Twenty-one days ago, my mother passed away. 

The moment was beautiful—peaceful and holy— and I am so thankful I was with her.

Mom’s death served as the final exam for a course I’ve been taking for at least a year now, Death 102: When the end is near (or here). Below, you’ll find my notes from the “class.” I hope they prove useful when you, too, go through this course.

I. For starters, if you haven’t done so already, make sure your parent’s doctors are top-notch. Some specifics to look for:

• A doctor who communicates well, in human-ese, not medical-ese.
• A doctor who dialogues with your parent and you, not just you.
• A doctor who will compassionately deliver hard news to your parent, not simply provide the horrible findings for you to relay to your parent. At least three times this summer, I was given devastating news to deliver to my mother. Each of those experiences was horrific, for both of us.
• A doctor who understands quality of life can be more important than quantity of life.

II. Once your aging parent displays worrisome symptoms, don’t shrink back from requesting tests in order to spare them discomfort.

For several months in a row, my mother lost weight, a pound or two at a time. Sometimes she gained back a couple, but mostly the scale number dropped. 

Even so, she didn’t push for tests. Me either. I didn’t want tubes and scopes shoved down my tiny mom’s throat or up her… Surely things would get better. Only they didn’t. The day I witnessed her choking on iced tea, everything changed. The next day, I called her doctor. “Do something,” I barked.

Per my request demand, Mom’s physician ordered tests. The results were not good.

III. When necessary, be strong and courageous.

During one of Mom’s surgical consults, as the surgeon rattled off the details of the bowel resection he planned to perform, my mother death-gripped the exam table and mouthed to me: “I can’t do that.” 

I raised my hand. “Question: What good is it to remove the mass in my 86-year old, 80-pound mother’s colon if she can’t currently eat or drink? Yes, the tumor’ll be gone, but without the ability to swallow, won’t she starve?” 

“I’m just trying to figure out which of her problems to fix first,” the surgeon grumbled.

My mother’s case provides a poignant example of something Atul Gawande wrote in his book, Being Mortal:

“We (medical professionals) are good at addressing specific, individual problems: colon cancer, high blood pressure, arthritic knees. Give us a disease, and we can do something about it. But give us an elderly woman with high blood pressure, arthritic knees, and various other ailments besides—an elderly woman at risk of losing the life she enjoys—and we hardly know what to do and often only make matters worse.” (p. 44)

IV. Muster praying people.

My friends were used to my prayer requests regarding Mom’s health, but once the alarming tests results began to accumulate, I asked even more people to pray. I texted prayer requests. I posted them on Facebook.

Because of all the prayers going up for Mom (and me), I felt a palpable peace and strength during that time, especially during Mom’s final few weeks.

V. Be prepared to D.I.Y..

In the hospital one morning, my mother needed to pee. Since she wore a FALL RISK bracelet, the aide suggested Mom use a bed pan instead of walking to the bathroom. “Buzz me when she’s done.”

I pressed the buzzer 30 seconds later. After ten minutes, Mom said, “Is she coming back?”

“Doesn’t look like it, Mom. Lift your hips.”

More than once I had to track down medical staff to help with Mom or her bedside machines. If you encounter the same situation, I recommend you follow the sound of the clacking computer keys. Nurses have to chart EVERYTHING.

VI. If possible, don’t leave your declining parent alone in their hospital room. 

On the above-mentioned morning, a darling nurse named Courtney held Mom’s hand. “Mrs. Ward, do you feel any discomfort now?” This after Mom endured a long night of soul-crushing back pain and nausea.

With a cheerleader-tipsy-on-Boone’s-Farm-wine grin my mother shook her head. “Not a bit,” she chirped.

Without her dentures, Mom resembled a dried apple doll. And at that point, due to a finally adequate dose of IV drip morphine, Mom was seriously (and thankfully) stoned.

Courtney hooted. “Aren’t you sweet as peaches? This is exactly what you and I need at the end of a night like last night.”

Mom felt so good, in fact, an hour later she swung her legs out of bed. “I need to get my hair done.” 

I plopped her legs back on the bed. “It’s not Friday, Mom, and you’re not in your senior living community. It’s Sunday.”

“Sunday?” She dropped her feet off the bed again. “Then I need to go to church!”

I stood beside her, my hands on her broomstick thighs. “Since you’re feeling so much better, I’m going to go feed your cat and get some coffee and breakfast. I’ll be back in an hour.”

Upon my return, I found Mom unresponsive.

What I deemed “better,” the hospital staff deemed, “agitated.” To keep Mom safe in bed, they upped her morphine dose. Mom never walked or talked again. 

I don’t blame me. I don’t blame them. I have to think, though, if someone had stayed with her, she and I would’ve had more time. Maybe hours. Perhaps days.

VII. When they wish upon a star…

In their final weeks or days, your parent may express a heartfelt desire. Do your best to grant that wish. 

After I told Mom the worst possible news–“The doctors say there’s nothing more they can do for you”–she murmured, “I just want to go home.” Which meant returning to her cute assisted-living apartment and her beloved one-woman-cat, Rosie. I promised to make it happen.

And I did, with the assistance of the fantastic staff at Amedysis Hospice. Within 24 hours, they helped me transport Mom back to her apartment. 

I hope that even though she was no longer alert, Mom knew she was home.

VIII. For the record, “actively dying” does not necessarily mean, now.

Once the hospice admissions nurse assessed my mother, she informed me Mom was “actively dying.” When my eyes welled with tears, she hurried to explain that “actively dying” could mean hours. Or days. My mother actually stuck around until Friday morning.

