All the things I wish we’d said

I was adamant that I would NEVER start quilting, after some fairly average attempts to make my kids a baby quilt each. Those quilts took years to make and a whole lot of work! Combine that with my difficulties with straight lines (cutting, sewing …) it all seemed like it was just not the thing for me.

But a friend convinced me to go along with her to a Modern Quilt Guild just to check it out. Despite my determination, I was won over from that first meeting. Modern quilting is so fresh, and different from my preconceptions of quilting and quilt design. Some inspiring quilts, and some small learning projects later, I decided I wanted to make a quilt. A real quilt.

I had been pondering making a quilt for my mum. She is in the end stages of dementia and is in a nursing home now.

There is nothing much I can do for her now.

I received unexpected bad news about her condition, and how short a time she has left. I was

devastated. Suddenly, a quilt for her became an urgent project with a deadline!

Mum can no longer understand what I wish I could say to her.

I can’t ask her about the mothering stories, her stories, I’ve never heard.

I have so much sadness for the conversations we never had, and now can never have. And so many things I wish I could say sorry for. There is so much regret, and sorrow for so many conversations that I wish I could have over – the ones where I spoke wrongly, and the ones we never had. I wonder too if there are also things she would say if she could.

I figured I could make her a quilt to keep her warm, and which she can cling to in her bed. Maybe I have been making it for me. For therapy.

I wanted to use colours that mum loves. So I chose the colours of peacocks: blues, turquoise, teal. Mum never liked much perfume, but she did love lavender. So I chose a set called “Horizons” by Kate Spain for Moda. I loved the designs, which reminded me of Moorish tiles I’d seen traveling in Spain years ago. More importantly, I felt the name Horizons was meaningful for mum too, conjuring up images of the deep, ever-changing blues of the sea, on the south coast where she grew up; images of the horizons that she gazes at lost in a world we can’t imagine, now that she can’t see us so clearly; the horizon of the end of life nearing, looming large, as it was in the Voyage of the Dawn Treader (Lewis, 1952), when Reepicheep so bravely goes on, and we hope mum sees the brightness beyond.

The pattern evolved from a combination of sources, and the details are described in this blog post (put the link here), where this was first published, please follow the links if you’d like to know more!

To complete it, I ignored everything else I should have been doing (house, children, husband!), so it was much quicker than my quilting projects have ever been! (I say projects, but really, using the plural is being generous!!). I think I needed to, at that point in my grief.

The journey through dementia has been difficult. I look back now and am better able to recognise the signs of the beginning. But back then, we didn’t realise. I grieve so much for my mum, for how confused, and lost she must have felt. I sorrow so much for how much my frustration at her behaviour must have exacerbated that for her.

Oh how I wish I could go back and comfort her in her confusion, comfort her when she felt lost and afraid.

For now, I have been able to give mum a quilt.

I have been able to hope it brings her some comfort. That she senses the softness of the fabric, as her fingers seek to something to which to cling, maybe clinging to things gives a sense of surety in a world where everything is confused.

I hope she smells the fragrance of me in the using of it, like our babies smell us and feel safe.

For now, I give her cups of tea, because she’s always loved them.

The end draws closer, but while she still lifts her head to sip the tea, I know she’s here for a little

longer yet.

I try to fill her room with lovely things, things for the senses, things that bring delight, but don’t

need to be understood. Things that bring delight even if they are dim: things to flutter in the

breeze; glimmer in the sunlight; lavender to scent, creams to soothe, and lanterns to light the dark. For now, I speak gentle, happy words, to make her feel safe and loved. And ask her forgiveness for the things I didn’t say, and for the wrong things that I did.

I hope that my presence when I am there comforts her, and that she doesn’t feel the loss when I have to leave.

I try to assuage the guilt of not being able to visit her more, in her final days, like everyone juggling children, and work, and life, and not living close enough to be with her enough.

If I am blunt, dementia has meant a slow death for mum, and a slow grief for us. She hasn’t gone yet, and while there is life, it is so, so precious to us. But we grieve for her pain and confusion in this body as it fades away. And we grieve because the mother we had is lost to us, and already, it’s hard to remember who she was, because dementia has been stealing her away from us for many years.

And oh, all the things I wish we’d said.

How I wish I could go back and do it over again.

Isn’t that how we all feel when confronted with grief, with our sin, with death?

I think we are supposed to, because sin and death were never part of the plan.

And unless we are confronted by them, we never see how real, and how terrible they are. And how much we need God, and all he has done for us through his Son.

If you are walking the path of dementia with a loved one, please know you are not alone.

I haven’t got noble answers for this, but I have to trust that God can somehow knit together

something good from this. That he can redeem the brokenness of his servant. Justine is married with 2 gorgeous kids (7 and 4) who are the joy of her life. She is a primary school teacher and currently has the privilege of teaching Languages which she is absolutely passionate about. You can read more from Justine here