Caroline Lund, 1944-2006
Caroline Lund was a leader of the Young Socialist Alliance and the U.S. Socialist Workers Party from the 1964 to 1988, and a member of Solidarity later in life. This memoir of her final struggle was written by her lifelong companion, Barry Sheppard.
Caroline Lund and ALS, 2005-2006
By Barry Sheppard
Caroline was always a very healthy person. She started running at age 32, when we lived in Paris in 1979. Her usual route was from our apartment to the park by the Eiffel Tower, which was about six blocks away. Influenced by her example, I too started to jog. From that time on, wherever we lived, we would run together unless our work schedules made it necessary for each to jog alone.
Whenever she did get sick, she would go to bed right away, and sleep the cold or flu away, usually in a short time. The only medicine she ever took was Nyquil.
When we were in Pittsburgh, she decided to run in the Pittsburgh marathon in 1987. She got in condition by following the regime in a book for first-time marathoners. I didn’t think she could do it, but she did! So I decided that I would do it in 1988, and we ran that one together. At the time she was working in a steel mill and I in a small factory. I was hired in the same mill shortly after.
When we moved to the San Francisco Bay Area in 1991, we continued to run. She worked in an auto factory, a joint Toyota-GM company known by its acronym NUMMI, for the first years on the assembly line – which took stamina and strength. She did get off the line and into the plastics plant about nine years later, which was less arduous but still physically challenging. We figured she walked about five miles on each shift, and more of course when there were compulsory ten-hour shifts.
Caroline attended every meeting of her union, Local 2244 of the United Auto Workers, and was an outspoken militant worker in the plant, criticizing the company when necessary in defense of the workers, and the union leadership too. She joined a nation-wide dissident caucus in the UAW. In 1998 she began to publish her own independent plant newsletter, “The Barking Dog.” The Local leadership threatened her with a lawsuit when she criticized them, but they ran into a buzz saw when Caroline fought back and they were forced to retreat. As a result her popularity in the plant soared, and she was elected to the Executive Board in 2000 and again in 2003 as an independent. The old leadership was thrown out in elections in 2003, and she was able to work with the incoming group.
She was working in the plastics plant when her first symptom appeared. We were jogging with our dogs Chula and Guinness along the Hayward shoreline when she noticed that her left foot was not coming up fully after each step, and she was afraid she would trip. This was August 14, 2005. She alternated walking/running. She thought her legs seemed weaker and less coordinated the previous month. On subsequent days, the same thing happened, and she would walk while I ran. I said it might be MS (multiple sclerosis), and it looked serious and she should see a doctor.
Mechanics at Northwest Airlines struck. We both went over to the San Francisco airport and walked the picket line for a few hours on August 20. There was nothing noticeable in her walk.
She got an appointment on August 26 with a doctor at Kaiser. This was not her regular doctor who was on vacation, but someone in the adult medicine clinic. The doctor there looked at her walk, and told her nothing was wrong, but Caroline knew better. She called her sister, Catherine, that afternoon, and she also said it might be MS, and thought Caroline should see a neurologist.
The night of September 1-2, Caroline fell in the dark getting out of bed, and cracked her nose. She called off work. Minor injuries clinic said her injury was not serious. She feared she fell because of her weak left leg. Her regular doctor came back, and made an appointment for September 5. The doctor had her walk barefoot in different ways and carefully observed. She said she could see something was wrong, and referred Caroline to the neurology department. Her foreman denied her a personal holiday for the appointment, citing “production needs.” We had a camping vacation planned for September 17-23, and made an appointment for the 23rd, on our way back.
We camped in a beautiful redwood park north of Santa Cruz, in our tent, with the dogs. Our campsite was “like a big cathedral of redwoods” Caroline wrote in her journal. She had a slight limp in her left leg, and I cut her a branch to act as a “walking stick.” We went on walks in the campgrounds, and drove to a deserted beach on the ocean. Caroline had some difficulty scrambling up and down the incline from the roadway to the beach, but made it, and the dogs ran. We also drove to a beach in Santa Cruz that allowed dogs to run free. There was a steep wooden stairway down to the beach from cliffs above, but she could go down and up using the handrail. It was a little difficult for her to get up from the sleeping bag we shared, and I would give her a hand. We had a nice camping trip. It turned out to be our last.
We got to the neurology department for the 11 a.m. appointment after getting up early and breaking camp. The head of the neurology department, Dr Abramson, examined her, and said something was definitely wrong, maybe in the spinal cord in the back of her neck. He set up an MRI for September 29.
