Eight: The Shift

Rachel, 55

I started to think about meeting you today and about telling my story, and I realised that I hadn’t actually been there … there was some form of avoidance going on. That I actually hadn’t really told someone.

I talked to my partner yesterday and I said, “I think because it’s a horrible story.”

It’s not a nice story and I think you don’t tend to want to burden people. I think when we’re talking about death and dying and all that sort of thing, that we want some sort of redemptive feature in there.

[You want some lesson that you’ve learned or something.]

My story is very much about the medical system and the absolute dis-connectivity. Within that, there was just certain situations … like the resident Gerontologist was on long service leave and they had someone else acting in that position.

It was the perfect storm for having a really crap one. [laughs] Everything came together that was really crap.

People don’t want to hear those stories, so you don’t tend to sort of tell them.

My story is very complex because when my parents started to get unwell, I got diagnosed with cancer. I started to go through cancer treatment. They ended up both dying in a period of time where I was just finishing radiotherapy and so I wasn’t in my best, robust physical state.

[And mental state probably as well.]

So it was really, really challenging with those things all put in together.

I used to be a nurse so, for me, it was overlaid with all this stuff about having some of those skills and being able to give those to my parents when that time came along.

I remember sitting next to other people, having those experiences as a nurse and thinking, “When my parents die, it’s not going to be like this.”

Then you find yourself physically incapacitated and you can’t do some of those things that you would have been able to do otherwise.

You have that sort of old professional self that you slide into. I was speaking to a friend the other day who used to be a psychologist and she said that we shut ourselves somewhere else.

Waking up the other morning, I was like, “Mmmm … I haven’t allowed this.” There was just an acknowledgement in myself that there’s still bits there.

[You need to work through them somehow.]

Or just let bubble up and be … which is how I deal with grief. You know that it comes up in bubbles and often comes up in all sorts of unusual ways. If I can get people to realise one thing, it would be that it doesn’t go away.

That we can get rid of that word ‘closure’.

[It’s a ridiculous word isn’t it?]

[Laughs] Oh! I want to just close it all off and …

[The other one that’s ridiculous is ‘journey’. I find that infuriating as well.]

My parents died ninety two days apart. They were both in care and they both had dementia.

We were caring for them from here. We kept them at home in Dunsborough for as long as possible. There was no family members that were nearby. That involved getting external help and we employed some people. We did everything. I always think that we did everything we possibly could to keep them at home for as long as we possibly could.

I would have bought them down here, if I hadn’t been going through cancer treatment at the same time.

I have four brothers. One’s in Sydney and the other three are in Perth.

No-one was around the corner. Although my brothers used to go down there, in the end if you’re the one that’s had experience in that caring role, you’re the one that knows that system and navigates it and organises most of it.

A lot of it did fall to me. They used to go visit and stuff but navigating through the whole system and getting support and organising things did fall to me.

That’s an interesting thing in a big family too. As time got on and they went downhill, there would be conflicts arising about who was doing this, that and the other.

I think that we did come to a good place in the end. This is what I say to people now, “Please don’t go down that road of comparing and contrasting what people can and cannot bear and do in the family.” It’s the road to hell.

There will always be some people that will have to do more because they’re more capable and they have more capacity. There’s others that can’t.

Coming into this whole process, you can see quite clearly that the real advantage I had was that I had seen other people die before I had to see the people closest to me die. My brothers hadn’t, and it really just came down to that really simple thing of one person having training and one person didn’t.

One person experiencing something and the others not and it just being so incredibly overwhelming for them.

As it turned out, one of my brothers ended up being with the other one in Sydney when my mum died and the other two were here in Perth. They came in to say goodbye but they weren’t able to sit there and physically be with her in that process. Unfortunately, it was at Charlie Gardiner Hospital. Not a very nurturing environment to be in.

This is another bad story about Charlies unfortunately.

My mother fell over in the nursing home and fractured her hip and her shoulder. At this time I was down in Dunsborough as we put their house on the market. We were selling their house at the time and it was the last week of my radiotherapy, so we were down there doing that.

We got the most beautiful call from the ambo. The people at the nursing home had let the ambulance driver ring me.

I had a really good relationships with some of the nurses at the nursing home that my mum was in in Perth. I always said to them, “Please ring me. Let me know … talk to me.” We had a really quite good talking relationship.

