The End of Life’s Journey

By Brie Quinby

Virginia Burt, well, to know her was to love her, laughs Marilyn Papert, her group home coordinator. She was a lady. She always wore her skirts just so, always liked to have her hair done. She never wore pants. And she was feisty; she’d tell you where to go and what to do. Her favorite place was Cape Cod. Virginia was diagnosed with cancer last spring and died this past June at the age of 81.

Ricky Devine was gentle and sweet - and stubborn; he wasn’t a Taurus for nothing, says his mother, Doris Devine. He loved wrestling, he loved Riverdance, he loved his job filling orders at Koppelmann’s. And he was Mr. Camp Horizons. He lived in an apartment with his roommate, Dennis. Ricky died this past spring after heart surgery. He was in his forties.

Virginia Schaffer was known for her wisecracks, reports her mother, Bea Schaffer. A sense of humor and of determination were also special "Virginia" characteristics. She was a plugger; she loved to go to work and to know that she was out and semi-independent. Virginia died in April 1997 of Alzheimer’s; she was in her early fifties.

These people were all members of HARC’s community, and their deaths have left holes in the lives of the people with whom they worked and lived. The death, or impending death, of any person within the HARC community - whether a client, a family member, a caregiver - raises all sorts of issues. Many are questions shared by members of any community: How much should you tell a person you’d like to spare pain? How much knowledge is too much? How can people be helped through the grieving process? But many are issues that may be particular to HARC’s clients: What does death mean to a person with mental retardation? What do people with mental retardation need to know about death and dying? And how will they cope with grieving?

Once upon a time, these questions might not have seemed as pressing, but since the early 1980s, when state institutions such as Mansfield Training School closed, people with mental retardation have become increasingly part of the community at large. HARC’s day programs are bustling with activities with 150 people having work assignments at 30 different job sites in the Hartford area. "People have rejoined the community and are living in a much more inclusive fashion now," notes Stephen Becker, HARC’s President/CEO. HARC’s clients have mothers, fathers, sisters, brothers, friends, co-workers, and support staff: some live with their families, some live in apartments with roommates, some in group home families, where closeness, companionship and, yes, disagreements happen just as they typically do in "blood" families. "Because of these relationships, we have a new frontier to help people through; because lives are now so rich, we have loss to deal with," says Dr. Becker.

Death and grieving are not new to HARC. But medical advances mean that its clients - and their families and friends - are living longer; whereas once most people with mental retardation might have long predeceased their siblings and parents that is often no longer the case. Faced with a population where 25 percent of the clients are aging, defined by Dr. Becker as "when vocational options are no longer part of their own vision, which usually happens when they’re in their sixties," means that death and mourning are topics now confronting the HARC community.

People who are dying and people who are grieving share an emotional stage. The person who is dying may have medical issues to contend with, but the process of coming to terms with death is remarkably like the steps taken during mourning. In her groundbreaking book On Death and Dying (Macmillan Publishing, Co., Inc., 1969), psychiatrist Elisabeth Kubler-Ross outlines five phases of emotion that a dying person usually contends with: denial (the test results must have been wrong), anger (why me, why not that bum down the block?), bargaining (OK, but not until I see my daughter married), depression (the realization of loss, both immediate and future) and, finally, acceptance (the sense that the struggle is over).

Grief follows the same path. The stages of grieving, though, usually lag behind the stages of dying. A dying person may have reached the acceptance stage while his/her friends and family are still angry or bargaining. Or, if the death has been sudden, mourning may be delayed by the rituals of burial and the other keeping-busy events that happen when someone dies. Virginia Burt’s story illustrates some of these points, as well as some of the ways HARC clients understand and respond to dying and death.

Virginia was diagnosed with cancer early in the spring of 2000; her caregivers at Prospect Street were able to bring her home after a six-week hospital stay so she could be with her only family, her housemates and the staff, when she died. "Her fear was that once she went to the hospital, she’d never come home, and that was why we brought her home," says Marilyn Papert, Coordinator of Resident Supports. (Because Virginia had been diagnosed with a terminal type of cancer and because her caregivers and her housemates knew her so well, hospice care was arranged. This solution was arrived at after much discussion among the HARC staff and the residents at her home, and a lot of teamwork among them and the hospice caregivers from McLean in Simsbury. Often people need more medical care than Virginia did, and they remain in the hospital or a convalescent home.)

