What I heard next has stuck with me all those years, and was something I could never really understand until that moment when I was holding my own mother’s hand in the nursing home. Mum had said to Dad, ‘That’s a relief.’
Mum knew what it was like to battle this disease. She had battled it with her own mother, and was now about to succumb to her own battle with it. Would she have been relieved to be free of it? Would she have been horrified to think her own family had just made a decision to put her on palliative care?
As I sat there, holding her hand, I was hoping she would just give my hand a little squeeze, or open her eyes just to tell us that everything was okay, and that we were making the right decision.
She didn’t.
22
It all comes down to this
The rest of that day was a bit of a blur. When I got home I sat down and made a list of all the people I needed to update on the situation. Mum was such a wonderful friend and auntie to so many people who would want to see her before she left us. The first phone call was to my cousin, who as a kid spent a lot of time with my parents. She went on holidays with us, and spent weekends at our house, and often referred to Mum as her ‘other mother’, but not in that rap ‘sista from another mother’ kind of way.
When she answered the phone, I managed to say ‘hi’, and that was it. She knew something was wrong, and was trying to get information out of me, repeatedly asking if Dad was okay. Odd, isn’t it? Mum had been sick and dying for so long that most people never really expected anything to really happen to her, and were more worried about how Dad was faring. When I told Dad how people were asking about him, his response was, ‘I should bloody go down and buy a lotto ticket because it seems I am lucky to be alive.’
I wanted to spend as much time as I could by Mum’s side, but needed to go into work the next day for a quick script meeting. The distraction would be good for me. I got up early and headed to the nursing home to see how Mum was, and how Dad was holding up. He was going to have to sit there for the next two days to two weeks just watching his wife slip away.
When I arrived, it became obvious that word had got around—I couldn’t go more than two metres without being hugged. Mum had been there so long, ever since the nursing home had first opened, and was like part of the furniture—and just like us, her nursing home family were having a tough time dealing with the inevitable. They were about to lose someone they had cared for over the past six years—and they would also be losing Dad, too. As much as he could be a daily pain in their arses, he was also part of their family, and losing both Mum and Dad would have a huge impact on the people in that building.
The nursing home had a different feel about it that day. Carers walking around would normally be buzzing past, throwing comments at Dad and stopping for a chat. But not that day. It was quiet and sombre. People were just looking over and giving a smile that basically said, ‘I know what has happened and I am sorry, and if I come over to chat we will all probably cry, so I’ll just go about my business if that’s okay with you.’ Even the residents seemed to be a bit less crazy that day.
When I eventually got to the communal living area, Mum was sitting in her usual chair, in her usual spot by the window. Dad was right next to her, holding her hand—as he had been for the past six years. I’m not sure what I expected to see, but the normality of the scene was quite weird. Dad said she’d had an uneventful night’s sleep, and had her eyes open for a little while just before I arrived. Dad was looking very stoic and was virtually pushing me out the door to go to work: he had it all under control, and there was nothing I could do. I certainly sensed that he just wanted to be alone and quiet with Mum—to spend as much quality time with her as he could—and I wasn’t about to begrudge him that.
As I pulled into the car park at work I took a few deep breaths and mentally prepared myself for my meeting. I entered my office to find an enormous bunch of flowers on my desk, and by the time I turned around a semicircle of colleagues had gathered outside my door, most of them offering that same smile I had seen in the nursing home that morning. It must be a universal look that we all use when we don’t know the appropriate thing to say. It turned out that my assistant had called my husband to see if I was okay, thinking I’d seemed a bit distracted during Wednesday night’s show—and all this time I thought I’d been master of my emotions. Still, I remained fairly composed, and tried to play down the situation, saying words like ‘Mum’, ‘palliative care’, ‘couple of weeks’, ‘all good, not sad’. I needed to focus to get through the meeting; the only trouble was that my face wasn’t matching my brain, and I have absolutely no idea what was said for the next 90 minutes. If felt almost disrespectful to Mum for me to be sitting in a room with a group of people laughing at jokes and video clips, but there must have been moments when I forgot about what was occurring in a quiet communal living room a 45-minute drive away because I did manage to laugh that afternoon. For all I really remember of that day, I could’ve approved a three-legged dog reading a newsbreak. (Note to self: that would probably be a ratings bonanza!)
Meeting over, I announced to my team that it would be best for the show if I took a bit of time off, as I was probably only going to be a liability for the next week or so.
Okay, so joke hat off, grieving daughter hat back on as I headed back to see my dying mother.
Situation still normal at the nursing home. A few visitors were sitting around chatting with Dad as I sat with Mum, holding her hand. Every now and then Dad would get up and walk over to Mum with a drink, push a straw into her mouth and ask her to have a sip. I knew she couldn’t swallow, so when she started coughing it was no real surprise. Dad said he hadn’t managed to get anything into her all day.
At this point I was confused. Last time I checked, we had made the decision to stop feeding Mum and allow her body to shut down peacefully. I wasn’t sure how to broach the topic of ‘not feeding’ with Dad, but I had to say something.
‘I don’t think we should be giving her anything, Dad, as she can’t swallow, and she could choke.’
