Prisoners Learning Compassion Caring for Fellow Prisoners with Alzheimer’s and Dementia

New York Times February 25, 2012

Life, With Dementia

By PAM BELLUCK

SAN LUIS OBISPO, Calif. — Secel Montgomery Sr. stabbed a woman in the stomach, chest and throat so fiercely that he lost count of the wounds he inflicted. In the nearly 25 years he has been serving a life sentence, he has gotten into fights, threatened a prison official and been caught with marijuana.

Despite that, he has recently been entrusted with an extraordinary responsibility. He and other convicted killers at the California Men’s Colony help care for prisoners with Alzheimer’s disease and other types of dementia, assisting ailing inmates with the most intimate tasks: showering, shaving, applying deodorant, even changing adult diapers.

Their growing roster of patients includes Joaquin Cruz, a convicted killer who is now so addled that he thinks he sees his brother in the water of a toilet, and Walter Gregory, whose short-term memory is ebbing even as he vividly recalls his crime: stabbing and mutilating his girlfriend with a switchblade.

“I cut her eyes out, too,” Mr. Gregory declared recently.

Dementia in prison is an underreported but fast-growing phenomenon, one that many prisons are desperately unprepared to handle. It is an unforeseen consequence of get-tough-on-crime policies — long sentences that have created a large population of aging prisoners. About 10 percent of the 1.6 million inmates in America’s prisons are serving life sentences; another 11 percent are serving over 20 years.

And more older people are being sent to prison. In 2010, 9,560 people 55 and older were sentenced, more than twice as many as in 1995. In that same period, inmates 55 and older almost quadrupled, to nearly 125,000, a Human Rights Watch report found.

While no one has counted cognitively impaired inmates, experts say that prisoners appear more prone to dementia than the general population because they often have more risk factors: limited education, hypertension, diabetes, smoking, depression, substance abuse, even head injuries from fights and other violence.

Many states consider over-50 prisoners elderly, saying they age up to 15 years faster.

With many prisons already overcrowded and understaffed, inmates with dementia present an especially difficult challenge. They are expensive — medical costs for older inmates range from three to nine times as much as those for younger inmates. They must be protected from predatory prisoners. And because dementia makes them paranoid or confused, feelings exacerbated by the confines of prison, some attack staff members or other inmates, or unwittingly provoke fights by wandering into someone else’s cell.

“The dementia population is going to grow tremendously,” says Ronald H. Aday, a sociologist and the author of “Aging Prisoners: Crisis in American Corrections.” “How are we going to take care of them?”

Some prison systems are confronting that now. Many would like to transfer demented inmates to nursing homes, but their often-violent crimes make states reluctant to parole them and nursing homes reluctant to take them.

New York has taken the top-dollar route, establishing a separate unit for cognitively impaired inmates and using professional caregivers, at a cost of about $93,000 per bed annually, compared with $41,000 in the general prison population. Pennsylvania and other states are giving mental health workers special dementia training.

But some struggling prison systems, including those in Louisiana and California, are taking a less expensive but potentially riskier approach. They are training prisoners to handle many of the demented inmates’ daily needs.

“Yeah, they did something horrible to end up here,” said Cheryl Steed, a psychologist at the California Men’s Colony, where prisoners who help inmates with dementia are called Gold Coats because their yellow jackets contrast with the standard-issue blue. But without them, she said, “we wouldn’t be able to care for our dementia patients very well.”

After escorting Joaquin Cruz to an appointment, James Evers, a Gold Coat, was returning him to their adobe-colored cellblock when they encountered corrections officers strip-searching inmates for missing tools.

Mr. Cruz, 60, who barely recalls that he is in prison for killing someone who sold him fake cocaine, grew confused and resistant when guards tried searching him. “He has Alzheimer’s,” Mr. Evers managed to explain. “It’s not that he’s refusing to do what you’re asking.”

At the prison, shadowed by seacoast mountains, Gold Coats are paid $50 a month and have better knowledge of impaired prisoners’ conditions than many prison guards. Gold Coats, trained by the Alzheimer’s Association and given thick manuals on dementia, were the first to notice when Mr. Cruz began putting his boots on the wrong feet and “started pulling down his pants and going to the bathroom wherever he was,” said Phillip Burdick, a Gold Coat who is serving a life sentence for beating a man to death with a hammer.

