Bonus Round Caregiver Pages
Toward better patient/caregiver communications
HANNAH, Hospice Social WorkerTOMMY* [part one] [part two] [part three]Continue to PART TWO OF TOMMY'S STORY
Age 28 AIDSI walk into Tommy's house. His aunt softly closes the door and says he's in his room.
I say hello to Tommy's grandmother who is staring at the television and make my way back to Tommy who's rubbing his eyes to wake himself up after having dozed off awaiting my arrival. He tells me to move stuff out the way for a place to sit. He is irritated with the size of the tiny room. I scurry to shift things around to make space. I can't quite put my finger on his mood. He tells me he misses The Hospice House.
With great impatience, Tommy announces an agenda for us today. He says he's been reading hospice literature and has highlighted things he wants to explore further. He then hands me the bright yellow pamphlet entitled "Preparing For Approaching Death". He's a mixture of contained excitement and fear as he points to "signs" and says, "I have this. I have ALL of these!!"
He wants to talk specifically of "Vision-Like Experiences" where the pamphlet states:
"The person may speak or claim to have spoken to persons who have already died, or to see or have seen places not presently accessible or visible to you. This does not indicate an hallucination or a drug reaction. The person is beginning to detach from this life and is being prepared for the transition so it will not be frightening."
He begins to tell me of his dreams.
Oh.
Wow.
He has had visions of angels, says he's woken to find himself reaching out to someone who is not there. So far, no familiar faces; only strangers. He says he thinks when he sees a familiar face, he will be truly dead.
He says a familiar face will lead him out of this life.
Now he's suddenly uncomfortable in his bedroom and wants to go to the living room where he can sit in a recliner. I follow him. He's wobbly and I'm prepared to steady him if he starts to fall. He moves slowly, like an old man. He holds on to both sides of the hallway walls for support. We reach the living room less than 10 feet away.
He's exhausted. He sees that his grandmother and aunt are in the room and he curses under his breath. They notice him and ask if he wants them to leave the room. He says, "Well, if you don't mind....thank you." They shuffle out of the room. We make our space. I get a chair from the kitchen. I tell him I don't like sitting so far away from him.
He immediately continues where he'd left off.
His dreams have been scary. One is of two angels leading him down a path. He has difficulty keeping up with them although they urge him to, telling him not to look at anything he passes. He can't help but look and what he sees are horrific images. People receiving torture of sorts. He sees violent sex acts. He feels demonic dark and evil presence. He sees people that resemble Holocaust victims. He feels that he himself looks like a holocaust victim. He's right. I can make out every bone in his face.
We spoke of the symbolism of his dreams. We questioned the sex acts. He equates it with the "abnormality" of homosexuality. Says that maybe it's because homosexuality is wrong. I pull my chair up to face him. Look him square in the eyes and ask him if that is what he's been taught all of his life.
He nods yes. He wants me to KNOW that his family has been accepting. His reference is to the public at large.
My head is inches from his.
I tell him that homosexuality is a part of him. That it is not any more abnormal than having blonde hair instead of brown. That it is who he is. That it is NOT wrong. It is NOT right. It just IS. Everyone of us is different. Everyone of us is TAUGHT to believe various things throughout our lives. We are not to be PUNISHED for being different.
I tell him that his dreams are created in his own mind. They are very personal images that have inherent meaning which he and he alone can determine. I tell him that he could JUST as well have dreams that are sexual in nature but rather than being torturous and evil, they could be warm and loving and caring, comforting, and safe.
He is listening intently. He is concentrating so hard on my words. So hard that it is breaking my heart. He's looking at the floor as I speak and bobbing his head up and down. He remains quiet for a while. We talk about symbolism much more. We continue to pour over the details of his dreams.
He asks me if he will have pain when he dies. He has asked me this question every visit.
He asks me if he will know he has died. I tell him that I don't know the answer, but we both THINK that he will. We both THINK that he will feel a sense of peace and release, a sense of flying away. A positive feeling. A tranquil and calm feeling.
He gets agitated again quite suddenly and says he can't stay alive much longer. He looks angry. He tells me that his mother was admitted to the hospital yesterday with chest pain. He says he is so worried that she won't see him before he dies. He feels that he is getting close. I tell him again that he has more control over his death than he realizes. He says he wants to hug his mother again. That's all he wants. Clearly this is the most important thing. Clearly this feels "unfinished". I want to promise him that he will be able to do this.
He asked if I thought he was holding on to something in his subconscious. I told him I didn't know and asked him what HE thought. He doesn't know either. I told him I thought that sometimes it seems our mind is ready before our body is able to let go.
He said that his dad had a short talk with him a few days ago and that they had made amends. That whatever his dad felt guilty over, Tommy had forgiven him completely.
I asked him when in his life he was happiest. He ignores the question.
He says he feels he doesn't have a soul anymore. He said he's lost his self worth, his dignity, his ambition, his "soul".... I challenge him on this. I explain to him that there is a part of him that continues to love, continues to put the needs of others in front of his own. There's a part of him that continues to reassure everyone around him. There's a part of him that looks inward and works hard to verbalize what he finds. There is a part of him that searches for the answers, continues to question. I said, "THAT is your soul."
He sees this too. He nods in agreement. He thanks me. But he continues to feel empty. We talk about all of his losses. We dwell on his loss of independence. We grieve. We sit and really start hurting together. I can't imagine what it is like to be him. I tell him that. I tell him that he teaches me so much about tolerating an illness. Tolerating everything. We talk about how goals change when you are dying.
Tommy says he thinks AIDS is a punishment. He wonders if the person who gave this to him was punishing him. He wonders if God is punishing him for the mistakes he's made. I said, "If this is GOD's revenge on homosexuals, why are heterosexuals also infected? Why are BABIES infected???" I've heard this so often...