I get this phone call and its an ambulance. He sent me a picture of what my mum’s hip looked like because I said, you know, “Can you…?” [laughs] It was a big bruised hip.

Then he said to me – I’ll never forget – he says to me, “I’m doing everything I can to really help your mum out and cover her pain.” Just the way he said it … you know?

[He was actually connecting to her, much more than just moving a body from one place to another.]

I love those ambos, just beautiful people. I said, “That’s great.”

I gave really specific instructions, because my parents had the highest level of health care that you can possibly have. At this particular nursing home, they don’t send someone with them. They put people in an ambulance and send them off to hospital on their own.

I said to this guy, “Can you please take her to St. Johns in Murdoch?” It’s the only private hospital in Murdoch that has an emergency intake.

That was my one instruction. Yeah… they didn’t take her there. [laughs]

She was in East Vic Park so I still didn’t get a clear idea of why they didn’t do that. I said to them that, “We can pay for it. It’s covered in her insurance.” I made that really clear.

They took her to Charlie Gardiner. I rang up one of my brothers to tell him what was happening and could he please go? He had some issues of his own and he’s always found anything to do with death and dying and being unwell, difficult.

He did go and sat with her for a period of time which I thought, “Great … someone was with her.” I rang up about two hours later and he was back at home and I said, “Where’s mum? You’ve left this poor demented lady?” [laughs]

I rang up the hospital and, by this stage, it was later at night and I got a night duty nurse. My mother was still down in the ED and they still hadn’t admitted her. She confirmed for me what was happening with her body. My mother had a really major heart condition so she was full into heart failure at that stage. She had defied the doctors as it was.

My mother was a very positively constellated person. She smiled to the end. She was someone who very much wanted to live, and she did live, she had a very big life.

I spoke to this nurse and said, “How is she going?” She said, “She’s going ok considering she’s got a fractured hip, and we’re covering her pain.” I had a whole conversation with this nurse about where I was and that I was coming up the next day. I had to get the bus because we were still packing up the house down in Dunsborough. I left my partner there to do that and I got on a bus.

I came up on the bus the next day and I wasn’t feeling particularly great. I did know within myself, on that bus trip, I said to myself that, “This is it. This will be the road out.”

By the time I got to Charlies it was the afternoon. I walked in and she was still in the Orthopaedic ward. There were six other people, all men, in this ward with her in the corner. For all I could see, she had IV Panadol up which was just ridiculous given that she was sitting there with smashed up bones.

I couldn’t see that they had actually been giving her anything because she wouldn’t have been making much noise.

My mother was a long-term chronic pain sufferer, and she was tough. She had the pain threshold of an elephant. I couldn’t believe what she would still do under …

I went out and asked about pain, and then I asked to see Doctors and stuff. The whole thing then began, I couldn’t get onto a Gerontologist, there wasn’t anyone there. The Orthopaedic surgeon came up and said, “We can’t operate.” I said, “What are you going to do? So you’ve got your mum in the bed with a broken hip and a broken shoulder? Are we just going to let her die over the next few days?”

They knew that as soon as they anaesthetised her and put her on the table, they knew that would be it.

[She was that fragile?]

Yeah…. But they didn’t say that. They said very little until [laughs] until he said, “I don’t think we can operate. You can make a decision about that.” I said, “What if I said that I wanted you to operate?”

“Oh well … I really wouldn’t recommend that.”

I followed him out because then he sort of turned on his heel and was ‘busy’. By this stage, I was probably a little bit wound up. I went out there and I just touched him on the shoulder and went right up to him and I said “You know that she’s dying, you know, can I have some…?” He just … he just simply, he didn’t … he didn’t know what to say. He was clearly just out of his depth.

[There is quite often a dynamic between nurses and doctors and his knowledge of you being a nurse possibly tainted it in some way?]

I didn’t tell him I was a nurse [laughs] but, with the way that I spoke, he would have known that I had some knowledge.

It was very much that thing about knowledge or lack of knowledge. I look back at it now and I think it’s an incredibly difficult situation for everyone but the absolute lack of communication was terrible. There was still nothing being done about mum’s pain. It wasn’t being addressed.

I rang up a girlfriend of mine who is still a nurse and asked her about it. She’s a pain specialist nurse so I asked her what should she be on if it was a palliative situation?

I never, at any stage, was offered the palliative team. I didn’t like that they never even spoke about that. I rang up my friend and got a listing of what drugs she should be on. The next doctor that came in I said I want my mother’s pain covered properly and I gave him this piece of paper. [laughs] I said, “This is what I want her to be put on.”