Caroline was doing a lot of work at the union hall, as one of the trustees overseeing union finances. Some of the union leaders saw that she was limping slightly. Her left leg got worse. She fell once at work, carrying a bumper from the plastic molding machine, and felt she had to hold on carefully to the handrail going down stairs.
I was retired, so I could accompany her to the MRI appointment, and to all her appointments from then on. On November 3, the doctor showed us the MRI pictures. There was a hole in her spinal chord, in her neck, called a syrinx. It was in the center, about two millimeters wide and one and a half centimeters long. That was the probable cause, he said, although he was surprised that a syrinx that small could be responsible.
She told the doctor that she “felt like an accident waiting to happen,” and he put her on restricted work. He also said he wanted to check out other possibilities like Lyme disease, and ordered a battery of blood tests. These all came back normal.
She still walked regularly while I ran.
She was referred to another doctor, Dr. North, who is a specialist on ALS, although we didn’t know it at the time. On November 22 he sat down with us and went over the MRI results in detail. He also ordered a disability placard from the DMV. He set up another test, called an EMT. He said that the syrynx should be monitored, and if it got bigger, it could be drained.
During this period Caroline was able to walk, although slowly. We went to dog parks, including a big one, called Point Isabel, that had a trail over a mile long. She was working on light duty, and also for the union as a member of the Executive Board. She was able to dig up the garden!
We got an exercise bike for her, and planted winter vegetables.
She was beginning to suspect that it might be ALS, and we started reading about it. There are two sets of motor neurons. One is called the upper motor neurons, and they run from the brain to the spinal cord. The other is called lower motor neurons, and they run from the spinal cord to the muscles. Both sets have to be damaged for ALS to be diagnosed. The EMT test is to look for damage to the lower motor neurons. However, the syrinx still looked like the culprit.
Dr. North also said there was an outside chance that a vitamin B-12 deficiency could be responsible, and ordered B-12 shots. Caroline’s face lit up, and in a heart-rending appeal asked if that turned out to be the case, would she get better and go back to normal? Dr. North said no, that even in that case, damage had been done. She was crestfallen.
Friends at the small dog park expressed their best wishes for her. One nice woman said she was praying for her.
At the end of December, she noticed that some toes on her left foot were curling up.
She put out a new issue of her “The Barking Dog” plant newsletter. I drove her to work at 5 a.m. and we passed out the BD. In it she warned that the UAW was at a crossroads. The International leadership had forced another round of concessions at Ford and GM. However, a rank-and-file group had sprung up centered in the Delphi parts plant that was fighting back, called “Soldiers of Solidarity,” SOS, she reported. Her Local union leaders thought the issue was “too radical.” She joined SOS.
On the way home from passing out the BD, she took BART (public transportation), but had another fall on the way out of the station.
January 7, she decided to go on disability. It was becoming too dangerous for her to go on the long walk into the plant from the parking lot, and to go up and down stairs.
The next day the Local union sent her, as union Trustee, to a union class for Trustees and Financial Secretaries, held in Palm Springs. She brought a cane for the first time. She called the neurologists’ office from Palm Springs and asked to go on disability, and they OK’d it on a return call.
She used the cane when we went to the dog runs. She was still cleaning the house. We had a season ticket to he symphony (six concerts). We had cheap tickets, up in the balcony, which had steep stairs. Now Caroline had to be careful going down the stairs to our seats. We heard one of her favorites, Beethoven’s Sixth Symphony.
She was still driving to the union hall (40 miles round trip) to attend Executive Board meetings. She also was on the Local’s newsletter committee, and often submitted articles or proposed others.
On January 28 we went to a dog run at another park and after looked at campers (trailers) since we knew that regular tent camping was now too hard for her. But we learned we would need to buy a large pickup truck to pull any campers. Besides, she had some difficulty with the stairs into the trailers we looked at.
She still cleaned house, but it was taking longer for her to get things done. I had put up a railing on the wall alongside the bed to help her get up and go to the bathroom. We realized that if we switched sides, she would have a shorter trip to the bathroom, and I put up another railing on that side.
She was also still going regularly to Central Labor Council meetings, representing the Local.
We went to her EMT test on February 7, with needles stuck in her arms, hands, feet and legs, hooked up to a monitor that showed neuron-muscle activity. Dr. North said the test did not show lower motor neurons were affected yet, but he could see blips that coincided with tiny twitches on muscles just under the skin. We had read that such twitches were often part of ALS. He set up another MRI.
When I was out of town a few days, she took the dogs to the small dog park, but had to get help bringing the dogs to and from the car.
My brother Roger visited us, and arrived on February 16. We took him to Point Isabel. Caroline held my arm, and we walked the mile and a half around the park, which juts out into San Francisco Bay.
On February 19, she had another MRI.