Did Virginia know she was dying? "We didn’t tell her directly, though not everyone agreed with that strategy," recalls Ms. Papert. "Some people felt she should be told. But she’d tell us. She’d say, ‘I’m going to see my parents soon, but not yet. I’m not ready yet but soon I’m going home.’"

Different situations demand different responses. Dr. Becker believes that answering questions honestly is imperative but that hope should never be taken away. "I have my own feelings as a psychologist about taking people’s hope away when I don’t think it’s necessary. …You have to feel your way because people can accept only so much at a certain time; [but it doesn’t make sense] to have your whole sense of safety pulled because people think you need to know that you might have only thirty days left."

Yet knowing Virginia’s state of health was very important to her housemates, who had agreed to have Virginia at home. "We told them, before Virginia came home, ‘Virginia’s very sick, she’s not going to get better. Do you want her to come home?’ And they all said, ‘Yeah, this is her home,’" says Ms. Papert. For people with mental retardation, death is an abstract idea. Having Virginia at home, where her housemates could be part of her life as it was ending, gave the staff and residents time to talk about some of their concerns about dying and death.

Death is not a subject most of us talk about easily, but Elisabeth Kubler-Ross points out that the more that can be expressed beforehand, the less unbearable life is afterward. Death often comes as a surprise, of course. But when death has not been a taboo subject and talking about it as a natural part of life has been encouraged, people are often better able to understand its ramifications. For those with mental retardation, who often may not have a clear sense of exactly what death is, knowing, for instance, that death is not "a sleep when you don’t wake up" and not a time when you "lose" somebody in the sense at they’ve been misplaced. Stories about beloved animals or discussions of news events can lead to ongoing talks about where death fits into life and the emotions that go with grieving. And knowing about the cycle of life, birth, childhood, adulthood, old age, death - can help put life’s end in some sort of perspective.

In its booklet, Mental Retardation and Grief Following a Death Loss, the Arc, a national organization on mental retardation notes that "Death is a part of life.

If we want to promote as normal a life as possible for people with disabilities, we cannot shield them from the truth." Bea Schaffer, Virginia’s mother, cautions against overprotection; "we often think of these people like children and overprotect, but they’re not children." So while what death is may not be clearly understood, when it does occur, refusing to talk about

it or talking about it euphemistically can lead to confusing and worrying perceptions, such as:

Abandonment: People with mental retardation often see housemates or work peers who get sick disappear into the hospital or nursing homes and never come back. There’s no chance to say good-bye; instead, there’s the feeling of abandonment. They may imagine that the person they loved didn’t love them and has simply gone away.

Bad Things Happen to Good People: If an important person disappears (dies), a person with mental retardation may feel that someone bad took that person away and will be back to get him/her.

I’m Not Important Enough to Know: People with mental retardation are very attuned to how other people feel. If they are not told directly, chances are they will know something is wrong anyway. And if the news isn’t delivered directly, they may become angry, concerned that family and friends think they are not important enough to tell, or sad, sure that they are somehow to blame.

Healing Can’t Happen: People with mental retardation aren’t so different from the rest of us; reweaving the hole left by this absence in their lives can’t begin to happen if they don’t have the chance to talk about their loss and express their emotions. Even if death itself is an incomprehensible notion, that person will be missed and the mourner will still need help in coping.

In the long time that he has been a part of the HARC community, Wayne D. has come to know many housemate residents. Since he has lived at Brentmoor, he has personally known or known about five people who have, in his words, "passed:" Bobby G., Abe Z., George P., Helen M., and Ricky D. "All the deaths have been relatively sudden," notes Susan Gulick, the coordinator for the Brentmoor home. "In two cases, heart attacks occurred right here. When the ambulances arrive, that’s not something you can close off. They know something’s going on."

So how do you tell someone with mental retardation about death? As simply and quickly as possible. "If someone knew the person who died well, I would tell him individually and in private," says Ms. Gulick. "Sometimes we tell the news to the group, but it depends on how well they knew the deceased." Wayne remembers that when George died, "Susan told me he died, he passed away; he died in the hospital, right?" he recalls. "Something happened to his kidney; he’s buried now."

Arc recommends several steps for talking about a death:

Don’t delay. Waiting can cause confusion and hurt.

Choose the setting and your first words with care. Someplace quiet and private and words such as "I have some sad news for you" are always appropriate.

Be truthful and use simple words, not euphemisms. For example, saying "Grandpa died" is better than "We lost Grandpa" for obvious reasons.

Don’t hide your own grief, and share your thoughts and feelings. And be reassuring that you and others are there to help.

