In Car Parks and Carer’s Groups and on Dementia Sites – the people who notice

It is a hard thing to leave your babies for the first time for someone else to feed and put to sleep. Do you blow them a kiss and hope for the best or do you fill sides of file-paper with instructions and coloured headings?  You don’t want to be a nut, of course not. You don’t want to offend your “I brought up 5 kids I think I know what I’m doing” mother-in-law, no, you just do not. You don’t want to annoy anyone, ever, but here you are with your coloured pens and your “one more thing” and your desire to be breezy and laid-back is up against the fact that you’re finding it a hard thing. It’s a hard thing because you know this little baby inside and out and this particular one sleeps like this, and not like that. There are a few keys to a happy little life for her and it’s hard to pass her over to someone who might not use them.

And it is a hard thing for the parents of a special-needs child to leave their child all day at school with staff that do not know them inside and out. Do they blow them a kiss and hope for the best or do they sit down on the first day of term with their Basildon Bond and with “Dear Teacher,” and pen paragraphs and paragraphs of everything we might need to know.  They don’t want to be that parent, of course not. They don’t want to offend the “I’ve been doing this job for 40 years I think I know what I’m doing” teacher. But it’s a hard thing because their child needs this, and their well-meaning teacher has always done that. It’s hard because their child’s anger, or anxiety or distress has been caused by good intentionsby cheery, by one-size-fits-all.  It’s a hard thing because, yes, there are programmes and initiatives and equipment and resources, but no guarantees that we will NOTICE and UNDERSTAND and ‘GET’ their  child with their particular, unique, beautiful  and challenging needs.

And it is a hard thing for the husband or wife, or son or daughter to leave their beloved family member in a ‘home’, that is JUST. NOT. HOME. 

Do they blow them a kiss and hope for the best or do they sit beside and add to and speak up and advocate for their care, time and time again. They do not want to be a nut, of course not. They don’t want to offend the “This is how we do things here” staff, or their “But sure they’re in a home now” friends. They don’t want to annoy anyone, ever, but here they are with their post-it-notes and their instructions, with their “can I please talk to you about…”, and their “she needs it like this”, “he can’t see that”, “she can’t use those”, “he is afraid of …”, “she doesn’t understand ….”. Here they are writing, and telling and showing daily: This is who he is. This is what he needs.

They never used to like to annoy anyone, ever. But caring for dementia, or parkinson’s or motor neurone has given them the insight and the knowledge to say with their gentle voices “This is not good enough”. It has given them wisdom that goes unnoticed. It has made them givers-of-good-advice that isn’t listened to. And so they advocate, and demonstrate. They wonder, again, if maybe they are nutty. They don’t want to be that relative. Are they that relative? No. They have insight and knowledge now. They KNOW alzheimer’s or lewy-body, just as they KNOW their wife, or their dad. They are people who notice, but who notices them?

It is a hard thing to leave your beloved family member into a home, but harder still to keep finding it hard. When the question is always “Has your mum settled yet?” and you just feel like everyone wants you to say “yes”. When you can’t really answer how you are, or how they are.

It is a hard but powerful thing when these relatives find their gentle voices to try to answer. Or when they use their gentle voices to ask each other the right questions. It is a healing thing when they find each other at carer’s groups and on dementia sites and in the car-park. There is the relief of “me-too” in a late-night chat in the nursing home lounge, or over lunch at Marksies, or in the pages of a book. With their gentle voices they give each other permission to feel all of this. Permission to not want her dad to be misunderstood. Permission to not want impatient or careless in the care of his mum. Permission to grieve that he can no longer keep his wife at home. 

If you were going to babysit for me I would want to say “here’s the important info, please honour it, it will make them happy, and you happy.” If I was going to teach your child I would want to say “please write those letters and phone and scribble in their diary, I will read and listen, I will try that, I’ll remember they’ve had a rough weekend.” But, most of all, I want to say “notice the people who notice in our nursing homes. Honour the grief and the love and the beautiful care of those sitting beside parents and spouses and friends. Notice the old lady (the one everyone thinks is a nuisance) who so gently and intuitively settles down her agitated friend. Notice the elderly husband slipping into the kitchen to make sure his wife’s tea-pot gets warmed. Notice the lady on her way home from work, who called in to rub cream into her granny’s hands. Give thanks for the nurse who knows about dementia, who listens, who writes down, who passes on, who stands in the right place and says the right words. Celebrate the care assistant who gives the proper cup, and brushes off crumbs, who holds hands and takes time. Support your friends adjusting to moving relatives to nursing homes. Expect it to be hard and not fine. Ask them something that has an answer.”

It is a hard thing to leave anyone we’d rather look after ourselves. What if nobody notices_________ ?

I want to be someone who notices.

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9 thoughts on “In Car Parks and Carer’s Groups and on Dementia Sites – the people who notice

  1. Nail on the head monster…it is absolutely beautiful and so true and so hard as the carer/teacher/babysitter to always be gracious and remember how hard it is for the loved person leaving their precious loved one in the care of someone else. Can I share this on fb? I absolutely love it.

  2. A beautiful and insightful post. And I should really know by now that I will cry when I open your blog. We need people to be attuned to us as we grow up and grow old.

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