He asks me then, "Why did this happen to ME?" I am present with him. I am WITH him. The question just sort of hangs in the air.
He's uncomfortable in the living room, so we move back into his bedroom. He stops to tell his aunt and grandma that they can go back now. They are comfortable staying in their room.
We go into the bedroom because Tommy wants to lie down and close his eyes. Says he's scared to go to sleep because he's scared he won't wake up. Says he can't die until he sees his mother again. I notice him drifting. I ask if he is too tired to continue and he says he wants to rest but he doesn't want me to leave. I sit at his bedside. His eyes are closed but he continues to talk. His voice is getting weaker. We go back to his aspirations.
He wanted to be self sufficient.
He wanted to be free.
He wanted to feel successful.
We focused on what he HAS done, what he is most proud of. He tells me he bought a jeep. He LOVED his jeep. It was hunter green or forest green. "Hell," he says, " it was just GREEN." It had a brown leather interior. It had a twelve disc cd changer. He loved to drive it.
He is most proud of his work with JLC. He was also a messenger and got to drive his jeep all over the state. He loves his friends. 13 of them are dead. He says he wants to get back to the happiness question.He said he was happiest when he and Shawn* moved in together. I asked about Shawn. This is the first time he's mentioned the name. "Shawn..." He begins to tell the story He's right there. I can see it in his eyes. But then it turns into a bad memory very quickly. The happy story doesn't turn out so happy.
He tells me that he and his friends used to love Gallery District. He tells me they always tried new restaurants. He loved to go out to eat. I tell him I live in that district. I tell him our paths MUST have crossed before. He seems to find this intriguing. I do as well.
He drifts off to sleep. I watch him sleep. I realize how deeply I care for this man I met one week ago. I realize how much he has impacted my life. I close my eyes and drink in this moment. But I'm startled out of my reverie by his panicked voice saying, "What's wrong???" He CAUGHT me with my eyes closed. He said he thought I drifted off. He wanted me to stay awake. I re-assured him I was awake.
I tell him about my bag of rocks. I show him the blue velvet sac that I brought with me. I tell him that rocks have been around forever. I explain to him that these rocks are special to me because they were given to me by someone special to me. I tell him that they have always been kept with me, safe and protected in this fancy velvet bag with the blue tassle. I tell him I want him to pick one out that he can have to hold onto whenever he's feeling alone or in need of protection.
I remind him of the power of the mind to transport him to a different place. I remind him of the safe place he "created" when we last met and I'd helped him with a guided imagery exercise. He sticks his hand in and chooses a rock. He looks at me and gives me a shy smile. He clutches the rock in his hand. He shows it to me. I take it from him and hold it then give it back to him. My heart is singing. I tell him that when he holds it, he needs to know that I am thinking of him.
The phone rings. It's his mom. She's being released from the hospital and needs a ride home. He practically jumps up out of bed. He's almost in tears when he looks at me. He tells her he loves her and can't wait to see her. He tells his aunt she's been released and needs a ride. His aunt leaves to get her. He feels ready. This is important.
He wants to go back in the living room, says he's not tired anymore. I call the doctor to get an order for his nicoderm patch. I do a quick financial assessment so we can get funds to cover the patch which will help him quit smoking which the doctor feels in contributing to his cough. He sits in a big chair while I'm on the phone next to him. He suddenly grabs for the bucket and vomits. It's green. I rub his back and kneel beside him till he's done. He's shaking. He wants to know where THAT came from. I tell him he's had a rough afternoon, been on a roller coaster. It's been a VERY emotional day. I continue to rub his back. He continues to vomit. He misses the bucket and gets vomit on his socks. He curses. I tell him we'll get clean socks. He doesn't have any.
He tells me that he hates the smell of vomit. I tell him I'll clean the bucket. I clean the bucket. I almost start to cry when I'm alone in the bathroom, but I don't dare. I'm so afraid that he'll notice, and I think it would worry him.
I come out of the bathroom and he looks me square in the eye and says "Who ARE you? I mean, I know you are the social worker.. But I've had so many social workers and none of them were like you... none of them have been so, so, so... therapeutic." I laugh at his word choice. I am receiving the highest compliment I have ever received. He continues.. " Really, who ARE you?" For a moment I think he is questioning whether I am real or just in his mind. Whether his mind is playing tricks on him. I'm a bit confused by his questioning. He tells me that I don't know how helpful I've been. He tells me I am helping him. I tell him that he is helping me too.
I begin to gather my things. His father walks in the front door. I introduce myself. His father is pleasant to me. Mostly disinterested. He goes to the kitchen.
I look at Tommy. I tell him about the Hebrew prayer that blesses five angels that protect him while he sleeps. He likes this concept. He tells me there isn't enough space in his room for five angels. We both smile. He's literally too weak to laugh.
I remind him that it's a three day weekend. I remind him that I am off until Tuesday. I practically choke when I say it because I think he knows what I'm thinking.
I don't dare say it out loud.
He stands.
I hug him for the first time. He's tall, yet so tiny I could wrap my arms around him twice.
He tells me again that I've helped him. His hug is gentle. So delicate. He feels so fragile to me. It seems as though we are cradling each other. It's a long embrace. He's holding the rock.
I can't speak because I'm really close to losing it. I tell him to tell his mother hello for me.I clear my throat and tell him I'll call on Tuesday...
HANNAH*
*All the names, dates and locations in Hannah's story have been changed to protect patient privacy. These stories are offered to the reader as part of our ongoing patient/caregiver communications program sponsored by Bonus Round Inc. All materials © 2000 by the author. http://www.bonusround.com.