Week One
After breakfast, Bill’s cousin packs up his things and leaves. And I go back to the hospital. It’s 9:30 when I walk into Bill’s room on 3 North. He is still in the 4-point restraints; still drugged out of his mind. There is a Care Aide stationed at a computer beside the bed. Bill’s eyes are closed. He doesn’t respond when I say hi. I sit on the bed and take hold of his hand. He stops squirming and lies still.
“He responds to you,” the aide says.
“We’ve been married for a long time,” I reply. “He’s used to me.”
How long have you been married?
“Forty-nine years this year.” And I tell her the story of where and how we met at a beach when we were kids. Bill turns his head toward me and smiles.
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“He likes that story,” the Care Aide says.
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“Yes. I like remembering it, too.”
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A nurse comes in and asks me what happened before I brought Bill to the hospital the day before. I repeat what I told the ER staff yesterday, emphasizing that Bill did not hurt the Adult Care staff member in question. “Are those necessary?” I ask, pointing to the restraints.
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“Yes,” she says. “He’ll be in them as long as he’s in here.”
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I cannot believe I heard correctly. The Liaison Nurse told me Bill could be here for months. But before I can question the nurse further, she’s gone. I ask the aide who she is.
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“The Charge Nurse today,” the aide says.
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A few minutes later, Dr. S comes in. The Charge Nurse is on his heels. The doctor sits down in a chair on the opposite side of the bed and tries to talk to Bill, but gets no response. He asks me to tell him what had happened. I feel like a broken record, but again I repeat it. Like the ER staff, Dr. S asks me if Bill has ever threatened me, and again I repeat what I said yesterday, emphasizing yet again that Bill hadn’t hurt me. “He’s never hurt anyone,” I say, pointing to the restraints, “and we don’t even treat wild animals like that.”
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Dr. S turns to the Charge Nurse and asks, “Is there some other kind of restraint, like a waist restraint, you have? Something more humane. If Bill’s kept like that he’ll quickly lose all his strength.”
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“No,” she says and leaves the room.
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“I’ll be coming to see Bill once a week while he’s here,” Dr. S says. “And I’ve started him on some medication.”
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Again, I motion to the restraints. “Can’t you get them to take those off?” As soon as the words are out of my mouth, the Charge Nurse reappears.
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“I don’t want those restraints taken off,” she says. “I don’t even want to see them loosened. Dr. P (our GP) told us Bill is young and big and strong. He scared me and I don’t want the restraints removed.”
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I look at Dr. S. “Please,” I beg. “Can’t I at least take him for walks?”
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“It’s up to Dr. P. I’ll talk to him,” Dr. S says, and he and the Charge Nurse leave.
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A short time later Dr. S is back. He tells me that beginning the next day I can take Bill for walks in the corridor, but only with Security present.
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It’s the best I’m going to get. “Okay,” I say. Happy for the moment for any kind of give on their part.
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The following day, I tell Bill’s nurse I want to take him for a walk. An hour and a half later a male and a female security guard arrive. They undo the restraints and I get Bill to his feet. He’s wobbly with medication, and because he’s been tied up for over 36 hours. The guards move to take hold of him but I step between them and Bill and reach for Bill’s hand. “Will you take my hand?” I say, and he does. “Let’s go for a walk.”
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We go round and round the corridor loop with the security guards trailing behind us. As we walk Bill gets steadier on his feet, and I start to sing. He joins in and we march around the circle to The Ants Go Marching One by One…etc. When we stop at a window at the other end of the corridor and look out, he’s amazed. Getting much snow here in winter is unusual. But this year is an exception. We’ve had dump after dump.
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“So much snow!” Bill says. “It snowed in Saskatchewan. It doesn’t snow here.”
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I laugh. “It does this year. It’s been coming down pretty much non-stop. Every day this week I’ve had to shovel the driveway to get out. The city makes us shovel the sidewalks, too, which means that with our corner lot Stephanie and I have the equivalent of a city block to keep clear. It’s a bit much. If it keeps up, maybe a snowblower is in our future.”
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“It’s pretty,” he says.
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We start walking again, and singing You Are My Sunshine. A glance behind us tells me the female security guard is becoming more relaxed. By the time we return to Bill’s room she’s smiling and laughing with us.
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I tell Bill, “You need to get back in bed now and give them your hands.”
