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After decision made, time for Lee Hawkins’ slow goodbye to friends, family



Last modified: Wednesday, September 24, 2014
Lee Hawkins never had a bucket list. She felt she’d been living life the way she wanted. But in the weeks before she would undertake her plan to bring about her death by not taking in food or water, there were still some simple pleasures to indulge.

Her friend Janet Spongberg brought her to Puffer’s Pond in Amherst, which she’d never seen but always wanted to. Her daughter Becky brought her to Friendly’s for lunch, something she and her late husband Roger had enjoyed. Her son Jerry picked up Lee’s best friend, Grace Ilchuk, from her summer cottage in Sturbridge, driving her back to Lee’s Northampton home to spend the night so the two friends could visit.

There were other items on her list, including updating her will, calling out-of-town friends to say goodbye, writing letters her children would read after she died. As for figuring out what to do with her cat, Bapu, she left that decision to her children.

On July 14, Lee and daughters Sue and Becky met with Dr. Jeffrey Zesiger a second time. Once again, when the physician asked Lee to rate her general sense of well-being, she said “10.” But when pressed for details, she said though she could get to sleep, she always awoke in discomfort and pain. She tried taking morphine drops, but they provided no relief.

By this meeting, two weeks after their first, Lee had already begun receiving hospice services. Signing up with the VNA & Hospice of Cooley Dickinson brought forth a team of helpers: A chaplain sat with her and played guitar. Nurses came to take her vital signs and make sure she was comfortable. A social worker came to sit and talk. An occupational therapist looked for ways to make the shower safer. Movers delivered a hospital bed and an automated chair that slowly moved until it had tipped Lee all the way up to standing, and later took her back to a reclining position.

Zesiger, a palliative care specialist, reported that he’d spoken with her primary care doctor, who was well acquainted with Lee’s ideas. Over the years, she had informed him that if the time seemed right, she might undertake what she termed a “planned death.” At 90, Lee had decided the time was at hand, and her plan was to stop eating and drinking — a method known as VSED, which stands for voluntarily stopping eating and drinking.

Zesiger told Lee that he’d met with the Cooley Dickinson Hospital ethics committee, which had discussed Lee’s case vigorously. Some members voiced objections and concerns. They had questions for Zesiger to bring back to her: Was she depressed? Would she be willing to see a psychiatrist to check out her emotional health? Lee said she was not depressed in the least, but that she would be willing to see a psychiatrist.

What about Lee’s son, Jerry, whom Zesiger hadn’t met — was he on board with his mother’s plan, or might he later object? Lee and her daughters assured Zesiger that Jerry, like his sisters, believed wholeheartedly that Lee had the right to make this choice.

Did she have any religious beliefs that might conflict with her plans? No, Lee said. While she regularly attended church, Lee did not believe in an afterlife — or that God would disapprove of her plan.

The ethics team wondered about Lee’s diminishing ability to care for herself. They asked if she might scrap her plans to end her life if she was matched up with help — specifically a chimpanzee trained to help disabled people. At this question, Lee and her daughters laughed uproariously, and Lee spit out, “If you give me a chimpanzee, I might change my mind!”

Later, Zesiger would say that this was actually a serious proposal, although nobody really thought Lee would want to pursue it. If she had, they would have had to get busy with some research.

In all seriousness, though, Lee said she had been starting to worry over the previous two weeks about whether she was safe alone in her home. “I just wonder if I can last through the next month and a half to be able to live the way I am now,” she said.

Zesiger agreed. “My impression is your joints and your muscles are failing you,” he said.

“Me too,” Lee said emphatically.

Her daughters said they believed the time had come for Lee to stay out of the kitchen. While all three Hawkins children were prepared to be with their mother full-time during the dying process, they were not able yet to leave their lives entirely — they had jobs to take leave from, gardens and pets to make arrangements for, projects to wind down for an extended stay away. A call went out to Lee’s friends at the Unitarian Society requesting dinners so she would no longer need to cook. Already, a helper hired from Lathrop was making her breakfast, and they felt the helper could also set out lunch.

Circling back to the question of Lee’s mental state, Zesiger said that Lee could meet with a hospice social worker in lieu of the requested session with a psychiatrist.

Zesiger said it seemed time to call on hospice services to help the family with some of the practical problems they faced, like bringing the occupational therapist in for a safety assessment. As for where she might die, Lee said she’d been thinking she might want to go to the Fisher House, an inpatient hospice facility in Amherst, believing that might make it easier for everyone involved. Zesiger said that was her choice, and that she could use the CDH hospice services at her home until she opted to go to the Fisher House.

Zesiger wrapped up the meeting by saying now was the time to line up as much help as possible for Lee, with the goal of keeping her safe en route to the kind of death she envisioned.

With this, he held two hands up with crossed fingers. “With all alacrity, this is the week for making lots of plans,” he said. He suggested Lee might even now set a date for when she intended to stop eating and drinking. Zesiger said goodbye to Lee, Becky and Sue, saying he might not see them again. They were in hospice care now, he said, and would require his help only if they needed to consult. He hugged each of them.

