We live with my mum and my mum lives with dementia. That’s context for you.
I have been following all the good advice. Take each day as it comes. Deal with one problem at a time. Make a list. Set small goals.
Up to a point.
And then suddenly not so much.
I have watched her fade over the past five years. From missed beats in conversations, through frustrations and misunderstandings. Watched as she gradually winds back through memory, now residing somewhere, at a guess, in her early twenties. She knows who we are by name because she sees us everday, but the sense of relationship connection has gone. I am “the lady who helps her.” She likes us (mostly) and knows we are friends, but she doesn’t live here (as far as she is concerned) and wants to go home and wonders when her parents will come and get her. She is dependent on us for every aspect of her daily care.
Today I had a conversation with her doctor. We talk about referrals for community nursing support and to the hospice team for advice. We have been reading up on end of life care and comfort feeding. She is living off small cakes and sips of Ribena.
Life has a surreal quality, like when you listen under water. Everything is muffled, blurred around the edges, distorted. My mother will die because of her condition. While once this was a fact without much evidence, these days it is an ever present thought. Will she be here next week? In the spring?
I fall back on routines and putting on a face. I try to show up for my various work streams but my head is full of cotton wool and I am feeling too many things at once. Terrible sadness and grief. Determination to see this through and give her a “good” death. A sense of inevitability. Hope. Concern for current global issues. The excitement of some projects currently underway, overlaid with the wondering of what I will do once bereaved, whether I will even be able to get out of bed, let alone create.
Too many feelings. All at once.
People say that it is all ok. And it is all ok. Except when it’s not. Except when I wish for someone else’s life which looks easier or when I slip into memories of before. Some things once seen you can’t unsee. Some things once known you can’t un-know.
Human life is an unusual thing. We have the capacity for great creativity, for great compassion. We can take flights of fancy and create wonderful philosophical treatises. We can write novels, invent recipes and send spacecraft to Mars.
All while wrapped in a bundle of organic matter which grows and changes and ultimately fades to nothing, like autumn leaves.
This is the great paradox. To embrace life while staring down the knowledge of our own death. This is the great journey, to burn brightly for our time, and then let go.
Some days I am full of ideas, I was writing two books but for now they are stalled. I cannot imagine that there will be a time when they could be complete. Or maybe I can imagine that time but as Mum won’t be in it I don’t want to finish. Even if I do finish while she is alive she will never, now, know what I did or why that might matter to her.
Such a strange thing this journey. So slow.
And then suddenly hilarious, she is playful, or silly, or downright rude and chuckles uproariously. And for a moment we share the joke. You have to laugh at death. I think Death encourages us to this. She reminds us that our mortality is given, and that we must not take too earnestly something we will have to give up. She asks us to play with this time, to savour it, but not to hold on too tightly.
To feel all of the feelings at once, to revel in the messed up magic of it.
One breath at a time.