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'Can I take control before it takes control of me?': Northampton woman plans how she will die

  • Lee Hawkins organizes her paperwork at her home in Northampton July 11.<br/>JERREY ROBERTS

    Lee Hawkins organizes her paperwork at her home in Northampton July 11.
    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins, left, organizes her paperwork with the help of Susan Fordon, of Hadley, at her home in Northampton July 11.<br/>JERREY ROBERTS

    Lee Hawkins, left, organizes her paperwork with the help of Susan Fordon, of Hadley, at her home in Northampton July 11.
    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins at her home in Northampton June 20.<br/>JERREY ROBERTS

    Lee Hawkins at her home in Northampton June 20.
    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins talks about end of life issues at her home in Northampton June 20.<br/>JERREY ROBERTS

    Lee Hawkins talks about end of life issues at her home in Northampton June 20.
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  • Lee Hawkins, right, talks about end of life issues with her daughter, Susan, and her son, Jerry, at her home in Northampton June 20.<br/>JERREY ROBERTS

    Lee Hawkins, right, talks about end of life issues with her daughter, Susan, and her son, Jerry, at her home in Northampton June 20.
    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins talks about end of life issues as her son, Jerry Hawkins, listens at her home in Northampton June 20.<br/><br/><br/>JERREY ROBERTS

    Lee Hawkins talks about end of life issues as her son, Jerry Hawkins, listens at her home in Northampton June 20.


    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins talks about end of life issues as her son, Jerry Hawkins, listens at her home in Northampton June 20.<br/><br/><br/>JERREY ROBERTS

    Lee Hawkins talks about end of life issues as her son, Jerry Hawkins, listens at her home in Northampton June 20.


    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins, right, talks about end of life issues with her daughter, Susan, and her son, Jeremy, at her home in Northampton June 20.<br/>JERREY ROBERTS

    Lee Hawkins, right, talks about end of life issues with her daughter, Susan, and her son, Jeremy, at her home in Northampton June 20.
    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins talks about end of life issues at her home in Northampton June 20.<br/>JERREY ROBERTS

    Lee Hawkins talks about end of life issues at her home in Northampton June 20.
    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins talks about end of life issues at her home in Northampton June 20.<br/>JERREY ROBERTS

    Lee Hawkins talks about end of life issues at her home in Northampton June 20.
    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins talks about end of life issues at her home in Northampton June 20.<br/>JERREY ROBERTS

    Lee Hawkins talks about end of life issues at her home in Northampton June 20.
    JERREY ROBERTS Purchase photo reprints »

  • Lee Hawkins organizes her paperwork at her home in Northampton July 11.<br/>JERREY ROBERTS
  • Lee Hawkins, left, organizes her paperwork with the help of Susan Fordon, of Hadley, at her home in Northampton July 11.<br/>JERREY ROBERTS
  • Lee Hawkins at her home in Northampton June 20.<br/>JERREY ROBERTS
  • Lee Hawkins talks about end of life issues at her home in Northampton June 20.<br/>JERREY ROBERTS
  • Lee Hawkins, right, talks about end of life issues with her daughter, Susan, and her son, Jerry, at her home in Northampton June 20.<br/>JERREY ROBERTS
  • Lee Hawkins talks about end of life issues as her son, Jerry Hawkins, listens at her home in Northampton June 20.<br/><br/><br/>JERREY ROBERTS
  • Lee Hawkins talks about end of life issues as her son, Jerry Hawkins, listens at her home in Northampton June 20.<br/><br/><br/>JERREY ROBERTS
  • Lee Hawkins, right, talks about end of life issues with her daughter, Susan, and her son, Jeremy, at her home in Northampton June 20.<br/>JERREY ROBERTS
  • Lee Hawkins talks about end of life issues at her home in Northampton June 20.<br/>JERREY ROBERTS
  • Lee Hawkins talks about end of life issues at her home in Northampton June 20.<br/>JERREY ROBERTS
  • Lee Hawkins talks about end of life issues at her home in Northampton June 20.<br/>JERREY ROBERTS

NORTHAMPTON - City resident Eleanor “Lee” Hawkins is sitting at her dining room table with her children, Sue Hawkins, 58, and Jerry Hawkins, 55, early one evening in June, talking about a subject many families find almost too painful to discuss: death.