Friends step up

Within a matter of days, Lee’s friends from the Unitarian Society had signed up to bring her meals through early August, when her children planned to come to stay. She had decided it would be somewhere around then that she would stop eating and drinking.

Meanwhile, word of Lee’s plans had begun to get around enough so that regularly at Sunday services, friends approached her to say goodbye. The goodbyes picked up steam with the meal train. When people brought her dinners, they stayed to visit, and Lee, always a social person, loved these conversations.

Toward the end of July, she began mulling the idea of hosting a social gathering. It would be a time to visit with friends, a chance for them to ask any questions they had.

Her daughters had mixed feelings about such an event. They worried people might feel uncomfortable, and hadn’t she been saying goodbye to people already? Their mother was a teacher at heart — was this a way to offer a teaching moment about a matter she held strong feelings about?

But for Lee, it was simpler than that. She just liked being with people she cared about. In the end, Lee decided to host an ice cream social, inviting a moderate number, leaving out her closest friends and others with whom she’d had time already. She hoped nobody felt left out.

On Aug. 2, Lee sat on the brown leather recliner hospice movers had delivered to her living room. She wore a purple ribbed turtleneck — even in summer, she was always cold — black pants, matching silver earrings and necklace, comfortable shoes. She was sucking hard candy purchased by her son. Though she hadn’t yet stopped eating and drinking, she was experiencing severe dry mouth, to the point that her lips would get stuck on her teeth. She found out that as people age, salivary glands can slow down. Water didn’t help much, it turned out, but hard candy tended to activate the salivary glands and bring some relief.

Sue was away on business, but Becky and Jerry were there for the party. They spread fixings for root beer floats — Lee’s favorite — and ice cream sundaes out on the table. Lee sat in her recliner as people took turns sitting on either side of her. Over the course of three hours, about 20 visitors stopped by, their arrivals spaced out to allow Lee to have quiet conversations with one or two at a time. One of those conversations was with a longtime friend of Lee’s, Addison Cate, who was 94. They sat together, heads nearly touching, holding hands while they talked. The mood was upbeat, and the party, it turned out, was everything Lee hoped it would be.

Preparing to let go

The next day, Lee talked about the difficulty of letting go of a life she had thoroughly enjoyed — and one she was enjoying still. “I have an article I’m reading in The New Yorker and I say I can’t die before I read it all because I need to know how it ends,” she said. And then she laughed and added: “And I’m a slow reader!”

She reflected on the time she had recently been spending with people. She liked the deliberate way she was going about this business of dying.

“The conversations have been wonderful and I think what I would have missed — a lot of us say ‘I wish I could die in my sleep,’ but I would have missed so much,” she said. Not for the first time, Hawkins put her two hands together, linked by her fingers, and said this is what she felt like — beyond the caterpillar, in the chrysalis, not yet a butterfly. It’s a funny place to be, she said.

Once an avid daily watcher of the PBS News Hour and a woman who read the Gazette front to back, Lee had begun to pull away from the news. She wasn’t sure if it was because hearing was so difficult, because reading was getting harder, or possibly that she was starting to lose interest in this world. It was a little freeing, she said. For so long, she had felt a great sense of responsibility to help try to fix the problems of the world.

“I’m shedding all responsibility, giving it all to you,” she said to this reporter.

By this point, Lee and her daughters had decided she would not go to the Fisher House, feeling it would be most comfortable for Lee to remain at home to the end. There, her children could take up residence, helping her as she needed it, visiting with her and spelling each other when they needed breaks.

A few days after the ice cream social, Lee told her daughters she thought she’d stop eating and drinking on Monday, Aug. 11. Then she received a telephone call from a teenage friend, a young woman who’d moved out of the area, but who had been attached to Lee. She wanted to come visit, but couldn’t make it until Tuesday, Aug. 12. At that point, Lee had decided she would have no more visitors once she’d stopped eating and drinking, so she told her young friend a visit wouldn’t work out unless she could come sooner. When the girl told her she could not, Lee decided to push the date back.

“I am a procrastinator,” she said later.

A couple of other matters cropped up that week to delay Lee’s plans. Her grandchildren visited, prompting a final family dinner Aug. 15 — certainly worth waiting for. She had a small matter in her will she wanted to change, so she made an appointment with her lawyer.

Meanwhile, the goodbyes unfolded. The morning helper who came most frequently had recently said: “I just want to tell you that you have changed for the good my thinking about life and death.” Lee continued to say she was not frightened by what was ahead. She did not believe in an afterlife, and this factored into her conversations with people. When she said goodbye to friends, she did not say she would miss them, because for her that did not feel true. What she said was this: “I hope that in your memories I will have a warm spot because that’s how I’ll be here, in anything you will remember of me,” she said. “What people remember of me is my afterlife.”

Despite the delays in her decision to stop eating and drinking, there were signs the time was coming nearer. She finished the New Yorker article she’d been reading, and decided not to start another.

Coming tomorrow: The dying process.

Laurie Loisel can be reached at lloisel@gazettenet.com