He goes, “We don’t …” I also said that I wanted her to be put in a private room otherwise I’m going to … I’d rung up Bethesda Hospital who has a private palliative care unit but they were full. At that stage, I’d totally forgotten that next door there’s the oldest palliative care … I know that now but I didn’t … I wasn’t even in that head space at that time …

Hollywood have the oldest palliative care unit in Western Australia. [laughs]

[You’d think Charlies would be aware of that and would let you know.]

No … it was comical. There was this … It wasn’t comical. It was bloody terrible at the time. It’s like no one wanted to make a decision and the only support I got was from a nurse who was probably a little bit older than me. She really, really stuck by me as far as just pushing things through and getting her moved into a private room. Everyone else had no idea about palliative care. I just wonder now – I still haven’t answered this question in my head – whether or not you can get people transferred into a palliative care unit with unstable fractures.

If there’s one thing with so many people, elderly people who are in care, it’s that this route is the way they end up dying … from a fractured hip.

They won’t operate on them. I think about the level of pain she was in.

My mother had multiple chronic problems. She was very frail. She would have got a lot better care if she’d been down here, in that situation. Just because of how big Charlies is.

I also would have been able to get around down here a little easier.

They did give us a private room in the end. They gave me one of those fold-out beds that you remember from being a teenager, the one’s that used to flip up. It was horrible [laughs]. Everything about that space, when I look back on it, was just horrible.

My family came in. They came in for one day … all of them came together, my two brothers that were in Perth and their children. They came and said goodbye. They came once and they didn’t come back. You go up to the Hospice up here and I see how supportive it is. You walk into a whole environment that is supported by staff and volunteers.

You feel emotionally supported.

None of that there. It was really noisy … very, very noisy space. Really busy with people who were really stressed and under the pump. As most people are in an A class hospital.

The physical environment there is also decaying. You’re sitting in a room for a couple of days, for nearly 24 hours and you notice every little [laughs] thing …

Listening to someone rattling away in their last few days, you notice everything. I’m having this decaying experience where someone is … someone is leaving … my mum … but you just look around you and everything’s …

The staff did the best they could with what they … no … they weren’t particularly friendly. Often at night they would come and say, “She looks really comfortable. She probably doesn’t need this next dose.” I’m saying, “No. You’re giving it to her. She’s not missing that dose.”

I’d talk to people, “Do you know what palliation is? Do you know much about palliative care?” They usually weren’t registered nurses, they were on the nursing staff.

One night the turnover team came in and these two jolly guys who have [laughs] just no idea of what was happening with this woman. I’d gone to the toilet and I came out and they were turning her over and she was making horrible noises. This guy’s going, “It’s alright love … nearly over … it’s alright.” [laughs]

I just said, “You guys can go now and can you just tell them that I don’t want anyone in here touching her. Let alone you guys saying, “It’s alright love … we’re nearly finished.”

She was in hospital for four nights.

Strangely enough, my partner and my ex-husband were the two people that supported me the most through that. Most other people sort of disappeared.

They just couldn’t … it was ugly. She was in a bad state. If people haven’t heard people Cheyne–Stoke before … like make that really noisy respiration which she probably did for the last couple of days of her life. They don’t know what to do with themselves.

Once again, it’s that environment where you think what do you do? I found myself doing all sorts of things. I remember the last night before she died I sang all of her favourite songs. [laughs] I didn’t know that anyone could hear me [laughs] and it was quite interesting you know … that ritual.

I’m not a particularly religious person or a believer or anything but my mother loved music and so playing music and singing were one of her great joys.

I did palliative care nursing for a couple of years just for an agency on and off. I would always find, towards the end of their life, I would feel that people didn’t want you to touch them. That’s just my personal experience and it was the same with mum. I brushed her hair and did a few things, just letting her know that someone was there.

Probably about four or five hours before she died, I just had that feeling that there was almost like a force field around her. In Buddhism they talk about the moment when someone leaves, not to …

I don’t believe in any of those things and I just went with what my gut was. I sat back on my little fold-out hospital bed and sang all these songs. All these songs from my childhood. Hey Little Hen, which is like a 1940s song. They all just kept on rolling. I actually found great solace in singing those last few hours.

[It’s a very familiar story.]