Hawkins, 89, lives at the Lathrop Communities’ Bridge Road campus. Her three children — Sue, Jerry, and Becky Hawkins, 49 — live in different states, each over an hour’s drive away. Since she was at least in her 50s, she made clear to them — and anyone else who cared to converse on the subject — that she held certain end-of-life bottom lines. For instance, she’d rather die than ever enter a nursing home, even if that meant taking steps to end her life.

So when she talks with her children this summer evening about what she calls her “planned death” — she doesn’t see this as a suicide, exactly — they are not surprised. This is well-worn terrain.

“Because Mom’s always been open about death and growing old, we’ve never had to say, ‘OK, let’s gear up and have the conversation,” said Sue Hawkins, who lives in Vermont.

Of course, they all admit the discussion takes on a different tenor when one is nearing 90, even if there is no illness to complicate things. And to be clear, Hawkins is not sick, but she is very much feeling the effects of aging.

Over the years, Lee Hawkins says, she has considered different methods, including helium. She can’t imagine putting a plastic bag over her head, though, so she rejected that idea. Once someone picked up a book for her at a library book sale about the Hemlock Society. These days, she feels she’s settled on a method that suits her: when she’s ready, she’ll stop eating and drinking.

“That,” she says, “just seems a more gracious way to go.”

Her children understand she wants to have control over the manner and time she will make this happen. They are supportive — to a point.

When Lee Hawkins, for example, volunteers that she likes the idea of being able to plan her death around what she calls the “convenience of the family,” and she almost sounds like she’s planning a family picnic, the exchange with her children illustrates the complexity of the issue.

“I think something in the summer might be good because Becky’s not teaching,” she says. “But then, she has all these wonderful vacations planned.”

Here is where Sue challenges her mother about the whole notion of convenience.

“I don’t want your death chosen around my convenience. It’s never going to be convenient,” she says. “I’m all behind you choosing when you’re going to die and we will cope.”

Lee says, “I personally would like to have time to say goodbye to people.”

Her son Jerry interjects: “I just think you should do it whenever you’re not happy to be here,” he says. But then he adds this qualification, “I really don’t see that happening.”

Lee ponders this thoughtfully, and then says: “So far I can cope with old age, but I’m pretty on the verge of not liking it very much.”

Years of contemplation

For many years, Lee Hawkins has thought a lot about death. Her husband Roger’s in 2004, just three months before he would have turned 95. Those of her friends. Her own.

It’s a subject she’s comfortable with, although she knows her directness might unnerve others.

“It’s a taboo subject and it shouldn’t be,” Hawkins says.

In the beginning, it was an intellectual exercise. She didn’t like the financial toll to society of postponing the inevitable. She couldn’t understand the desire to avoid death almost at all costs.

“We’ve got things twisted in our country instead of seeing death as a natural cycle. There was a time when you just knew it was time to go,” she says.

She thinks more people should die at home, not under the glare of operating room lights, or in a hospital bed, or in a nursing home.

“The whole thing seems to be a bit distorted to me. It’s just not right to spend a whole lifetime’s cost of medical care in the last year of a life. It just doesn’t seem right.”

These days, the topic hits much closer to home.

“At this point, it’s pretty personal,” is how she puts it. “I know one way or the other, it’s going to be very limited time.”

At 89, she says she’s not sure she wants to live much longer, and if her death does not come naturally, she intends to take steps to make it happen on her terms. She plans to do this if she loses what, for her, makes life worth living.

First off, she never wants to live indefinitely in a nursing home. Secondly, she does not want medical intervention if she falls ill — nothing that might prolong her life artificially. Third, she wants social interaction, which must include attending services at the Unitarian Society of Northampton and Florence, where she’s been a member for more than two decades.

If these things become impossible, she intends to stop eating and drinking to bring about what she terms a “planned death.”

According to statistics compiled by the Centers for Disease Control, people 85 and older have the second highest suicide rate of any age group, at 17.6 suicides per 100,000 people. (People 45 to 64 have the highest rate at 18.6 per 100,000.)

Those who work with elders know suicide can be a serious consideration for people approaching the end of life.

While the elderly make up 12.5 percent of the population, they account for 15.7 percent of all suicides, according to the American Association of Suicidology.

Karen Buscemi, a psychiatric nurse practitioner at Mercy Medical Center in Springfield with a specialty in geriatrics, says it is essential to have a psychiatric evaluation done when anyone considers suicide, because they could be suffering from a treatable emotional malady. As for suicide among elders, she’s been watching statistics for a while now, and she’s worried.

