The loneliness of the dying.

by frogpondsrock on July 19, 2012

in cancer,Family,Grief,Love and Loss,Sadness

I have been thinking about death and dying a lot this week. As the birth of my newest grandchild rapidly approaches, thoughts of my mother fill my day. My mother had a good death, if there is such a thing, she was surrounded by her family, we held her hand and I was the one who told her that it was okay for her to leave us. In the moments before she died Mum reached out for her own mother and Nan held mum’s hand as we all told Mum that everything was going to be okay. We lied to her of course, as it was never going to be okay for mum to die from a cancer she should never have contracted. But you do what you have to do at the time.

My Mother died at ten past two on a Wednesday afternoon. Time became a fluid thing and everything slowed down, my world as I knew it had just changed irrevocably, though it took me weeks to realise just how much had changed.

The author Sara Douglass died from Ovarian cancer in 2011, Sara Douglass had a blog which has since been taken off the interwebs. The loss of Sara’s blog makes me sad that we have lost such a thing of beauty, it also reminded me to make sure that my blog will stay online after I die. When Sara was dying she wrote a post titled “The Silence of the Dying” I discovered  this post  after my own Mother had died and Sara’s word soothed me. I have included excerpts of Sara’s blog post here, it is in italics.

“Many years ago I did an hour long interview on Adelaide radio (with Jeremy Cordeaux, I think, but my memory may be wrong). The interview was supposed to promote one of my recent publications, but for some reason we quickly strayed onto the subject of death and dying, and there we stayed for the entire hour. I proposed that as a society we have lost all ability to die well. Unlike pre-industrial western society, modern western society is ill at ease with death, we are not taught how to die, and very few people are comfortable around death or the dying. There is a great silence about the subject, and a great silence imposed on the dying. During the programme a Catholic priest called in to agree with the premise (the first and last time a Catholic priest and I have ever agreed on anything) that modern society cannot deal with death. We just have no idea. We are terrified of it. We ignore it and we ignore the dying.”

Sara’s words soothe me because the one thing that Mum, Veronica and I had not done was ignore the fact that Mum was dying. We three talked openly about Mum’s impending death,  Mum and I went to a funeral home together and we went through the motions of  organising her funeral in advance. Mum decided a few days later that she didn’t like the funeral director there very much and confessed that she had only chosen that venue because it had good parking. Mum was an atrocious parker and would drive around and around the block looking for an easy park. We giggled about her practicality, even in death, and decided to go with a smaller alternate venue because it wasn’t as if mum would have to do a reverse park in a small space herself.

When a loved one is dying, you notice that your friends and relatives very quickly fall into two groups, those that “get it” and those that do not. Those that get it are the friends that have experienced proper grief themselves, not the artificial grief of losing a favourite shoe, but the deep bone numbing soul sucking heartache of  black grief.

Some  people were fantastic and some hid from us in the supermarket. I still haven’t properly forgiven the hiders.

…. we ignore death. We shunt it away. Children are protected from it (and adults wish they could be protected from it). The dying are often not allowed to express what they are really feeling, but are expected (by many pressures) to be positive, bright and cheerful as ‘this will make them feel better’ (actually, it doesn’t make the dying feel better at all, it just makes them feel worse, but it does make their dying more bearable for those who have to be with them).

My friends mother, Marlene, also strongly counselled me to listen to my mother when Mum wanted to talk about her impending death, as Marlene had put on a cheery face when her own mother was dying and 30 years on her regret was palpable.

When it comes to death and dying, we impose a dreadful silence on the dying lest they discomfort the living too greatly.

Death should be silent. Confined. Stoic.

Sweet, stoic and silent was the way to go. (Again I remind you that a sweet, stoic and silent death is still praised innumerable times in today’s society; by the time we have reached early adulthood we have all heard it many, many times over.) The one exception is the terminally ill child. Terminally ill children are uncritizable saints. The terminally ill adult is simply tedious (particularly if they try to express their fears).

All this silence and stoicism scares the hell out of me.

In that radio interview many years ago I spoke as a historian. Today I speak as one among the dying. Two years ago I was diagnosed with cancer. Six months ago it came back. It is going to kill me at some stage. Now everyone wants a date, an expected life span, an answer to the ‘how long have you got?’ question. I don’t know. I’m sorry to be inconvenient. I am not in danger of imminent demise, but I will not live very long. So now I discuss this entire ‘how we treat the dying’ with uncomfortable personal experience.