It’s almost like we don’t have rituals. At the same time my best friend’s mother was dying. Her mum died a little bit after mine. Her mother was a Buddhist nun so that’s why we were comparing contrasting things at the time. Even though she’s not a Buddhist, people would come in and do a whole process of ritual. She found that comforting. Just to able to have something to do.

When I’ve nursed people in a home environment, people just get on with their life. Once you are in a hospital or a hospice environment, it’s like, “What do I do?” You’re a bit marooned aren’t you?

[Music is a simple ritual that people can connect to quite easily.]

And they can do it. They don’t need any special equipment, you just have to put up with your own voice! [laughs]

She died around midnight. I’d fallen asleep. I think I’d only just fallen asleep. I think I woke up just after she died. I didn’t sleep very well because I’d been awake on and off for four days. I was quite exhausted by that stage.

I had this feeling, just before I woke up, of something brushing my face. You’re in that half-awake sleep and you think, “She’s gone.”

So… I woke up and she had gone. She looked quite peaceful.

The hospital was just klanging. We were across from the nurse’s post. Really noisy.

I rang my partner and told him. At that stage we were still staying at Crawford Lodge, which is were you stay when you have cancer treatment. They were great actually. I think I’d just finished that week. I said to them, “My mum’s in hospital. Can I stay a bit longer?” They allowed us to stay.

That was handy because you could basically just walk across the car park. Go to sleep and come and go a little bit.

I went out and I told the nurse. This other one went, “You’re not allowed to touch her!” I went, “What?”

“She’ll be coronial because she’s coming from a …”

“What?!”

“Anyone who’s been a fall, who’s come in from a nursing home has to go through the Coroner. You can’t do anything to her.”

[Almost like a criminal case?]

Yeah … I just turned and walked away. I went in and I brushed her hair.

They said they couldn’t do anything until the police come and that I had to see the police.

“When’s that going to happen?”

“We don’t know.”

I waited and waited for the doctor to come but it’s not very high priority when someone is dead.

I wanted to leave and go across the road but I couldn’t get out. They lock all the doors. I had to ring this security guy to let me out. [laughs] I finally got out and went and grabbed a little bit of sleep.

In the morning I got a phone call that the police were there and I had to come back. They were two lovely policemen. The policemen were beautiful actually. They were some of the nicest people I saw in that 24-hour period.

I remember that night mum still had two rings on and I couldn’t get them off. This policeman had obviously had a bit of practice and he got both my mother’s rings off. He introduced himself and the first thing he did was put these two rings… in my hand. I just looked at him and burst into tears. [laughs] He just held my hand for a bit.

They gave us nowhere … I had to do this interview with all this paperwork standing at the nurse’s desk in a busy hospital corridor with these two policemen. They weren’t too happy. He asked someone, “Can we go somewhere?”

“There’s nowhere else to go.”

I’d sort of lost a bit of my bolshiness. I wasn’t really thinking and I was just in this really weird space. The policemen were lovely but the amount of paperwork was ridiculous. We got through that the best we could.

Mum had just been left with a sheet on.

My partner came up after that.

They came up to collect the body… to collect her. There was this lovely … I can still see her face … she looked about 12 and I thought, “What are you doing here?” [laughs]

It was her first collection. The hospital hadn’t done the whole process of wrapping and stuff … that they usually do. This poor, young girl walked into the room to see her first dead body. All the colour went out of her face. I ended up talking to her and saying that, “It’s alright. This is my mum.”

The other person who was there wasn’t helping her at all. There’s these big metal boxes that they put people in.

There was this overwhelming feeling that I hadn’t finished yet and that I had to go with her. I look back on it and I think … anyway.

I couldn’t just leave her there. I wanted to just keep on accompanying her or something. I went with them, these two people. My partner came too. We were going down to the morgue and we got into the lift with this big, awkward box. We’re all standing in there.

It goes down one floor and this guy – who was in a really upbeat mood – with these urine samples … and blood samples. [laughs] It’s such a funny story when I look back on it. He gets in with another older nurse, who’d probably be a little bit older than me. We’re all standing there and it’s quite quiet but he doesn’t pick any of this up.

“Morning everyone!”

He just dumps these all these samples on top of this box. What comes out of my mouth is, “That’s my mum in there!!!” [laughs]

Suddenly I feel this hand and it’s the nurse next to me. She’s just grabbed my hand and squeezed it. Just held onto my hand. Didn’t say anything. Didn’t look at me. Just grabbed my hand.