She began to lose bladder control.
On February 25 she was knocked down by dogs playing at the small dog park, and skinned her lip and chin. She noted that her legs were getting worse.
We saw Dr. North on March 1. He said it was clear that she was getting worse, but the syrinx wasn’t getting larger, indicating that the cause wasn’t the syrinx. He raised the likelihood that it could be ALS. He ordered her a walker, and set up the vitamin B-12 shots. The next day the walker came, and she said it was a big improvement over the cane, and she felt safer.
We went to a picket line for striking hospital workers, with her using the walker. At Point Isabel, she found that the walker did not work well on the uneven pavement.
On March 6, she went to a Central Labor Council meeting, and the convener asked out loud what was wrong with her legs, which embarrassed her.
Each week she was getting B-12 shots. I walked the dogs waiting for her.
On March 12, she had another fall in the house, trying to put away a sheet in the linen closet. She cried, saying she felt helpless. She also fell trying to use the weed-whacker to cut the backyard grass, a task she always liked to do. She also fell getting up from a chair.
We went to a picket line in support of workers striking a Honda dealer.
We had been seeing a therapist together since the fall of 2005. She cried while telling about each loss of function and fall, and I would cry too. The therapist explained that her crying was grieving about each loss, and perfectly normal and mentally healthy.
We talked to the physical therapist at Kaiser about getting a four-wheel walker for outside walks. He explained that since Kaiser had given us the simpler walker, they wouldn’t give us another. But he told us that COSTCO had relatively cheap four-wheel walkers, and we bought one. It had a seat and brakes. We went to point Isabel, and the new walker was much better and she was able to walk all the way around the park.
Her Local Executive Board appointed her to represent the Local at meeting of an organization of Latino labor officials in Los Angeles on March 24, since others on the Executive Board wanted to stay for an important Local election. Since she was no longer in the plant Caroline had decided not to run for the EB again, but served out her term to July.
I was already scheduled to be in L.A. for a meeting about my book on August 25, so we went together, with the hotel paid by the union. We went down to L.A. on March 23, and she found the airport stressful. She got a wheelchair to the plane, and her walker was checked at the door, and it was at the door when we arrived. It was the first time she was in a wheelchair.
We went to the all-day meeting. A demonstration for immigrant rights was scheduled for the next day. But even though everyone knew that it would be largely Latino, it was not on the agenda. Caroline raised that the meeting should support it, and then there was a discussion and agreement to do so.
That night in our hotel room, we watched the news. A police spokeswoman estimated that there would be 5-7500 people at the demonstration. Talk about being out of touch! The demonstration was close to one million! Our hotel was about six blocks from City Hall where the demonstration was scheduled to end in a rally. Caroline was able to use her walker to get there. It lasted all day. Then we walked about ten more blocks to the place where my book meeting was held that evening. Everyone was tired (so were we).
In the hotel there were special lifts to get to the floor where the meeting was held, and to the restaurants. On the sidewalks we looked for places where we could cross with the walker. Caroline said she was beginning to better appreciate the problems disabled people faced, something that became more and more true as the disease developed.
While we were gone our friend Mary Anne house/dog sat for us. Chula and Guinness knew her from other times and they loved her.
Caroline began reading a big book on ALS she ordered from Amazon. She was developing spasticity in her thighs. While ALS’ main symptom is the gradual death of most motor neurons, it can happen that some fire way above normal, and that was happening to her inner thigh muscles. As this worsened, it would cause her legs to tend to cross, “scissors legs.”
We flew to Boston at the end of March. She was getting used to being wheel-chaired to the plane, with her walker being stored near the door. The airline got us seats near the front so she could get to the restroom easily.
My brother Roger picked us up, and we stayed with my mother at her apartment in Newton. We celebrated my mother’s 95 birthday. We had our own bathroom next to our bedroom. Caroline slept on the side of the bed near the door so she could more easily get to the bathroom.
This was the first time my mother saw Caroline since her first symptoms. My mother was shocked (but said nothing) to see how far the disease had gone, as Caroline walked slowly around the apartment with the walker. Roger too could see that she had gotten worse since his February visit.
Brian, an old friend, telephoned me from Williamstown in western Massachusetts to say that he had arranged with a professor at Williams college for me to speak to two of his classes about my book, and I would get $500.
Roger drove us out to Williamstown (about 250 miles), and the three of us stayed with Brian and his wife. We went to the college the next day, and I spoke. The second class was the following day. On both days the professor got us into the faculty dinning facility. Brian showed us around the area, and we went to two good art museums, one at the college and the other in town. Caroline was tired from walking with the walker.