When Mum, a NON SMOKER was given her diagnosis of lung cancer, Mum was also only given a 5% chance of living longer than 12 months. Our odds were not good in fact they were pretty much stacked against us from the start with the diagnosis of lung cancer. I still get unreasonably angry when I hear of celebrities who fight and beat cancer. As if somehow Mum didn’t fight or if she had fought a little bit harder she too might have beaten cancer.

There wasn’t an epic battle with Mum and her team of shining doctors on one side and the dark mass of cancer on the other. There was just a slow grinding ordeal as the cancer spread from my mothers lungs, surrounded her heart and seeped into her bones.

One morning after a particularly bad night, Mum looked at me and told me how tired she was of the pain. As she held my hand and looked into my eyes Mum talked about euthanasia, we talked about different ways of painless dying and I promised my mother that I would not let her die in pain. I held Mum’s gaze and I gave her my word.

Recently I’ve had it hammered home on a couple of occasions how much the dying are supposed to keep silent, that ‘dying well’ in today’s society means keeping your mouth firmly closed and, preferably, behind closed doors.

I did not want my Mother to die well, I did not want my Mother to die at all. I wanted a miracle, a wishing chair, a magic potion. I wanted to be able to turn back time by the sheer force of my will and make the cancer disappear. Mum’s cancer had consumed us, it had become Veronica and my foundation. Everything in our lives now revolved around Mum and the cancer that was killing her and breaking our hearts.

Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks. After that they’re on their own. From my own experience and talking to others with bad cancer or chronic illness, I’ve noticed a terrible trend. After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. People drop you off their Facebook news feed. Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

This is an all too often common experience. I described once it to a psychologist, thinking myself very witty, as having all the lights in the house turned off one by one until you were in one dark room all alone; she said everyone described it like that. People withdraw, emotionally and physically. You suddenly find a great and cold space about you where once there was support

The words of Sara Douglass, written as she was dying serve as a reminder to us all that we are all going to die, and how we die isn’t just dependent upon our own character but also of the characters of those we love.

{ 70 comments }

Lisa July 19, 2012 at 11:03 am

beautifully written, and a powerful message, thankyou! I work in aged care and it is shocking at times how the visits and phone calls just fade away as people get bored with how long Mum or Dad is taking to drop off. Not everyone behaves that way, but sadly many do. Thankyou for sharing your Mum’s final days with us, xxxx
PS New grandbaby Yay

frogpondsrock July 19, 2012 at 12:08 pm

I too am guilty of this Lisa, my visits to my elderly grandmother have become less regular as my life gets busier. Thank you for the reminder to visit my Nan.

Dorothy @ Singular Insanity July 19, 2012 at 11:16 am

Death is a huge taboo in our society. To the poing that we are unable to say that someone has “died”. We dress it up in euphemisms, “he has passed”, or “passed away”. Personally, I find that strange, as we’re very open about death in Poland. Funerals tend to be elaborate, public affairs and grieving is allowed. People die, they don’t “pass away”.

I think I am OK with death, in theory. I have had friends from my childhood die, in Poland, as well as friends here in Australia and it is tough, it hurts, but it is only tough for us. Not for them.

I am at peace with my own death, but I worry about those who would be left behind. Their grief grieves me.

And I have no idea at all, how I will cope with the death of a parent. I think I would be OK, but really, how can I know?

I’m sorry for your loss. The relationship you all had with your mum sounds really special and I totally get how big a hole she has left in your lives. Big hugs…

frogpondsrock July 19, 2012 at 12:07 pm

It was special Dorothy :) We were really good friends as well as Mother and Daughter. I am lucky that I have a similar relationship with my own daughter.
Sara Douglass also writes that this silence stems from Victorian England and as Australia was a British Colony we are very “English” in our collective behaviour here. Australia has changed so much since I was a child Dorothy that I can only hope that our attitudes to death, dying and grieving change as well.

Amanda July 19, 2012 at 11:36 am

Yes. YES. We are not comfortable with dying nor how to grieve. We don’t talk about it and call it “negative thinking” to gag the dying or bereaved.
We put time limits on things which are all arbitrary …. nobody knows “how long you’ve got left” …. a slippery road and an unladen semi-trailer may kill you long before any cancer does.
We expect others to stop grieving after a month, a year (or a week according to some employers), because we have moved on already. But then, we aren’t living with the gaping, person-shaped hole in everything.
We need to talk about dying – it is the one certainty in life that we will all die.
We need to acknowledge that it is not, nor should not be quiet and restrained so as not to inconvenience others, but that sometimes it IS quiet and private and that not everybody needs to know all the finer details (and I’m thinking of the sticky-beaks here, not the genuine abiders who are there to listen or hold hands and don’t expect to be privy to everything).
We need to learn how to howl at the moon and rage against death and we need to learn how to acknowledge fear and terror without false cheerfulness and talk of “negative thinking”.
We need to talk about it and know we are not alone.

frogpondsrock July 19, 2012 at 11:58 am

Ten days after Mum died, Veronica and I were publicly told by my brother to Wake up and smell the roses…….I am sick to death of this fake facade, stop feeling sorry for yourselves and stop this morbid attitude, yes it is an awful thing that has and is happening, but hey lighten the fuck up and stop being so fucking negative.

