15 Jun 2015

Caring when there's no one else to help

9:31 am on 15 June 2015
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Photo: Illustration: Kerry Ann Lee

I remember the first shot of morphine I ever gave my mum. I cried afterwards, in a long, blank corridor filled with doors closed on the dying. A kind nurse kneeled beside me.  

“It’s hard, isn’t it?” she said. “The way you have to change roles.” And I realised that my mum wasn’t really my mother anymore. Though she was who she had always been, I was the one who had to parent. I had to keep her safe, fed, and free from pain. I had to carry the weight of her life, and I had to do it completely alone.

It’s not easy to talk about. It feels like a confession. I speak often about my mother’s disease – she battled cancer for five years – and how brave and strong she was.

So it seems selfish, petty and ungrateful to talk about the things I had to do, as her caregiver. I don’t want anyone to believe that I wouldn’t have done it. Worse, it seems like an invasion of her privacy. Some of her most vulnerable moments were my hardest, and it was the failure of her body that made my carer role so real.

But there are children across New Zealand caring for the adults that they love. Without policy, funding or any real frameworks of support, so many of them, like me, are crying in hospice corridors. They’re missing school and making themselves sick with worry. They believe that they are completely alone. Just like I did.    

It was seven years ago that my beautiful Mum died from the cancer that took almost every part of her. She was so thin that she had to be shifted from her bones several times a night to avoid sores. She could no longer digest food, but chose to eat for pleasure, and thus vomited constantly throughout the day and night.

Some nights she lay in pools of her own blood until someone came to help her. That person was usually me. Most nights she fell asleep as I read to her from some trashy novel that told a story of life after death, or held her hand as she listened to a meditation track drone on about melting into pools of light.

I was 15 when she was diagnosed and 19 when she died. For much of that time, but especially at the end, my mother and I were a team that fought together.

So when Mum decided that the thing she wanted above all else was quiche, it was my job to make it for her. That it was Easter Sunday, and that all the shops were closed, didn’t strike her as particularly important.

So I made pastry from scratch. I baked it blind. I fried bacon, beat eggs and, sweating from the fluster of creating something appetising, I presented the quiche to my mum with pride.

She took a bite and immediately vomited.

“I’m sorry,” she said, pushing the plate away.

I knew that she was sorry. I know it must be hard to be cared for – to surrender your life to someone else, to your child, and to rely on them for everything.

My mother didn’t want me to lift her off the toilet. She didn’t want me to bath her on the days her home aide didn’t show, and in the journal I inherited after her death she wrote “I just want you to have a normal life”.

They’re missing school and making themselves sick with worry. They believe that they are completely alone. Just like I did.

Mum didn’t want me to have to go down to the WINZ office and fight for our benefit payments to recommence (cut off because she failed to attend meetings from the palliative care unit, in which she lay hallucinating on a dose of drugs that barely managed her pain). She didn’t want any of it, and she didn’t want to die.

But I, too, was so tired. I had insomnia, anxiety and asthma so severe that I couldn’t climb our home’s stairs without help from my inhaler. I hadn’t seen my friends in weeks. My legs were covered in a rash I scratched compulsively as I lay awake at night, waiting for her to call out to me.

So when she couldn’t eat the dish I had slaved over on her request, my fatigue turned into anger. My quiche shattered against the wall, along with its ceramic dish, and the floor was slick with egg. I knew it was just another mess I would have to face, but for a single moment in the five years of my mother’s battle, I finally felt that my grief was visible.

I spent so much of my time as a carer presenting as strong, tough and unfazed. I spent a lot of time shaking with unspoken rage, directed towards the family I felt had let me down. I isolated myself even more than circumstance dictated so that no one was able to offer something they could then take away from me. The main thing I wanted was more time. Because I spent a lot of time wishing I could leave the house that had begun to feel like a prison, and even more time feeling guilty for failing in my ability to give everything to the person who raised me.

Kirsti and her mum Trudi Arndt Whalen.

Kirsti and her mum Trudi Arndt Whalen. Photo: Unknown

What I forgot to do was grieve. My mother was dying, in pain, through my bedroom wall. I think I thought that if I just worked hard enough, I would save her. When I finally chucked that quiche across the room, for a single moment I was giving up. But I cleaned up the mess, and I made her a hot water bottle, and I changed her pain pump needle and I brushed her hair. I told her it was an accident. I told her I would make her another quiche the next day, and that we could try again.    

I wouldn’t change the role I played in my mother’s life and its end. I just wish I had been offered a little more help. I wish I had been able to meet other people in the same position as me, because I thought I was the only one. I thought that no one could possibly understand what it was like to put yourself aside completely for someone else.

Carer is not the most empowering term. It implies that the person cared for lacks ability in some aspect. That they need help. People don’t like to admit to that need, and I understand. The thing my mum wanted more than anything else was to be treated as a person who remained capable and autonomous, almost to the end.

But if we deny carers the right to their own title, then we silence them. They need help too. That they are built for this, or somehow special, is a common perception that is untrue. Most of the time it’s that they are the only person who can step up, and so they must. It is painful, tiring, bittersweet work. It is underrepresented, and misunderstood.

There were not, and still are not, enough services for kids like me. I believe there is a gulf in the questions being asked. I was asked what I could do, but not if I should be doing it.

Though my issues paled in comparison to my mother’s, I was sick in ways I still do not feel I deserve help for. I have a back injury I sustained lifting my mum, as well as other wounds less easy to articulate. My ability to engage with my family is still fragile, because I struggle to trust them not to walk away. The day we chose my mother’s coffin, I was left standing in the rain without a ride home. No one asked me if I needed one and perhaps that is on me. My ability to ask for help is negligent.

Need, pain and hope cannot be measured. They are merely felt. So while a loved one is hurting, their carer hurts too. The ways in which I, as a carer, were crumbling may have been unexpected. That doesn’t mean the pain was fictional. 

There were not, and still are not, enough services for kids like me. I believe there is a gulf in the questions being asked.

There were, of course, wonderful moments that my mum and I shared. I remember the first time she showed me her bald head and we laughed into a wild dance that spun around the living room, a funny little jig that became a tradition only we shared.

I shopped for giant bras with her as she swelled with medication and laughed with her in the changing rooms. I went to chemo with her, sitting beside her for hours at a time and eating chocolate.

I pulled faces as eight-inch needles were inserted into her abdomen, making her laugh and causing the doctor to scowl as he lined up his needle again. I learned to parallel park with the assistance of the attendant on the oncology ward. I knew my mother, completely. So when the end came, and decisions had to be made, I knew her wishes better than anyone.

It’s not easy to know someone so intimately, but it is an honour. To love like that is a rare gift. Though I carried my mother up the stairs each night, she was never a burden. Because the greatest weight in caring for someone is not their mass, but the mass of their wishes and the pain of executing them. Loving someone, completely, is a fight of spirit for that person’s dignity.   

I don’t believe that things happen for a reason, but I do believe that we can take reason from things that happen. If Mum were still here, I would not be as kind. I would be less willing to love those I don’t understand, and less able to let go. I might have been more of many things – more stable, more hopeful, more gentle in my approach to loving people – but less forgiving, less compassionate and less capable on my own.  

I’m now more willing to love until it hurts, as long as we can talk about the pain. I don’t think I would have learned this any other way. In death, and even more in dying, we learn life. I am lucky to have been able to give what I gave to my mum, even if I should never have been asked to.

And loving someone doesn’t end. We just become more capable of putting that love to use. More necessary in our actions for others. Less afraid of death and more urgent in living. These are all good things, as long as we remember that even the strongest among us still need a little help.