So this last week of my life has been one of the strangest I've ever experienced.
Last time I wrote in this journal, Mum had been transferred from Hutt Hospital to Te Omanga Hospice, under the knowledge that she would soon be coming home, to be given full time care from Dad, Nick and some home carer staff assigned to help during the day while Dad, Nick and I were at work.
So that happened, and she came home for a few days, and I saw her a couple of times at home. When I saw her one Sunday night at home it was clear she was different. Barely spoke, really thin and skeletal in the face, so her eyes looked huge on her thin face. I'd look over at Taina, helplessly looking for something to say to fill in the blanks in the conversation, and I'd catch her, staring at me with these huge eyes, not blinking, no expression on her face. I didn't understand it, but I guess now I see she had already reached the point where talking and thinking clearly were getting very difficult for her.
I had a sick day off work last Tuesday, not so much because I was sick but because I was stressing out over the fact I had wasted my weekend relaxing, and not got any housework and other tasks done and I didn't feel ready for the week ahead at work.
Wednesday however was a normal work day, and Thursday was destined to be an unusual day right from the outset, but ended up taking a very different turn than I had expected.
We had this promotional day at work. They had tried it at a couple of the Australian stores with great success and so had decided to try it here in Wellington. The idea was our store was to aim to make $20,000 in one day- a percentage of which would be donated to the Fred Hollows foundation, who give cataract surgery and other eye treatments to people in developing countries who can't afford it. There would be photographers from newspapers etc, taking a photo of us handing a giant cheque over to the Fred Hollows foundation, and there would be radio crews advertising our specials and promotions on eye tests and glasses outside the store.
All the staff were rostered on for the day, working in two shifts, as the store was designated to be open from 7am through to 8pm that night. Half the staff were starting at 7, the other half of us starting at 11.30am, and working through till 8pm. I was rostered for the closing team.
Staff from Specsavers Head Office were down too, helping out the staff in store, or outside in costumes, or handing out leaflets and vouchers in the street. All in all a lot was going on.
Afterwards, we were all going to be taken for dinner after closing to celebrate.
The day started off well. Because of the weird work hours and the uncertainty about what times I would actually be getting a lunch break etc, me and my work friend Ellen decided to go out for brunch before starting work at 11.30. We went down the street to a cafe called Floriditas, which was nice, and I had scrambled eggs and bacon on toast, with a coffee, and we sat and chatted, and speculated on what the day was going to be like with all this stuff going on. It was nice, and I liked having an excuse to hang out with Ellen, because she's great and we get along so well.
Then we went to work. It was busy, but not as busy as it could have been, and although I served a few customers, I certainly wasn't terribly busy for that first hour and a half.
Then it got to 1pm. Mark was on reception duty for the day, answering the phones, He answered a phone call, as I was standing nearby the counter, awaiting a customer to serve. Mark took this call, and then he turned to me with a serious, meaningful look on his face and says, "Louise, it's your Dad."
Dad told me on the phone that the carer with Mum that morning had been concerned about the rate at which she was deteriorating, and that she was being taken back to the hospice. I wasn't immediately sure of what he was implying- after all, Mum had been to the hospice before, and come home again. But the fact he was calling me at work was in itself odd.
"Do they think it's...serious?" I asked.
"Well, I think you should leave work early and come down, put it that way," was Dad's answer. I glanced at Mark out the side of my vision, standing near me at the counter. He was mouthing to me, "Go now!" over and over.
I told Dad I would see what I could do and after I hung up, Mark immediately said, "Just go. Go now."
I hesitated, but I knew I probably should, so I glanced across the room, and saw the store director, my boss David walking through so I went over to him and told him I had a family emergency, and needed to go as my Mum was being taken to a hospice.
David said okay, and then said, "Wait...the hospice?"
"Yeah, " I replied. "It seems she doesn't have much time left."
So calmly I went out back, changed my shoes, grabbed my bag. Navigated my way past a guy getting changed into a Specman costume. Saw Mark and Stevie in the hallway, who moved out the way to let me through. Mark told me to drive safe, and I assured him I would. And then I left the store, and was on my way to the hospice.
Being the middle of the day, the traffic going through Wellington and into Lower Hutt was pretty minimal, so it took very little time to get to the hospice. I even beat the ambulance who was taking Mum there. I had only a few minutes to wait though, before Nick, Dad and Mum in a stretcher turned up and the ambulance staff put Mum onto the bed. She was almost completely incapable of speech now, I realised. They'd ask questions and she'd respond only with nods and shakes of her head.
