My mom passed away. It's been nearly two whole weeks now. I'm still shuffling through the various stages of grief, and I'm using this post as a step along the way.
The end was both a long time coming and came too quickly. Rheumatoid arthritis had started attacking her lungs probably at least 15 years ago. She always thought it was drainage from allergies that made her cough so much. She'd never go to the doctor about it, and to the end was adamant that she hadn't been coughing that long and that the coughing wasn't a long term symptom. But she was losing lung capacity all the time. Scars were forming from all the coughing making parts of her lungs useless. She was not getting enough oxygen, to the point where her fingernails and toenails started curving…I'm not sure on the specifics for how that happens, but apparently it's a hallmark of chronic lack of enough oxygen, and hers were definitely not normal.
About two years ago, it started getting worse and she couldn't quell the coughing fits with allergy medications anymore. The nurse at the school she worked in happened to be a pulmonary nurse before she started working for the school, and she recognized when it was time to insist that she go to the emergency room for the first hospital visit. They said it was pneumonia, pumped her full of antibiotics, let the fluid drain off, and she was out in a few days. She was better, but not fully well. She went back to the doctor a few more times, went to an ENT who decided she needed some sort of sinus surgery to stop the constant drainage. So they did that, and it didn't really do much for her. Another bout of pneumonia a few months later put her back in the hospital, and this time she came out with an oxygen tank. It was about this time that they decided it was more than just allergies and pneumonia. No otherwise healthy 53 year old should have these problems. They put her on immunosuppressants to hopefully prevent or slow down additional damage. But she just kept getting sick, and with each round of acute episodes a little more of the lung capacity she didn't have to give was taken away. Eventually walking to and from the car was too much effort, so they gave her a wheelchair. Then some days it was too much effort for even that.
She had always insisted that she stopped getting older at 29…she was comically defiant in her insistence at being 29 forever. She'd never leave the house or even let anyone who wasn't the immediate family see her before she put her makeup on. She colored her hair because gray most certainly was *not* her natural color. But once she got to the point of being in the wheelchair, she said she was 100. She let the gray take over. She stopped bothering with putting on her makeup before leaving the house.
Early this year the doctors told her she had only 1/3 of her lung capacity left, and she'd need a double lung transplant. She went through a bunch of tests so they could make sure she was otherwise healthy and a good candidate for transplant. The doctors told her she would be on the list, but not necessarily that high since she was healthy except for her lungs. Fast forward to May. She goes in to the hospital with another infection. They give her antibiotics and after a couple of days she's doing better so they think they'll let her out in a few more days. Then she started having a harder time breathing again, and her temp was spiking. The culture came back showing both bacterial and fungal infections. They put her on antifungals, switched her to a high flow oxygen mask with 100% oxygen and moved her to the ICU. The doctors started to talk about the possibility of having to put her on a ventilator.
At that point, the scattered family members started coming in. Mom was one of ten children, and there are a few who just plain don't like each other. Mom's baby sister came in from Alabama for the weekend. Mom got moved to the top of the transplant list. She had a good weekend, was able to feed herself, was getting some color back. We all were in the awkward spot that all transplant families find themselves…hoping for a new set of lungs to become available, feeling guilty that someone would have to die to provide them.
By Tuesday she was too weak to feed herself again. Wednesday they convinced her to let them insert a feeding tube so that she can get some nutrition. Then Friday she was just too tired, it was taking too much out of her to breathe, so she agreed to go on the ventilator, knowing that the only way she'd come off of it is to do the transplant or die.
Right after they got her sedated and put her on the ventilator, we went back to see her. I was glad that she wasn't struggling like she was before. Then a gray bird started hitting the window…I'm not even sure what it was doing or trying to do, it just kept fluttering up against the window. My aunt even tried to tap against the window to make it go away and it didn't for several minutes. And that's when my heart sank. I didn't want it to be a portent, but the superstitious part of me couldn't help but file it away. She'd always been absolutely terrified of birds. We had to lead her by the hand through parking lots so she could close her eyes to get inside wherever we were going.
Monday they had to put in a chest tube because one of her lungs collapsed. The infections weren't backing down any despite the super powerful antibiotics she was on. They had to start giving her medication to keep her blood pressure propped up to 100/50 (and that was a good reading for her). The transplant committee met on Tuesday, they were going to evaluate her status on the list. Wednesday the main doctor asks me to round up my sister and Mom's friend who had her medical POA (the nurse from her school) so he can talk to us all at once, and I knew it would all be over soon. We meet Wednesday afternoon, he tells us she's off the list because she likely wouldn't make it through the surgery. Mom had clearly stated before she went on the ventilator that she didn't want to stay on it if she didn't have a shot at a transplant, so there was really no choice to be made on our part. She wanted us to let her go if there wasn't any hope.
At around 8 they started taking her off the medications, all of the antibiotics and the blood pressure medications. They left the sedatives going. It didn't take long, they didn't even need to turn off the ventilator. Once her blood pressure wasn't being held up her breaths got farther and farther apart and eventually there were no more.
I wasn't sure I had more tears left at that point, I mean, I'd been crying all day since the doctor had told me he wanted to have a meeting with all of us. But I did, and I kept crying. My hands were shaking while I tried to type out the text message to let some people know. For those that needed phone calls I let the others handle them cause I couldn't keep it together to talk.
The next few days were a whirlwind of arrangements and family coming in and food and stories and beer. And now everybody's gone back to their regular lives, and I'm left trying to sort through my feelings. Not to imply that I think I'm the only one left sorting through my feelings, but we're all sorting through our feelings separately.
I'm in mourning. Mourning the loss of the woman who raised me. The vibrant, happy, loving grandmother that my nephew only got to have for a few years and my future children will only get to meet through stories. The damned stubborn woman who I swore was only looking to drive me absolutely batshit crazy on more occasions than I can count. The woman that insisted that everything was her way or no way at all, who I'm sure deep down wanted only the best for me, provided that the best was what she chose for me. The woman that probably would never have existed no matter how long she lived, that understood and appreciated and accepted our differences. The woman who clung to and nursed her bitterness against my father without even seeing let alone acknowledging her contribution to the demise of their relationship.
I can't separate my good memories of my mother from the bad, that just wouldn't be true to the relationship or true to myself, really. And that was always what I wanted to be, in spite of her vehement protests and assertions of control at various points in my life. She didn't understand anything outside of her comfort zone, and didn't want to. Most of my interests and pursuits fell outside her comfort zone. As a result, I wasn't as close to her as I could have been. I just stopped telling her about parts of my life that I knew she would comment negatively on…although I didn't stop wishing that somehow that would change.
Here's to what was, and what should have been. I love you, Mom.