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Without a word, he gets into bed and raises both of his hands toward the guards. It breaks my heart. I can’t stop the tears, and while she’s locking the restraints I see that the female guard is fighting to choke back her tears.
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When he’s tied back down she says, “I can’t believe how compliant he is.”
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“Yes, well, he’s a gentle man.”
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“Really? When I saw these”—she motions to the restraints—“I thought he must have done something terrible.”
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I am not comfortable talking in front of Bill as if he isn’t here, but I need to explain. “He threatened to choke a worker at Adult Care, but he didn’t touch her.”
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“That’s it?”
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“Yes, that’s it.”
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She leaves the room shaking her head.
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It’s lunchtime then, and the aide stationed beside Bill asks me if I want to feed him. But I can’t stand it any longer and I decline. Again I go home and cry.
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Stephanie goes up to see her dad that night. When she comes home she tells me she got them to free one hand so he could eat an apple she’d taken him. I’m hopeful then that maybe they are beginning to see the light and will free him the next day.
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*****
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I arrive just after 9:00 a.m. By then the Care Aide and the computer she was stationed at are outside the door to his room; not in it. He’s still in 4-point restraints. I can’t imagine how it must be for him, tied into his bed day and night without even anyone to talk to.
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After 10:00, two female Care Aides and two male security guards come in. The guards undo the restraints and the Care Aides proceeded to remove Bill’s very wet brief and give him a cursory wash with a wet washcloth. When they ask him to roll over, they make him hold the bed rail with his hands. He is so drugged he can barely respond to their directions, and he couldn’t have hurt anyone if he tried. It takes them no longer than five minutes to complete the ‘bed bath’ and have him back in the restraints. I can’t imagine what they’ve been told that is making everyone so afraid of him, and I am sick to my stomach.
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I tell the Care Aide outside his room to tell the Charge Nurse that tomorrow I want to shower Bill as well as take him for a walk.
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At noon, the Charge Nurse—same one that said she didn’t want Bill’s restraints removed—comes in with more meds for Bill.. “Maybe you can help me give him his pills,” she says. “I can’t get them into him. He spits them out.”
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I watch her try to give them to him. They’re in a tiny paper cup and she tips them into his mouth. I see him struggle to get them to a place where he can swallow them, but he can’t. The nurse shoves a straw from a cup of water into his mouth. He struggles some more, then spits the pills out.
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I pick them off the front of his gown. “Bill,” I say, “I’m going to put these pills in your mouth. Then I’m going to give you some water to help you swallow them. Okay?”
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He nods.
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“Okay, can you please open your mouth?”
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He opens his mouth and I put the pills back far enough on his tongue that he won’t have trouble swallowing them. He drinks the water and swallows.
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“I know what I’m going to do,” the Charge Nurse says. “I once saw someone give someone pills by mixing them in apple sauce. I’ll do that.”
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“He likes apple sauce,” I reply. “By the way, I want to give him a shower tomorrow. He loves water. It makes him feel good.”
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“That won’t be possible,” she says and with no further explanation leaves.
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That afternoon, I have an appointment to meet with the Director of Nurses. She spends a long time talking to me about Bill, telling me he is an icon in the community and I will be an integral part of the team looking after him. That I know him best, and whatever decisions are made regarding his care will be made with me.
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That certainly hasn’t been the case so far, but I want to believe her. I tell her that seeing Bill being kept in restraints the way he is, is very distressing. She says it’s not her call and I ask her to talk to whomever’s call it is and get them removed. I tell her I want to shower him tomorrow as well as take him for a walk. She says she’ll check.
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Later, she comes to Bill’s room and says I can shower him, with Security. I reply I’m fine with that because that’s what I know I have to say.
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I stay at the hospital all day, and in spite of the restraints I think we’re actually making some progress because by the second walk there is just one security guard following us. And when he’s put back to bed Bill’s right hand is left free.
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*****
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Saturday I arrive at the hospital at noon, help Bill with his lunch, then ask the Care Aide to please call Security so I can take him for a shower and a walk.
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Forty minutes later, a male and a female security guard arrive. Different from the ones who’ve been walking with us until then.
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“We don’t feel comfortable with you giving him a shower,” the female says.
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I bite my tongue. “Okay,” I say. “But I’m going to take him for a walk so please undo him.”
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“We don’t feel comfortable with taking him for a walk,” she says.