Amanda July 19, 2012 at 1:33 pm

Your brother is an idiot. He needs to come and talk to me. But I won’t be held responsible for his injuries if he says that shit to my face…..

frogpondsrock July 19, 2012 at 2:49 pm

Aah Amanda he was in pain and he was lashing out at me. I understand where he was coming from as he had been in denial for all the time that Mum was dying and the only way he knew how to deal with his pain was by trying to make Veronica and I feel as awful as he was feeling.

Colina Porter July 19, 2012 at 4:04 pm

how sad that that was his only way of coping. You knew why but it does not help you or Veronica when you need to grieve yourself. We offer counselling many times on a patients journey, not every one wants or needs it, but many benefit from it. It is available for 12 months after a patient dies for family members. Sometimes a relative will refuse counselling and another family member may attend to talk about this and be given coping strategies on how to deal with their grieving relative.

frogpondsrock July 19, 2012 at 6:00 pm

Oh I wish I had known that Colina, I would have gone in and spoken to someone as my brother made me feel so angry and it would have saved me dumping everything into my husbands lap and thus making my husband absolutely furious. These emotions are cyclical and anger feeds anger. It would have been nice to talk to someone outside the family.

Sue July 19, 2012 at 2:21 pm

Did you tell him to go fuck himself and stop giving other people advice on how to do it his way? Sheesh.

frogpondsrock July 19, 2012 at 2:52 pm

No Sue, I told him that I was sorry if there had been any misunderstandings and then I ignored him, as we were joint executors of Mum’s estate and had to remain civil. Six weeks later he was threatening me with legal action because I hadn’t put Mum’s house on the market quickly enough for his liking. It was a pretty horrible time and the glue that had held us together as siblings (Mum) was gone.

Sue July 19, 2012 at 3:10 pm

That’s very controlled of you. I forget that not everybody is as reactionary as I am when they’re being criticised :)

That’s so sad that he reacted the way he did. How unfortunate that because he was struggling to cope with everything he had to take it out on you.

Zelda July 19, 2012 at 11:48 am

I should get grumpy at you, making me maudalin at work, but you know my story, so the only reason I would get maudalin is because I can relate TOO DAMN WELL.

frogpondsrock July 19, 2012 at 11:51 am

Sorry Lovely. xox

Zelda July 19, 2012 at 12:29 pm

Forgiven…. made me get up and go talk to people as opposed to sitting in office grumbling.

Zelda July 19, 2012 at 11:49 am

And listening to Les Miserables does not help.

frogpondsrock July 19, 2012 at 11:51 am

Mum ADORED Les Miserables. She was in the choir for the production of Les Mis down here. She passed her love of that production onto Veronica :)

Zelda July 19, 2012 at 12:30 pm

Les Mis – bring him home played on Cello was not helping! :-) I love the music as well.

Elaine Bradley July 19, 2012 at 1:05 pm

Another good post from you, one I think I will come back to and re-read a few times. Thanks, for making a difference in a small way.

frogpondsrock July 19, 2012 at 2:55 pm

Thanks Elaine. I often referred people to the post by Sara Douglass and I only realised her blog had been suspended when I went over there the other day to send her link to a friend. I was pleased to remember that I had copy/pasted her blog post and so incorporated it into this post. Sara’s words are important I think and If I can keep them in the public domain for a bit longer I will.

edenland July 19, 2012 at 2:10 pm

Seriously amazing post. I love how you lift up a corner of the rug that everybody is just walking on blithely … and you’re saying “What’s under here?”

I’m packing now to go back to the hospital again and I’m seriously spinning out, in spite of all my strength. It’s so hard and fucking incredibly awful … but also, it just is what it is. It’s death – and we’re facing it full-on with no dreamy filter.

I’m panicked and terrified because of my own feelings around death and dying. I have never thought about euthanasia until this week … I now have an opinion on it for the first time.

The way you and Veronica talk of your mother … with such love and obvious keening, leads me to realise that you must love her very much. Always – love never dies. It can’t.

