I’m a writer. I write for many reasons. I write for me, to organize my thoughts. I write to clear my head. I write to document things for other people. I write to share what I’ve learned so someone else can avoid my mistakes or benefit from my knowledge. I think this piece is a little of all of that.
Just as there are birth stories, there are also death stories. Some people are terrified of death. I’m not. I do not have a death wish, I hope I have many great years ahead of me, but at the same time, no one gets out of this life alive. What will be, will be. I will say that prior to my mother’s death, I had no idea what happened once the heart stopped beating, what the process was to get from hospital to funeral home. Now, I know and I’m brewing another post on that topic too.
The Call, Think Fast
My mother entered the hospital for treatment of an infection on her foot. It had gotten so bad, she needed IV antibiotics. She was only scheduled to be there for a day or two and would then be transferred to a rehab center to complete the healing process. However, while she was there, another problem was discovered and a minor surgical procedure was scheduled to address that issue. This was only supposed to extend her stay in the hospital by a few days.
She went in on a Monday. I spoke to her that night and again Tuesday night. Wednesdays are consistently the worst day of my week. I start at 6am and go go go until about 8pm. I had tried to reach my mom throughout the day, but was unsuccessful. When we got home from karate, I was starving, so the plan was to have a yogurt and then try again. If I didn’t reach her, I would then call the nurses station for an update.
Halfway through my yogurt, the phone rang with the hospital’s name on the caller ID. That’s rarely a good sign. What followed was a brief back and forth with the doctor. He said they were having a hard time getting a blood pressure reading on her. I was annoyed. Look at her chart doofus. She is notorious for having crazy low blood pressure. He calmly continued to try to convince that this wasn’t normal and I continued to tell him it was. Finally he changed tactics. “Ma’am. She has no pulse.” Oh, ok, this is DEFINITELY not normal. “The team needs to know your wishes regarding end of life care.”
ALL STOP. OH SHIT!
I stuttered as my brain tried to wrap itself around what he was saying. My mother was dying, if not already dead. My mother and I talked about this. We had had this conversation. I knew what she wanted, but my brain just refused to forward the information to my mouth. I ran upstairs and grabbed the file folder with her name on it. I opened it and as soon as I saw words on paper, the words came.
She did not want to be a vegetable. She did not want to be kept alive for the sake of being kept alive. I shared that with the doctor and he asked me to stay near a phone. I was scrambling to make plans to get on the road. The hospital was an hour an a half drive from my home. I gave him my cell phone number and told him to keep me apprised.
My husband was Northbound on a bus from Boston. I scrambled to find someone to stay with my kids. I have left them alone before, but I couldn’t do it this time. Here’s where I stop and count my blessings that we live where we do. My in-laws are next door and we have fabulous neighbors across the street.
The doctor called back. They’d been doing chest compressions for 15 minutes with no response. The team was concerned about the lack of oxygen to the brain. I sat down and took a second to gather my thoughts.
“Let her go.”
Her health had not been good. I was starting to question her ability to live independently. Living with me was not an option and the idea of moving to an independent living facility or a nursing home was in her words, “a fate worse than death.”
I called my husband and told him. I called my aunt, her only living sibling, and told her my mother had died. Half way through that call, the doctor called back to say they had a pulse. Of course they did. This was my mother. She could be as stubborn as a brick wall.
I passed on the updated information and once again scrambled to make plans to get to Boston only this time, I wasn’t driving. My in-laws would stay with the kids, my neighbor would drive. My husband was too far away. Only he wasn’t. He’d misjudged where he was (the highway all looks the same at night). My neighbor drove me to him and he and I headed South.
While en route, my mother’s heart stopped again. Again, I gave the approval to let her go. Again, she revived. At this point I was invested in getting there to say goodbye in person, but I told the team that if she crashed again not to resuscitate her. In the meantime, I further rallied the troops, I called my dear friend Melissa who is also a nurse and my cousin. They lived closer than I. Whether she would consciously recognize it or not, I didn’t want her to be alone. My cousin made it about half an hour before I did. Melissa made it 5 minutes after me and my friend Charlene stood at the ready.
As we approached the hospital. My husband had the foresight to warn me that the scene I would enter would be unexpected. He told me there would be tubes and wires and blood and that her body would be swollen with fluid. Upon arrival at her bedside, I was glad he’d warned me. It was an unnerving sight to say the least.
I said my goodbye and I stepped out. How she looked, the beeps and the alarms. It was too much. I gave the approval to stop the medication that was inflating her blood pressure to keep her alive and headed to the family lounge. With the support of my husband and Melissa I gathered my wits. In the meantime different members of the medical team that had been working with her stopped in to offer their sympathies. One had talked to her several times throughout the day and said she was in good spirits. I knew she was optimistic about the outcome of the procedure it helped to know she was in a good mood.