We drove back. On April 8 there was a book meeting at the Lucy Parson’s bookstore in Boston. We met some old friends who were concerned about Caroline.
She noticed that the weakness was spreading to her arms, especially her left one, and she was having trouble turning over in bed.
We met in a restaurant with our friend Gus and Roger, to talk about my next volume. On the way out, Caroline went to the bathroom. When she didn’t come out, I went to the bathroom, and a woman asked me if I was Caroline’s husband. She opened the bathroom door for me, and Caroline was on the floor. No one could help her get up with her walker. I helped her up. What happened was that the bathroom door had one of those vacuum closers, which was hard for Caroline to open from her walker, and when she did get it open, she was holding onto the walker with only one hand, using the other to push open the door, and went sprawling. The bathroom had signs saying it was fitted for handicapped people. We found in many other places “handicap” bathrooms had those hard to open vacuum door closers, kind of defeating the purpose. From then on, I would open bathroom doors for her, explaining to any women present why I was pushing the door open into the women’s room.
After this nice visit with Roger and my mother, we flew back to a reunion with Chula and Guinness on April 11.
Dr. North arranged for us to get a second opinion at the University of California in San Francisco ALS clinic. Caroline’s sister Catherine had told us about the UCSF neurology department and urged Caroline to go there. We drove over for a four-hour appointment on April 12.
She saw a nurse who gave her various tests including a breath test. Sooner or later everyone with ALS has their diaphragm muscles affected, although this happens in different stages in different cases. Caroline’s breath was stronger than normal, due to running, so at this point wasn’t affected. An intern checked her different nerve-muscle responses, and she saw Dr. Loman-Hoerth. Caroline described her in her journal: “Tall, solid, good natured, confident pretty woman.”
The UCFS ALS clinic was founded by a doctor who was one of the authorities on the disease. Dr. Loman-Hoerth was mentored by him, and was well-trained. In one of life’s ironies, the clinic founder himself developed ALS after decades of studying the disease and helping patients with it. Dr. Loman-Hoerth worked well with Dr. North.
The clinic recommended two prescriptions, one for the spasticity in her legs, and the other to ameliorate her “urinary urgency,” as the nurse called it. Dr. North filled out the prescriptions and also gave her a spinal tap. The pill for urinary urgency had another effect – dry mouth -- but it did help.
Since February when she went on disability, one of our daily routines was to drink coffee together in the morning, and read the NY Times and SF Chronicle. We would discuss the news. Another was to watch TV or a movie in the evening, with a glass of wine. Caroline liked these times together. I was always the main cook in the decades of our life together, and had become pretty good at it. I still cooked dishes she liked, which continued to be an enjoyment for her.
April 24 she wrote her last “Barking Dog.”
On the same day she went to a yoga class with Mary Anne. She said she couldn’t do everything, but she liked it. Mary Anne had to lift her from the floor. Many of the stretches are the same ones the physical therapist prescribed.
On May 1 we got up early to pass out the “Barking Dog” at the plant. Caroline stayed in the car. A friend helped me. Later that day we went to a big immigrant rights demonstration in San Francisco.
The Local Executive Board voted to send Caroline to a conference in Detroit sponsored by Labor Notes magazine. She flew on May 4 with Erwin and Estar, older friends who had been in auto, and their son-in-law, who helped Caroline and Erwin. Erwin also had a walker. She got a “handicapped” room in the hotel. The first night she was alone, and had difficulty getting up on the high bed. She propped her walker on the other bed in the room, and used it to push up onto her bed. The next night she was joined by a nice young woman who helped her. Caroline cried telling her about her condition.
While at the conference she was able to meet and socialize with members of Soldiers of Solidarity. This the last time they would get to discuss with her in person. Her determination to attend the conference in spite of the obstacles was an example of her typical bravery.
She had a grueling trip home on May 8. The airline left her and Erwin’s walkers in Denver. The son-in-law took care of them both getting off the plane. I picked her up and had dinner ready.
She found the yoga class more strenuous, and almost fell but Mary Anne caught her. She was getting more fatigued, and napped more.
Because it was getting too hard for her to manipulate the clutch for our stick-shift, we decided to get another car. On May 11 we got a used Honda hybrid with an automatic transmission, and power steering and brakes. She felt confident driving again. She still drove to union and Executive Board meetings.
We got a “robot” vacuum cleaner which she could control with a remote. She couldn’t use the regular vacuum cleaner any more. Her arms were becoming weaker, especially the left arm. She wanted to keep doing her ordinary tasks as long as possible. I started doing the dishes because her arms and left hand were too weak.
She began going to an easier yoga class, where she didn’t have to get down on the floor.