Love to you Kim. XX

frogpondsrock July 19, 2012 at 3:02 pm

The words are in my head Eden and I need to put them somewhere.I have been thinking about you and Jim and your families a lot. This post took me a few days to write as it was very heavy. I would write a bit and then cry a bit, then wander off up to the studio and play in the mud and think about what else I needed to say.
Write-cry-work. Lather, rinse ,repeat.
When Mum was dying, Veronica was pregnant with Isaac and so much shit was happening that sometimes people would comment to me, “Oh You are so strong, you girls are so strong” Veronica and Mum and I weren’t strong. We didn’t have any options but to keep on moving forward. We just kept swimming. We had to.
Just keep on Swimming Eden, Just keep on swimming. xox

Colina Porter July 19, 2012 at 4:23 pm

I used to be all for Euthanasia, I still think you should be able to have that “Choice”, but after working in Oncology, I have a better understanding of Palliative Care. The team are very caring and pro comfort, we dont go silly and bomb patients out (well we try not to) but it is a continuous assessment of needs and quality. We have no control over the body”s process but try to manage symptoms to keep them comfortable. A “good death” is what we aim for, a pain free or well controlled patient, and hopefully family or friends are present. I struggle when a covering doctor will not order adequate pain relief, we do not wait, if a patient needs it we can go to the consultants to get better pain relief. I am lucky to work in an area where the consultants care and are approachable. The end is not just about a patient, it is also about family and their needs as well, and sometimes their needs are as great as the patients. It does not matter how someone dies, they leave a huge hole in the lives of those left behind.

frogpondsrock July 19, 2012 at 6:07 pm

The level of palliative care we received up at St Johns was wonderful Colina. I can’t remember Our Doctors name but he was a large man who also worked at the Whittle ward. He had a fantastic bedside manner and made us feel that we were important. He listened to Mum and he wasn’t afraid to laugh with us when our black humour bubbled up. I still believe in euthanasia but I also have faith in the current batch of professionals at the hospital.

Sue July 19, 2012 at 2:19 pm

Wonderful post.

It’s interesting here what you say about “dying well”. It’s made me question my own assumptions. I feel that “dying well” means yes, a stoicism in a way, a turning and looking in the face of what is to come, and an embracing of it. But that can only come when you are allowed to voice your fears. To have a bunch of people in front of you patently pretending, in the last days that they have with you, because it’s too hard for them is … well, that’s a million kinds of fucked up and says a whole lot about what empty shells we are in this culture we find ourselves in.

When my grandmother was in the process of dying (and died several days later, I think, from memory), I was in a room with my auntie and my mother. Tulla (grannie) was looking at me and saying, “I don’t want to … I don’t want to …” in that frail little voice, and her eyes were pleading with me across the room. My aunt and my mother smoothed it over with their bustling efficiency, as they are wont in their denial to do. Which pissed me off. How gutless. And yet, I didn’t know what to do either. I was sick with chronic fatigue syndrome and feeling like I was in my own personal hell at the time. I can’t remember if I said to her, “It’s okay,” because my memory is so bad, but I hope that I did convey that it was okay, that her not wanting was okay, that I was hearing her. I am still haunted by that look of hers across the room.

Maybe when you were saying to your mum “It’s okay” it *was* true – not for you, but for her. I wonder what there was to come for her – is death a doorway, or a full stop? Who knows? I guess we will all know at some stage. And our consumer culture can’t commodify *that* one. It remains the ultimate mystery. And I like that.

frogpondsrock July 19, 2012 at 3:06 pm

When I told Mum it was okay for her to die, to go and leave us. It was most definitely for Mum, otherwise she wouldn’t have gone. She would have fought and fought and stayed for a few more days. But she needed to go when she did as the cancer had ravaged her body and it was time for her next great adventure.

Thank you for sharing your memories of your Grand mother. xx

Colina Porter July 19, 2012 at 4:30 pm

we often ask why they are frightened and is there anything we can do for them. We had a lady that was very agitated, and other than sedating her unecessarily, someone suggested a priest. She gave confession with the priest and was given absolution, she settled and died a “nice death” she was very settled and peaceful, but had been tormented most of her life at someting that had happened in her youth, she was able to die with a settled concious, it probably left her husband unsettled, but as I did not see him again I have no way of knowing.

Sue July 20, 2012 at 10:56 am

That’s so good to hear, Colina, that you ask why they are frightened. I think about all the old people who need time to be able to say what they want and need to say because it is deep-seated and takes a long time to come to the surface. Add to that the fact that they’re probably confused in some way and boy, doesn’t take much for it to be glossed over by a busy and efficient outside world. It breaks my heart.