Eventually I was drawn back to her bedside. They had drained off some of the fluid and put blankets over the blood stains. She looked more like herself. I held her hand, her nails, although unpainted, were perfectly shaped. That was my mother.
The four of us stood around and talked. We talked about current family news (my cousin’s daughter is getting married this summer). We talked about my mom, past and present. I knew. I just knew that she was already gone. Melissa helped me ask the team to make her passing as easy as possible from this point on.
They removed the breathing tube (I stepped out for that procedure) and turned off the alarms. We held her hands, told stories and cracked jokes. As I told the nurse who frequently came to check on us. I’m Irish, we laugh to avoid crying. Eventually, she took her last breath and she was really gone.
Here I need to stop and give props to Massachusetts General Hospital. MGH is a large teaching hospital with an excellent reputation and a long and storied history. That type of environment sometimes takes a bad wrap for being out of touch or impersonal. The team that worked with my mother and I, was awesome. They kept me in the loop. They were sincere. It was clear this was an unexpected outcome and they were all rattled by it. I got the sense that they deal with death everyday so they knew the steps that had to be taken, but at the same time, they understood that this death was personal to me and guided me gently through the process. I will be forever grateful for their patience and kindness.
After she died, the doctor came in and verified that she was indeed dead. Then came a series of questions.
Did I want an autopsy?
I hedged. It wasn’t that I didn’t want her cut open. It’s just that while sudden, her death was not completely unexpected. She’d been in failing health for a while. Did the team want an autopsy? We danced around this for minute or two until A-Man and Melissa pointed out that the team couldn’t legally have a say in the matter. I had to give a yes or no answer. Yes.
Did I want her to be an organ donor?
She was a 3 time cancer survivor including radiation treatments and at least 2 rounds of chemotherapy, sadly, that made her ineligible to donate.
Did I want a full autopsy or did I want to limit the scope to the procedure most recently performed?
Would the information gleaned from a full autopsy be used for teaching purposes?
Then I want a full autopsy.
The would remove her organs for examination during the autopsy. Did I want them return to the body? If not, the organs would be used for teaching purposes.
No, use them for teaching purposes.
Did I want a copy of the autopsy report?
Yes. (So I can forward it to Melissa for translation).
A few signatures, they gave me her belongings and we were free to go. For
I texted Charlene. She’s gone. Only, in my one handed haste I texted, She’s gine, which autocorrect changed to She’s fine. Now in the wee hours of the morning after such a roller coaster of adrenaline, this made me laugh out loud. She was definitely NOT fine. As I write this, I think maybe she was fine. Maybe at last, she wasn’t in pain and she’d found peace. I’ve decided to go with that.
We spent the night at Charlene’s house. She and her family live outside of Boston. Both A-Man & I were pushing exhaustion, the drive home seemed too much. Plus, I wanted to go to my mother’s apartment the next morning and pick up a few items.
It was weird drinking tea with my friend thinking, My mother is dead. I knew this would happen sooner rather than later, but it still took some processing to really comprehend. Even now, more than a month later, I occasionally come up short and think, she’s dead.
In some ways, I’ve been grieving the loss of the mother I grew up with for more than 20 years. Recently, our relationship roles had reversed and frequently it was one of obligation on my part. Although charming to many she came in contact with, to those few in her inner circle, she could be a difficult person to deal with. She made poor choices and then lamented how the world was out to get her.
I’m sure my feelings will change over time, but right now, it just feels like a finger after a deeply embedded splinter has been removed, extremely sore, but slightly less painful. I hear ads for services like A Place for Mom. And I think wow, I won’t have to deal with that now. I really didn’t know what the next step was for her. She was not going to willingly stop living on her own. It was going to take a catastrophic event or legal action. I wasn’t looking forward to either.
Still, I’m not sure the full impact has hit me. She was notorious for disappearing for weeks on end. She rarely left her apartment, but she wouldn’t answer her phone and she didn’t return messages. Doctors and caregivers would call me with appointment confirmations or test results because they’d lever numerous messages and hadn’t heard from her.
Once, I had to go so far as to have the manager of the building do a well-check. She was furious with me for the invasion of her privacy, but, she got the message and took me seriously in the future when I left messages that said “You have 24 hours to call me back”. It had gotten to the point where I would regularly put out the call to her case manager and family to see if ANYONE had heard from her.
In some ways these days feel like those times when she was just incommunicado, but at the same time, they don’t. Part of me knows this is permanent. We’ve emptied her apartment and are starting to file paperwork. The other day, the kids asked me what time of day I was born. I think it was dinner time, but I’m not sure and I can’t call my mom and ask her.
For the most part life has gotten back to normal. I am beyond profoundly grateful for all those who have reached out and keep checking on me. The cards, the meals, the texts, and virtual hugs meant everything as I struggled to keep it together. I am truly blessed with an amazing village of friends.
This brain dump was primarily for me, but if you’ve gotten this far, thanks for reading. Go hug someone you love.