We had a very hot spell, desert winds, dry, in the 90s. Her urinary urgency pill had the effect of not only dry mouth but also inhibited her sweating. We had no air conditioning, but the car did, and we drove up to Point Isabel with the dogs, where it was 20 degrees cooler by the Bay.
Caroline no longer would go the whole way at Point Isabel, but she could make it to benches part of the way while I ran with the dogs. Over the summer, she could go less and less far without becoming too tired. I would wave to her from parts of the trail I could see her from. It became more and more difficult for her to maneuver into the rest room with her walker. The dogs became used to waiting for her outside the rest room.
Friends had tickets for us to go to “King Lear” on May 25, but she was too tired.
Her left wrist and hand developed a broad lump, and the hand was losing its abilities. It was getting harder to write or type on the computer with the right hand.
On May 30, she went for another EMT test. Dr. North immediately said it showed for sure that she had ALS. We were not surprised, after reading a great deal about the disease, to hear this diagnosis but it was still a blow.
Some days later she let out a heart-rending cry, “I want to live!”
I emailed many of our friends about the diagnosis, and she also told the network of militant UAW people on the Soldiers of Solidarity list.
She still used the robot vacuum cleaner, and could water the front and back yards standing with her walker. I had put up grab bars in the bathroom where she indicated they would be helpful, and also a railing to help her get into the shower. I moved the bed and other furniture around in the bedroom so she could get up more easily.
In the night of June 5, she tried to straighten out her t-shirt in the back, and her left arm fell back painfully. She couldn’t raise it and I did so after being awoken by her cries.
She saw that her muscles were visibly wasting away, with the exception of her spastic inner thighs. She joked that while her upper body was getting thinner and thinner, her thighs looked like Arnold Schwartzenegger’s.
She answered a lot of emails of sympathy. She was still listening to Books on Tape while in the car, and we watched movies at night or mindless TV like reruns of “Law and Order” when she was too tired for a movie.
She told me that she would end her life before the disease got too bad. I said I would support her in whatever decision she made.
She had the idea of holding a big celebration at our house on August 20, for our 40th anniversary, which was in reality a gathering for people to say goodbye to her. She was beginning to plan out her death.
On June 18 I bought an electric toothbrush for her, which is easier to use and has a wide handle which she could hold better in her right hand. I also got some sleeves that fit over pencils which made them easier to hold, and other gadgets
On June 22 we flew to New York. We stayed with our friends Gus and Suzanne. I had to help her get on and off the high bed. We attended a socialist conference for two days, and I spoke about my book at one session. Gus drove us to and from the conference.
Saturday evening, June 24, we went to a party with many friends in the New York area. I spoke about my next volume, which sparked a big discussion that lasted many hours, after we had to leave at 11 because Caroline was too tired. It was an occasion for many in the New York region to see her one last time.
On Sunday the 25th Gus drove us to Catherine’s apartment where we had dinner, including Catherine’s daughters Elizabeth and Rachel. Caroline told them about our plans for August 20, and they were interested in coming out to the West Coast for it. It was a very emotional time for all of us.
We flew home the next day. Mary Anne told us that Chula had had a seizure. It turned out to be epilepsy, and she was put on medication to treat the disorder.
We went to another appointment at UCSF on June 28. Caroline got a different medicine for the spasticity in her legs to see if it would help. It turned out that nothing helped, and the spasticity got gradually worse. She got another pill that helped with emotional lability.
People with ALS tend to get inappropriate spells of laughing and crying. Once we were listening to the “Colbert Report” on Comedy Central. The jokes were coming in rapid fire, Caroline was laughing so hard it got out of hand. She told me to shut the program off. Other times she would cry over a loss, but the crying would continue and she would wave her hand signaling that she was no longer feeling sad even though still crying.
She was again tested at the clinic for her breath, which was still fine. She signed up to participate in various research studies on ALS. One of these was for a genetic study, and she gave blood for that at the clinic. I was informed after she died that a comparison on the genomes of 2,500 people with ALS with those without the disease showed 50 abnormalities. The results have to be duplicated, but may give some leads, so her participation in this trial had a positive result.
Another study was about environments Caroline was exposed to. A researcher interviewed her for three hours over the phone July 3 and 7, about chemicals she had been exposed to (many at different jobs).
The anti-spastic drugs were making her very tired. She was taking naps in the morning and afternoon. She was too tired to go out for a haircut. I was helping her more and more to take showers and get dressed. Walking even with the walker was becoming more difficult.
On July 14 we went to UC Berkeley Psychology Department for a study on emotional responses in people with ALS. The first session included me. She was wired up like for a lie detector test. They had us discuss our reactions to funny and sad or disturbing images on a TV monitor, and recalling such incidents in our lives. They also asked her questions such as what songs made her cry. She replied “The International” (which one of the testers actually knew) and she started crying. The second session was with her only, and lasted all afternoon. She was emotionally drained after.