Gold Coats report these changes, often at weekly support group meetings with Dr. Steed. They identify “different tricks and strategies to get guys to do what they need to do,” she said.

Before the program was started in 2009, demented inmates frequently caused fights, hitting those they considered threatening or disturbing other prisoners by encroaching on their turf. “The whole atmosphere was hostile,” said Bettina Hodel, a psychologist who started the program and once narrowly avoided being struck herself. Now, Gold Coats absorb much of that behavior.

“I been swung at, got a big fat lip, and my glasses have been broken,” said Ramon Cañas, a Gold Coat who killed a hitchhiker who stole his car. He said Gold Coats — there are currently six of them for about 40 inmates — often wear surgical gloves because they are exposed to “a lot of body fluids.”

Protecting the Vulnerable

But they also protect demented inmates from prisoners who try assaulting, abusing or robbing them. When Steven Berry, a Gold Coat, caught two inmates picking a demented prisoner’s pockets, he barreled toward them. “Got the stuff back,” reported Mr. Berry, a former Navy signalman who killed his sister-in-law and tried to kill his wife.

Gold Coats get harassed and called snitches for seeming to side with prison officials and because of the perks they receive. In the dining hall, to help dementia patients who, as Mr. Burdick says, “start forgetting basic things like what is a spork for,” Gold Coats sit with them at special “slow eater” tables, where meals are allowed to stretch beyond the usual 10 to 12 minutes.

When a prisoner tried stealing a patient’s dessert, Mr. Montgomery, one of the Gold Coats, snarled, “You got to give him his cookie back.”

“Who are you, the PO-lice?” the inmate barked. Mr. Montgomery retorted, “Yes, I’m the PO-lice!”

More inmates have dementia than prison officials realize, experts say. Prison routines can mask symptoms like forgetfulness. Corrections officers are used to punishing aggressive inmates, not evaluating them for Alzheimer’s.

“Not responding to questions appropriately, being belligerent — it’s just considered bad behavior,” said Sharen Barboza, director of clinical operations for MHM Services, a prison mental health provider that trains prison officials.

New York’s Unit for the Cognitively Impaired, begun five years ago, has so far cared for 84 inmates, but “there’s a number of people in the system that we really haven’t tapped,” said Paul Kleinman, the program’s psychologist. “They’re not being identified properly.”

Alzheimer’s currently affects 5.4 million Americans, a number expected to double by 2040. Experts believe that Alzheimer’s disease in prisons could grow two or three times as fast, said John Wilson, senior clinical operations specialist for MHM, because “protective factors that might mitigate developing dementia are slim to none in prison — things like complex jobs, rich social environment, leisure activities.”

Realizing that California, with nearly 13,000 inmates 55 and older, could not adequately care for demented prisoners, Dr. Hodel, when she was starting the Gold Coat program, asked the regional chapter of the Alzheimer’s Association to train inmates to help. The chapter’s area director, Sara Bartlett, worried that she and Arlene Stepputat, then the program director, would not be safe as “women in a man’s prison.” She doubted whether violent felons could provide sensitive care.

Both women were surprised that inmates seemed more receptive, with less-complicated emotional ties to the patients than many of the people they trained to care for relatives at home. “They were much easier to work with,” Ms. Stepputat said.

Heriberto G. Sanchez, chief psychologist of the California Men’s Colony, said prisoners “were appreciative that someone from the outside world thought they could do this.” One wrote in an evaluation, “Thank you for allowing me to feel human.”

The prison requires that Gold Coats have “a clean behavior record for about 5 to 10 years,” Dr. Steed said. So far, only one Gold Coat has been removed, because “he had problems” with dementia patients’ messy eating and other behaviors, Dr. Hodel said.

For inmates, the job has attractions. It pays better than other prison work and polishes a prisoner’s record.

Two Gold Coats have received parole.