But the fact is, there’s no set protocol for grief; every individual and every family handles emotions differently. And sometimes family members are at a loss as to how to incorporate the HARC community into their own mourning processes. Perhaps it is because relatives may not understand just how important their loved one has been to so many people. Some family members are surprised at the number of relationships their loved one has formed! HARC has had instances when the family has had difficulty handling the thought of people with mental retardation attending the funeral and/or the wake. Whether the concern has been about having to help others with emotional control at a time when one’s own feelings are so edgy, or not understanding how strongly those in the HARC family are feeling about the loss, or feeling overwhelmed by the logistics of death, families do sometimes ask that the HARC community not participate. And sometimes that is appropriate.

"There may be times when a person with mental retardation isn’t doing well enough to handle a funeral," says Doreen Dusza, MS LPC, Director of HARC’s Behavioral Health Clinic. "He or she may be worried about issues like who is going to be their caretaker. In that case, I would hope that someone in his or her life would call us for counseling, prior to the death if that’s at all possible."

Alternate ceremonial arrangements may also alleviate some of the uncertainty for HARC’s grieving clients. "For instance, sometimes if you’re not sure our client will react appropriately at a wake, ask the funeral director if a visit can be made before calling hours," notes Dr. Becker. "These rituals are important; they give us something to do, help us through a period of grief. When someone dies and there is no funeral or service for us to attend then we make our own ritual," he explains. "In one case, we went to the group home, everybody held a candle, we sang some songs, we had pictures out of the man who had died and we planted a tree in his memory."

Remembrance ceremonies are often a part of the HARC grieving process, whether people went to the funeral or not. Bea Schaffer has a videotape of the ceremony that took place at the group home where Virginia lived. "In the front yard of the home, they planted a tree in Virginia’s memory," she says. "And those people all knew what was going on - we’re planting a tree so we never forget Virginia."

Mostly, though, HARC’s community does attend the funerals of its members and their families if they want to. Wayne D. remembers all the funerals he’s attended, most recently Ricky’s. "I went to Ricky’s funeral with Susan [Gulick]," he recalls, holding Susan’s hand. "Now he’s buried. I miss him. He was a good man. I still cry in bed, I miss him. Now he’s with his father." (Ricky’s father, Jim, died a few years before Ricky.

Like the rest of us, people with mental retardation grieve in stages, but those steps in the mourning process - denial, anger, bargaining, depression and acceptance - may have a different rhythm than they might for others. Doreen Dusza notes that, "In our society, we unwittingly set up a time frame in our minds about how long someone should be grieving. But no one lives up to a time frame. A year after a death, you may be wondering, ‘How can I talk to someone about this, they’re going to think I should be over it by now.’ And we have to be careful that we don’t do that to the people we support."

Several HARC caregivers noted that a week and sometimes much more may go by before a client begins to really face the fact of death. The funeral is often the first step. A ceremony gives people a chance to say good-bye. When Helen M. died, the Helen who "talked fresh and called me her boyfriend," Wayne, folding his hands together and smiling, remembers "I said a prayer to say good-bye. I pray to God in heaven. Then I put a flower in the cemetery."

The ceremonial solemnity and ritualized acknowledgement of transition that mark the services often help HARC clients fathom that their friends or family are no longer there. For Rosina S., Virginia Burt’s funeral meant, "I went to church, I wore a dress," and, moving her clasped hands from her lap past her upturned face, she says, "Now she’s with the Lord." For Wayne, the funerals he’s attended have meant people get buried "in the cemetery." For others, where a person goes after dying could mean heaven or "whatever was appropriate for their belief system," says Ms. Dusza. "The concept of gone forever brings up the question, Where did they go? I’ve found that it’s very important for people to have the deceased in a place."

Often, though, reactions to a death don’t really begin until a month or more has gone by. By six months, caregivers are seeing their clients experiencing a range of grief stages: denial and "It’s not nice to talk about it;" anger, which may have behavioral concerns; and sadness, sometimes coupled with a sense of responsibility or "I could have done more." (Bargaining is rarely a stage gone through when someone has died suddenly, according to Elisabeth Kubler-Ross in Questions and Answers on Death and Dying (Macmillan Publishing Co., Inc., 1974).

Ms. Dusza explains, "By six months a person is really experiencing the loss; you’re living without the person. Holidays, gatherings, they’re happening without him/her. This happens for all of us, but the people we’re supporting may not be as articulate [about their feelings]."

