Monday Mourning on a Wednesday

Way back in 2008 when I was researching death professions, I started a blog called “The Death Writer.” On that blog, I used to ask people the same questions that I’m answering in this post. My aim was to allow people to talk about their loved one and the grief they experienced, which might normalize this conversation in some small way.

I am coming up on the one year anniversary of my mom’s death and I still feel the weight of grief. The fact that my mom died of the Covid virus, which is still raging due to the Delta variant, complicates matters. I am not going to lie or sugar coat the fact that I feel a lot of anger towards the people who deny how deadly it is. I guess they have to experience it on a personal level before it gets real. With that said…

Who was the person?

My mom, Ora McCully.

How old were you at the time?

50

How old was the person?

88

Was it a sudden death or did you know it was going to happen?

My mom was exposed to Covid 19 when my stepdad was brought home from physical rehab. He had been there for a month and wasn’t getting better. They assured my mom he tested negative, but after a bit of digging, I found that they tested him on the day he was released and the lab report said, “sample spilled in transit, please resubmit.” He died eight days after coming home. Five days after his death, she tested positive for Covid and was admitted to the hospital. I wrote about this experience for CNN. Because she was so healthy, I totally thought she was going to be okay. It wasn’t until she had to be intubated on her birthday that the possibility of death really sunk in. My mom didn’t want to be intubated and the doctor couldn’t do it without her consent. He asked that I come to the hospital to convince her. And I did.

I wrote about my regret about making that decision for an anthology called “The Phone: An Unruly Collection of Second Chances.” This book was inspired by an art installation called “phone of the wind,” which you can read about here. I believe it will be released in December of this year. I will keep you posted.

Did you and the person ever talk about death?

Yes. I had written a book called “Death Becomes Us,” which she had read. She attended one of my Death Over Dinners and I encouraged her to get her affairs in order. At the time of her death, she did have an Advance Directive and a handwritten will, which is legal in Texas, but her spouse died before her, and he didn’t have a will. They were both each other’s beneficiaries, which was incredibly complex to navigate. Please, do your loved ones a favor and draft a will, an advance directive, appoint someone as your medical and/or financial power of attorney. Trust me on this one. It is never too early to think about and plan for the end. It is truly a gift you can give your loved ones.

Had you experienced any other deaths in your life before this person died?

Yes. My grandmother, Lola, when I was fourteen. My mother-in-law, Lovina Skjolsvik and my dad, Bob Johson. My neighbor, Burch Stevens, also died in 2020 and I found his body.

Were people supportive of you in your grief or did they shy away from you when you were grieving?

Because I wrote about my mom on Facebook to update friends and family on her condition, many people reached out to me after she died. People sent cards, sent flowers and dropped off food. But, as is typical and I am just as guilty of it as the next person, after the initial flood of sympathy and concern, people stop talking about her. Why do people, including myself, do this? Because they don’t want to make you feel sad. SPOILER ALERT I am already sad, so you bringing up my mom isn’t going to make me even sadder. If anything, it reminds me that she lives on in the thoughts and memories of others. I may start to cry, but I’ve learned through grief counseling that that is okay. The more we love, the more we are going to grieve. I am going on a year and my grief is still there. While it’s not as raw as the day she died, not a day goes by that I don’t think about my mom or want to call her and tell her what’s going on in my life or ask her a question.

Was the person buried or cremated?

My mom was cremated. Next week, my mom and stepdad will finally be placed in a cemetery. Due to the surge of Covid cases in Texas, the in person memorial service has been postponed.

Did you learn anything about the grieving process you’d like to share?

Because we can’t gather due to Covid and my siblings don’t want to risk their health by traveling to Texas right now, I have learned how important gathering with friends and family is in the grief process. People need people. We also need ceremonies and rituals. We did have a Zoom memorial that I livestreamed on Facebook, which was nice, but I would have preferred to have had one in person. I may not be the huggiest person in the world, but I needed lots of hugs. Still do.

Were there any songs played at the memorial that were important to the person?

Yes. My sister-in-law, Nancy, made a lovely slideshow of my mom. The video plays to the song, “You and Me Against the World” which was a song that she used to play a lot when I was a kid. She said it was our song. It makes me bawl like a baby everytime I hear it. Another song that brings me to tears is “Remember Me” from the animated film Coco. My mom loved music, so there are a ton of songs out there that remind me of her. When I was a teenager, I used to be embarrassed when she would sing in the car with my friends. Now, I would give anything to hear her belt out a show tune.