The next day we went to a support group for people with ALS and their caregivers. We met a lot of nice people, who discussed their situations. One person told about a “loan closet” run by the Muscular Dystrophy Association/ALS division which had motorized wheelchairs that could fold up to be put into a car, called ATMs.
A friend, Carol, came to visit from Santa Cruz and offered to help. In the next few months she did help quite a bit. Caroline no longer could do any cleaning in the house. A friend at the dog park told her about neighbors of hers who did house cleaning, Nellie and Sonja. They started coming once a week, did a marvelous job, and became good friends.
A new symptom began to appear slowly at the end of July. A region of the brain known as the Bulbar region controls muscles in the mouth and throat. In some people ALS begins here, but not in Caroline’s case. Her speech began to be slightly slurred, and swallowing gradually became more difficult. I began to cut up her food in small pieces. Soon she found that popcorn and hamburgers, two of her favorite treats, were hard to swallow and were no longer tempting.
Books and websites on ALS indicated that most patients die within two to five years. Clearly, Caroline’s disease was progressing much more rapidly. Previously, I had told her that I would support whatever decision she made about ending her life. Now I told her that I agreed with her to not prolong it. She brightened up, and smiling/crying she said how much that made her happy!
Dr. North had arranged physical therapy people to come to our home, although they were allowed only three visits. He also had ordered a regular motorized wheelchair, and a person came over to measure her for one. He told us we would need to get a ramp built. Carol’s husband Dean is a contractor and offered to arrange for one to be built. Another old friend, Derrell, designed the ramp.
On July 25 we got the ATM wheelchair, and she began to use it in the house – a big improvement concerning mobility. We also began to take it in the car to Point Isabel. With my help and a grab bar, Caroline could make it down two steps from our kitchen into the garage to get in the car. We also got a thing like two discs that helped me rotate her to put her into the car. She could no longer stand alone.
We got a new computer table to fit the ATM wheelchair. Our bathroom is narrow. I took out our sink/cabinet and put in a new one so the wheelchair could get by. From the wheelchair she could get to the toilet and the shower which had a grab bar and a chair we put in.
Caroline was still answering many, many emails from around the country and world.
Another friend, Jennifer, began to come over and tape an interview with her about her life, in preparation for an obituary. Caroline wrote to the Local’s Executive Board about her ALS.
On August 7, workers organized by Dean came over and began to break up the concrete front steps and sidewalk in preparation for the ramp. The next day, they poured the concrete. They did a marvelous job.
My brother Roger and my mother arrived from Boston August 8. My mother went to Roger’s twin, Roland’s, house in San Francisco while Roger stayed with us. On August 11, there was a dinner at a nice restaurant Roland had arranged for his and Roger’s 65th birthday. Besides the three of us and mom and Caroline, Roland’s sons Kyle and Kevin, and Kevin’s wife Maria were there. Caroline used her ATM to get from the car and to sit at the table.
She could no longer use the two steps to get from the kitchen to the garage, and began to use the wheelchair down the ramp to get to the car.
On August 14, Roger went to Roland’s and my mother came to our house. Carol gave Caroline a haircut, and another friend, Rich, came over to help out. Roger came over during the day on the 16th, and together with another friend, Jan, helped me clean our back patio in preparation for the 20th.
I picked up Catherine, Elizabeth and Rachel at the airport on August 18. They stayed at a nearby motel. Catherine had made a wheelchair quilt, and two short dresses from old clothes – these presents greatly moved Caroline. We had found that dressing her was easier with short dresses than pants.
Catherine also told Caroline that she was quitting her high-paying job as a designer of drug tests for a pharmaceutical company and would try to get a job as a nurse in a hospice, in tribute to Caroline. Caroline was overwhelmed with emotion. (It took some time, but Catherine, who is a registered nurse, did get such a job after Caroline died.)
The next day Catherine, Rachel and Elizabeth pitched in with preparations for the party, helping me with food, including a couscous salad, deviled eggs, and chicken salad. We had scheduled the event for 1-5 p.m. Many old friends came, and some of Caroline’s co-workers, neighbors, and friends from the dog park. Some brought more food to add to what we had prepared, and we were overwhelmed with food. Roland and Carol took over the barbequing of hot dogs, hamburgers and sausages, as well as marinated fish I had prepared. We had soft drinks, beer, wine and coffee. Something between 80 and 100 came for part or all of the event. There were animated discussions, including among people from many different backgrounds who met for the first time. Caroline noted in her journal that evening that “the 40th anniversary theme helped blunt the ALS sadness” and that it was “a big success. Everyone enjoyed themselves.” Caroline was pleased and happy.