The rest of that day seems a little blurry now. I didn't leave the hospice that afternoon or early evening. My aunty Helen came around at some point and gave us all food for dinner and such. Helen was a lot of help actually during those next few days.
Taina got here. I can't even remember now, if he caught a bus and met me here, or whether I did go home at some point and pick him up. It all becomes hard to remember.
That evening, at around 8 or 9.00, Mum seemed to fall into some kinda sleep/unconscious state. Her eyes were open, staring straight at the ceiling, but we couldn't wake her up and she didn't move at all. She was still breathing, but the nurse told us her breathing was very shallow and her pulse faint, and we should prepare for the likelihood she was well on the way out.
I just remembered now. I did go home later in the afternoon and then come back before dinner. That's when I picked up Taina. I remember, I spoke to Dad and Nick before I left the hospice, asked if I should contact work and see if could get the next couple of days off. They said yes, seemed almost annoyed that I felt I had to ask. Dad made a comment that I'll still be able to get time off next year for the wedding/honeymoon. As if that was why I was hesitant to get these next few days off.
Hardly. I know the wedding is still seven months away, and I'll have no trouble getting the leave when I need it, I'm sure. I just wasn't looking forward to asking for those days off, because I knew being a keyholder, me being away meant someone, probably Richard, would have to work extra hours to cover me. He already works long hours as it is, and he'd already come in the previous Saturday when he was supposed to have the day off. I didn't want him exhausting himself just to cover me.
Plus, I didn't know whether I was entitled to take the time off. It wasn't bereavement leave, as Mum was still alive. I wasn't sure if I could take it as annual holiday leave, because I hadn't applied for it in advance, and normally we are supposed to apply for leave like 4 weeks in advance. I wasn't sick, so it wasn't sick leave. And I couldn't afford to take it as unpaid leave.
Anyway, I called Richard that evening, and he put up no resistance to me taking the next couple of days off. Truth be told, I wouldn't have minded having to work. Sure, I would have spent the days wondering how Mum was doing. But the time would have gone quicker that way perhaps.
After the nurse saying Mum was on the way out that night, Nick was determined he wasn't going to leave Mum's side for more than a minute. Dad had already decided previously he was going to stay overnight. I wasn't exactly told I had to stay, but I felt that Nick would somehow be offended if I wanted to go home- like it meant I didn't care about Mum.
I did care about Mum. But I didn't really want to stay overnight. I felt even if Mum wasn't going to make it through the night, missing her last moments wasn't that big a deal. She was already passed the point where she seemed like the person I've known all my life. She couldn't talk properly, was confused a lot of the time, and looked so unlike her normal self: pale, thin, weak. My last chance to be with her as the Mum I knew and loved: that moment was already gone. This Mum here, still alive, was a creepy, ill version, and what was the point in being around her if she wasn't awake enough to know I was there?
Nevertheless, I agreed that me and Taina would stay overnight, mostly to keep Nick and Dad happy more than anything. We went home briefly though, to collect my contact lens case and fluid and a couple other things. And then we went by Mum and Dad's house to collect a few things Nick needed to stay the night too.
Sadly, I didn't bring a sleeping bag. There weren't enough blankets around, or enough beds. Dad took the spare bed next to Mum, with a spare blanket. Nick slept in a reclinable armchair with the other spare blanket. Taina took the other armchair across the room. And I opted for a cushioned alcove by the window with cushions- long enough to lie out flat, and comfy enough certainly. But it was right by the window, and the windows had been left open because Mum was hot and sweating with fever.
It was very, very cold that night. I had warm clothes on, multiple jerseys and jackets, and I put on Dad's coat too in the middle of the night. But it was just too cold. Middle of the night we closed the windows and turned the heater on- it was still freezing. It's not to say I didn't sleep at all that night because I did, but it was definitely not a pleasant night. Even after Nick migrated to the couch in the family lounge and I took his armchair, further away from the window, it was still freezing.
Friday. A busy day. I awoke from my terrible, disjointed sleep at around 6.30am, when Mum woke up, confused, telling Dad to help her get out of bed because she needed to go to the toilet. She was quite distressed and it took Dad several minutes to explain to her that she couldn't get up, she was no longer capable of standing or walking, and she didn't need to go to the toilet as she had a catheter set up already in her bed with her.
I got up, seeing Taina was getting ready for work, and said my goodbyes to him before he walked to work from the hospice.