To provide some help for their clients who are in mourning, this past year HARC offered its first bereavement support group. Doreen Dusza led the eight-week program in which eight people participated. Because a client had recently died, the newly grieving were placed in a group with people who were more removed from the death experience and Ms. Dusza noted the difference. "Typically, the norm is that you don’t have anyone join a bereavement group who has had a loss any more recent than six months ago," she explains. "But these people needed something. And now I know why six months is the norm. People with less than six months really need one-to-one counseling." That service is available at HARC’s Behavioral Health Clinic for clients who need it.

Before the group sessions even began Ms. Dusza met with the individual participants to give each a sense of what would be happening. She also questioned every member about his or her concept of dying, where dying fit in the process of life, when the death occurred and whether he or she had been to a service or burial. When the first group session began, she let all those present know that everyone there had had someone very important pass away. "We went over all the different words you use to express passing so that everyone was on the same page," she adds. "And then everyone got a chance to talk about the person who’d died. And that’s not usually hard; they enjoy being able to talk."

Visual elements help keep the discussion going and make connections among the participants. "I put a paper on the wall and put names on it and point out, ‘These people have had a mother pass away, these people have had a father or a friend,’" she explains. "And then I ask them to bring in pictures. Some don’t want to and that’s fine. But when you’re in a group and people are passing pictures, usually the ones who didn’t bring them regret it and bring them the next week."

In the process of conducting the group, Ms. Dusza found that "sometimes grieving for the recent death brings up unresolved issues around another long-ago death." Caregivers notice this, too. While talking about Virginia Burt, Maureen K. mentioned over and over her sister, JoAnn, who had died in an automobile accident years ago, and Marilyn Papert confirmed that her sister’s death overlays the deaths of Richard and Virginia, the two housemates who have died more recently.

Caregivers and Ms. Dusza say that anger is also a fact of life for bereaved HARC clients, but most can’t articulate the feeling and, instead, act it out through their behavior. "It’s hard for our clients to think about being angry, in the sense that ‘You’re not here for me, things are going to change because of your death,’ notes Ms. Dusza. "There’s not someone there to be mad at. So in the group we try to find out how people show their anger; I might ex-plain that you could end up yelling at someone when, in fact, you’re sad because someone has died."

Dr. Becker expands on this. "The words mad, sad and bad not only sound alike, but have associations that can cause confusion. What happens sometimes is that when our people are sad, it often is associated with them being bad and someone being mad at them. And so you can be crying because you’re sad about something, or you could be crying because you’ve been naughty and been reprimanded. It’s the same crying but the sensation is very different. So if somebody is crying, some of our guys get confused thinking that they are bad rather than sad. And that nobody is actually mad at them."

The group dynamic has also revealed some issues that may be particular to people with mental retardation in a group. For example, "I was struck by how quickly the people in the group could shift their emotions," notes Ms. Dusza. "Someone who’d been feeling very intense a moment ago could now pick up a game. I wondered if it was self-protection."

Also, because she feels that the people HARC supports have a heightened awareness of how to fit in, she sometimes found that people who weren’t initially distressed about the loss of someone they didn’t know particularly well could become quite emotional when they heard another participant expressing his or her grief. The reactions were more than triggered-off emotions; they were a way to fit into the group. "Suddenly, while that person might not have seemed to have any issues, he does now because it’s in the sampling of the people around him," she explains. "And the process be-comes not just a way to access their feelings, it’s saying this is the norm for the group."

To acknowledge the sadness but keep it under rein, Ms. Dusza helps participants tease out the characteristics that had made that person special and asks who else in their lives has those qualities, too. "I want to help them make that transition, pass the baton," she explains. "Because that sense of ‘Oh, I lost all this’ is not the way I want them to leave the group.’"And while a great deal of sadness is expressed, Ms. Dusza ends every session with something positive - a game or tic tac toe - to help clients put themselves together.

Not all HARC clients are comfortable in a bereavement group; some are not ready and others may never be interested. But the group will be scheduled again in the fall. And some of the participants will probably be back. "There’s so much information the first time round," she explains. "With the people we support, repeating issues is very necessary.

Finally, though, Ms. Dusza notes, a bereavement group - or simply being there for a grieving person - provides a variety of ways to stress to HARC clients "the fact that their lives haven’t stopped." By providing a shoulder to cry on and a forum in which pain is acknowledged, talked about and, then, maybe, talked about again, a grieving person can be helped to realize that first, each day is livable and - ultimately - each day is worth living.