The dreaded week has come and gone. These are truly sad and sore times.
9. To See You Again. We went to the undertakers to view my moms body. My dad wanted to be sure it was her in the coffin. I wanted to have a chance to cry without a room full of people. We opted against embalming and two weeks had already passed, so we weren’t sure what to expect. She looked so thin, but healthy. Her hair was soft and brushed. She looked lovely. In life she often abstained and followed certain habits because she wanted to be a beautiful corpse. She sure got her wish.
10. Funeral day. Informal, no priest or stranger leading the ceremony, just me. Leading the family in words, in song, in placing lilies on the coffin. A lot of tears. And after, lunch with every person she knew in the country there.
11. Driving day, all the way to Wales at the foothills of Snowdonia. And a big thank you to everyone who has supported me over the last few weeks.
12. Bittersweet. Knowing she was meant to be on this holiday with us, was bittersweet. Knowing how much she would have loved the mountains, equally so.
13. Bed Hogs. A king size bed, and there’s still no room for me. Sigh.
14. Garden Decor. Some weird garden decor in the town of Machynlleth. Certainly a talking point!
15. Mountains, Gandalf! Mountains! I could take a picture of this mountain every single morning and it would never look the same two days in a row. If I lived there, I’d totally do that. With a timer to go off every day at the same time. It was an exquisite view.
If there was a soundtrack to my life, the last week or so would have a ghostly echo pounding through a driving bass line. The ghostly echo would say one word, over and over again: “Mindful, Mindful, Mindful”
My mother will tell you I’ve always believed that we have the ability in ourselves to change our thoughts, and from there, to change our actions. When I was a child she went through a phase of calling herself stupid a lot. I believe in the power of words, so whenever she called herself stupid, or said she’d done something stupid, I’d hit her really hard with my fist on her shoulder. It became Pavlovian. She’d say stupid, I’d hit her. She soon stopped calling herself stupid, at least in my presence.
While I don’t advocate for violence, and would choose a different approach tthan physical assault these days, I still believe that our thoughts control our actions and with it the outcomes in our lives, and our minds can be trained to control our thoughts. I’m sure there’s a whole movement behind this, but I’m not familiar with it. I simply think that we can train our minds by conscious, mindful, choice.
If Ameli is acting up, the soundtrack in my head says, ‘Be mindful’. My husband and I aren’t communicating well? ‘Be mindful’. My diet is entirely desire led and not at all healthy? ‘Be mindful’. And so the ghostly echo in my head repeats, repeats, repeats.
But what does it mean, in my day to day reality?
Why do I feel like I’m drowning in things to do, yet when I have a spare moment and want to tackle one of those things, I can’t seem to figure out where to start? Why does it seem that my interactions with the people in my life are stressed out, highly strung, and impatient?
Because I am not being mindful. I am not making conscious choices. I’m being led by pregnancy induced insomnia. I’m being led by financial stress. I’m being led by the sadness I’m desperately trying to avoid: we’re coming up for Christmas and I have none of my family to share it with. I’m like a bull with a ring in its nose, being pulled from side to side by all these ‘things’ in my life.
I have lost sight of my mindful, conscious self.
I know what to do when my child is seemingly being ‘disobedient’. I need to focus in on her, rather than shout for control I give away by shouting. I know what to do when my husband is being husbandish. I need to focus in on his needs to see where he is being unfulfilled. I know that when my house looks like a hurricane passed through, it’s time to focus in on short bursts of major action.
I know these things, but while my head is screaming ‘what’s going on?!’, I’m unable to be useful to myself or my family, and over a period of days and weeks, I wake up more tired than I went to sleep and find myself in a rut. A dangerous, frustrated, unhappy place.
You may say, yes, but your child is being a ‘terrible two’, your husband is being ‘husbandish’, and you’re carrying all the responsibility of running a home while being pregnant you need to be selfish and think of YOU, shut the door and leave them to self-destruct.
But that is counter productive, isn’t it, because an hour later, when I open the door, the problems are still there.
Yes. Perhaps the best course of action is to find yourself a corner for’quiet time’. For some this will be reading your Bible. For some, time in prayer. For others, meditation, introspection, yoga. Whatever it is, but finding your ‘peaceful place’ gives you – or at least gives me – the power to then confront in a peaceful way, my family and my home. And you can find that peaceful place in the two minutes it takes to walk to the car, screaming toddler in tow. Your peace doesn’t depend on circumstances, or other people. It is yours. It is mine. I just have to claim it.