The day was filled with visitors. I was grateful, it was nice to see people and speak to people, and there were gifts of food and coffee for us so we didn't have to go out. I went out around early afternoon though, picked up Taina from work and relaxed in the mall for a little bit. It was nice to get away from sitting anxiously around Mum's bed, waiting, wondering. We went home for a bit too, went for a walk around Heretaunga Park because it was a nice sunny day. And then grabbed a couple of things Dad wanted from his house and headed back in.
By dinnertime, the visitors had subsided. Mum was asleep again, but unlike the previous night her breathing seemed deep and regular, and it seemed she was okay for now. We discussed what to do that night, and decided instead of us all staying, maybe one person would stay while the rest of us went home to get a proper night's sleep.
I didn't volunteer to stay. Taina had work again early the next morning, plus I was very tired from the lack of sleep the night before and really wanted to be in my own bed. So Nick decided to stay, and Dad went home, and me and Taina went home also.
Once I got home, I called Jess to tell her what was going on with Mum. She had been really good these last few weeks, texting, meeting up with me to see how I was going. So I figured I'd update her on Mum's rapid deterioration in these last few days. She asked if I wanted her to come over and talk, but I told her mostly I just needed sleep, and would see her later on.
I watched a couple of episodes of Friends on DVD just to relax a bit, and then went to bed at about 10. It was nice to be in my own, warm bed and I fell asleep almost instantly.
When I was awoken by my cellphone, I thought it was my alarm and that it was morning already. But in those first couple of seconds, I realised it was still dark and the ringtone I was hearing was the one I get when I'm getting a phone call. I picked up my phone and answered. It was Nick. Mum seemed to be even worse, and I'd better come down as soon as I could.
Sigh. After I hung up, I looked at the time. Around 3.30am. I got dressed, at first was going to tell Taina to do the same, but then I thought about how he had work to go to that day, and instead I asked if he wanted to come or would prefer to stay and sleep a bit longer. He opted for sleep.
I didn't bring much with me. I figured Nick and Dad would want me there as soon as possible, plus chances are if I needed anything, there'd be a chance to go home and get it later. Especially if Mum didn't make it in those next few hours.
I didn't rush, but I got there quite quickly due to the fact there was no traffic at all at that time on a Saturday morning.
Dad arrived soon after me, and there we were, me, Dad and Nick, huddled around Mum's bed in the dark. She was definitely breathing quickly and shallowly now, well and truly in some coma-like state where she didn't wake up regardless of people coming and going and all the noise. But despite being barely able to hang in there, she stayed in that state all the rest of the night. And the morning. And the afternoon.
It was the longest day ever. I hadn't brought anything to do. I wished I had a book, or the ipad so I could play games or something. But I really had nothing I could do but sit there and watch. I hadn't brought my contact lens stuff so I couldn't take my lenses out and go to sleep. I had to stay awake, and sit and watch. The nurses brought coffee and biscuits. And then I continued to sit.
Taina got up to go to work around 6.30. We had a text conversation about what was going on. And still I sat and waited.
Mid-late morning, Aunty Helen came around again, brought us more coffee and brought around my young cousins, got them each to go see Mum, tell them they loved her even though Mum was unconscious and couldn't possibly know they were there. I think she felt it would help the kids more than anyone else, help them to understand the concept of Mum's dying more by seeing her in that state.
It was nice to talk to Genevieve though, and compliment my little cousin Lucia on her very cute sparkly gumboots.
But then they were gone, and we were back to sitting silently, watching. Late morning, the nurses wanted to clean Mum up a bit, wash her hair etc. So me, Dad and Nick went for a walk down the street and back. Got back around lunchtime and had some more of the food given to us by Aunty Helen, and by our family friend Janine Pilcher.
And then we were back to sitting and waiting. I was getting so tired, and so bored of sitting doing nothing. The chairs were uncomfortable and I wished I could go home. But I knew Nick and Dad didn't want me to leave. I also wondered if maybe I would regret it, if I left and didn't see Mum's last moments. I didn't feel like it was something I wanted or needed to see, but Nick and Dad seemed so determined not to miss it, I thought maybe I'd better try to be there, just in case I regretted it later by not being there.
Mid-afternoon Helen came back, along with my Grandma and Uncle Adrian, who had come across from Australia. We all sat and chatted. I really knew then Mum was almost gone. With all the noise and chatter in the room, she never stirred, not once. Taina finished work and came back to meet us there.
A couple of hours went by. I was almost 6.00. I was so tired. I was absolutely exhausted. I'd been up since 3.30am, not even a slight nap since. I'd spent almost that entire time sitting in these horribly uncomfortable chairs by her bed, watching her breathe in and out, not getting any worse, not getting any better. Every so often her breath would stop a second. Like she'd gasp, and then pause. And there would be this moment of suspense, like, "Is this it? Is she gone now?" And then a second later, she was breathing again, in and out, in and out.
