Wednesday, 13 August 2014

Losing my mom

My mom. Where do I start?

My mom was dieting my entire life. I think she was dieting most of her own life. She was a bit overweight from quite a young age and it seemed to get worse after she had my sister and me. She would go on a diet and lose weight, then gain it back and go on another diet, then gain back more, go another diet and gain back even more.

Finally, a few years ago, she was approved for Kaiser's gastric bypass program. Kaiser makes you work your way through a program to help improve the success rate. So you have regular meetings to discuss the surgery and you have classes you must attend about nutrition and life after the surgery. You are also required to lose a certain amount of weight (I think this is pretty standard) and be doing regular exercise.

Shortly after starting the program my mom developed a hernia. It got bad but the doctors said it would best to leave it until after the bypass and after some weight came off so that it wouldn't re-herniate. She was doing good with the program but as her last meeting approached she landed up in the hospital because her hernia had become really bad. She missed her last meeting because she was in the hospital so they suspended her surgery. She was gutted. She'd worked so hard for it and she was so close. She continued with the program but eventually her hernia got so bad that she couldn't manage the exercise anymore. She was in so much pain, and still working full time as a cook. She was in and out of the hospital on bowel rest due to the hernia.

To make a long story short, it came to the point that she felt stuck and she began to give up. The doctors wouldn't operate on the hernia until she had the gastric bypass and a significant amount of weight came off and the hernia surgery wasn't going to happen until she could manage the exercise Kaiser wanted her to do but the hernia was making it impossible.

At the end of May 2013 she ended up in the hospital due to her hernia again. I phoned her in the hospital as I always did and couldn't believe it when she told me the doctor had said she probably wasn't going to make it back out but that if she did, she'd end up there again and wouldn't make it out that time. I was in shock. They told her she was going to die because of a hernia?! Why weren't they operating? I couldn't get my head around it. I told her I was flying home as soon as I could. Meanwhile, my sister and I talked about trying to get her down to a hospital in Portland for a second opinion on the situation. My mom agreed but the doctor had a go at her saying "if" she could find someone willing to look at her they would just tell her the same thing. We contacted OHSU in Portland and they agreed to look at her case and asked for her files to be faxed to them. When my mom requested that the doctor do it he became angry with her and she told him to just forget it. When he left she told my sister she'd ask the next day when that doctor wasn't there.

But the next day I phoned the hospital to speak to my mom and instead was transferred to the nurses station. They told me my mom had gone into respiratory distress and was on a ventilator...things weren't looking good. They did an exploratory surgery (because NOW they decided to do something?) and discovered her small and large intestines were both beginning to die. They removed a portion of both. They also found that because she'd had the hernia for so long that the muscles in her abdominal wall had retracted and there had been nothing protecting her internal organs for quite some time. My mom was on life support and I didn't  know what to do with myself.  I was distraught and had to wait another day for my flight.

We arrived in America on Sunday, June 2nd. My mom was in surgery again when we arrived at the hospital. The surgeon came out with very grim news. Gangrene was rapidly spreading inside her. They had to removed the remainder of her large and small intestine as well as her uterus and ovaries. The surgeon said it had all died and gangrened and that he'd never seen anything like it. They had to cut away a large portion of skin from her abdomen to stop the infection. At this point they had no way of closing her up.

The surgeon said he'd do what he could to try to save my mom for as long as we wanted him to. I still don't understand how it went from her doctor on the ward telling her they weren't going to do anything for her and she was going to die, to being in ICU with a surgeon saying he'd do what he could to save her.

The situation was this: she no longer had any intestines or colon. She would never be able to eat again. She would need to be fed via IV. Her anus would be sewn shut. The end of her stomach would need to be rerouted to exit through a hole in her upper abdomen and into a bag that would need emptied into the toilet when it became too full. There would be a permanent central line entering her neck or upper chest to receive lipids. The liquids would all drain by pump so she'd have a bag and pump attached to her 24/7. Eventually that neck port would be moved due to scar tissue and then moved again and again. She would be highly prone to infection and there was a high chance it would kill her within three years.