One of them, Shawn Henderson, who got 25 years to life for a 1985 double murder and was twice denied parole, was released last February. Doing a job where “you get spit on, feces thrown on you, urine on you, you get cursed out” helped teach him to cope outside prison, said Mr. Henderson, 46. “Now when I come into an encounter like that on the street, I can be a lot more compassionate,” he said. “And I don’t look at telling authorities as snitching anymore.”

Gold Coats conduct exercise classes and run meetings designed to stimulate memory and lessen disorientation. They escort inmates to doctors, acting as their intermediaries.

And they often need to be deft. One 73-year-old inmate stands by a gate most mornings, waiting for his long-dead mother to pick him up. Sometimes he refuses to shower, afraid of missing her. Mr. Evers coaxes him inside, telling him that his mother “wants you to shower before she gets here.”

More subtlety is required for Mr. Gregory, 71, who is serving a life sentence for brutalizing his girlfriend with a switchblade — throwing her body parts in the trash and getting caught, he said, when “I went right back to the room that I killed her in and had sex with another” woman. He does not believe he has dementia, but his gradually accumulating symptoms include breaking a mop over an inmate’s head and writing to outside agencies under the delusion that he will be granted parole.

To assist Mr. Gregory, Samuel Baxter, a Gold Coat who fatally shot a co-worker, firing six times, gently reminds him about bed making and schedules. “You have to allow Mr. Gregory to come to you,” Mr. Baxter said.

There are limits to what Gold Coats can do. They can file patients’ fingernails, for instance, but not clip them because that constitutes a professional caregiving responsibility that cannot legally be delegated to inmates. And there are indignities, like cleaning up after inmates who urinate on the floor.

“A year ago,” Mr. Baxter said, “I couldn’t have said, ‘You know what man, I’m going to go help this grown man get in the shower,’ ” and “get in there and help these guys wash theirself off.”

Gold Coats say they are moved by the work. “I’m a person who was broken,” said Mr. Burdick, who during 35 years in prison lost a wife to AIDS and a 16-year-old daughter to suicide. Dementia patients often “don’t even say thank you,” he said, but “they just pat me like that and I know what that means.”

Mr. Cañas said: “I didn’t have any feelings about other people. I mean, in that way, I was a predator.” Now, he said, “I’m a protector.”

Still, the Gold Coats have not figured out how to help Leon Baham.

When Mr. Baham, 71, received a dementia diagnosis a year ago, a psychiatrist, Dr. Russell Marks, noted that he pined for his wife “almost as though at moments he didn’t realize” that his crime had been “murdering the woman he was tearful about.”

In a recent interview, Mr. Baham recalled the murder hazily: “Blood everywhere. She said, ‘Sweetheart.’ ”

He has repeatedly been placed in the crisis center, once after “he urinated on the floor, he was banging his head on the cage, he needed a spit mask to prevent his spitting on others,” and he was “threatening to kill persons that he believed stole his watch,” Dr. Marks said.

After trying to enter the wrong cell, he told Dr. Steed, “I’m going to kill myself,” adding, “I don’t want to live this way.”

He was sent to a psychiatric hospital, returning less depressed. But he often sits confused in the yard. “I forget why I was going out there,” Mr. Baham said. “I’m slipping a little bit.”

Still, he resists the Gold Coats’ help and believes that he would have to pay them. Oblique assistance, like Mr. Burdick bringing him a jacket, is all he accepts so far.

“I don’t need them, you know,” Mr. Baham said.

‘I Was a Monster’

The compassion Secel Montgomery is required to show in his job as a Gold Coat was nowhere to be seen in the killing he committed in 1987. He wanted money for alcohol, and when his former sister-in-law refused, “I knocked her unconscious, tied her up and stabbed her.” Then he washed his hands and called his wife for a ride.

He grabbed things that had his fingerprints on them, but left his infant nephew there alone. “I figured that’s kidnapping,” he explained.

Mr. Montgomery, sentenced to 26 years to life, spent 17 years in a high-security prison for “disobeying orders,” he said. He made contraband alcohol called “pruno.”