Toni July 19, 2012 at 3:15 pm

Every. single. word.

It’s coming up to the 16th anniversary of my son’s death this week.
I have not forgotten the hiders. I have not forgotten the unspoken (and sometimes spoken) wish that I would just get over it.
And I have not forgotten the (very) few who gave me their hearts and their time when I needed it most.

This is a death-denying culture, but I’m not so sure about the Victorian attitude, because the Victorians mourned quite publicly, with clothing and jewellery and funeral rites. I think it’s more that we’ve removed death and dying to ‘professionals’ — hospitals, funeral directors, and the like — instead of coping with it ourselves.

Your mum was a very lucky and clearly special woman, we can hear the love and respect for her in every word you and V write.

Sue July 19, 2012 at 3:25 pm

You have mentioned something that keeps popping up for me over and over and over and over, Toni. That we’ve outsourced our rituals and customs to “professionals”. What the hell?

And it’s not just here when it comes to death; it’s all over the place. It stymies us because we are then made to believe that we don’t have the right qualifications to be able to speak of our experience and share our experience and knowledge and wisdom with each other. The professionalisation of everything keeps us from each other.

Toni July 19, 2012 at 4:07 pm

Yes, exactly! Beautifully said, Sue.

frogpondsrock July 19, 2012 at 3:35 pm

I didn’t know that your son had died Toni. This week must be hard for you and here I am poking at your wounds.

Another excerpt from Sara’s blog post where she goes into further detail, I have done no study as to when the change took place, but it must have been about or just before the Industrial Revolution — perhaps with the mass movement into the cities and the subsequent destruction of traditional communities and community ties, perhaps with the rise of the modern medical profession who demanded to control every aspect of illness, perhaps with the loosening grip of religion on people’s lives during the Enlightenment.

Toni July 19, 2012 at 4:06 pm

I’m ok, Kim. I actually prefer talking about the whole subject rather than keeping it bottled up. Poke away.

Helena July 19, 2012 at 3:45 pm

Another beautiful post, dear, though very hard to read at work, then carry on…
Missing Mum a lot lately, but oddly, I have started to think in terms of “Mum and Dad” again – I really truly hope that means they are together again – this time, forever.
You have an amazing way of putting things so that I really have to stop and think – and question why I think the way I do – thanks…..I think!!!

Colina Porter July 19, 2012 at 4:35 pm

thinking of you both, I do not know how you both feel as I am lucky to still have both my parents, but I feel for you both and the loss of both your fathers did have an impact on me at the time, so I cant even begin to imagine the depth of your feelings. I think Helena you have to think better of the afterlife, so that we feel better in ourselves for those we have lost and for ourselves. xxx

frogpondsrock July 19, 2012 at 6:13 pm

Oh you are welcome my lovely one and I apologise for making your working day a bit bumpy Your Dad’s death was very sudden (as was mine) and your Mum’s death was more measured so you and I have experienced both. I reckon they are together Helena as I am a strong believer in reincarnation with multiple soul-stages and I honestly believe that we travel through our life-stages with a similar collection of souls as our cronies and loved ones.

Madonna Dunn July 19, 2012 at 3:57 pm

Oh wow. I’ve followed Eden’s posts and she posted a link to this article and i’ve not read your blog before, but i’ll certainly be reading again. I will be bookmarking this and will come back and ponder more fully again and again. My beloved Grandmother died several years ago and it was the same. You just did not discuss it. I will tell you something else, all of what you have said can be used to describe the way people respond to me having a disabled child with a “life limiting” (don’t you just *love* that term) illness ie CP and other foibles. We get hiders too. And our grief is very similar to that of a loved one passing because we are going through the same motions every day….we don’t know what we’re looking at in terms of life either. But I can say it’s one thing that annoys me. Just say it. Out loud and talk about death and dying. Don’t say you “lost” your mother/father/grandmother/goldfish. Because you “lose” your damn keys. It’s not the same. Incoherent comment finished. Thanks for writing this.

frogpondsrock July 19, 2012 at 6:20 pm

Yes I hear you I recently lost my favourite scarf. Losing the scarf was unfortunate, The death of my Mother was devastating. I also understand what it is to have a child (or two) with a disability and that is a whole different lot of grief there as well. Grief for the lost possibilities, grief for the loss of an easy life. All jumbled up in my case with a giant bucket of denial as sometimes the way I deal with my children’s disabilities is to simply refuse to think about them today.

