Monday, August 31, 2015

If Tomorrow Never Comes

The lights are low, it always seems like night in here even though the sun is shining outside. The only sound is an artificial pump which makes a whooshing sound as it performs it's monotonous task of forcing oxygen and then removing it, from my mother's lungs. She is surrounded by machines. State of the art machines that can help people back to health and provide hope to patients and loved ones. These machines have the amazing ability to give compromised patients a second chance, to get back on their feet and continue living their lives. The machines are mostly quiet with the odd beep. 13 days ago I would stare at them endlessly, treasuring their little signals of positivity. They provided me with comfort and hope that my mom would get better and allow this little snafu to be a blip on her radar of irritating hospital stays. Her lungs haven't been good and she contracted a chest infection that progressed quickly. I was so grateful for those machines which allowed her to recover from the infection and soon she was breathing on her own again and the machines were wheeled away. She was almost back to normal when......

I got to the ICU and her bed was empty. She's in isolation. Speak to the head nurse. She has contracted a super bug from the hospital, MRSA. I know what MRSA is, it can be life-threatening, but isn't to most. It is for her. She deteriorated very quickly after the cocktail of antibiotics, necessary to fight this bug, were delivered intravenously into her frail body. The machines were quickly re-attached.

Two days ago my mom started behaving strangely and "hallucinating" and it took me a while to fully comprehend what was happening. She wasn't hallucinating, she was glimpsing the other side! She was "getting her affairs in order." She wasn't afraid but she didn't want to leave me. She wanted to watch my children grow. Lettuce was still so small she said. She told her older grandchildren that she would watch over them and wait for them on the other side. When we said we'd be back the following morning, she told us she didn't think she'd make it through the night. The next morning the machines alerted medical staff that her condition was unstable and there was a need to re-interbate (which she hated the first time) and so began a plethora of new routines to keep her alive and the machines happy.

Now, as I sit and watch the life slowly drain from the woman who is my everything, I find myself "wishing them further" as my mom would say. The lines on the graphs all do their job and show how her body is doing and spew out the statistics of her organs and blood pressure. She is maintaining. But I can see her, they can't. I can feel her, they can't. They don't see what I see. What my eyes see, but what my heart won't allow me to fully comprehend. Just like the drip in my mom's arm, the emotions are only dripping through me. Slowly. Drip. Drip. Drip. My brain knows it's all too much, I can't take it in all at once, so slowly the reality drips into my conscious and starts to move through my body until I begin to slowly piece it all together - all the drips add up. I don't want to even think it, but the thoughts and emotions keep dripping through me like somebody knocking louder and louder on the door, penetrating my consciousness. I want to be unconscious, like her and not have to feel what I'm feeling, but the dripping doesn't stop.

This lifeless lady who has been the only constant in my life since my very first breath, is about to take her last. I go cold each time this thought enters my mind and I force it back out. I want her to stay. There's so much still to do and say and experience. I don't want to do any of it without her. I don't want my children to have a birthday without her. I don't want to have a birthday or Christmas or Easter or ANY day without her. How do you say goodbye to the person who taught you everything you know - to walk and talk and read and sing and swim and dance and sew and roller skate and ice skate and knit and bake and play tennis and squash and badminton and Monopoly, to name just a few. This woman, who has single-handedly had the most profound impact on my life, is lying in front of me attached to machines that can't see her but they judge her constantly on a set of criteria programmed into their artificial brains. Those criteria are no longer important to me. 13 days ago they were the holy grail but today they are meaningless.

Those life-giving machines have become death-defeating machines. With every fibre of my being I want her to stay but I have to let her go. I have given her my permission and my blessing, if that is what she needs, but the machines keep going, methodically making her chest rise and fall as if she was breathing, circulating the oxygen around her listless body. Slowly her kidneys are shutting down and her body tissue is filling with the rogue liquid that cannot be expelled, but the machines keep taunting us, showing false signs of hope. Hope that has gone for me and my family.

I smile to myself as the reverend pulls out his smart phone with his bible on it to read some scripture to her and imagine what my mom would say if she could see it. The bible on a cell phone! That is ridiculous, the bible is a book, not a new fangled device! That is what it will be like from now on, imagining what she would have said.