I am then able to implement ‘time-in’ instead of ‘time-out’. I’m able to connect with my husband. I’m able to focus on my to do list and find it less overwhelming. I am able to enjoy Christmas lights and hear carols and see men in red suits and feel the tinge of pain and of longing, without letting it own me and decide my emotions, and with it my interactions with the people I do have in my life.
My mother always used to say a tidy head loves a tidy home. I hated that saying, because my room was never tidy and in retrospect, neither was my head, but now I see it in a greater sense.
Being mindful of our own human condition helps us ‘make it through’ with much more peace and calm. When I am calm, I exude calm. When I am calm, I create calm. When I am at peace within myself, I have more patience to deal with my family.
When I am conscious of my own self, I am able to be conscious for those around me without being a martyr to their needs.
Mindful… Mindful… Mindful…
This doesn’t mean it will all always go well, or always be easy, but it means that you – that I – will have a better grasp on life, and with it, a better experience of that life.
(This post first appeared on Diary of a First Child on December 13, 2011)
We – I – made the decision to keep my mother at home and out of a hospice as long as possible, so that during her ever more fleeting lucid moments she could have her children and family around her. With this decision came the responsibility of caring for her. While we had amazing NHS nurses come in daily to administer a cocktail of medications for the pain, we bore the brunt of the responsibility for making sure she had food when she could, something to drink when she could – or just wetting her lips – and then holding her hair, pressing her back, and cleaning out the sick buckets after every.single.sip she took was brought up again.
When we weren’t massaging her back (where the tumour was causing organs to become displaced), or holding her hair, or towards the end holding her up, we were sitting with her, making sure she didn’t choke on her vomit, stop breathing, or have any other needs that would not be met if we left her side. It was constant, and whoever was ‘on duty’ was constantly on the go.
During this time I remembered reading once, in an article I can’t even begin to think where to find, about the ‘circles of trauma’.
Circles of Trauma
The idea of circles of trauma is simple (and I could be totally butchering the original idea here, but this is how I remember and essentially then adapted and applied it in our situation – where I must add that because our family is scattered over three continents, our circle differs slightly to most. Also, my maternal grandmother would have been in the circle with my dad, but she is on another continent, so while supporting her is as important, I have focused support on those in the room, so to speak):
There is a person at the centre of the trauma. In this case, my mom.
The next person, the person closest to the person at the centre is my dad. My dad’s biggest role, the one he fulfilled amazingly well, was being there to support my mom. You can add parents to this circle too.
Next closest person – people, in this case – were my sister, my brother and my self. I suspect normally you could add the brothers and sisters of the person at the centre in this circle.
And so the circles get bigger and bigger and bigger. My husband and the girls, then distant family, then friends and so it goes.
The Value of the Circle of Trauma
The way the circle should work to work well is that you ‘support in, offload out’. So, by identifying your place in the circle, you can figure out who you can rely on versus who you need to support. In my case, my dad and my mom needed my support (and to an extent my brother and sister – I put them towards the inner edges of our private circle, since I’m the oldest). If I needed to cry, vent, be angry or moan about anything, I did it outwards. Talking to my dad about my grief, when his was going to be so much greater, seemed almost selfish. Speaking to my husband or friends didn’t feel like I was burdening them. Support inwards, offload outwards.
It’s so easy in our grief to place ourselves in the centre of the trauma – and in each individual case, we are the centre of our trauma and for that we need our own circles of support within a greater circle, but the fact remains that the true centre of the trauma is the person the bad thing is happening to. We can be the centre of our own trauma heart ache in our own time.
I’m sure we’ve all seen it happen. Person A has an incident. Person B is there for support. Person W somehow makes it all about them. Well, Person W doesn’t know their place in the circle of trauma, and is really just causing more stress and grief for Persons B, C and D.
It’s a funny thing. I don’t remember where I read about the circles but it came to me, clear as day, while sitting talking to my dad one day. I needed to be the support for him, and find my support elsewhere in the circle.
While as a family we all support each other, some friends are closer than family. They moved into the inner circles. Colleagues might be devastated, but they are not as devastated as family, they move outwards. You can’t be all things to all people. I found so much value and focus in finding my ‘place’ so I knew who needed me, and who I could prioritise further down the list.
The circles also give you a hint on who to look after. If the person closest to the centre is being the support system for everyone else, it’s safe to assume they are not meeting their own needs (in most cases) and will need additional support when the reality hits them.
As a wife and a mother, the circle can only be exclusive for a short time, then I needed to open up to and include and prioritise my own family again, but in the grief, in the trauma, and in the days that followed, I am so grateful for this idea of the circles that really helped me narrow down my centres of attention while dealing with terminal illness, palliative care, and death.
