THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
Behind Locked Doors
My time at the hospital has been limited for a week. Shovelling snow has gotten to me. A pinched nerve in my back. But I got a call from a good friend, who asked if it was okay for her to visit Bill. I was happy he’d have the extra company.
After the visit, my friend called again. She said when she arrived she just walked into Bill’s room, took his hand, gave him cookies she'd taken and asked him to sit on the bed beside her. Then they sang old songs she knows he knows. She said Bill sang right with her, as he always does with me, and started to whistle the tunes when he didn't know the words.
At that point, the Director of Nurses appeared and told Amandah to come out of the room and called Security. Amandah, who was a nurse in her working life, told the Director she is well aware of what's been going on with Bill and he’s a good friend. She said she and Bill were just singing.
The Director said she didn't know Bill liked to sing and would write it down right away, which is a load of crap. I've told her several times, written it on a poster I've put up on his wall and a copy in his chart about his likes and dislikes, and told many of the staff on the ward. Dozens of staff have heard me singing with him many times. But that's the kind of double-talk that keeps happening here. Pretense that information is new. Fear-based actions and reactions based on conjecture about what MIGHT happen rather than assessing what IS HAPPENING right then, at that moment. Fuelled by the Director of Nurses.
Amandah said she refused to exit. Instead, she asked Bill to lie on the bed, took off his shoes, rubbed his back and watched him drift off into a nap. Hurray for friends who won’t be bullied into ridiculous fear!
I spoke with Dr. S on the phone yesterday—briefly because he has the flu. He said the plan is to send Bill down island for as long as it takes to get him calmed down—could be a year or more, he said. Due to what’s been written in Bill’s chart, he is now adamant a Tertiary Care unit in Cowichan or Victoria is where Bill needs to go. He said they have much higher levels of staffing, room for Bill to move around, and are focused on dealing with dementia, so staff has a much better grasp of what approaches will and won't work, plus meds will be adjusted until the right ones are found that will help Bill calm down. So, it seems any thought Bill won’t have to go to Tertiary Care has been abandoned.
I wasn't able to really respond to that. No account seems to be taken of the fact Bill is always calm with me, and usually with several staff also. There is no assessment of approaches used with him and no evaluation of what’s happened when he resists someone. There has never been a ‘team meeting’ to discuss problems, strategies, or anything else. Just purple dots added to his chart. Every decision regarding his care seems to be being made behind locked doors, to which I can’t find a key.
The whole thing about no Tertiary Care in Campbell River has come as a shock to Stephanie, as she says it has for all of her co-workers. They thought the program Dr. S oversees at New Horizons was Tertiary Care here. Apparently not. That unit is only for people they know can get better, not dementia cases.
If Bill is approached with kindness and caring he still responds in kind, so I know he has not lost all control of himself. But he has in fact declined more in the six weeks he's been in hospital here than he had in the past six years. One thing is for sure. He is now so caught up in the anger and frustration the situation and his disease have combined to cause, that no matter how calm he is with me he cannot pull himself out of the visceral reactions he’s now having toward some staff.
I cringe at the thought of having to drive 3-4 hours each way to visit him, but if he is moved down island, it's not the travelling that’s the real issue for me. It's the fact he’ll be in a place where no one knows him, no one will visit him, and he will in effect be all alone. I don't believe anyone who is sick should have to be alone period. How can it be beneficial to move a dying person away from the people who love him?
I’m tired, sore and confused. I saw a doctor at the walk-in clinic as Dr. P is away, was x-rayed and have been referred to an orthopaedic surgeon. The doctor who looked at the x-rays said, “Don't lift, don't go up and down stairs, stay on level ground, but walk.” I’ve also been referred for a scope.
So, I go up to the hospital, take Bill's hand, and walk. Not too far. And I will continue to bring him home as much as possible and give him a break from the hospital, and the staff a break from him. If I believed in miracles I’d be on my knees for hours each day.
At 10:00 a.m. I get a call from the hospital. His nurse tells me Bill has had an extremely rough morning, banging his upper door, kicking, hitting, throwing things. “No one can get near him,” she says. “We gave him Haldol, but it hasn't helped. Can you come?”
When I arrive, I go straight into his room. His nurse calls Security and says, “They’ll just stand outside the door.” But when they arrive and see me there (they all know me now) they turn and leave. His nurse then follows me into Bill’s room.
I immediately turn on music, and lead him to the bathroom to begin changing and cleaning him. I move too quickly and he uses an arm and leg to push me out of his personal space. I move back into the narrow doorway and ask him if he wants to be changed. He says yes. When his nurse sees me get his soiled pyjama bottoms and pull-up off him, and gently turn him around and get him to sit on the toilet, she is surprised.
She’s even more surprised when he says he’s finished and I tear off TP, hand it him and ask him to wipe his bum, which he does. I ask her to please get more washcloths and wet them and she does. Then I tell him I’m going to wash him and ask him if that’s okay. He says yes. I clean his backside, then hand him warm, wet cloths one after another and ask him to clean between his legs, which he also does.