“It’s a subset of folks that rarely get diagnosed. We used to say as soon as you have gray hair, you don’t get a psych consult,” Buscemi says. “I think it’s a silent epidemic. I think the baby boomers who are aging are very much used to calling the shots and controlling their destiny. Anything I’ve read over the past 10 years says this is getting worse and worse.”

‘Endgame’

Hawkins, a petite woman with short, wispy, white hair and wire-rimmed glasses, has wrinkles that suggest a lifetime of smiles. When she isn’t smiling, her eyes appear to be.

She depends entirely on her walker now, including around her home for even the shortest trip from one room to another.

She’s engaged in life — and in thoughts about her own mortality — but she does not come across as someone struggling with depression, a point she thinks is important.

“I’m not depressed. I’ve thought about this long before it was proper to feel depressed,” she says.

It’s not lost on Hawkins that her previous bottom line changed not long ago, when she agreed to hire help for a few hours a day, six days a week. Previously she had told her children that was an intervention she found unacceptable.

The helpers, as she calls them, assist her in getting up and dressed, showering, having breakfast and other daily chores. Turns out it’s been a surprisingly easy transition to have these strangers in her home. With a wry smile, she observes what this help has meant. What used to take her four hours is accomplished in about one hour — and sometimes there’s time at the end for a quick game of Anagrams (although she admits she feels funny paying someone to play a game with her).

But she realizes this help is key to living independently.

“That’s my endgame,” she says. “This kind of help, I can no longer get along without it.”

As for timing, that’s fluid. “I’m thinking of it as a race,” she says. “Can I take control before it takes control of me?”

Hawkins, who has no medical diagnosis that would make hospice an option, can imagine herself turning 90, but not turning 91. She is interested in the world around her. She reads the newspaper daily, loves the New Yorker, watches PBS news on television and listens to NPR. Although she is engaged in her church community, and has friends and children who love her, check in with her daily, and visit frequently, she feels aging is about losing things: autonomy, friends, energy, freedom. She doesn’t see why people find it unnatural or wrong, somehow, that an elderly person might choose suicide after living a long, full life.

“It really is a time of giving up so much,” she says, “that giving up a life doesn’t feel like so much more.”

A new life

Eleanor “Lee” Hawkins has lived in her home in the Lathrop Communities’ Bridge Road campus since 1991, when she and her late husband, Roger Hawkins, moved here in their retirement when he was 79 and she was 66. They had raised their three children in Staten Island, N.Y., where Lee was a public school teacher and Roger a shop manager for a company that made blueprints. After retirement, they moved north to be closer to their summer cottage in Sturbridge, and to their children. As longtime Unitarians, they set about finding a congregation to join and a community in which to build a life in retirement.

One Sunday, they visited the Unitarian Society of Northampton and Florence on Main Street, where they felt an immediate kinship. After the service, someone volunteered to show them the Lathrop Communities, still under construction. They put a deposit down on the spot. Once they’d moved here, they quickly became immersed in the community through their participation in the Unitarian Society.

Lee spent a lot of time there, teaching in its religious education program, serving on the board of trustees, as a leader on the social justice committee. In the wider community, she worked on affordable housing issues.

Hawkins says she may have focused on end-of-life issues at a relatively young age because her husband was 13 years older.

Born in 1924, she grew up in Carmel, Calif., and moved east after graduating from the University of California at Berkeley. She met Roger in New York City, where both worked for Travelers Aid, a social service agency. Their courtship involved many off-beat dates that confirmed their intellectual compatibility: they attended progressive political meetings, once went to night court and another time went as observers to an AA meeting. They married in 1950, and lived for five years in a sixth-floor walk-up in lower Manhattan.

After their daughter Sue was born, they moved to Staten Island, where they worried they might feel out of place socially. “We kept saying are we going to find anybody that we can talk to?” They saw a notice that read, “Are you a Unitarian and you don’t know it?” and decided to check out a service at the local Unitarian church. They felt they’d found their people.

The Hawkinses remained in Staten Island, where they raised their children, and Lee embarked on a teaching career that would last 25 years.

Living wills

Not long after Lee and Roger Hawkins moved to Northampton, at Lee’s insistence, they each sat down to write up living wills. This involved answering a series of questions designed to help figure out which end-of-life interventions each would be open to — and which should be avoided.