I am sadly reminded of my mom saying that when it was her time to go, she wanted a quick "pop off" and hospitals are "for the birds," so watching her slowly fade away is nothing short of torture to us (and probably her too.) I want her to be shot of this hospital, of the disinterested nurses, of the pipes down her throat and up her nose, of the sewn-in/ stapled-in pipes in her jugular and her arm taking real-time blood pressure readings, of the oxygen measure on her finger, of the emotionless machines. I want her to be free. In my head I understand this but in my heart I don't want to know. This is the price of love and it's a huge price, but it was a huge love. That empty feeling in my soul is reminding me that in order for her to be free, I will be in my own tiny hell as my walls will close in, my world will become smaller and greyer and my soul will have a deep deep gash. Because, as selfless as I am giving her permission to fly to my dad, to her siblings, to her friends and family, I selfishly know that she'll be gone from me. What am I going to do when I fall apart and the only person who I need to help me through it can't be there? I'm going to need my mom!

The day after I wrote this post, my brother and sister from overseas called and I put the phone next to mom on the pillow as they each said their final goodbyes. She made some small movements so I was able to determine that she had heard some, if not all of what they were saying. Both conversations were like the 3 of us having tea and a chat in her lounge. Some of it was chatty (between me and my brother or sister), most of it extremely emotional as my mom lay semi-conscious on the bed. On the call to my brother I asked how his wife's thesis was going because mom was always very keen for details and he told us that they were still waiting for the results - it's taken ages. At the end of that call, mom made some big movements which looked like she was trying to get up and move her arms. Once again I told her that she was restrained (so as not to pull the pipe out of her mouth - hospital protocol). I said "I know you don't like being like this" and she made huge shaking movements with her head and I could hear her shouting through the silence "No no no!! I told you I didn't want to be like this!" I held her swollen hand and gently said that I didn't want her to be like this either, but it was up to her. It was her choice. The machines would keep her alive even against her will. She had to decide to go.

That afternoon I visited again and she made no movement and I battled not to see the similarity of her lying in a hospital bed unconscious vs a coffin. She looked like she had already gone. I told her it was spring day and the flowers were beautiful and as soon as she was free she would be able to see them all. The sweet peas, my dad's favourite dahlias and all the new buds sprouting. I couldn't think of anything else to say. I had said it all. So I began to sing. I sang every song that I remembered she liked and only stopped briefly when the emotions got the better of me. I had to be strong for her. I kissed her goodbye and there was nothing. That night I couldn't bear to go back. I felt like she had already left.

The following morning my sister-in-law was informed that she had received her PhD! I was so thrilled for her and I knew my mom would be too. I phoned to congratulate her. I knew I needed to shower and wash my hair before I went to the hospital but I'd been chatting a bit long. Something told me to just go to my mom. When I got there and asked the usual question "So how is she sister?" I was not expecting the answer I got. "If there is anyone you need to call, you need to do it now. Her blood pressure is very low and her heart rate is falling. Although I had expected this at some point, when it happened, I started to shake uncontrollably. I couldn't dial my brother's number. The nurse offered to do it. I said no. I phoned and said "she's going, you need to come." I didn't recognise my own voice. I then phoned my brother in Australia and told him the same thing. He phoned my sister.

I played my mom a video of her granddaughters watching a cow eating. Her heart rate increased. I lay over her with my head on her shoulder, cradling her head. I whispered into her ear. I told her that we all loved her and that she had been a fantastic mom and we couldn't have wished for better, even when we fought, we knew she had our best interests at heart. I told her that my brother was on his way. He texted, he was stuck in traffic on the highway. I begged him to hurry, but then on second thought said rather be safe, I was there with her. Suddenly I remembered!! I sat bolt upright "Mom!! there's a doctor in the family!! LL got her PhD!" I shrieked, probably too loudly, and my mom moved her head and her mouth crept slightly upwards at the corners as if to smile and her heart rate increased. "I just wanted you to know before you go that she got it!" The sister who was watching through the glass, came in and gently warned me that this excitement would prolong her leaving. I lay over her and hugged her again with my ear on her chest and listened to her heart beat slower and slower and slower. I watched the numbers on the machine get less and less until finally it went to 0 and the blue line flattened. I whispered "goodbye mom" and then a noise came out of me that I didn't recognise and have never heard before. It was an animal sound which probably traumatised my mom because her heart began beating again! I hurriedly whispered in her ear "No. Don't come back, I'll be OK. Go, it's your turn to do what's right for you, it's your turn to be free." Then her heart stopped again and I cried and cried and cried as if my own had broken in two.

Mom it was an honour and a priviledge to be your daughter. You were there to hold and guide me when I took my first breath, allowing me to feel secure as I embarked on a journey that was scary and unfamiliar. And I was there to hold and guide you when you took your last breath, hopefully allowing you to feel secure as you embark on a new journey that is scary and unfamiliar.

RIP Mary Bayne. I will love you forever.