It's no easy matter to clean him up when he's been soiled for hours and at one point he gets frustrated and kicks me—not hard but it's something he's never done before. I just stroke his back, tell him how sorry I am he’s feeling so bad, and ask him to take deep breaths.
“It hurts,” he says.
“Show me where.”
He grabs his stomach.
“Acid reflux,” I say to the nurse. “Can you get him some antacid?”
She brings a dose of liquid antacid but when I go to hand it to Bill he again uses his arm and leg to try to shove me out of his personal space. I put the antacid aside, take hold of his hands and ask him if he meant to be mean or hurt me.
“No, no, I don’t want to hurt you!” he says.
“I’m worried for your safety,” the nurse says. “Should I call Security again?”
“You can call them if it makes you feel better, but I don’t need them. Right now what I need is more wet washcloths for his legs.” I turn back to Bill and say, “We just want to help you feel better. Is it okay if we finish cleaning you up?” He takes his time about answering but eventually says yes. The nurse arrives with a bunch more washcloths she wets in the sink in his room, and hands me one at a time, and we get it done.
When Bill is in clean clothes, I offer him the antacid again. He takes it and his other pain meds from me, and settles down considerably. The effort took a good half hour, and I know the staff don’t have that kind of time to help him whenever he needs help.
I take him home with me for the afternoon. On the way back into the hospital at suppertime we meet a security guard who is heading off shift. “How was the day?” the guard asks us.
“It was good,” Bill says with a smile, his morning completely forgotten.
This morning I woke at 5:00 a.m. and went to the hospital to try to prevent whatever scenario made Bill go ballistic yesterday morning. He was sound asleep and the night nurse said he'd had a good night. Later, I was told he'd fallen, but didn't appear to be hurt. My immediate thought: drug overdose due to what would have been written up in his chart as violence on his part yesterday.
I sat and waited for him to wake up, which he sort of did around 8:00, and I got him changed, washed and dressed, all in a very peaceful manner and without anyone else in the room. Only when I opened the upper door did his nurse for the day appear.
I asked her if the fall he’d had was because of drugs. She said, “Dementia causes instability.”
“Maybe,” I said, “but Bill is nowhere close to being unstable on his feet.”
The same Security guard we’d seen on the way in last night then appeared and barged into the room, and Bill’s nurse said, “Management decided Bill has to have a guard in his room when anyone is here, including you.” That, I thought, is the Director of Nurses’ doing.
The guard said, “You can have maybe one hour a day with Bill, if you pre-arrange it.”
Angry that anyone thought they could tell me how much time I could spend with my husband, I said, “I’ve already been here a lot longer than that. I’ve changed, washed and dressed him without any incident whatsoever. And whenever I come, I’m going to be here longer than an hour.”
“If you choose to not have security that’s on you, not me,” he said.
“Fair enough,” I replied, and he left. So did Bill’s nurse. Bill was still extremely sleepy so I put him back on his bed. He woke at 10:00 and I got his breakfast down him, and brought him home for the day.
At home, Bill slept most of the day, which told me he had been well and truly drugged last night. Which also makes me positive the fall I was told he’d had was caused by drugs. But when he was awake, he still had the pizzaz to tease the dog and Lily, and laugh with us, which was really good to see and hear.
I'm crying and shaking, and want to scream, but won't because Lily’s downstairs. I’m trying to get a grip. Understand exactly how what happened did, but my thoughts whirl in a continuous circle and feelings I can’t quell are threatening to smother me. I force myself to inhale…exhale…inhale…exhale. Then I’m wracked with sobs again and it all goes to shit. Over and over I relive the scene that has caused me this grief.
I arrive at the hospital at 7:00 a.m. intending to bring Bill home again because yesterday was a good day. I get him showered and dressed and we’re just opening his door to leave when the Director of Nurses appears and blocks our way.
“You can’t take him out,” she says, “the doctors are on their way.” Which was a lie.
“What? Of course I can take him out. I’m taking him home for the day.”
“No, you can’t.”
Anger is beginning to get the better of me. “Yes, I can,” I repeat. “I have a legal Representation Agreement.”
“Did Bill punch you?” she says.
“What? Of course not.”
She folds her arms across her chest. “I have witnesses Jocelyn.”
Bill retreats to his bed, where he curls himself into a ball.
“Are you referring to Saturday? After I’d been called by his nurse and asked to come and help?” I stress the part about me being called to help.
“Yes, and Bill punched you, hit you in the face and kicked you, hard.”
“That’s ridiculous. Come here and I’ll show you what happened,” I say.
She comes into the room and I place her in the bathroom doorway as me, place me in front of the toilet as Bill, and show her how Bill used his arm and leg to push me out of his personal space. “That’s all he did. A shove.”
“What if he shoves a child? You have grandchildren, Jocelyn.” She backs into the doorway to the hall again and I move to face her.
“Bill would never shove a child! In any case, Lily is never alone with him.”
She doesn’t move. “He could hurt her.”
Now I yell. People in the hallway turn to look. “I’m going to take him home and you cannot stop me.”
At that moment, Dr. P arrives.
“I can’t let you take him out,” he says.
“I can and I’m going to.”
“I can’t allow it.”