Lee recalls filling hers out quickly while sitting at the dining room table, knowing she wanted to avoid a lingering death.

“I went down check, check, no I don’t want this, no I don’t want this, down to pain medication, yes,” she recalls.

Roger went into the study, and Lee wondered what was taking him so long. Quite some time later, she says, Roger came into the room with his form filled out. Lee lets out a hearty laugh when she says, “They were the same.”

As it turned out, when Roger’s time came, the living will didn’t need to be pulled out. His death at age 94 was not drawn out. It came during a hospital visit they thought routine. In the obituary, she attributed her husband’s death to pneumonia and “a well-worn body.”

But given how she feels these days, she doesn’t expect — or really want — to live that long.

Again, this is something about which she’s had many conversations with her children and friends.

“Mom has no lack of clarity,” says Sue Hawkins.

“If Lee had not been talking about this for the last 20 years, I would have a different response to it now,” says her friend Janet Spongberg of Northampton. “I would worry that any kind of sudden interest in hastening the end of one’s life would be something that was triggered by not feeling supported, not feeling wanted, feeling disempowered.”

So the subject matter does not alarm her.

“It’s been such a constant refrain, and I think this business of it always being a topic of discussion is what has allowed me to contextualize it as I do,” Spongberg says. “That being said, I hope it won’t happen any time soon.”

While Spongberg, like Hawkins’ children, supports her friend’s right to make choices about the manner of her death, she admits to mixed feelings.

“When you have a friend, you hope that they’re going to feel it’s worth it to stick around,” Spongberg says. “When Lee says this to me, what I ask her is, ‘Lee, are you still enjoying life?’ And the answer has always been yes.”

That is the sort of conversation her children have with her, too.

Sue Hawkins says that when her mother brings up the subject of planning her death, she asks two questions: Are you still happy with your life? Are you feeling content in your days?

So far, her mother’s answer has been yes, although she realizes it might soon change.

Lee Hawkins says she realizes that some people might disapprove of what she intends to do, but for the most part, the only sort of push back she has encountered falls into the category of a little incredulity.

“ ‘But why would you want to do that? Everything is fine,’ ” she says friends and acquaintances sometimes ask her. “Well, yes, but it’s not always going to be fine,” she replies.

Litany of losses

Indeed, Hawkins believes as much as she enjoys her life, aging brings with it tremendous losses. Several years ago, she gave up driving after she nearly had an accident by putting her foot on the gas rather than the brakes.

This was a major change in lifestyle.

“There’s no such thing as just jumping in the car and going someplace because you feel like doing it or you need butter to make something,” she says. “That’s a biggie.”

There are others, products of an aging body. She moves so slowly that everything takes so long. She’s tired all the time, often dozing throughout the day. Nothing tastes quite right. Reading is hard because her eyes get so tired.

In short, old age is not what she expected.

“I thought I would be driving and thinking and doing things sort of the way I always did,” she says. “I never thought I would feel handicapped and I feel handicapped now.”

Also hard, she says, is the way people treat her because she is old. “There are things that I’m interested in that I think people assume I’m not interested in anymore,” she says.

Those close to her are aware of what she’s lost.

“She’s one of the most lively, engaged, vibrant people I know,” Spongberg says. “When she stopped being able to drive, her world got a little too small for her.”

What ‘ready’ means

And then there is the big question of how she will know she’s really ready.

For Hawkins, this changes.

“I kind of think it’s a good time but I’m not ready yet,” she says. She’s thinking about making a list of all the things she wants to do before she dies — not a bucket list, but a practical to-do list. For instance, she wants her papers in order. She wants to write letters to certain people to tell them what they’ve meant to her over the years.

But even in this goal, she struggles with her own limitations.

“Things ought to be in good order so that my kids don’t have to come into the house and say, ‘Well, where did she put this?’ ” Hawkins says. “The trouble is, I don’t really have the energy to do it.”

Hawkins has hired a woman to help her to organize her papers. She’s got folders with the names of each of her children, in which she’s put things she wants to be sure they get.

Among her files is a green hanging file folder that reads “death,” containing clippings from newspapers and magazines about financial planning for the end of life, resources for end-of-life care, examples of memorial service programs, a newsletter about death with dignity, a Gazette supplement on funeral and estate planning, an article titled “What if a parent moves in with you.”