‘Well, if we don’t feed her, she is going to just die,’ he answered.
‘Dad, we agreed that we were going to stop feeding her.’
‘Well, I just don’t think we can sit here and not try to keep her alive. I’m not sure we’ve made the right decision.’
‘I think we did make the right decision, Dad—but if you want to change your mind, then it is totally up to you and we will not question it.’
As I gently tried to remind him of the decision we’d all made together, as a family, only two days before, I also remembered that this was a man who was ready to sign a ‘DNR’ form years ago. Good decision not to bring that one up.
I went to chat with the nurse on duty. She was aware Dad had been trying to give Mum liquids—and food, much to my horror—throughout the day. She told me that at this point it is very normal for family to question these kinds of decisions, as making a decision is often easy, but watching it being enforced is tough. Her advice was reassuring: Mum wasn’t going to get much liquid through a straw anyway, so if it made Dad feel better about not starving her, then we should just let him do it.
So I was on board with the non-feeding but happy to watch Dad try to feed Mum plan. Still, it broke my heart every time Dad got up to put that straw in her mouth. He was so devoted, even in those last days, and determined to do anything to keep the love of his life by his side.
I stayed for most of the afternoon, then headed home to get my son fed, bathed and into bed. The next day was Saturday and I wanted to take him to see his nana; the day after Saturday was Father’s Day. I hadn’t even thought about what to get Dad, or my husband—or gifts from my son to his Pa and dad. I was determined to make things as normal as possible, so once my son was in bed I went shopping for gifts. As I wandered around the mall a strange thing happened. For at least the past ten years, I had always walked around shopping centres with the curse of Mum’s disease over my
head. I was forever looking for gifts that would stimulate her or make her more comfortable—and these gifts were never easy to find. Every birthday, Christmas and Mother’s Day would result in an unsuccessful hunt for just the right thing. As I meandered from shop to shop looking for Father’s Day gifts, I kept seeing things that would have been perfect for Mum, but I didn’t buy them—it was too late. Mum didn’t need them anymore. It was all about to be over, and the consequences of that were having a ripple effect on everything I saw, did and thought. It was a very surreal shopping expedition, and I arrived home with nothing for Mum, Dad or my husband. Thankfully my son had a very interesting piece of artwork and an ‘I love you Daddy’ card that he had prepared at school earlier. He also managed to produce a ‘Happy Father’s Day Papa’ card out of his bag. What a champ.
The next morning my husband, my son and I headed over to the nursing home. To keep things as normal as possible, I set up the coffee table with muffins and ordered lattes for everyone. We all sat around chatting and, from the point of view of a stranger wandering by, all was well in this little happy family scene—except that in this nursing home there were no strangers. Everybody knew the situation and was feeling the enormity of it, so we had many visits from passers-by expressing their condolences. My son knew something wasn’t right. We hadn’t told him his nana was dying; he was only five, so we knew he couldn’t really understand the reality of it all. He did ask a few times why so many people were crying, so I told him Nana was a little sick and people were sad about that. He just shrugged his shoulders. To him, Nana had always been sick.
My sister arrived to take over the shift; we felt it was important for at least one of us to be with Dad. My brother was flat out at work, and with five adult children of his own, time was never on his side. He hadn’t visited Mum for a few days, but was planning to see her and Dad on Father’s Day, along with most of the family. Even though I had clearly failed to procure a gift for Dad, I wanted Father’s Day to be special for him, and for everyone to be around him.
As I was sitting next to Mum, I could hear that her breathing was a little laboured. She didn’t seem to be in any pain, but she had a bit of a chest infection, so the nurse was planning on setting up an oxygen mask for us to place over her mouth whenever she seemed to be struggling for breath. The oxygen mask was nothing new, as Mum had already had a few of these chest infections, so by the time we said our goodbyes, my sister and father had it all under control. Dad had decided to stay in Mum’s room from now on, just so he could be there if anything happened, so we had set up a comfy area in her room where he could get a few hours sleep.
Mum’s room was not very big. It had her bed, which was a hospital-style one with a big metal headboard and adjustable rails either side, and one of those moulded mattresses that kept her in position throughout the night. Next to her bed was an armchair that, judging from the indents in the seat, Dad spent many hours occupying. Her bed was parallel to a window that overlooked a paddock filled with sheep; Dad would’ve used that as the source of a joke more than once when the nurses came in at night to check on her. At the foot of the bed was a TV unit, which had a few baskets underneath filled with DVDs and books. The walls were adorned with family photos and a few printed canvases of orchids. She had a bathroom furnished with a shower, hand rails and a toilet with one of those potty chairs sitting over it. In real-estate terms it would have been described as a comfortable, modern one-bedroom studio with WIRs and a separate bathroom.
I gave Mum a kiss, told her I loved her and would see her in the morning. I also asked her not to give Dad any trouble as tomorrow was Father’s Day and I didn’t have a present for him.
She must not have heard me.
Early next morning, after a sleepless night, I was woken by a phone call from Dad. He sounded a little distressed, and said Mum had a terrible night, struggling on and off to breathe, but was now resting comfortably. I said I’d head over as soon as possible, but he told me not to panic as she was ‘good as gold’ at the moment, and just to head over when we were ready for our Father’s Day brunch at 10 a.m.