By now my voice is so loud the entire floor can hear me. “I can! This is what happened on Saturday!” And once again I show them what Bill did.
“He could shove someone who came to the door,” Dr. P says.
“He doesn’t open the door, I do. And he’s never shoved anyone who wasn’t doing something to him!”
But he and the Director are texting on their phones, not listening, or caring a whit about what I’m saying.
“I’m certifying him as a Danger to Himself and to Others,” the doctor says.
Then Stephanie arrives. They let her into the room and she tells me the Director called her and told her to get to the hospital a.s.a.p. because I was in crisis.
“I’m not in crisis,” I say. “I am furious at what’s happening!”
I tell them that when Bill was home yesterday he teased the dog and Lily, laughed with us, and I did not ever have any trouble with him, and Stephanie backs me up. But they’re still texting. Not listening.
“I want to speak to the nurse who wrote that report,” I say.
It takes half an hour for her to appear. When she does, I confront her. “Bill did not kick, punch and hit me in the face.”
“He did,” she says. “I wouldn’t make that up.”
“He shoved me out of his personal space because I moved too fast,” I counter. “He’d been ramped up all morning. And when I asked him if he meant to hurt me he said, ‘No, no, I don’t want to hurt you.’”
“Yes,” she agrees, “I heard him say that.”
“And he did everything I asked him to. You helped me clean him up.”
“Yes,” she says.
But she maintains she'd seen him punch me, hit me, and kick me—“Hard,” she says, which just did not happen.
When Bill shoved at me, he was inside the tiny bathroom. I was standing in the doorway with my back to her, partially blocking her view. She saw what she saw at an angle. I don't think she was deliberately lying. I think she was perceiving it the way she did because Bill had been ramped up all morning, and when I got there she was nervous about coming into the room with me without security.
Perception is everything and anyone who’s seen justice being played out knows that eye witnesses are incredibly unreliable, not because they want to be but because everything depends on one's state when one witnesses something. But no one was listening to me.
Dr. P and the Director continue to text. Dr. S never arrives. Later, I’ll learn Dr. P and the Director of Nurses texted Dr. S an erroneous report because two doctors had to certify Bill.
Through it all, Bill stays curled up on his bed, silent and afraid. I point to him. “Does that look dangerous to you?” I demand, and repeat, “and I have a legal Representation Agreement.”
“Doesn’t matter,” P says. “It’s done. You have no legal rights.” Then he says, “When I leave here I’m going straight to my lawyer and change my will because my wife would do for me what you’re doing for Bill and it would kill her. And it’s killing you.”
“Jocelyn’s sick,” the Director says under her breath.
I hear her but my focus is on P. “What, you mean looking after him?”
“Yes,” he says.
“Looking after my husband is not killing me,” I snap, “but what you’re doing might.”
Then, I collapse on the chair and cry. Stephanie crouches beside me and takes hold of my hand. P walks over to me and wants to hug me but I’m having none of that. “Come and see me,” he says.
I don’t reply, but I think, Not on your fucking life.
He leaves. So does the Director.
I go to the bed and sit beside Bill and rub his back. He doesn’t move.
The Director returns. “Bill will be moved to Comox today,” she says.
“Can I go in the ambulance with him?”
“Sounds like a good idea,” she says. “I’ll check.”
“You might as well go home to Lily,” I say to Stephanie. “I’ll call you if I need you to follow us to Comox so I can get a ride back here.”
“I can’t believe how protective Dr. P is of you,” she says.
“At Bill’s expense,” I return. “That kind of protection I don’t need.”
I spend the afternoon holding Bill, dancing with him, trying not to cry. Bill is sad, too. I’m not sure he knows exactly what’s happened, but I think he has a good idea.
After 5:00 p.m. an ambulance crew arrives to take him to the Comox psychiatric unit. The nurse accompanying him is my favorite male nurse and I am allowed to ride in the ambulance.
The isolation unit Bill is taken to on the psych ward is virtually a jail cell—bare cindercrete walls, a very narrow single bed, and a combined stainless-steel toilet/tiny sink. There’s a curtain over the small window in the locked door, so he can’t even look out. There is an anteroom that’s about 8’ long and 4’ wide. It’s where patients in isolation are allowed to walk, with two security guards in attendance. I’m allowed into the anteroom. Stephanie, who has followed us, is made to wait outside.
When Bill is taken off the stretcher, the ambulance attendants try to physically force him to lie down on the bed, but he holds himself in a sitting position.
“Please let me in,” I say, and they let me in the room. I simply ask him if he will please lie down, and he does, and I sit beside him for as long as I’m allowed.
His nurse says, “We’ll take good care of him. Call anytime, night or day.”
I cry all the way home.
I am beside myself. I could never have imagined anything like this happening. I simply didn’t know it could. Dr. P said I now have no legal rights, but I’ll be putting together a full report of everything that happened at the hospital while Bill was there and sending copies to the hospital CEO, the Director of Nurses, the doctors involved, the Patient Care Quality Control board, and the Provincial Minister of Health—to begin with. It’s something I can do, but it doesn’t make me feel any better at all. My heart is torn and bleeding and I know Bill’s is, too.