Death with Dignity: The Right to Continue to Be the Person You’ve Always Been

By Nora Miller, a volunteer for Death with Dignity. This story first appeared at

www.DeathwithDignity.org

. 

My husband Rick and I talked about Death with Dignity in general terms in 1996 when my mother died in pain and struggling for breath, and then again during the debates and publicity around the 1997 ballot initiative on Oregon’s law. We both agreed we’d prefer to control the conditions of our own deaths.

In early 1999 Rick developed a cough that wouldn’t go away. The diagnosis of metastatic terminal lung cancer in April left no room for doubt or hope for something less final. His first words were, “Now we are going to Alaska.” (Alas, we never made it.) His next words were, “I will be using the Oregon law.” We were fortunate our son and both our families supported his decision, with some regret and a few reservations, but without argument or complaint.

By mid-October, the doctor suggested it was time for hospice. We were able to keep Rick at home. Later that month, Rick made his first oral request under the Oregon Death with Dignity Act, followed by a written request, and the final verbal request in early November. Rick’s oncologist had never received a request before—with the law only two years old, everyone was new at it—but he was reasonable and sympathetic. He agreed Rick was of sound mind, not depressed, and definitely terminal. He wrote the prescription on a cold, rainy Friday in early November, and I drove across Portland to the only pharmacy willing to fill it at the time. Rick told me he thought he’d be a lot sicker when he’d be making the decision to use the prescription. He was, in fact, a lot sicker than he thought. He was having trouble with his voice and with swallowing. He often lost words or used them seemingly at random. He woke up with blinding headaches from a growing brain tumor. He couldn’t walk on his own. He’d become emaciated.

The day he made his decision had been a hard one: he was very tired and weak, and medications had deprived him of his emotional control. He was ready to go. I challenged his intention. I told him he could sleep on it, decide the next day. He was sure. He was calmer than he’d been in weeks, almost jovial, relieved. He needed the control and the ability to choose, and he needed to know that, in the end, we’d have joy and love in the midst of our sorrow. This was a last loving gift we gave each other. I wanted nothing more than to make that possible for him. I’ve never once regretted it.

I’ve often replayed those last weeks, recalling moments where I could’ve or should’ve done something differently. It’s taken me years to understand what I did was what Rick wanted, and to have done anything different would’ve made the process about me and not about him. It was his life and it was his death—he needed the right to decide how it would happen. To provide real dignity in dying, we must unconditionally respect the unique and inherent personhood of the person at the center of the process. Nobody’s Death with Dignity story will be the same as mine.

The dignity people seek in the dying process is unique to them. For some, it’s a time to reconnect with old friends and heal old wounds. Others need a few close friends who can help them address their fears and assess their options. For others still, it means focusing on the narrowing possibility of recovery, of beating the odds. But for every single person who is dying, Death with Dignity means having the right to continue to be the person they’ve always been. I’ll be forever grateful to my fellow Oregonians for making this possible for Rick. I just hope the remaining 47 states join Oregon, Washington, and Vermont and enact similar laws soon. (June 2013 / August 2015)

Brittany Maynard

I don't watch a lot of television, but earlier this year I watched the entire Breaking Bad series in about three weeks. What made the show so initially compelling for me was Walter White's decision to not undergo chemotherapy. He wanted to die on his own terms. (And he does, but I don't want to give away any spoilers.)



Understandably, his pregnant wife was upset with that choice. Had Walt not succumbed to her wishes, Breaking Bad would have been an entirely different show. Breaking Sad?

This past weekend Brittany Maynard chose to end her life. She had a terminal diagnosis, she lived in Oregon (a state with Death with Dignity laws in place), and she didn't want to suffer. To me, that sounds perfectly reasonable. For others, it sounds downright crazy. Who is right? Who knows? I'm just grateful that this issue is finally getting national attention. We are all going to die and many of us are going to be faced with these same questions. To treat or not to treat? Quality vs. Quantity?

I know I can't change your mind with a Facebook post or an itty, bitty blog, but if you would like to know more about Death with Dignity, you can click on Brittany Maynard's name up there, or click here. I also recommend watching the wonderful documentary How to Die in Oregon. It's an excellent conversation starter.