This poor guy. We go to the next floor after I’ve bitten his head off and he gets out, whether or not he needed to get out or not. [laughs]

This nurse has still got my hand. Bless her. We went all the way down to the basement. I wouldn’t recommend that anyone go to a big hospital’s morgue. [laughs]

What they do when you get down there is that they shuttle this big metal box. They actually just take the body out of it. It was really cold. It reminded me of the back of a supermarket where they put all the dumpsters. Really, really basic.

I just had to see it through to the end.

I think these two women looked at me and thought, “Just let anyone stop me right now!” That’s the sort of mood I was in. I just needed to … see her out of there somehow. Even though it was really awful, I just needed to see that to the end bit.

I actually walked into the morgue. I followed her as they were carrying her body across this … I don’t want to think about it.

One of the morgue workers came out and saw this random person [laughs] wandering in. He was quite nice. He just sort of gently touched my arm.

By this stage my partner was standing at the doors that I’d just walked through that he hadn’t walked through. I just heard him call my name. “It’s time to go now.”

As you walk out of there at Charlies, there’s this big dipping driveway. It’s quite an acute dip. I just remember walking down into this big dip and then, for the first time in what felt like ages, just looking up at the sky. It was quite a nice day.

As I walking back up through there, the one memory that really stayed with me was my mum’s last words to me.

A couple of days before, not long after I’d arrived, she’d said, “Who’s going to look after the babies?” That was us. I just said, “We’re not babies anymore mum. It’s alright. You can go.”

I just think you make the best you can out of horrible things. I wouldn’t ask anyone to have a death like that.

My father, on the other hand … he was one of those people that used to always disappear out to the back shed. He left the earth just disappearing out to the back shed on the morning of my 50th birthday. I got a phone call and they said he’s not very well. He was still in care in Perth. Then I got a phone call maybe half an hour after that saying that he’d gone.

[That’s very quick.]

They were both in aged care together. People say to me, “How horrible! On your birthday!” I say, “No. I actually feel great love. To me that was my dad’s parting gift. ‘Happy Birthday Rachel.’”

My relationship with my mum was really lovely. Really close. Not so close when I was younger but I think having a child really brought us together.

I travelled and was away a lot in my younger twenties. I had a child when I was 28 and that really cemented our relationship. We were very close. I think that process of going from someone who was a little bit wild into someone who was a little bit more responsible. I realised that there were things in life that were a bit more important than myself.

I realised when I had a child that, “Do my mum and dad love me this much?” It’s something that just occurs when you get a little bit more mature and a little bit more sensible.

She was there at the birth of Michele so that was pretty special. She had five children so it was the first time she got to see one born without having the agony of doing it. [laughs] Which is pretty pivotal. It was pretty special to have her there.

She had 11 grandchildren. She loved them. It was good.

My mother was a business woman as well as a mother. She worked all our life. When she first started in business she went to a Tupperware party and ended up having a Tupperware business in the 1960s. That was when Tupperware was new and they had these quite structured systems. Within a very short period of time she became an area manager and had a car. She was earning more than my father.

Direct selling was big in those days. They had a direct selling business that they wanted to open up over here so they came over to Western Australia. My parents ended up being the first people in Western Australia to get into Amway. They became Amway Queen and King.

My mother worked incredibly hard. Quite a punishing regime and they were very successful at what they did. She was a very driven person. Incredibly giving person and really quite involved in her community. She really wanted to give help people. She did.

Mum taught me to never give up and to realise that it’s not always about you.

We had two funerals for my mother. We had one up in Perth because they lived most of their life in Perth. They probably lived in Dunsborough for about 20 years. That funeral was huge.

We had a memorial service in Dunsborough as well.

I was astounded. There was people who I’d never met down there. I’d lost count by the end of the day how many had said to me that, “Your mother changed my life.” That’s quite a bit thing to say. [laughs]

She inspired people and was incredibly positive in her outlook. She was really into the idea of creative potential. “You will find a way through this.” My father could tend to be a little bit negative.

Unfortunately dementia really did set in for the last six or seven years. She covered it over really well. People have a really great way of doing that, especially in their own environment. Within that she still remained quite happy and positive.

It took a long to get over having to remind her who I was. One of the last times she was really up and away I went to the nursing home. I walked into the room and there was this big smile and she looked at me like she knew me. I got over and said, “Hello!” She then turned to be and said, “What’s your name?” I’d say my name and she’d go, “I’ve got a daughter with that name.”