This would happen every twenty minutes or so. It was teasing me. leaving me on tenderhooks, not knowing just how much longer this would take, just knowing what the doctors had told us. "Soon." "Anytime now." "A few more hours at the most."
Normally if I feel tears coming on, I can hold back, especially when people are around. But by 6.00 or so, I felt my eyes welling up. I'm not sure if it was the exhaustion, or the frustration and anticipation, or what it was. But I was struggling to keep it together, even with Helen, Grandma and Adrian around. I mumbled something about being hungry and getting some dinner.
I headed down to the family kitchen down the hall and heated up some more of our leftover food. Was eating it, trying to make myself calm down so I could head back to the room. But I couldn't stop crying. And strangers kept coming in and out, other family of other patients, and it got me so angry, I just wanted to be alone so I could calm myself down.
Eventually Taina came in, held me while I cried. And then Aunty Helen came in, said we needed to head back down because something had changed, and also saying she, Grandma and Adrian were leaving now. I managed a slight goodbye, and headed back down. Dad and Nick were alone again with Mum. Nick told me Mum's eyes had shot open suddenly and her breathing had gotten slower. She was still completely unconscious. Dad told me to come and hold Mum's hand. But when I tried, my hand was shaking and I kept crying. And then that set Nick off crying, and Dad too.
Dad told me it was okay if I'd prefer to leave the room and sit quietly somewhere for a bit, so I did. Taina came with me. I had it in my mind that the main problem was just exhaustion, and I was contemplating calling Jess and asking if she could bring me some contact lens stuff so I could have a nap. But first Taina pointed out a 'Quiet Room', where we could where no other patients or people would come past. We went there, and I sat in the dimly lit room, tears streaming down my face.
I checked my cellphone. Mark from work had sent a text. It had a photo he'd taken off the staff at work that day, standing around, waving to me. The message said "Thinking of you Kid, we all missed you today. Hope everyone is doing ok."
If I wasn't crying enough already, that just made me cry more.
After a few minutes, a nurse came in to see us. "Sorry, I've been told to come and get you. I think she's died now."
Me and Taina came back to Mum's room. There she was. No breathing, nothing happening at all. Just still. Yep, she was gone. In the end I did miss the final moments. But in the state she was in, she'd have had no idea I was there. I got to speak to her and see her many times in the days, weeks leading up to that point. That's what mattered.
And I don't have any regrets. The next few minutes were the most emotional few minutes our family has ever had together. Our family has always been terrible at emotions, it frustrated me so much when I was younger. Noone ever says "I love you." We never hug, never show any affection.
But that night we did. Nick broke down and cried, and I hugged him. Dad cried, and we both hugged him. Nick told us he loved us, and told Taina he's the greatest brother-in-law he could ask for. Taina cried. Dad said he wished he could go back in time twenty years to try and save Mum, I made a stupid joke about not having a Tardis, and we all laughed and cried. Dad told me and Nick he knew Mum was very proud of both of us. And I just thought, "If only we had managed to be like this earlier. If only we were always this open with each other. Then maybe I wouldn't have spent so many years being angry at Mum."
But anyway, a few days have passed now. I'm off work until Saturday. Mum's funeral is on Thursday at 2.00, so there's a lot to organise. Me and Taina have spent most of our days at Dad's place, just trying to help out and spend time with Dad and Nick, make sure they're coping okay.
For my own part, I'm fine. So far, anyway. I know that Mum's passing, quick though it was (it's only 5 weeks since we found out she had cancer) is a good thing, better than months or years of suffering. Now Dad can get on with his life instead of being stuck caring for Mum.
And now instead of wondering and worrying if Mum will make it to my wedding, I know for a fact she won't. It's a shame. But it's a certainty now. And that's easier to accept than the uncertainty, the wondering.
And now I can stop being annoyed at Mum. I can remember the great things about her, the times we played board games together, watching Mum play Commander Keen on the computer. The family holidays. Christmasses. Birthdays.
For a little while, in my early twenties, I thought my Mum had ruined my life. It was her fault I was overweight. Her fault I had self-esteem issues. Her fault I had trouble expressing emotions and being open with people. Her fault I was secretive and closed.
But none of that means anything anymore. I'm an adult now. And everything I am is down to me. And any negative things she's made me to be, it's up to me now to change it, to become the person I want to be.
· Tue Jun 24, 2014 @ 11:49pm · 0 Comments