Regina July 19, 2012 at 4:54 pm

Lovely post. I love your blog.

frogpondsrock July 19, 2012 at 6:20 pm

Thank you Regina :)

Debyl1 July 19, 2012 at 5:00 pm

As a registered nurse and working in nursing homes I saw a lot of death.I always felt I could do so much in helping at this time in someones life as way too often they were left alone.Sadly like you wrote…people drop off,relatives stopped coming and so often these poor people were left to die alone but for us staff,strangers really, to comfort them.To be the last to hold their hand.I could never understand that.
My own sister does not help me with mum in a nursing home at the moment because she finds it too upsetting.That makes me so angry because she is putting her feelings before mums needs.It IS very hard ,but mum feeling frightened alone and abandoned would be far harder for me to deal with.
I hope this beautiful post will remind people to be there for those in the saddest of times,no matter how hard it is for them.To be there to make the transition warm and peaceful.To put their own feelings aside and be there for their loved ones so they may go feeling love as they take their last breath.What a beautiful gift to give a loved one.x

frogpondsrock July 19, 2012 at 6:21 pm

If ever you feel like having a big long vent, you can email me as I understand how angry and hurt your sister makes you feel. xox

Debyl1 August 18, 2012 at 8:51 pm

Thankyou for your thoughtful offer.It means so much to me.At the moment I am trying hard to deal with the fact it looks like I no longer have a sister in my life aswell as the fact the mum I knew is fading away.xx

frogpondsrock August 19, 2012 at 7:52 am

My offer is still there if you want to talk. frogpondsrock@gmail.com xox

Sue July 20, 2012 at 11:00 am

Debyl1, I don’t know how long ago you worked in nursing homes, but did you find that the people who worked there were given enough time to be able to sit with the people and listen to them if they needed to talk?

My mum worked in an aged care facility for people with dementia and she was so run off her feet all the time that she didn’t have time to sit and talk with the residents there (but I know sometimes she didn’t even *want* to do that, because they drove her a bit barmy on some days. Dementia is a horrible thing)

Toni July 19, 2012 at 7:18 pm

Yes, I’m posting another comment! sorry. I do have Kim’s permission to add this, though, and I apologise if anyone finds it upsetting or graphic.

My son died of SIDS 16 years ago.
At the time of his funeral, I was on my own and pretty much in a total state of shock, so beyond making a few very basic choices as to his coffin colour and clothing, I stayed as far out of the decision process as I could, and the funeral home did not encourage me to be more involved. (they did a good job with the funeral, I’m not complaining, but they handled everything themselves)

A long time later, nearly a year I think from memory, I had a letter from the Coroners’ Office, to say that they were ready to release his brain, which had been retained for study after autopsy (used to be procedure for SIDS deaths). I hadn’t realised they released his brain with his body, and I’m not sure if you can imagine how stunned I was, and what a dilemma I was in.
Because I now had to decide what to do with it.

By then, I’d met a man from the ‘rival’ funeral home in town, and I rang him to ask what the procedures were if I wanted to have Levi’s brain buried with the rest of his body, and he immediately offered to handle all the transfers and cover all costs involved.
And he encouraged me to do some things that absolutely terrified me — to carry the casket from the car to the graveside, and to place the casket myself.
I kept insisting that I couldn’t, and he (gently) said, Yes, you can.

So I did.

On the day, it was just us. He handed me a beautiful silver casket (looked like a jewellery box) and I carried it over to the grave, and placed it myself into the spot Brian had already prepared.

And I was ok.
It actually felt good to have had some small part in my son’s burial. I felt like I had regained just a tiny wee bit of control over the whole nightmare — because of course from the moment I found his body everything had been happening to and around me, and I’d felt completely helpless, swept along by it all, but not able to do any more than just keep my head above water.

When my husbands’ father died, he made the (temporary) cross. He said it made him feel better to do one last thing for dad.

And one of the most heart-breakingly awesome things I ever saw in my life was a young guy, in his late teens, whose baby daughter had died on her first night home from hospital, who carried her tiny coffin from the church to the car, and then lowered her into the grave. I bawled my eyes out, am crying now as I type, but it made me feel so privileged to see his determination and strength.