There is also a 2005 New Yorker article about a woman in a coma. On this, she stapled a handwritten note that reads, in part: “I have read this article from beginning to end and want everyone, family, loved ones, lawyers and judges to know that I do not want to live like this. ... I have a feeling based on my current eating habits that if a system of gradually withdrawing food was established, I could starve with relatively little discomfort. ... Don’t tempt me with ice cream or fruit!” The note is signed Eleanor Hawkins and dated March 25, 2006.

For the people around Lee, there seems to be a sense that they want to support her choices even if they might not be the ones they would make.

“Any support that I would offer would be out of respect for Lee and her life. This is not something I take lightly,” Spongberg says. “My wish is that we would get more comfortable living with dying.”

The theoretical, intellectual conversations they’ve long engaged in naturally become a little more provocative as Hawkins ages.

“As I know we’re kind of talking about present rather than future, it does feel uncomfortable,” Sue Hawkins says.

To her mother she says, “When you choose that the time is right, it may be because you’re not enjoying life anymore, and it may be because you broke your hip. Really, this is about you, this is not about us. We’re not going to be happy whenever this happens.”

Her son Jerry says this: “I think you’re ready. I just think there’s a few hundred things you want to do first.”

Related

Response to column about father’s suicide leads reporter to Lee Hawkins’ story

Thursday, February 20, 2014

In March, the Gazette published a column I wrote about my father’s suicide and my family’s subsequent decision to be public about what he did. Many of the responses I received were from people with family members who had committed suicide. Some were from people contemplating doing so, or holding that out as a possibility in their future for reasons … 0

Highland Valley aims to honor elders’ wishes

Thursday, February 20, 2014

NORTHAMPTON — Caseworkers at Highland Valley Elder Services are keenly familiar with the plight of elderly people who find it difficult to remain in their homes but don’t want to enter a nursing home. “For the most part, every elder we meet is wanting to stay out of a nursing home and stay home, or in the setting they choose,” … 0

Jim Harvey: We need to constantly re-examine old truths

Tuesday, September 17, 2013

To the editor: I am writing in response to a recent letter “Disagreeing with philosophy on planned suicide,” which commented on Laurie Loisel’s July 31 story about Lee Hawkins of Northampton. As a retired Christian pastor and as one who is closer to the end of life than the beginning, I was troubled by the writer’s assertion that as a … 1

Jacqueline Haskins Engel: Disagrees with philosophy on planned suicide

Thursday, August 15, 2013

To the editor: I am responding to Laurie Loisel’s interview with Lee Hawkins, “Life and Death” (July 31). Though Ms. Hawkins has every right to make personal decisions about her own life and death, and Ms. Loisel shows her fine writing skills in the telling, I take exception with some of Ms. Hawkin’s philosophy regarding suicide. There also appears to … 3

Margaret Lobenstine: An approach to her end of life

Tuesday, August 6, 2013

To the editor: I was thrilled to read the affirming story about Lee Hawkins approach to life and death. I would just like to add another way of looking at the end of life. So many people say things like, “Well, she still has days she enjoys and events she likes to go to,” as if the only time to … 1

Upcoming forum deals with planning for and discussing death

Saturday, February 22, 2014

NORTHAMPTON – When city resident Nell Lake was 18, her grandmother, then in her late 70s, was told she might have cancer. “She was a strong, independent person who had long expressed an aversion to being in a nursing home,” said Lake, now in her 40s. Rather than end up that way, Lake said her grandmother went into her garage … 0

Video: Forum examines approaches to end of life, dying

Wednesday, June 25, 2014

NORTHAMPTON — WHMP radio host Bob Flaherty opened a community forum Tuesday at JFK Middle School with a difficult question: “Is there such a thing as a good death?” For the next two hours, an expert panel and an overflow audience of nearly 200 local residents tackled that question — and numerous others related to death and dying. Despite the … 0

I want to thank the Gazette, the sponsors and participants for daring to break through the barriers to talking openly about death. Clearly the level of forum attendance indicated the hunger there is for sane conversation about ways not to die AFTER one's time, and ways to prepare for a "good death" whatever that means to one. My hope is for that videos and podcasts can begin to circulate so that those of us not able to attend, can have better access to the spirit of the discussion and use it to prompt our own family discussions. I will be sharing the existing published material with members of my own family.

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