Jane Mather's last days
Jane Mather’s last days
by Penney Kome
Jane Mather had Chronic Obstructive Pulmonary Disease for more than 15 years. COPD is the new name for emphysema plus chronic bronchitis, and almost always results from smoking cigarets. Jane exercised and took her medicines faithfully. Although she had less than 30% lung function left by 2006, when her husband George died, she managed to survive seven more years, living independently in her own home. She had a doctor who made house calls (Dr David Scheiner, retiring from practice this year), Peapod webvan grocery delivery, and a series of cleaning women and caregivers who came in daily -- in addition, of course, to wonderful local friends like Vreni Naess, Marci Enos and Helen Williams. As a former editor, Jane was very comfortable with computers, and stayed in touch with friends and family across the world.
Jane often lamented that her children did not live nearby, but she did see us regularly through the year, although we are based in Nashville, Ottawa, and Calgary. My work with a national arts organization brought me to Toronto quarterly from 2004 on, so I usually visited Mother every September, December, March and June. Dylan usually was able to re-arrange hours in his own company, Understanding Computers, so he could be available to help her with medical procedures, such as cataract surgery. Christine and her young family joined Jane for holidays, and for summers in the family home at Pentwater, Michigan.
I looked up the survival rate statistics lately for Stage 4 COPD: after five years, only 11% survive. Mother survived seven years. But we always knew she was very sick. I flew to Chicago in mid-November 2012, at her request. (I was planning to go in September but had hernia surgery September 17, and my surgeon would not let me fly until mid-November.) Mother felt the COPD was advancing. She woke up shaking and twitching and unable to get warm.
Dr Scheiner was working with her by phone, adjusting her meds, testing for drug interactions. He eventually visited her one morning (on a house call!) while I was there and we talked where she couldn’t hear us. He said the twitching was Asterixis and signalled narcosis, CO2 rising in her lungs, blood levels and in her brain. He said narcosis is inexorably fatal but it's not a bad death. He didn’t know what to do about it, but then he didn’t know how she had survived the past 15 years. He said he’d talk with her pulmonologist when he got back to his office, because, he said, he had a lot of respect for Mike Neurekis's ingenuity.
Dr Neurekis called at noon and urged Mother to come into the University Hospital Emergency Room, by ambulance, because she was in respiratory failure. He said she’d been in chronic respiratory failure since she became his patient, but this was acute respiratory failure. From the ER, she went to ICU. I spent most of my time at the hospital until she came home two days later with a CPAP machine, a second breathing machine to wear at night, to keep her airways open so the CO2 could disperse. We had a long fitting session with Juan, from Walgreen’s, trying to choose a CPAP mask that worked with Mother’s 24-hour oxygen delivery via nasal cannula. Finally, she found a mask she could wear *over* her cannula, instead of trying to attach her oxygen line to the mask itself. And she learned how to wear the mask every night, protesting and complaining all the way.
I think we all knew she had just bought some more time, but she was in denial, and thought she’d found a cure. Dylan flew in, in early December, so I could fly out and get back to my ailing husband and family. I’ve always phoned Mother two or three times a week, and Christine phoned her daily. I started phoning more often.
Mother was going to turn 85 in February, if she made it. I suggested an 85th birthday party. She said "No" at first, of course, and then she said, "Mimosas and lobster rolls." She insisted on having just a small gathering, and picked half a dozen friends. As for a gift, her friend Vreni suggested a book about Jane. So I invited about 25 of Mother's family and friends to send tributes, memories, photos and stories, and I compiled them all into a soft book with colour photos. I tried to create a scrapbook too, but finished only about six pages.
In March, Bob underwent knee replacement surgery, which turned out to be much more intense than he had expected, because he threw some blood clots and had to be treated for Pulmonary Embolisms. Christine was at Mother’s apartment and reported Mother's breathing was deteriorating.
In May, Dr Scheiner visited Mother and convinced her to sign on with Horizon Hospice for Home Hospice Care. I took our big old dog to the vet, and the vet said he had abscessed teeth that required antibiotics and surgery but that he probably would not survive surgery. We settled on repeated rounds of antibiotics and more painkillers.
In June and July, I mostly tended to my garden. Bob had more than 3 months off work, while he healed. I started physiotherapy, hoping to be allowed to return to some of my pre-hernia exercise routine. We continued to phone Mother regularly.
After a few months of talks, Straight Goods publisher Ish Theilheimer announced that SG News would merge with rabble.ca Thus ended my wonderful well-paid job that I could perform from anywhere. Towards the end of July, as I put the last issue of SG to bed, I phoned Mother and I could hear the narcosis rising in her voice. I arranged to visit her. She asked why. I said, “Do I need a reason to visit my mother?” The day I spent packing and getting on the plane was one of the hardest days of my life.