I think as humans we have to stop handing our most precious moments to others. We need to know that we are allowed to have a voice in what happens to our loved ones, and to our own bodies.
After all, NO professional will ever care for us with as much love as our own family.

frogpondsrock July 19, 2012 at 7:23 pm

Thank you for posting this Toni. xx

Sue July 20, 2012 at 11:04 am

Yes, thanks heaps for sharing, Toni. I so agree.

sleepydwarf July 19, 2012 at 8:00 pm

Kim, thank you for writing this post.
I agree we do need to be able to talk about dying more openly. We all die eventually and people around us will die, sadly. It is hard because it does make us so uncomfortable, but I suppose we need to put that aside and focus on the person who is dying and how they feel. It must be horrible to be abandoned because people feel uncomfortable being around you. It would be good if society could be more open and people could feel able to say how they feel – and more importantly able ask someone who is dying how they feel and for that person to feel able to talk about it too.

I’ve started to ramble again, I started writing this comment an hour ago & have kept deleting and rewriting. It’s coming up to 3 years since my Dad died and so thinking about how I handled that and what I wish I had done differently starts to come into my head leading up to that.
Hugs xx

frogpondsrock July 19, 2012 at 8:27 pm

I often do that when I am trying to comment as well, Barb. I will ponder and daydream my way through many different comments but I generally end up not leaving a comment at all because my words often seem trite after I have read a post that moves me. So thank you for leaving this comment

Denyse Whelan July 19, 2012 at 8:02 pm

Dear dear Kim, you write with such eloquence and emotion that your words are poetic …talking about that last so called taboo. death.
I have read and watched yours and Veronica’s pain over time writing about your mum. Photos I’ve seen of her show a cheeky and very active lady. How damned awful to have her succumb to lung cancer. The shock, the disbelief must have been overwhelming.
I faced death for the first time directly in March 2007 when mum was dying of cancer (82 – multiple secondaries in brain, no primary source known) and I watched her diminish and retreat into herself due to loss of senses ( she was already deaf) but her sight diminished. Her connections in the final days of palliative care were by touch & we’ve never been a touch/feely family but I spent my time with her massaging and holding her hands. We lived quite a way from where Mum was in hospital and Dad was there each day along with my brother. I am a talker about these things, and I think that it helped that my hub is a listener & a wise man! Mum may not have died in her sleep or her own bed but we as a family took comfort that we had said our goodbyes, had let her know it was ok to leave and she was comforted by a small prayer with my hub. Thanks Kim for your words..look ath the conversations and comments. We need you to let us open up. Love much Denyse. ps I know what it’s like to wait fora daughter to give birth! Now done it 4 times. Last time in April. Good grandmother ing days ahead! d

frogpondsrock July 19, 2012 at 8:28 pm

Thank you Denyse. Thank you

Trish July 19, 2012 at 8:35 pm

Every single word resonates with me too having been recently diagnosed with breast cancer. The breast cancer has been cut out, the chemo WILL mop up anything left behind. The scars will heal.

I can feel already there are those who are withdrawing and that is ok . I am not dying any time soon but it is still foremost in my thoughts , every night, I wake often and lie there and I worry about the unknown . The chemo and the toxic side effects and potential for sepsis etc. all very serious and real .

One friend already asked me how I felt about my mortality ? As we were saying goodbye and just leaving her home …

I worry who will still be there in the end not so much death itself. I am disappointed in some people already, my problem , others have shown me more than I ever expected. Beyond measure.

Maybe for my sons too because I once cared for a 4-5yr old girl for 3 wks , 2 wks after her mother died (my cousin at 40 of bowel/ 2ndary ovarian cancer) the absolute grief of that child for her mother is imprinted forever.

frogpondsrock July 19, 2012 at 8:55 pm

I remember the people who surprised me with their kindness more than the people who hurt me with their own fear. I remember the absolute silence after the funeral and how much solace I took from my blog. My friend Tan and I normally talk on the phone once a fortnight. After Mum died Tan rang me every day and I will be forever grateful for those calls.
That was the hardest part for Mum, Trish she did not want to leave her grandchildren and she was heartbroken at the thought that Amy would forget her. I remember Mum patting me on the hand saying that she found it easier to leave me because I was all grown up and “fine” but she did not want to leave Von and David. It was so Sad. Still is so sad.
How is the Chemo going? The Chemo Mum had made her so terribly ill.

