It’s been over a month now that I have thought my mother might die within the next 24-48 hours.
I am lucky. I am 59, not 29. My mother is 91, not 60 nor 41 with life left to live. My mother is fairly peaceful, pain-free and not highly medicated. My mother is living with me, and either I or my sister are with her every hour of the day. I am sitting here in a cushioned chair just feet from the bottom of the hospital bed where she sleeps. To my left, there are double glass doors out to a tiny deck from which a bird feeder and suet feeder hang. A goldfinch perches just eight feet from me for an afternoon treat. His goldfinch family joins him on the branches close by. Next to my mother sleeping, a clear bird feeder is suction cupped to the window. A Carolina chickadee, a tufted titmouse, a cardinal, and a cowbird feed there throughout the day. One of our favorite photos of my mom is from around 1990. She is sitting on a picnic table bench in the Baldwin backyard. A bluebird has landed on her hand. She is delighted.
Just now, my mom moaned a bit in pain. There’s a sore spot on her tail bone. She has lost so much weight that she no longer has much cushioning on her behind. As I leaned over to adjust the pillows and then pushed the button to lower the back of the bed, the tufted titmouse landed to grab a bark butter bit I just put out; my mom nods that she sees it too.
When my mom was diagnosed with pancreatic cancer on February 22, my sister and I didn’t think she’d be alive at the end of that month. She had already been sick enough that the previous week I had called the funeral home, prior to her cancer diagnosis, to see how to proceed when she died. My dad died of pancreatic cancer in 1995. He was a healthy 71-year old before he was diagnosed on June 5 and died two months later to the day. My bosom friend Maggie had colon cancer. It was only in her last month that the decline was significant, and then she was gone. My mother started off far older and far weaker than either my dad or Maggie, but her last days have gone on for much longer.
When we started this journey over a month ago, my mother could spend a few hours in this chair. She would look at the front section of the New York Times and eat a quarter or two of a grilled cheese sandwich. That was in the morning. Early afternoon came, and she slept and slept. We would help her to the toilet using her rollator and then Rosemary went out to Rite Aid and bought a bedside commode. That was days before we decided to go to the St. Mary’s emergency room where kind Dr. Neil Priest came out into the hallway and asked me if my mother had ever had cancer before.
Within twenty-four hours, hospice had set up a hospital bed in her room with one of those hospital tables that can be rolled over the bed. We waited for the hospice transport to take mom home to her death. Mom had known she was very weak and elderly, but we had thought she needed to be in the hospital just for hydration and nutrition after a difficult-to-beat UTI. When we heard that it could be another four hours before the transport home arrived, I made the decision to just drive my mom home, just like I had driven her over there two days previously. In fact, with the IV drip, she was stronger leaving than when we arrived. But now we knew we were going home to the end of her life. With the help of a hospital volunteer, mom got into my Prius and we took a winding way home to see more of the early spring color that had opened up.
At home we started our new reality. During her good hours in the morning, she talked to close friends and family telling them of her news. She reassured them, telling them that she felt calm and accepting, two words I hadn’t expected to come out of my mother’s life as she closed in on death. Soon she would switch the conversation and ask, “What’s going on with you?” She amazed us with her calmness. Always, though, once noon passed her energy drained away, and she slept and became weaker. The pounds were shedding off her. Each night Rosemary and I would peak in her room to check whether her chest was still going up and down with each breath.
The first week was full of our new Hospice cast. Amanda, the sweet home health nurse, who had started in late November with twice weekly visits was replaced by Krista and Linda, the Hospice nurses who checked her vitals twice a week; Jennifer and Cathy, the aides who gave mom her twice weekly baths; Robin, the social work; the Hospice chaplains, David and Craig; and then Father Frank, the Franciscan priest from the Catholic Center. New processes for mom and Rosemary and me to adjust too. Lots of activities for all. The days passed before we knew it and mom lived on.
The oncologist had advised that family come soon so that they would be here before my mom was non-communicative. He was right. My brother Charlie flew down from Maine. Rosemary, Charlie, and I became a team, sometimes smooth working, sometimes worn out with ourselves and each other. There was my mother’s care, but there were also the worlds inside each of our heads and the new reality that was coming up upon us three. Both my daughters Clare and Anne are very close with my mother, and both live overseas. But it’s only Clare whose work can move with her. She booked a flight from Paris to Newark to Atlanta and spent two weeks here. My cousin Nancy hadn’t been on a plane in about fifteen years, but she maneuvered the world of Internet booking and spent a long weekend with us. Each of their visits was important for them to make, to give them a time to say goodbye to my mom, to care for her, to support Rosemary and me. With each of their visits, we wondered if my mom would be alive when they left, but she kept going like she continues to do so now.
