?

The text: “And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.’ 2 Corinthians 1:17

The prayer: We know we’re not alone, Holy Lord. You care for us and You have promised to be with us, closer than breathing, if we will only turn to You. Help us to turn to You and keep turning to You!

Self-care suggestion: It takes a lot of courage to start these conversations and you do take the risk of meeting blank faces and zero empathy. But more often than not, I find I’m talking to someone in the same boat who is relieved to be able to talk to someone about it. We’re the only ones who really understand – so gird the loins and when the opportunity arises, say something low-key and quiet that ‘gives away’ your situation. Then award yourself mega brownie points for doing it – whatever the reaction!



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