But I was cheerful when I walked in Mother's front door, and Mother was glad to see me too. We had four good days together. I brought her five bouquets of her favorite flowers and set out tasty food timed to her routine. Friends came and visited, including Marci and Vreni. One evening, Mother and I watched Bunheads, streaming the episode from Amazon using the Roku Sanford had set up for her.
Sunday night she collapsed. She pushed her Rollator briskly down the hall and took the left turn to her bedroom too fast. The Rollator scooted away and she fell on her bottom. She told me to get the ottoman on casters, and I hoisted her up from behind so she could sit on it. We wheeled her over to her bed, and I helped her lunge onto it, and turn over on her back.
We talked for a while. I brought her water, and a bottle of Boost with a straw. She fussed about being a bother. I said, it’s time to let us take care of you, the way you took care of us. She said, Yes! I did! We talked some more. She said, “I’m afraid to go to sleep. Dr Scheiner says that’s probably how I’m going to die, in my sleep.” I said, “It sounds like a gentle way to die,” which is what he’d told me in November. A little later she said, “I’m tired. I’d like to go to sleep now.” I adjusted her BPAP mask. That was the last time she made sense.
She was non-responsive the next morning. I phoned the hospice. Mary Jo and a social worker came over mid-morning, and pronounced Mother non-responsive and bedridden. We discussed funeral arrangements and lined up the Memorial Society’s funeral home. Mary Jo asked if we should remove the BPAP mask for Mother’s comfort. I said I wanted my siblings present.
I phoned Dylan and Christine. We had been in touch by email since my arrival, so my call was not a surprise. Christine flew in that night, Monday. We took Mother’s mask off and Christine tried to talk to her. Mother waved her arms around in motions that looked like the daily exercises she’s been doing for 30 years, and she made some sounds and said some words. She pushed her finger into my collarbone and said, “Penney”. Then she fell back and started waving her arms around. Christine said she couldn’t tell if the motions were volitional. We gave her some morphine from the hospice emergency kit, as we’d been instructed, and put on her mask, and she settled down. Dylan arrived Tuesday evening.
On Wednesday, we three siblings discussed the prognosis with hospice visitors and with one another. The social worker said that some people linger in the non-responsive state for two or three weeks. The hospice doctor said she thought Mother had only days left, if not hours.
A hospice nurse’s aide came daily to give Mother a sponge bath, and help with turning her from side to side every two hours, and swabbing out her mouth four times a day with mouthwash. None of us slept well at night. I’d visit Mother’s bed to check her and find Christine perched on the radiator under her windowsill, reading in the moonlight, or Dylan standing silently nearby, listening.
We heard a little hiccup in her breathing. Her skin was simmering hot, as her remaining lung cells died off in exacerbation after exacerbation. Christine said she’d talked with the hospice by phone, and reiterated that Mother might be more comfortable without the BPAP mask.
We’d notified Mother’s friends, and on Wednesday, both Vreni and Marci wanted to come to sit and talk with her, at her bedside. Before Vreni arrived, while Christine was greeting her in the hallway, we removed her BPAP mask so that she would be more comfortable and Vreni could see her face. Dylan and Christine and I sat around Mother’s bedroom, and then in the living room adjoining, singing lullabies and any other songs we all knew, while Vreni watched. Then Vreni left, and Marci came for a visit.
I was determined that we should eat regular healthy meals. I know I feel better when I exercise and eat right. I made dinner every night, usually with fresh veggies from the farmers’ market. We had dinner together that night and talked.
The next morning, Christine invited me to take her to the Thursday farmers’ market. Mother had had an uneasy night. Her hiccup was more pronounced. Dylan said he’d sit with her, and text if anything changed.
We’d just reached the market ten blocks away when he texted, “She’s stopped breathing.” Christine and I started running and then flagged a cab, which got us there in a few minutes. Christine thrust a ten at the driver and we ran upstairs. Dylan said she died at 10:10. We phoned the hospice. Mary Jo arrived and pronounced time of death at 11:11. We phoned the funeral home.
Mother was wearing only underwear. We tried to dress her in her favourite denim skirt and smart striped shirt. Christine picked a flower from one of the Lisianthus bouquets I’d brought her on Saturday, and put it in her hand. Two men arrived from the funeral home. They bagged her and put her upright on a dolly, strapped her firmly in three or four places, and gently carried her down the stairs.
Dylan, Christine and I went to Amelia’s, Mother’s favourite restaurant, and drank a toast to her memory over dinner. We spent the next few days clearing out the apartment and meeting with Rev David Schwarz, the new co-minister at First Unitarian Church of Chicago, to arrange for a memorial service on September 7.
I flew home on Tuesday. My family greeted me at the door, but our old dog Joey was too sick to get up. I phoned the vet the next day, and on Friday we took him in to the office to have him put down. Our whole family spent an hour fussing over him, in a private cushion-filled room. When Joey was giddily happy from all the treats and attention, I nodded to the vet. She pushed the potassium chloride to his heart, and he died too.
That's how I spent August 2013.