One day I sat in an adjoining room to where my husband and daughter were. I didn’t know particularly what they were up to, but at one point, a full few minutes of the ‘conversation’ was her Daddy saying ‘No, no, don’t touch that. No Ameli, put that down. No, no, I said no’ and so on.
I became conscious of how often we were saying no to Ameli and discussed it with my husband. At first he didn’t really think it such a big deal, but he must have become conscious of it, as he started pointing it out to me when I was doing it too.
We began to realise how difficult it really is to exclude ‘no’ from your vocabulary once Ameli started walking, unpacking things from cupboards, and generally expressing her independence.
It wasn’t until Ameli one day did something she was allowed to, then looked at me and shook her head that I realised that it did have an effect on her.
So we started making a few changes to the way we ‘do’ things.
For a start, we moved things that shouldn’t be in her reach – glasses, plates, important papers. If they’re not in reach, there’s no need to tell her not to touch them.
We tried to distract her, or deflect her attention from things she wants but shouldn’t have. She wants to play with a glass, I remove the glass, but instead of saying ”No, don’t play with the glass”, I will take the glass and give her a toy and say, “Let me take that, and you can have this.”
We change the words that we use to attempt to be more positively reinforcing, and making her think about her actions, rather than constant negatives – “Do you think you should be playing with that?””What do you think Daddy would say if he saw you unpacking his drawer?” “Are you sure that’s where those go?”
If she’s done something already before we could stop her, such as unpacking the dirty laundry basket, I stand by her and we repack it together, saying something like “Okay, now we need to put everything away again… come on, in the basket… that’s right… thank you for being helpful”
If she asks for something – and by asks I mean she comes, takes my hand, takes me to what she wants, holds out her hand and says ‘Ta’ with a rising inflection on the ‘a’ (very cute!!) – and it’s not something she can have or do, I will state what she wants, acknowledging that I’ve heard her. For example, “I know you’d like to climb the stairs, but Mama is working now. Why don’t you play with your book and we’ll climb the stairs later?” At her age (13 months), she doesn’t understand a word of it, really, but I will then pick her up, grab her book, make a comfy spot somewhere for her to sit and hand her her book, open a page and point to something on it to help her engage with it. So far, that seems to work.
I have found that since we have embarked on phasing out ‘no’, it’s impact has become greater too. Recently, Ameli ran along a patio, full speed towards the edge yet not looking at it. I yelled ‘NO!’ and she stopped dead, looking at me. I was able to walk over to her, take her hand and show her where she was headed. I honestly believe she got it, as she put her arms around my neck, and let me lift her down.
If we see our children as people, we can understand the frustration of constantly hearing ‘no’, generally because parents are too busy, preoccupied, or tired. If I heard ‘no’ all the time, I’d be frustrated too. If all children want is to be heard, then confirming we’ve heard them before giving them our decision should make that decision easier to accept – not because they like the decision, but because they can see it’s been considered and understood, rather than just a knee-jerk response. And anyway- if you say ‘no’ all the time, they just tune you out in the end!
So, yes, I’m holding my hand up. I might be getting this totally wrong. Perhaps I’ll turn out with a child who knows no boundaries, defies every limit and is thoroughly disobedient. It is possible. But my hope is that in positive instruction, providing alternatives and causing her to think from this young age, not only will it give me time to ‘practice’ and break free from the in-built ‘no’, but it will allow her to grow up as an analytical person aware of her decisions and choices, conscious of her actions, free to explore and ready to take on the world without fear.
How about you? Have you found alternatives to ‘no’ or do you think that’s a step too far?
My mother and father came to England to visit us for a holiday. Her cancer was in remission, miraculously and it was time to visit the grand children she loved so much. We were all so very excited. I’d planned visits to Santa’s grotto. A Christmas Train ride, visit to a Christmas through the ages exhibit. I bought a huge Christmas tree. We had things planned for every day. Winter Wonderland. Fairytale Wander. A visit to Pooh Corner. So many plans.
The hospital arranged a hospice for my mom in the next town up from ours, but also said she could come home while she was ‘well enough’ to do so. There would be community nurses that would come round daily and check on her, and refill her morphine driver.
The decision would be mine, my mom said – my home, my children, my choice. I felt strongly that she should be home with us and that we would send her to a hospice when she was no longer able to go to the toilet on her own, or we felt that we were no longer able to cope. But I believed that while she still had awake and lucid moments, her place was with us, in our home, surrounded by the noises and sounds of her family.
