Front Street Weekly; No. 723; Juniper House: In Search of Comfort

Good evening, I'm Gwyneth Gamble Booth. And I'm Jim Swenson. Welcome to this special edition of Front Street Weekly. Tonight, we're going to devote the entire half hour to a personal look at the devastation of AIDS and the emotional changes that its victims go through as they confront the ultimate reality of the disease. Reporter Rod Minott and photographer Steve Gosson show us the courage and concerns of residents of a unique home in Portland for those dying of the disease. We want to caution you: Tonight's program contains material some might find objectionable. [coughing]. Corky, Corky, come here. Come here, Corky. Up, up. Come on. Play dead. All the way. Play dead.

It's morning at the Juniper House. Down. Doin' 'em all over. While bedridden, Wayne Oros has trained Corky, the house dog, to do these tricks. That was real good. Wayne is dying of AIDS. Okay, down. So are the other four residents of Juniper. One more time. Where waking up means having survived another night. Oh your hot chocolate. It's getting warmed up. Is that what you want is your hot chocolate? Okay. You want your coffee? Or you gonna drink milk? I'll drink my milk. Okay. Has your bed been changed? Yes ma'am. From day to day, they struggle to keep what little health and independence they have left. Each patient here is in the mid to later stages of AIDS, a disease that's destroying their body's ability to fight off infections. There is no cure. Death will come slowly, painfully. Any hour, any day, can bring a turn for the worse. Extremely unpredictable, extremely unpredictable. It's one day they'll be doing very well, the next day they'll be unable to walk or unable to feed themselves or unable to move.

They have lost their jobs, their income, their health insurance, and they are now on public assistance. With nowhere else to go, they have come here. Juniper is a place for them to die with dignity. No high-tech life-prolonging measures are used. I'm glad to see you're eating. [inaudible] Juniper house gives these people a home, you know, and love and their- and meet their care needs, you know that in an environment that isn't isolate them and make them feel rejected or dirty or so on. Rejected, like Jerry Coffman, who says his father beat him up because of his homosexuality. Some, like Jerry, have been abandoned by families. Well, I know where my daughter is now, so. Others end up here because friends, families, or lovers can't afford the strain of providing 24 hour care. If there was no Juniper, most here would probably face their final days alone in apartments, hospitals, or maybe even some seedy downtown hotel. All of the patients here are either gay or bisexual men. AIDS, however, is not a gay disease. Juniper opened in May of last year and was the first of its kind in the Northwest. It remains one of only a handful of such care homes in the country. It runs mostly on volunteer power, gets its funding from state and private dollars. As the number of AIDS cases continues to climb, experts say more Junipers will be needed. Care here is as much as two-thirds cheaper than a hospital stay.

[song on tv plays: The Way It Is, by Bruce Hornsby & The Range] Meet some of the residents of Juniper: people like JD, whose crumpled body is now confined to a wheelchair. Several weeks ago, he was walking, his will to live now measured by the simple flicking of a cigarette.

When you're done, you're done. That's it. Wayne is a former businessman and minister. He moved in last summer after friends found him passed out in his apartment. He was living alone. You have all that much that's still [inaudible] and we gave away. AIDS has seized Wayne's body. His muscles have literally melted away from bedrest. He doesn't eat much, has bouts of diarrhea and now weighs only 114 pounds. The way I feel about it is, is that it's affecting my muscles and the muscle tone, but it hasn't stopped me breathing yet. Hasn't destroyed his spirit either. Wayne's outlived one roommate and five other Juniper residents. The fact he is still alive has amazed others in the house. Wayne accepts that he will die and draws much of his strength from the Bible.

Are you at peace? Yes. Yes, I am. And like I say, no matter what happens. If I gasp my last breath at one o'clock today, I'll feel as though I've done what I'm supposed to, and that's it, no more. And so He must have somebody else to replace me and whatever, you know, so I feel I feel happy because then I'll find out what's on the other side. What Juniper offers is comfort, not a cure. Some of that comes in pills dispensed around the clock, painkillers, anti-depressants, antibiotics, and pills to control seizures. I got a funny little pinkish green one, pinkish-gray one and-.

Wayne's pain is so fierce it can knock him out for days. That's the roughest pill I've ever ever taken in my life. I have a very bad digestive system now. The pain is always there always has been right from the beginning. It's just that some days it's more tolerable than others. It's what the pain medication that they're here for. Okay. You want-. I'm gonna want your left arm. Wayne also needs daily shots to control vomiting, a problem partly caused by neurological damage from AIDS. Having AIDS has helped Wayne reunite with his family. For years, his sister wouldn't talk to him. But last fall, she flew out from Michigan to visit. So did his mom and dad. There are nights now, Wayne says, when he wakes up in tears thinking about them, wishing there could be one more visit to say goodbye. I know my mom and my dad and my sister, uh. I know my brothers, my three brothers, they- they care, it's just the grief that they'll be going through, you know, after I'm gone. But I would like to pass. See 'em all too. Excuse me.