I called my sister to update her and also reiterated that Dad said not to rush up as Mum seemed pretty comfortable. I called my brother, and as it turned out he was getting an early start and was already on his way up there. After going over the day’s list of things to do in my head, I slowly extracted myself out of bed. I went into my son’s room and got his clothes ready, then headed for the shower.
As I stood in the shower, steam filled the room and the hot water cascaded down my back. I remember thinking that we were likely to have a few restless nights over the next week or so as Mum started to go downhill. How bad was it likely to get? Would they just monitor her around the clock? I assumed Mum would want all of us there, gathered around her as a family, when she drew her last breath.
The shower screen door opened and broke my train of thought. I turned around and my husband was standing in front of me with my mobile phone.
‘That was your brother,’ he said.
‘Let me guess—flat tyre?’ My brother was renowned for having something go wrong at the most inopportune times.
‘Your mum’s gone.’
‘Gone where?’ I enquired, feeling very confused. They’d better not have taken her to a hospital without checking with us.
‘She’s gone.’
‘What do you mean she’s gone?’ I asked again.
‘She just passed away.’
‘Oh,’ I said.
I closed the shower screen door.
I still had conditioner in my hair, but there was no rush now. Mum had gone, so why did I need to rush.
I stood in the shower for another five minutes, making sure I got every last bit of conditioner out of my hair. That particular brand was not my favourite. It left my hair feeling a bit squeaky, so I really should get a bottle of the one with lavender in it that smells so nice and leaves my hair really soft and shiny.
Yes, that’s exactly what I will do.
23
One last time
I drove to the nursing home alone. There was no point telling my son what had happened—Dad would mostly likely stay with us for the next few days, and the last thing he needed was a five-year-old asking questions about how dead Nana actually was.
I have no idea how I really got there, and how many red lights I may have driven through by the time I pulled into the car park.
Deep breath.
Near the front doors, next to the coffee shop, two carers were hugging each other, clearly distressed. I wonder what has happened, I thought to myself. As the doors opened they both walked over and embraced me and I realised it was my mum they were mourning. Strangely composed, I began comforting them for their loss. Then the woman who ran the cafe came out to see me. We’d spent many hours in that cafe and had become quite close to her. She hugged me and whispered in my ear, ‘Your mum was a beautiful woman.’ I tried to comfort her too, as best I could.
Comforting someone in a time of grief is a funny thing. I found I wasn’t comfortable just sobbing on everyone’s shoulder. In our family, crying had always been made fun of—not in a mean way, but in a teasing kind of way. Every time Mum cried, which was often, Dad would call out, ‘Here come the waterworks!’ and one of us would run to grab a box of tissues.
I had inherited my mother’s ability to cry at the drop of a hat. We both wore our emotions on the surface and it didn’t take much to set us off. I would tear up at the first sign of happiness, sadness, pain, you name it. It was a beautiful trait in her that she was so emotional—and then, being the hilarious family we were, we made fun of her for it. I’m embarrassed whenever I cry in public, so when I feel myself tearing up—which is often—I try to diffuse the situation with a joke or shut it down before it escalates to tears. On Mother’s Days, and anniversaries of Mum’s birthday or death, I find myself warning people not to be nice to me, or I’ll cry. Maybe it’s that old adage of ‘once the floodgates open’.
I headed up to Mum’s floor. As the elevator doors opened, I looked towards the communal living area, where I would have normally seen Mum sitting in her usual chair, in her usual spot by the window, with Dad holding her hand. It was empty.
I turned to walk down the corridor towards Mum’s room; a group of people were standing outside her door. As I approached, one of them walked into Mum’s room and came out with my dad in tow, followed by my brother. Dad walked towards me and we hugged. Neither of us were crying. I was waiting to hear him say those words my mother had said 35 years ago when her own mother passed, but they didn’t come. It wasn’t a relief for him. He didn’t want it to end. He would have been happy to sit and hold her hand until they came and wheeled him out in a box.
We broke our embrace and I looked into his eyes. I was going to ask if he was okay, but figured it was probably a redundant question.
‘Have you slept?’ I asked.
‘I’ve got plenty of time to sleep.’
‘Have you eaten anything?’
‘I’ll get something later.’
‘Do you have a clean shirt? That one has coffee on it.’
He looked down at his shirt. ‘I’m saving that bit for later, for when the cafe is closed.’
What a guy. He could still throw out a one-liner an hour after his wife of 58 years had died.
We walked into a little room that was adjacent to Mum’s. I gathered this was where families congregated in these situations—like a bereavement holding pen. There was a family pack of Arnott’s assorted biscuits on the table and a box of tissues. An urn on the side bench was steaming away. What more would we possibly need at a time like this? Dad, my brother and I sat down at the table. I was eyeing off an orange cream biscuit just as my sister arrived. She was visibly upset, which set me off, which set Dad off, which set my brother off. Eventually we were all hugging and crying and sniffling and my desire for an orange cream was being marginally challenged by my need for a tissue.
Not Right In The Head Page 13