Only in 2000, after Mr. Montgomery, 47, was found with marijuana, accused of threatening a prison official and locked in the “hole,” did he decide to change. “I was a monster,” he said.

Families of demented inmates seem unperturbed that prisoners like Mr. Montgomery now have so much responsibility. Laura Eklund, Mr. Cruz’s niece, said prison officials have asked if his relatives wanted him paroled, but the family has declined. “To be honest, the care he’s receiving in prison, we could not match,” she said.

When Mr. Cruz spies his own reflection, he often believes it is his brother Sergio. To keep him from getting agitated, his cell mirror has been covered with tape. But now when he looks into a toilet, he calls: “Hey, my brother, he’s down there. I can’t get him out.”

Mr. Montgomery said he tries to reassure Mr. Cruz, but if Mr. Cruz is locked in his cell, Mr. Montgomery — still a prisoner, after all — cannot enter even if he is allowed out of his own cell. He will call to Mr. Cruz through a tiny window in the thick metal door. “All I can do is say, ‘Cruz, come here, come here, come here,’ but he’ll stand there,” staring helplessly into the toilet and agonizing. “ ‘See, see, look, see.’ ”

Inside View

Interview with Fleet Maull by Marty Moss-Coane

Fleet W. Maull: When I arrived here in December, 1985, I was immediately struck by the amount of suffering. Out in the yard and in the halls you see people in wheels chairs. You see people using canes, walkers and crutches, people who are obviously emaciated from cancer and other illnesses. Even though I was overwhelmed by being sentenced to 25 years in prison, I was still struck by that sight. It was [actually] helpful for me to realize that a lot of people had it much worse than I. It really moved me, and I wanted to find some way to help. Also, at that time the AIDS epidemic was just coming to light, and among the prisoner population, people were very upset and scared. Prison administrators were trying to figure out how to deal with their HIV-positive inmates.

Originally they were isolating AIDS patients in a special lock-down unit, more to protect the patients than for any other reason. There was fear of reprisals from the other inmates, who weren’t thinking very clearly and hadn’t been educated about the disease.

Marty Moss-Coane: How did you become interested in hospice work?

Fleet W. Maull: When I arrived here in December, 1985, I was immediately struck by the amount of suffering. Out in the yard and in the halls you see people in wheels chairs. You see people using canes, walkers and crutches, people who are obviously emaciated from cancer and other illnesses. Even though I was overwhelmed by being sentenced to 25 years in prison, I was still struck by that sight. It was [actually] helpful for me to realize that a lot of people had it much worse than I. It really moved me, and I wanted to find some way to help. Also, at that time the AIDS epidemic was just coming to light, and among the prisoner population, people were very upset and scared. Prison administrators were trying to figure out how to deal with their HIV-positive inmates.
Originally they were isolating AIDS patients in a special lock-down unit, more to protect the patients than for any other reason. There was fear of reprisals from the other inmates, who weren’t thinking very clearly and hadn’t been educated about the disease.
I was working with a service organization, showing movies in hospital wards, including that lock-down unit. I was meeting these men and became concerned about their plight, so I started writing to various AIDS organizations for information to see if I could somehow be of help in here.

Fleet Maull at a Hospice team meeting

M: How did you go about trying to create a humane environment for the dying and the sick inside of a prison?
F: Well, the program here [the Springfield prison hospice] actually began with the inspiration of another prisoner, who was a paraplegic patient.
He was living on the hospital ward and got to know several patients who were dying, one was dying of cancer and another of AIDS. He befriended them, got very close to them and stayed with them through their deaths. He saw what a tremendous need there was: these men were basically dying alone.

He felt there was something other people could do, so he started talking to the prison administration about [a hospice program] and I offered to get involved. We began training in 1987, and in January of 1988 we started seeing patients. To begin with, we just try to be a friend. Often you become a surrogate family member, just being there so the patient knows that someone cares. We can’t change the physical layout of the prison hospital; we can’t immediately change the typical attitudes that exist in a prison. But we can be a friend, so they know someone there cares about them. That’s really what the hospice was to begin with: just to be there for the person. It has evolved into more than that now, with more nursing and medical staff involvement.