My mom got to hear from Charlie about what his kids — Hagen, Ella, and Ford– are up and to reminisce about the days she sat in the bleachers watching all Charlie’s baseball games and about how she let Charlie ride his bike with his friend Peter out to Montauk when he was just sixteen. I’m not sure we were even wearing helmets then. With Nancy, mom talked of places in Manhattan and about her mother and father. The weekend Nancy visited Mom had had a surprisingly strong Saturday. She wanted to walk into the living room and watch an episode of Vera, the BBC mystery that my mother and I had become addicted to. Before she went to sleep for the night, I threw out the idea of a Sunday drive as a possibility. Morning came, and she was eager, so we wheel-chaired her to the car and drove through the countryside to Watson Mill Bridge Park. That would be her last time out of the house.
My mother’s relationships with both my daughters have always been special. Clare used to spend a week or so up on Long Island with my mom each summer. My mother would send her home with a scrap book. This visit was even more special. Clare is a great cook and made my mom NYTimes chicken pot pie and some chicken and fish cakes, all of which my mother had requested, though she only took the tiniest helpings of each. My mother had Clare read to her, a reversal of Clare’s early years when of course my mom read to Clare. The started with Henry James, my mother asking for Clare to turn to certain sections of A Portrait of a Lady. A day or so later, Clare was reading poetry to her and then the light-hearted P.G. Woodhouse short stories. Another of the last days my mom made it out of her bedroom, she and Clare spent a few hours looking at the birds on the deck.
Now those days seem like dreams from a distant past. My mother hasn’t been out of bed in over a week. Last Thursday she got a catheter, so the pee goes neatly into a plastic bag hanging from the side of the bed. Rosemary and I take care of her other custodial care, cleaning her up like I did my daughters so many years ago. We wash her face and feed her ice cream and pudding and guide a straw to her lips so she can sip some water, milk, juice, coke, ginger ale or Carnation breakfast drink. A couple of weeks ago I bought a cordless bell at Lowe’s, very helpful but now mom can hardly push the ringer. As I sit here typing, she’ll whisper “drink, drink.” I get up again and again to adjust the army of pillows that we retain to support her in different positions. My crossfit training is getting used, as I kneel upon the bed, engage my abdomen, straighten my back, and hoist mom up a few inches so her feet stop pressing up on the foot of the bed.
For the last few days, she’s been restless and more agitated, wondering if we will offer her food or if we have taken her chocolate. “I’d take medicines if they would offer me any,” she said to the nurse yesterday. At times she has obsessed on her dentures, insisting we don’t lose them and then trying again and again to get them in herself.
My mother does take some medications but very few really. Her nausea has eased up during the day, something Krista told us happens as people come closer to death. God’s gift to the dying, she said. Right now, there’s a 1 ml of haloperidol at night along with a 1-mg tab of lorazepam, both to quiet restlessness and allow her to sleep through the night. On occasion during the day, we give her a tiny white anti-nausea pill or a docusate to avoid constipation, a common problem for the dying.
Last week, I was getting worn out and restless from the waiting. My Saturday bike ride cleared my head and revitalized me for this last stretch. I now know that each death is really different. There is a comparison between birth and death. The entrance into this life and exit out of it are sacred times, both for the person experiencing the moment and for those greeting and saying farewell. To care for a person at both ends is a gift, to see life begin and end. To experience its grace, its hard work, its power, its sadness, its joy. So many people die alone. To be with my mom through this process is the most meaningful thing I’ve ever done for my mom. But births, though incredibly hard for the mother, happen in hours or at most days, not in days and weeks and months like death.
Each time the nurse comes by, I ask questions searching to understand what goes on physically as one dies. It’s futile, but you want to have some control and be ready. And though I’m here beside my mother so often, there still is no way to know what she is experiencing. At this stage she is too weak to tell, and she seems too weak to really know or to be afraid herself. Her goal seems to be to get through each moment. She is ready for death. Her body is hanging on, but it will soon be gone too.
After all these weeks, I finally feel calm just waiting.