“That’d be me.”

I used to drive from here across to Dunsborough every two weeks to spend time with them. I would lie in that bed and go, “Please just die tonight.” [laughs] “Both of you, just die in your sleep!”

They weren’t happy. You could tell. I wouldn’t wish that sort of decline on anyone and then nursing homes. I wanted my best to try and facilitate them being able to die at home. You do your best.

Because of mum’s dementia she started to wander. She had to be in a dementia unit. To keep mum and dad together that meant dad had to be in there too. He had a little bit of memory loss and stuff like that but he wasn’t in that state. I used to go to sleep at night knowing, from my nursing, what those places are like at night.

We had them in one place to begin with but we had to move them out of there. We decided on a place through a friend of mine who worked for Alzheimers WA. She said, “Don’t look at the surroundings. Look at the people that work there.”

It was an older nursing home that we picked that wasn’t very nice in its surroundings. When I walked in there the staff were walking around. They knew everybody’s name. The woman who was in charge, who showed me around, knew everybody’s name. There was a feeling of warmth and care even though the environment was pretty bloody average. I think they’ve upgraded that since.

The first one we took them to was way up in the northern suburbs of Perth. It was the only place we could get them in together. It was all new and beautiful but it was like the Mary Celeste. You couldn’t find anyone and it was just these endless corridors.

My dad came to her funeral. He looked awful. We went and bought our father a new suit because he’d lost a lot of weight. He was bigger and he’d basically disappeared. We’d gotten the legs taken up and they took them up too much. My brother was really upset by the fact that you get see dad’s socks. [laughs] We didn’t take into account that he’d be sitting in a wheelchair.

People get caught on different things don’t they when you’re grieving.

We had it at Pinnaroo. There was lots of people at my mum’s funeral. We had the white lady funeral. They were really nice and it was nice to have lots of women around. We arrived there and all the grandchildren took my mum’s casket into the room. I wanted them all to have a voice so I got them all to write something. Just a little snippet of a memory that they had about mum. They all did that.

My oldest nephew tried to read them but sort of stumbled through some. Someone came up and helped him. You think you’re going to able to do it but sometimes your throat just blocks up on you doesn’t it? That was really lovely.

My parents, my mum in particular, were both Catholics so we had a priest from Dunsborough I think. My parents were really active in the Catholic Church down there. That was a bit of a trial for me because I’m a very well lapsed Catholic but that’s what she would have wanted.

My mum and I talked a lot about her funeral before she died. About music and about what she wanted so that was actually really quite clear. She was always open about death and dying. We had everything in the house labelled with who it was going to go to. I suppose I pushed that too. More so with my dad.

She always said that she’d had a good life. There’d been a few times in her life when she’d come near to death with different things. She was quite at peace with the whole idea.

Both myself and my siblings didn’t talk at the funeral. I didn’t feel like I could as I was a bit upset. We wrote stuff. My brothers had a bit of an argument about the eulogy. That was just their grief. A couple of them didn’t do very well.

I found the absolute amount of love that people had for her very touching. It was quite overwhelming.

There was this guy that one of my brothers tended to take in. My parents had left their car with my brother when they were overseas. This guy stole it and crashed it … and he came to mum’s funeral.

My mother was very supportive and forgiving of him. I think that’s why he was there. That was pretty funny … I wanted to kill him. [laughs]

I thought about my mum and I thought, “Everyone’s welcome today.” [laughs]

We had a reception with food and cups of tea and stuff. There was a room off the Chapel there at Pinnaroo. People stayed and chatted. It’s really quite nice to see friends of your parents that you haven’t seen in a long time. Especially those who were quite significant in your childhood but then you lost contact. That was actually really quite lovely to see them.

One of the beautiful things that happened at that reception is that the oldest nephew had just had his first child. He bought Tom and Tom was just a tiny little baby. It was quite lovely to have this tiny, little baby at this funeral. Mum would have loved that.

The boys managed to get the four generations picture with my dad holding Tom and the four of them. Dad died a couple of months after that.

The significance of having that child there was really quite palpable … that circle of life. That’s lovely.

We went back to my brother’s house after the funeral. We actually just did family.