IX. Visiting Hours

My, how word gets around. I’m not sure how people learned of my mother’s decline, but Mom’s first full day back in her apartment, bunches of people came to call. Staff from the building. Friends she knew when she lived on the independent side. People she knew from church.

Honestly, the number of visitors surprised me. Apparently, my mother knew more folks than she let on. Their sweet and caring comments were a great comfort. 

X. Call me.

Since all three of my brothers live far away, as Mom’s health waned, I sent them updates. Now that the end seemed near, I encouraged them to call–and to have their children call–to “talk” to Mom.

As calls came in, I propped the phone on the pillow next to Mom’s ear. Every few minutes, I’d check to see if the caller was still talking. My oldest brother prayed for Mom and sang her hymns. A nephew read her scripture. A niece recounted her favorite memory with Mom. I played an audio of her great-grandsons wishing her well.

XI. Palliative vs. curative care

Curative care is care that tends to overcome disease and promote recovery. Palliative care, on the other hand, is the provision of comfort measures that afford relief, but not cure.

Comfort measures may include: pain management, oxygen, temperature regulation, swabbing the mouth with a damp sponge, dealing with skin irritation (see next item).

XII. To everything, turn, turn, turn.

Until my mother suffered a bedsore, I believed them to be similar to a mosquito bite. Not so.

“Look here,” Stacey, our hospice nurse said, pointing  to my mother’s bare back. “That’s a bedsore.” her finger lightly traced the plum-colored, pie-sized circle on Mom’s tail bone. “She must be turned every two hours.” When I whimpered, Stacey grew stern. “Turn her. If you don’t… Just do it. Because trust me, you don’t want to smell that smell.”

I thought back to the chart on the hospital room wall that indicated every two hours a patient should be shifted. During the hours I spent at the hospital, I never saw anyone except Nurse Courtney move my mom. 

XIII. Consider the lobster cat

On Mom’s second day back in her apartment, Stacey educated me on the importance of pet mourning. “Rosie will probably know within moments that your mother has passed. At that point it’s important to let her spend time with your mom’s body. She needs to grieve.”

Beside the bed, Rosie played Whack-a-Mole. With her ears pinned back, she’d pop up, peer at Mom, hiss, and duck back down. Over and over she repeated the process. She recognized Mom. And yet, she didn’t.

“Speaking of Rosie,” Stacey continued, “What is the plan for her after…”

I told her our son was Plan A, since Rosie tolerated him better than the rest of us. She’d let him scratch her chin 2.4 seconds. The rest of us she only granted 1.1 seconds, if that.

“Besides being a nurse,” Stacey said, “I rescue animals. Cats, dogs, birds, opposums. I’ll be your Plan B. I don’t mind that Rosie’s contrary. If I can’t re-home her, I’ll adopt her myself.”

XIV. Just say yes…to spiritual support.

Jerry, Mom’s Amedysis chaplain, visited us every day. Each time he came, he read Mom scripture, prayed with her, and sang at least a dozen hymns. In a lovely tenor voice. Most of the songs he sang, I knew. I’d hum harmony and call out to Mom across the room. “Remember that one? At Beverly Hills Presbyterian Church?”

On Thursday, the day before Mom passed, I confessed to Jerry, “I think I need your visits more than she does.”

That day I asked him to read scriptures about heaven. “Maybe from Revelation. Tell her how beautiful it’ll be up there,  that there’ll be no more sickness, no more tears. Because I’m not sure she wants to leave here.” He read Revelation 21.

XV. Hear, ye! Hear, ye!

Over the course of the week, several of Mom’s caregivers mentioned that hearing was the last sense to go. “Pray, sing her songs, and read to her,” Garrett, Mom’s favorite male nurse, suggested. So I did.

I played You Tube videos of Johnny Cash and John Denver, Julie Andrews singing show tunes, and Neil Diamond crooning “Song Sung Blue.” I read her Psalm 23, as I’d done for my father and Tony’s, over a decade ago, as they lay dying.

Every time the assisted-living folks came in to turn Mom, or swab her mouth, they’d call her by name and explain exactly what they were up to. 

XVI. “‘Cause it’s a bittersweet symphony, this life…”

Even if your relationship with your parent was bitter, attempt to find some sweetness, some good, to take hold of. 

In the hospital, I did this. I stood at the head of Mom’s bed, and in a whisper, confessed to her that for so long, I’d kept a record of every single time she failed me. “But now, Mom, I’m flinging them all away, like bits of gravel in gray mop water.”

XVII. Go in peace.

More than once that last week, I gave Mom permission to let go. Tony did, also, each evening when he brought me supper. He promised Mom we’d take good care of Rosie and deal fairly with her estate.

I’m guessing my brothers did the same when they bid her farewell. Some people need this. Others “fly away” whenever they’re ready.

XVIII. Surprised by joy

As I said at the start, Mom’s passing was beautiful and peaceful, barely even noticeable. Honestly, I’d fretted that witnessing a death would be scary, but it wasn’t at all. 

Suddenly I found myself in an almost blissful state. “Please don’t think me weird or rude,” I told Stacey, “but I’ve never been with someone when they passed from here to there. This was beautiful and interesting and so cool to be a part of.”

This article confirms what I experienced that day. It also backs up my theory that death can feel like a birth. I mentioned that very thought here. 

With Mom’s death, I also felt relief. Not a sense of “good riddance,” though, more of a feeling that the hardest part was over. For her. And me.

~~~~~~~

There you go, everything I learned during Death 102: When the end is near, (or here). If you have anything to add, please do so in the comments!

P.S. Once again, props to Patrick Conrad for providing my featured image.