He once was a chef in Los Angeles. Now, John, he spends his days lying in bed, no longer able to cook. John has severe dementia. You could mistake it for Alzheimer's, except that John is only 42 years old. The AIDS virus, or some other infection related to the disease, is believed to be in his brain. He came to Juniper last fall after friends noticed odd changes in his behavior. One of them we'll call Michael. His voice and face, we've disguised. Evidently one day, he'd gone to his classes, wandering around class for a little bit. Wandered out and I didn't know where he went and he drove around for hours not knowing where was, who he was, or what he was doing. Finally ended up on the front porch of a friend. I don't know how he found that location. And trying to park his car and banging in the car in front of him behind him and the neighbors came out and helped him and he couldn't even remember who to call, you know, for help.

Hello. [dog barking] It's believed that Lee Miller also has AIDS dementia, but his isn't as bad. At some point, most AIDS patients will develop dementia. A hairdresser, Lee began forgetting things on the job and was forced to quit. He knows his mind is slipping away. He's attempted suicide twice. All he wants now, he says, is to live long enough for a cure. I need help. I'm not. Um, the disease affects- affected me in a different manner. It's eating my brain up, and I get confused and I get paranoid and I get fears of being outside.

Despite his fears, Lee still forces himself to take buses to downtown Portland. He wants to stay active. It's his way of fighting the disease. Isn't that scary for you? Riding that bus? Yes. Yea, I'm scared. Because I've gotten lost that way, but I try to have the bus drivers tell me where to get off. I write down where I'm gonna go to start out with, because I know that I can sometimes just forget what I'm doing. Today, Lee goes to the library in search of books about AIDS to study up on the disease. He knows he faces death. He just doesn't know when it will come. In the books, he searches for clues. It's important to me because I can learn about myself and learn about my sickness. I have to know the symptoms. If I'm really wigging out, or people are just saying that, I've gotta know myself. I am afraid to I don't want to be a vegetable. Okay? And by not doing things for yourself and by giving up and just having people wait on you. [Lee on video: I give up.] You become a vegetable. [Lee on video: I know]. I want to live like everyone else does. But if I am going to die, I might as well give them a hard time while I'm doing it.

Now you have to have a Milky Way, Mama said. Now here's two, three, two, Milky Way and a one Three Musketeers. I want that one. To Andrew, DJ, and Melissa, children of one of the Juniper's staffers, he's Uncle Wayne. Now don't spoil your lunch.

I know. It's so nice to hear, you know, [inaudible] that wasn't- it's me. And they know, too, that I have candy. And so they get a piece of candy if they're good. [tv in background] Do you want 'em clipped? Or filed? Volunteers and staff understand the risks of getting AIDS and take precautions to protect themselves. They know the virus can't be transmitted by casual contact. Juniper's staffers like Pat Boston say they have no fears. And if ya take the proper precautions that you don't put yourself at risk, you can hug 'em, you can touch 'em, you can talk to 'em, you can laugh with 'em, you can cry with 'em. And it's not gonna- it's gonna hurt, but it's not gonna kill ya. [chatter of Juniper staff] Pat's bigger concern is keeping patients comfortable. There are times when she feels helpless. It's not fair. It's not being able to understand why is this happening or how can I take it away or how can I make it better? If I was the good fairy I'd wave my magic wand, but I'm not the good fairy, and so I just have to take it along with the rest of them. Pain and fright can come in simply being moved. John is coming back from a doctor's appointment at a nearby hospital. When a patient like John leaves his bed, life can be pure hell.

Ah. Oh, oh, oh. Here you go. Oh, oh my leg. Mm hmm Oh golly Jesus Christ. Mary Mother of God. [Happy Birthday song] Birthdays take on special meaning at Juniper. There you go, Sweetheart. For patients, it's a time to forget the pain, a time to remember how to laugh again. [Happy Birthday song and laughter] The laughter doesn't last for long. There's been a death. Not one, but two. J.D. and Barry, who live in the Assisi House, a neighboring home also owned by Juniper. It's the first time two have died on the same day. Even days later, tension, tears, and fright linger. For Pat, it's the first time she's lost a resident.

I was there when John passed away, and I was the one that said, okay, he's gone now, [nine] months, it's over, and that was real hard. And then I was I was there when they came. The mortician- the mortuary came and got him and I was the last one to cradle his head. And I wouldn't have had anybody take that away from me for anything. And now I'm going to cry. [cries]. We all knew that this--his, uh, his road is finished. But I, I told him I'm a little bit disturbed, at you, J.G. Of course he's not hearing this because he's out. I'm a little disturbed about um, about you, James, because you're the next one- it's you're beating me up there. And so, just clear a path for me when I come by. So I didn't say goodbye to him or anything. I just s- so long until we see each other again. I didn't know. I have no idea that Barry was dying at all, and it caused me to have other seizures from it.