Trish July 20, 2012 at 8:14 am

I don’t start chemo till next Friday.In a way I should be pleased they have planned 16 continuous months of 3 different chemo/targeted intravenous treatments. Kim.
Your friend Tan is a special friend indeed.
I think it is fear that keeps people away more than ‘selfish’ or hurtful reasons. However like Sara said people are reluctant to hear about our discomfort or negative thinking because of the way it makes them or they just don’t know what to say.

frogpondsrock July 20, 2012 at 9:04 am

Oh wow it sounds like they are super confident that they can fix you Trish, that is good to hear. During Chemo though be prepared to, “not be able to eat” and warn your husband that you wont feel like eating. I was so worried about Mum during chemo because it just knocked her around so terribly and made her so incredibly nauseous that even the thought of food made her groan. I made huge pots of chicken soup and gave mum the clear broth and she only ever managed half a cup or so and I think she was forcing herself to drink the soup to stop me worrying. But Mum might have been on a super strong dose as they were using the chemo as a last ditch effort.
I remember before Mum was diagnosed a friend’s husband had throat cancer. I bumped into Jane at the bakery one day and I really wanted to know how her husband was going but I didn’t know how to ask her so we just talked about the kids instead. So I now how it feels from both sides Trish.
Good luck with your treatment and I hope the nausea skips you

river July 19, 2012 at 8:43 pm

A very timely post Kim.
I know two people who are dying of cancer, different branches of my own family, one is 86, the other not much older than me, this younger one is under palliative care and has not much time left at all. I cry every time I think of her.

frogpondsrock July 19, 2012 at 8:58 pm

Can you go and visit her River?

Glowless July 19, 2012 at 9:30 pm

Your words and Sara’s words have interwoven to form a beautiful tapestry, Kim. A friend and I discussed the language surrounding death quite recently and we both found it to be lacking. We have people “fight” and then “lose the battle”. It infers that those who don’t “beat it” are in some way not as strong or as stoic as those that do. It makes death, particularly from cancer, seem like a failure on their part when it is anything but.

My family have always been quite open about death (they kinda had to be) but I’ve noticed, after years of people looking shocked at the words “died” and “dead”, that when we talk to other people we dumb down the terms. They are affronted by our language and it saddens me. Death is, after all, a part of life. It doesn’t make it any easier to grieve though.

frogpondsrock July 20, 2012 at 9:12 am

We found that when Mum was in palliative care Glow, we had become accustomed to using black humour to deal with the endless treatments and the inevitable bad news and some people found our matter of factness offensive. Death is death and dying is inevitable and as much as I think that I am immortal I hope that I when I die it isn’t too much of an ordeal for them to do my funeral how I want it. I think I will leave them a very detailed list of what I want that way it wont be as stressful as Mum’s funeral was.

Anne powles July 20, 2012 at 10:47 am

A beautiful post.
I do think times are changing. When my son was dying as a baby 39 years ago there were a lot of “hiders” and people who crossed the street. (I also had some considerate, close friends).
My husband died of cancer four years ago and his bedridden period at home was quite a long time . He was constantly visited by wonderful and supportive friends (and of course family) some of whom came regularly over great distances and others frquently over more that 100 ks. They were all ready to respond to his lead about what to discuss. The palliative care team was also wonderful.
I think attitudes to death and discussing it are becoming easier as there arenare more open discussion and blogs like yours.

frogpondsrock July 20, 2012 at 12:26 pm

Thank you Anne and thank you for sharing your story.

Carli July 20, 2012 at 11:18 am

I talked about this post with my husband last night. I’ve found his family (Mediterranean background) has a much more open and honest way of dealing with death than other cultures sometimes do. It was confronting for me when his father died because I’m used to stoic illness and death but you just do not tell people how to grieve. Ever. I dread losing a parent, particularly my mother and I’m so sorry to read that people disappointed you x

frogpondsrock July 20, 2012 at 12:32 pm

I remember when my maternal grandmother had breast cancer in her 70s and Mum saying to me how frightened she was of her Mum dying. Her words where “Oh Kimmy I don’t know what I would do without my mum” (Nan recovered)
I sometimes think of Mum’s fear when I am being especially sad as it is Nan and I who are left here without Mum. I can understand your dread as it is quite horrible at times to be without Mum but other days it is bearable. And sometimes it is okay and not okay in the same moment. Go and hug your Mum for me.

tiff July 20, 2012 at 3:38 pm

Kimmy, I love this. I can’t say how or why because I am going to share it but I do love it.
I don’t protect my kids from death. I can’t do it to them.

On another note; I am missing you right now. A lot.

frogpondsrock July 20, 2012 at 5:14 pm

<3

Mrs Woog July 20, 2012 at 9:58 pm

Soaked up every single word. X

frogpondsrock July 21, 2012 at 9:39 am

Good.

Jebaru July 27, 2012 at 11:17 pm

The people we miss and the people we fear we soon will miss. God, it’s hard. The list doesn’t get any shorter and the only people who make it halfway bearable are those who understand. This is a grand piece of writing, Kim.

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