I drove Catherine, Elizabeth and Rachel to the airport the next day, and my mom and Roger left on the 22nd.
Our two dogs always slept with us on our bed. “Each day my body gets worse,” she wrote. She shifted to our spare bed, because it was becoming harder to turn over in our bed with the dogs. I had to help her more getting up, going to the bathroom and into the shower. I dressed her and lifted her into and out of bed. We found the best way to do this was for her to put her arms around my neck facing me in close with me lifting her with my arms around her waist, when I would kiss her neck.
We talked about my financial situation when she was gone, when her disability checks would cease. She decided she would make it to her birthday, September 24, when she would be 62 and could retire with a bit higher pension, which would then go to me. On August 26 we went down to NUMMI to sign papers for her to retire on September 24.
She started reading “Tuesdays with Morrie,” an account of a man with ALS. She wrote “I’ll try, like him, to do my crying and self pity in the morning and then get on with life.” She also began reading “Final Exit,” a book on ending your own life when it was time.
We had to go back down to NUMMI to finalize the papers on September 1. We went through only a very small part of the plant, but the workers we did meet greeted her (she was well known). One told her that he asked a Local official why there hadn’t been any notices up about Labor Day – and was told “Caroline’s not here.”
We went to another appointment with Dr. North. She impressed on him that she didn’t want to prolong her life. He also saw that she was deteriorating fast, and said he would arrange that she be put in hospice. In Kaiser, hospice is not a place where you go, but are given home visits. Once this decision was made, Caroline became very calm and serene, with the exception of one experience I recount below.
A nurse came once a week. Three times a week someone came to give her baths and a shampoo, in bed as it became too difficult to get into the shower. Once a week a masseuse came, which Caroline enjoyed.
The nurse ordered a hospital bed, which came a few days later. Caroline could no longer turn over in bed, and the spasticity in her legs had become painful. The nurse prescribed methadone and morphine. Caroline called to me four or five times during the night when the pain became unbearable, and I would give her morphine by mouth, turn her over and spread her legs apart, which would temporarily relieve the spasticity. I also would put her on a commode. I dressed and undressed her, and together we figured out how to simplify that. To help with her dry mouth at night, the nurse had given me sticks with sponge-like things on one end that I could fill with water she could suck on.
We still had coffee in the morning reading two newspapers (the SF Chronicle and the NY Times), and discussed the news. Then she would take a nap before lunch.
At the nurse’s suggestion, she got a catheter. She was very pleased with it, and said that everyone should get one. It made it easier to go to Point Isabel, as she didn’t have to stop at the restroom.
I was doing a lot of lifting day and night, and not getting much sleep. My back was strained. The hospice also sent us a social worker, who suggested that they arrange for Caroline to be cared for at a nursing home for a few days to give me a rest. She assured us the staff knew how to care for ALS patients. We looked it over and it seemed fine. They also would allow her to have a glass of wine at dinner, and the dogs could visit her.
I left her at the home in the afternoon and came back at six with the dogs. We had a glass of wine in a courtyard. I could tell she wasn’t too happy with how she was being treated, but she said she would try it for a night. O terrible decision!
I was bone tired and fell asleep at 8. I slept straight through until I was woken by the phone at 8 a.m. It was Caroline on her cell phone, imploring me to come get her. I immediately got dressed and jumped into the car for the 30-minute drive.
I found her in tears and shaking. The staff were not only ignorant about ALS, but were callous and cruel. There was no nurse on duty at night. When she woke up needing to be turned over and given morphine and water, she pressed the call button. No one came. Finally, at 5 a.m. someone showed up. The staff person started to turn her over, but when Caroline said she needed morphine, the person said that she couldn’t do that because only a nurse could, and left her partly turned over, unable to reach the call button, in increasing pain. Not until the day staff came in at 7 did a nurse give her morphine and she was turned over. She told me “it was like Abu Graib.”
The home tried to get her to stay, no doubt to avoid the bad report. She was adamant, and they let her sign out, after a long delay while they counted out all her medicines. Caroline was relieved and glad when we got to our house and dogs. I felt awful. The hospice social worker called, apologizing profusely, but it was clear she hadn’t done any investigation of the place.
From what I later learned, this nursing home was typical, not an exception. We noticed before we left that many patients were crying out in pain – something we should have taken note of the previous day.
While we were waiting for the regular wheelchair to arrive, they gave us a “loaner” that she used, except when we went out in the car with the ATM. Caroline was able to go out around the neighborhood in her wheelchair. While I did errands or went for runs with the dogs, friends would go with her.