At the Assisi house right next door, Barry's death came as a shock. He'd recently moved in, and no one realized how close to death he was. Assisi was supposedly set up for those less sick with the AIDS virus. It marked the first loss in the House. In this discussion group, led by a volunteer nurse, there was fear among the residents and the dark thought that perhaps one of them could be next. Some faces and voices have been disguised to protect identities. Maybe I live in a bubble, but I thought people don't die here. They die next door. That's a reality there. So as long as you're over here, you're safe? Right, but I- no, I don't, I don't think that, I don't think that. Because I know any day I could go. But, you know, the four of us we had we've never really made a home here. But I thought--do you understand what I'm saying, Jerry?-- I mean, I just figured that it would be the four of us, you know, not forever but, you know, for a long time. Oh.

I think we do have to have to have a party here. Yeah, because that's what I was [Resident 1: we can wash that all away] going to say. You know, the happiness in this house will come back. If that-. Yeah, we-. You know. But we have to bring it back. Let's see. First of all, uh, to my family, goes the deer hanging on the wall, rings, watches. I have a yellow T-shirt. Wayne has already planned for his death. He drew up a will long ago. -And a blue T-shirt with Oregon on it. Uh, I would like the following done in a funeral or a memorial, the cremation, in Portland, because you can't transfer a body without it being cremated or enbalmed over the state line. So it's going to be cremated. It goes back to Michigan, where they're going to have, uh this, uh, services back there with all my relatives near. Lee now realizes he'd better write a will, too. Something he hopes to work out today when his brother visits.

I don't believe in cremating, so. Wayne says last fall, his doctor predicted he wouldn't live more than six months. With one week to go, he's already arranging a victory party to celebrate surviving. And so the 11th of March will be the sixth month. So I've got to look what- oh good it's on a Friday too, weekend. Good. So I'll be looking towards that next. Let's see, today's the third. Yeah. I got eight days to go. And you expect to be around? Still here. You better believe it. Lee waits for his family to drive up from Salem to help get his finances in order. He is anxious and depressed. He spent all of yesterday waiting by the window for them only to realize later it was the wrong day. I don't know where everything is this morning. I thought I was all organized. And now when my brother comes, I don't know.

This is a nice room isn't it? Yeah, it's a nice room. Lee's mom, sister-in-law, and brother soon arrive. It's their first visit since Lee moved into Juniper. At first, he tried hiding his illness from the family, fearing they'd reject him. There was shock but also support. This is what his mother told him. What you have to me is no disgrace, I said. It happens to many people. They get it many ways. So I said, um, to... For you, we don't want you to feel that way because we love you just as much now as we did before. And you need your family. Now has your brain shrunk any more than what it was? They said it was- last time they said it was the size of a 80, 85-year-old man. Now has it went any more than that or not? Well, they said it was gonna continue to shrink, but...

Continue to deteriorate? Yeah. Lee has been trying to get Social Security disability benefits to help pay for his care. In fact, he's been trying for two years now. He's been turned down twice. The latest just a few weeks ago. Even though his doctor had already diagnosed him with AIDS and said he was unemployable. Now he's had to file an appeal. More papers and red tape that confuse and distress Lee. Today, brother Bob loses his patience. I have a feeling that with the AIDS problem that they have, they figured that some of the AIDS patients are going to die before they ever approve their benefits. That's what I think I. I think the government is just saying, okay, we'll turn him down two or three times and we'll save money this way. In the meantime, somebody- they die and then they don't have to give them any benefits. That's what I think. [coughing in the background].

John is near death. His last rites were given in the morning. For the past several days, friends and staff have been comforting him around the clock, his cries of pain now quieted by morphine. In the next room, they celebrate another birthday. I'll be glad when he's in heaven because he'll be a whole lot more comfortable than he is now. I mean, it's not, not comfortable to be bedridden and have leg pain and and be congested and not being able to breathe and have a fever and can't get rid of it. And he's fought the good fight. But, you know, he's ready to go to God and, you know, I'll miss him, but I'll be glad when he's there. Six hours later, John Heath passed away, the 16th resident to die at Juniper. It's the morning after John's death, and Wayne has survived his doctor's prediction. It's the 11th.

It is, isn't it? Well, proved them wrong, didn't I? Once more, I gotta call my mother. She'd be very happy to s- hear that. Tonight he'll celebrate with his victory party. For now, he remembers John. It's a blessing that he's, well, he's up today with God. I'm so happy. That's good. Are you happy where you're at today? Am I happy? Well, yes, I am. Oh, sure, I like parties, and I'm having one tonight. I would like-. This is a great pie cake To make a toast. That night Wayne celebrates with friends. -And I thank the Dear Lord that this is my victory party for the third time. And not only to my victory, but also I'd like to be reminded that, uh, John. I toast to him as well. Wayne and other Juniper residents know their time will come and that others wait to move in here. But tonight, victory is more real than anything else.

You beat 'em again, huh? I sure did. All right. This time, for one brief moment, they have won. Next week on Front Street Weekly:

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