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I see red and fight to keep my voice level, but it comes out forcefully. “I’m not pressing the shower, but I am taking him for a walk! I have taken him for several walks. It’s doctor’s orders. So undo the restraints now, please.”
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Reluctantly, they do. As usual, Bill and I sing while we walk, and I see he’s getting some energy back. This time we walk much longer than we have been. At some point during it, both the guards stop following us. They just stand by the nurses’ desk while we go round and round the loop. When they’re doing the restraints back up, the female says, “What did he do that he’s in these?”
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I sigh. Doesn’t anyone communicate with anyone in this place? “He threatened to choke a worker at Adult Care when she was in the bathroom with him. She was frightened, but he didn’t touch her.”
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“What? Wow. I thought he’d done something horrible, like really hurt someone,” she says.
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“Yes, well, you are one of several people who’ve told me that. But the fact is, he hasn’t hurt anyone.”
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The next day I shower Bill, with Security waiting outside the shower-room door. They wanted to come in with us, but I wouldn’t let them. Bill stands under the hot water for a long time. He is so happy he starts singing in the shower and I laugh.
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When I get home, I decide enough is enough! Besides the fact I’ve heard from several nurses, Care Aides and security staff they thought Bill was being restrained because he did something terrible to someone, I’ve seen first-hand that their assumptions make them afraid of him and their fear translates into how they treat him. But now they’ve all seen how compliant he is. So why is he still being restrained? The Director of Nurses told me it wasn’t her call. Dr. S said he’d check with Dr. P, but I’ve heard nothing about that. The next morning, I call our doctor’s office and when asked if it’s urgent, I say yes. They tell me to come in in an hour.
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“It’s up to the nurses,” Dr. P says.
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“It is not,” I counter. “It’s up to you. It’s your orders that put them on him, and only you can order them removed. Please,” I beg. “It’s not human to keep him like that. He hasn’t hurt anyone! If you don’t order them removed, I don’t have a leg to stand on with the nurses.”
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He says he’ll see what he can do. I leave in a quandary.
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The next morning when I arrive at the hospital the four-point restraints have been replaced with a waist restraint that at least allows Bill to use his hands, and to move his legs. And I think the Charge Nurse who wanted him kept in 4-point restraints was either lying when she told Dr. S the hospital had no other kind, or she was ignorant and had no desire to find out if they did. I’m glad to see the change, but it’s not good enough. Bill is kept so drugged he can barely keep his eyes open. Why is he being tied down at all?
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When an aide brings his lunch tray in I help him with it, and note he’s forgotten he has a left hand. I have to keep touching his arm and reminding him he can use that hand to steady his soup bowl, and to hold part of the sandwich. It takes a lot of reminding before he finally uses it, and I wonder: if losing the sense of having a limb happens after six days of having it tied down, what would have happened if he’d been kept that way longer? I want Bill freed.
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*****
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Bill has been in hospital for one week. Today, I wait for 4½ hours for Security to come so I can take him for a shower and a walk. They don’t come, and it doesn’t happen.
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At this point, Bill seems to have lost most of his language. Except when we’re singing he says very little. Before the hospital, he struggled from time to time to find some words and I had to use shorter sentences when I was talking to him, but he was still able to converse fluently. Is it the medication silencing him—making it hard for him to understand and slow to respond? Or is it that he’s isolated in a room by himself with no one to talk to except me, when I’m here? And I’m only here from three to five or six hours in a 24-hour day. I’ve asked the nurses several times what drugs he’s on and each time they say they’ll check, but they never come back and tell me. I haven’t seen Dr. S again.
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Bill sees me looking at the welts around his waist due to the restraining belt and asks, “Am I dying?”
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“No. Absolutely not,” I reply. “Not today.” We both know dementia is terminal, but he has been so strong for so long I’ve buried the thought of his death so deep it doesn’t really exist for me anymore.
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“Good, because as long as I’m alive there’s hope,” he says. My heart cracks a little more.
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It is taking everything I have to not pack him up and bring him home, but I’ve been told so often that if I do it will be worse for both of us because there won’t be any support available from Home and Community Care due to the label he now wears. He can’t attend the Adult Care Program anymore either because of the incident there, and it’s difficult to find private care people to come into one’s home on a regular basis.
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I see our doctor again on Wednesday and maybe will be able to see some light after I talk with him again. Just now I feel very lost in the dark. This has to get better. Over and over I tell myself that.
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