Jennifer continued to come over to interview her for her obituary. Caroline also planned to go on a walk to raise awareness and funds for ALS on September 17. We decided we would have a dinner/discussion with some folks to get ideas about my next volume, on September 16. Caroline participated but mainly by interjecting from her bed.
Caroline asked our close friend Malik to be the main speaker at her memorial meeting, and he agreed.
The September 17 event, “Walk to D’feet ALS” was on a nice sunny warm day. We had a small contingent of friends and coworkers. There were about 600 on the walk in all. The walk was to be three miles around Lake Merritt in Oakland, but there was a short walk also, which we took, so that Caroline would not get too tired in her wheelchair. Coworkers in the plastics plant at NUMMI had signed a huge card, which she proudly held up for a photo. On the way, we met Dr. Loman-Hoerth, who greeted Caroline warmly. At the end, she talked with one former union official who came, not about ALS, but what was happening in the factory and in the Local – typical for Caroline.
Her right hand was getting weaker, and her handwriting spindly. On September 24 – her birthday – she put in her journal her last entry, “Can’t write. Can’t wipe off my glasses.”
She set the date. October 14. Together we looked through our photographs and she picked out a bunch from various periods of her life to be displayed at her memorial meeting. She also chose some songs she always liked to be played at the meeting, including “Rocky Mountain High” and “Here Comes the Sun” – uplifting songs for those attending, typical of Caroline’s sunny disposition. And, of couse, the meeting would end with everyone singing “The International.”
She was able to go to Point Isabel with the dogs a few more times, until she was too tired to stay awake for the three hours or so to go there and back.
Our friend Gus had recommended a series that had appeared on HBO, “The Wire.” We got the first season on Netflix, and began to watch it in the evenings with a glass of wine (“One of my few pleasures” she said.) Each episode was an hour, after which she would go to bed. She liked the series.
We tried looking at another HBO series, “Deadwood,” but Caroline got too tired to watch the first episode.
We hired a friend, Mary Anne, our dog/house sitter, to spend the nights from 10 p.m. to early the next morning. She is a registered nurse, and woke to turn Caroline over and give her morphine and water during the night to relieve me to get some sleep.
Jennifer completed a draft of the obituary. We read it over and edited it, mainly to correct some facts, add a few points, and tone down what Caroline thought were too effusive accolades about her life and accomplishments. These latter were indeed praiseworthy, but the facts spoke for themselves.
A few days before her death I wrote her a “goodbye” letter, through tears. She read it and we were able to exchange some important last words about our life together.
Catherine arrived on October 13, to be with her. Catherine’s support to both of us was wonderful. That night I cooked her last supper, cut up roast beef, mashed potatoes and peas. She had a glass of wine. We talked. Catherine asked her, “Are you one hundred percent sure you want this?” Caroline answered “One hundred and fifty!”
The next morning Caroline got up at 8, and had a small bite to eat. She had read in “The Final Exit” that it would be best to eat a small amount four hours before taking the medicine, to help keep it down. She dictated a short note that I typed in the computer stating that she had ALS and was ending her life, that this was her decision alone and she had no assistance. She then signed the note in her spindly handwriting.
She talked to Jennifer on the phone for about an hour concerning the editing of her obituary, an indication of her calm, serene and lucid state of mind. Then she went back to sleep.
I woke her at 11:30, because she wanted to do it at noon. As I lifted her, kissed her neck and put her in the wheelchair, she said, “Let’s get this show on the road!”
While ALS has different courses in different cases, it is invariably fatal. All who have it eventually become almost completely paralyzed, are unable to speak or eat, and finally, to breath. Caroline was not suicidal. She just refused to end up like that.
In 95 percent of ALS cases, the mind is not impaired. The whole way she took charge of her death showed her clarity of mind, but also her extraordinary strength of character. That too was typical of Caroline throughout her life. She showed me how to die.
“Final Exit” lists lethal doses of various drugs. All of the ones she took were prescriptions ordered by the hospice nurse. These included methadone and others, but the main one was morphine. She couldn’t hold a glass in her right hand, but could drink from a plastic cup in small sips. She downed the pills and began to drink the morphine at 11:45. She finished shortly after noon.
When she began to get sleepy, I put her back into her bed. She said her feet were cold, and Catherine held them in her hands to warm them. She asked me to put on Mozart’s opera, “Cosi Fan Tutti,” one of her favorite works. The three of us continued to talk, until she started slipping out of consciousness. She died.
My wonderful companion, my comrade, my lover, my Queen, my Bride ceased to exist.
Copyright South Branch Publishing. All