She was cremated. We hung onto her ashes for a while and then dad died not long afterwards. We ended up having a bit of a ceremony on the beach in Dunsborough where we tipped them both together. I kept a little bit of mum and did a little thing here just for myself. I took a bit to one of my favourite spots. A little ritual. A few crumbs. [laughs]

[Some of the beaches down here must be full of ash!]

We all came together. It took a little bit of organising because one of my brothers was in Sydney. He came over here and we spent a weekend near Dunsborough. We spread the ashes in the water just up from Dunsborough. They lived just across the road from the beach. We just did two plaques at the Dunsborough Catholic … there’s a memorial wall at the back of the church.

Rather than just putting their dates and the usual ‘Mother of…’, we picked two sayings. It took a while to find the absolute right ones for them. People have since commented to me how beautiful that is. We picked both those sayings to say something about them rather than them being just ‘mothers’ and ‘fathers’.

[Otherwise they just become numbers and letters.]

To me it seems quite clear that there can be real events in your life that can change things fundamentally. I think the death of your parents is one of them. The other two were probably the first time I had sex and having a baby. You shift and you don’t shift back when those things take place. Probably the other one would be the death of a partner.

[Or a child.]

You hope you don’t have those.

I was the one that ended up having to go back to the nursing home and tell my dad. I did bring dad up when mum was in hospital. I did try and ask my brothers to go and do that but they couldn’t do that either. So I went and did that. [laughs]

My partner and I bought him up to the hospital to say goodbye. That was probably two days before she died. We said to him, “Do you want to come back again?” He goes, “No. That’s it for me.”

After she died I went to the nursing home. I walked in and there was this very beautiful lady, very, very big, large staff member. I just remember her walking up to me and she goes, “I’ve heard about your mum.” She just enveloped me in this pillar of flesh. I just thought, “I want to stay here and never leave!” [laughs] Just for a moment that absolute mothering that I felt when this woman grabbed me was almost overwhelming.

I then walked in to see my dad. He was in and out of quite deep … He wasn’t himself. He’d come and go as far as being lucid. I went and sat on the bed. I looked at him and I said, “Mum’s gone.” I just burst into tears. In that moment he was my dad again. He just grabbed me and just held me on his chest. He just hung onto me. He was everything I needed in that moment. He was really, really present.

He was a man of few words anyway but I really felt him there for me in that moment. It was really lovely. In that moment I thought about the value of going forward into those most difficult things that you have to do in life and the gift that I was given in going to tell him. My bothers missed out on that a little bit.

My son was 18 when my mum died. We talked a lot about death and stuff. I’ve always been quite open that way with my son. I tried to get him to come and see my mum. He came when she first went into hospital and he didn’t want to come back again either. After she died I tried to get him to come and see both my parents but he just wasn’t there yet. Since we’d been through my diagnosis and my cancer treatment and stuff, that was all too much. He says, “In the back of mind I thought you might be next.” Now, given the opportunity, he would have done that differently. At the time, it was all a little bit too close to everything else that was happening with me. He was running from that at that stage.

When I first started my chemo he ran away to Thailand for a month. In hindsight it was a good thing for me because I couldn’t carry him at that point. He did what he had to do at that time.

When you first get diagnosed, one of the worst things is you find yourself supporting everybody else through the news that you have to give them. I think I had three or four people burst into tears when I told them. Just talking them through that and getting them to feel ok. [laughs]

He moved to Canada not long after my parents died. It was hard to lose both my parents and then he went away too. There were all sorts of losses and different physical changes for me. I lost bits of myself physically as well. It was a real 18-months to two years of different sorts of losses.

In terms of support networks, I have a wonderful partner who used to work professionally in mental health. I also have a wonderful circle of women friends. I write a lot too. I picked up the journal from that time this morning. I was just looking at it before I came here.

It’s interesting that whole thing of documenting things and your memory of things. Thankfully, for some reason I put dates in.

I tried so many different ways to get my father to write his life story. When he died I found an exercise book with three pages in it. I gave him a recorder. I gave him a book. I tried to do it myself. [laughs] They don’t want to do it!

This is her bangle. She got it in China I think. It was almost worn down and I’ve had the inside redone. The guy did a beautiful job, seamlessly putting it back together. There’s lots of other little bits and pieces that I kept of hers but I wear this every day.

I also have a really old pair of eggbeaters. They’re just the best. Big old 1940s ones that beat eggs as good as anything. I always think of her when I’m beating eggs. [laughs]

 

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