I was mainly surprised by the questions from especially people in the healthcare profession. You know your mother could pass at home? Yes. How old are your children? 4 and 1. Are you okay with having them in the house? …
Where else would I have my children?
I stood in the living room speaking to one of the community nurses and pointed to the floor to her right:My daughter was born here. It seems only fitting that life should end here too, I said, pointing to the very same spot, but upstairs.
We are so far removed from death in our culture.
Like birth, it is something that happens somewhere else. It’s something that is cleaned up and swept away. It’s something that’s dealt with by a professional, someone with experience, someone else. Yet another taboo.
My mother’s last moments occurred at 1:17 in the morning. If she’d been in a hospice, I would not have been there. I would not have woken up, gripped her hand, and told her I loved her as she gasped her last. None of us would have. Her grand daughter would not have been there to give her the last goodnight cuddle before going to bed.
When the nurses, who happened to turn up moments before the end to give some top up pain medication, declared that she was, in fact, dead, I sent my husband to the kitchen for the herbal poultice I had made earlier that day, hoping it would have some weeks to steep. My sister and I washed our mother’s body, cleansing it for one last time – oh, she did so love to be clean – before removing her nightie and putting a new one on her. Ritualistic body washing is normal in so many cultures, even deeper cleansing than what we did, but in ours it isn’t. We are missing out. It was beautifully therapeutic, healing, almost.
In the two weeks since, Ameli specifically (at four years old) has been through a series of emotions: she’s had separation anxiety.
She’s cried at random moments, whenever it’s been quiet. She’s role played death and dying and we’ve had to let her get on with that, knowing that she is processing, dealing. We’ve had questions upon questions too – but we’ve answered as far as we could, as much as we can.Being many hours before dawn on Boxing Day, we had a long wait before the doctor could come out, and then later the funeral directors, and my husband was adamant that the children should not see their still and lifeless grandmother.
I wasn’t as sure, really, but he’s been so supportive in everything else, I let it go. Once the room was empty again, however, my husband and I took the children into the room. Aviya pointed at the bed and said ‘Nana?’, but Ameli seemed to understand what the empty bed meant, and both girls cried, we cried. We have all allowed each other tears.
My mother’s funeral is tomorrow. A simple cremation, because she doesn’t really know people here. I’m looking forward to having a little bit of closure. It will be years yet, I’m sure, if ever, before we really move on, but at least we can have a little closure.
Do I have any regrets about choosing to bring death home? Not one. Beyond the fact that my mother should have lived much longer than her 54 years of life, the fact that she died in my home, in my arms, in the room next to my sleeping children? No, I wouldn’t change a thing.
Ah, the joy of having two girls. Or two children. I’m not sure if gender makes a difference here, but sharing … oh sharing. That bastion of kindness and sisterly love. I jest. But most of the time, my girls are actually pretty good at sharing and taking turns, and more often than not, when there are issues, it’s because the youngest – Aviya, aged 21 months – has upset the balance and won’t share.
It’s easy to immediately call out Ameli – aged 4 years 3 months – because she’s the oldest, and she should know to share. And generally, Aviya shouts the loudest. Of course, when you take the time to notice ‘who had it first’ it turns out the culprit changes with the occasion. I often feel like a game referee!
The book “Mine” arrived here a few weeks before Christmas, and went straight into the cupboard waiting for an opportunity to be read, and today, a quiet, rainy Sunday became that day.
Mine, written by Sarah Hammond and illustrated by Laura Hughes, is a story about a little girl, Kitty, who plays at being a ‘cafe lady’. Her friend Lea comes to visit, and to be fair, is a bit loud and bossy, and soon Kitty doesn’t really want to play with her anymore, hiding all the cafe foods and guests in her tent. But, oh no! hiding away in the tent, Kitty and all her (stuffed animal) friends are feeling miserable. When Lea asks if she and the farm animals can join them, Kitty suggests an indoor picnic, and Kitty, Lea, the cafe guests and the farm animals enjoy a fun afternoon and share the cakes Lea brought with her.
The obvious follow on for that is to create a little tea party for ourselves, which is just what we did.
It’s lovely when you can talk about taking turns, sharing, the end of fun when you’re not able to share nicely, and then take turns being the ‘cafe lady’. The nice thing about stories and role play is that lessons that could seem tedious on paper, (Take turns being the shop keeper. Discus the value of sharing or taking turns. Talk about paying for what we eat in the cafe. Bring in money, cost and change – light math) all transfers very easily and without effort in play.