M: Do you think a dying inmate wants anything different from someone else on their death bed?
F: What a dying inmate wants is not to be dying in prison. He wants out. Dying in prison is, in some sense, the ultimate mark of failure on your life. The greatest hope [for dying inmates] is to survive their illness until they finish their sentence, or to receive a compassionate early release, which happens in a few cases. They want to be cured, or let out to die. They don’t want to die in prison.

M: Do you find that people want to confess things to you and share secrets of their life?

F: In some cases. First, they don’t want to be alone, and many don’t want to die alone, but a lot of prisoners have a strongly developed ethic that you don’t talk about your business with anyone, and you don’t talk about anyone else’s business. On the other hand, some do have the need to share. They want someone to talk to, and they start sharing all of their life with you. There are others you’ll spend months with, and find out very little about them. [Occasionally] someone will want to get some things off their chests that they’ve never told to anyone. We’re trained to be ready for that and try skillfully to be there for them in a way that helps them feel comfortable.

M: Is it hard to sit with someone and not talk? When friends of mine have been ill, some even near death, I myself feel the need to fill up the time with conversation, and sometimes that’s not what they want.

F: It is a difficult thing to learn, but if you are able to just be there for them when they’ve made it clear they don’t want to talk…they might even face towards the wall. You wonder, maybe they want you to leave; you might actually ask them. But, if you’ve got to know them better, you may realize, “No, I’m not going to ask that because I’m not picking up that signal; I would know if he wanted me to leave.”
So you just sit with them in silence maybe for a half hour or longer. You find that you can really settle into a very comfortable, peaceful place with them. This may be the one time they’re able to relax. Some patients, towards the end of their illness, are so afraid of dying, and dying alone, that they can’t sleep. They’re afraid they’ll die in their sleep. If you’re able to sit with them, sometimes they’ll use that time just to sleep. They can finally relax because they know that their friend is sitting there with them. And that’s one of the things that we emphasize in our training with the hospice volunteers here.

M: Have you been with someone at their death and held their hand and been with them as they died?


F: Yes, a number of times. It’s a very profound, humbling experience.
M: Can you actually see life leave them?
F: That’s something I’ve thought quite deeply about. A few times I‰ve felt that I was witnessing that transition. But more often, even though I‰m right there watching, they take that last breath and suddenly there’s no one there. The finality of that is very, very powerful. Here’s this person who’s just skin and bones, lying in front of you, but obviously there’s life left. Sometimes, as the body diminishes and wastes away, you become more aware of the being which somehow seems larger than what’s left of the body. There’s this life, this being there; then suddenly it’s just gone.

M: So has hospice work made you think about your own life and death?

F: Yes, quite a bit. It puts you very much in touch with your own mortality. Being here in prison and working with men your own age who are dying of cancer or AIDS, you realize it could happen to you, at any time. That’s pretty scary. You could suddenly have a pain somewhere, or feel sick, and go to a doctor. They run a test and discover you’ve got cancer. And maybe you’re not going to get out of prison, either.
I had one patient, an AIDS patient. We’d actually become friends previously through the meditation group that I lead here. Later, when he became very ill, I was with him as a hospice volunteer for six months through tremendous, tremendous suffering. It was just horrible. We had a lot of similarities in our backgrounds, and I could identify with him very clearly. We’d both been involved in some drug smuggling and addiction, and he had a son the same age as mine. It was very hard for me to remain objective as I was working with him. A lot of what he was dealing with was the shame and the grief and the sadness over what he’d done to his son and daughter, and the legacy he was leaving them. As he told me things, I would be flooded with images of what I’d done with my own life and to my own son. It was very hard for me to stay focused and be there for him. This work is very powerful in that way. It puts you in touch with a lot. That’s why I feel very fortunate to have a contemplative practice [meditation discipline] to help me deal with and process all that.
In terms of rehabilitation, I think some combination of a contemplative practice and service, helping others, is the most powerful thing we can do. It would be good if we could offer that opportunity to more prisoners. Helping others is the most powerful thing we can do to help ourselves.

In 1991, Fleet founded the National Prison Hospice Association (NPHA).