Her life was going to be substantially shortened and it was going to be very low quality. This was all IF she survived the numerous surgeries it was going to require. She would also need to spend several months in a nursing home IF she survived all these surgeries. It was clear to me that the surgeon did not believe she would survive this.

My mom had always been vocal on this kind of thing and there was really no discussion. We all (my sisters, stepdad, and me) agreed straight away that she would not have voted for this option so we made the decision to let her go. It was one of the easiest decisions I've ever made and one of the hardest. I certainly did not make that decision for myself because all I wanted was my mom ALIVE. I wanted to hear her voice again, see her blue eyes again, hug her again... I would have taken any chance to have to have her back. But she wouldn't have wanted it.

I had never watched someone die before. I've heard loads of people talk about watching someone pass away. I even heard my own mom talk about my paternal grandfather pass away. I've heard people talking about how peaceful it is and how the person just takes one last breath and then they're gone. That is what I was expecting. That is not what happened.

No one prepared us for what we were about to see. When the nurses and doctors spoke with us they said they'd remove her from the ventilator and then allow us in. They said for some people it can take hours but that they suspected with her it would probably happen quite quickly. My sisters and I agreed to let my stepdad go in alone first as he said he didn't want to see her die. He just wanted to be with her for a few minutes first.

My stepdad waited outside her room while she was removed from life support and we all waited in the conference room. Suddenly a nurse came running in and said, "You'd better hurry!" We passed my stepdad on his way out, sobbing. We ran in and found my mom in her hospital bed, eyes wide open to the ceiling, gasping for air and making horrible noises. Her tongue was slightly protruding from her mouth and I thought I could see terror in her eyes. I was in such shock. I was not expecting her eyes to be open. I thought she'd look like she was passing away in her sleep. But this was not that. This was not peaceful. This was ugly. This was frightening.

After only a few minutes my older sister couldn't cope and her husband took her from the room. I heard her collapse onto the floor outside the door in sobs. My little sister and I stayed there with my mom and at some point, my dad's sister came into the room. From start to finish, it took about 15 minutes for my mom to take her last breath. She exhaled and then was silent. I placed my hand on her forehead and told her I loved her and she suddenly gasped one last time. My aunt said, "I think she's gone now," but I knew even though she was no longer breathing, she wasn't gone yet. So I asked her to let my sister and I be alone with her. We stayed with her, holding her hands, rubbing her arms and stroking her hair, telling her that it was okay to let go. We both kept staring at the heart monitor and at one point her heartbeat picked back up again. Those were the longest minutes of my life. Finally when it flat-lined I confirmed with the nurse that she was gone and the nurse left the room.

I took a tissue to clean the jelly gunk from around her eyes that they had put on when she was in a coma and I closed her eyes. Heather and I sat in chairs beside her bed in silence for awhile but her body was changing rapidly. Veins were showing up in her face and I told my sister that we should go.

I cried alone in the bathroom of motel room every night for the remainder of our trip while my husband and little boy slept. I couldn't sleep. Every time I closed my eyes I could see my mom in that bed, gasping for air with that look of terror in her eyes. I couldn't look myself in the eyes in the mirror because, while I always felt lucky to have her eyes, they were suddenly haunting me and taking me back to that moment.

It's been a little over a year now. I am coping now but obviously miss her very much. I think about her several times a day. She's in my dreams every night. But I know she's still around. I can feel her sometimes.

She was one of the few people who knew about this blog and read it. It feels very lonely here now.


  1. Michelle, I think it's great you're able to write all of this. I'm not sure I could write about my mother's illness and death. And I'm in awe of how brave you were - when my mother died (I mean those last hours when she was actually DYING), I had to leave the room. I wanted to stay with her, but I couldn't. I just couldn't do it. It wasn't peaceful or calm or any of those things they tell you.

    However, I was also with my husband when his father died. And that actually was peaceful. But he was on huge amounts of morphine so it was really like just sleeping and breathing more and more slowly until he eventually stopped.

    It wasn't like that with my mother.

    I wish I could give you a big hug. xxx

    1. I appreciate the comment, Helen. I was surprised by it as I didn't realize anyone was reading this. Ha! By the way, my mom's name was Helen. <3