I’m coughing but not vomiting anymore, so today I go with Stephanie to the hospital. She didn’t get as sick as Lily and I did and isn’t coughing anymore. I know I shouldn’t go when I’m still sick but it’s been four days and I want to see Bill. I hold a folded handkerchief over my face to make sure my mouth and nose are covered.
Bill’s room in our new hospital is right across from the nurses’ desk and his door is open. The male nurse at the desk, who I know well from before, tells me Bill has severe pneumonia as well as influenza. I notice they have an IV line in and ask what it is. “Heavy-duty antibiotics,” he says.
Still foggy, I don’t quite take that in. There’s a note on the wall beside Bill’s door that says, “Check with the nurses’ desk before entering.” I walk in. Bill is completely out of it, so I go back out and we don’t stay.
On our way to the elevator, Stephanie says, “When the ambulance attendants delivered Dad, I saw them give the MOST and Representation Agreement forms to the ER desk.” My mind isn’t the sharpest and I just shrug but then we see the Liaison Nurse—a new one I don’t know, but Stephanie does. She calls the nurse’s name and they stop.
“Dad is em-one,” she says, “but he’s being given heavy-duty antibiotics.”
The nurse looks at me, and it clicks. The ER doctor, whose name I don’t know, ignored the M1. I repeat what Stephanie has said. “Yes, he’s em-one. He should not have been given antibiotics.”
The Liaison Nurse says she’ll speak to the nurses on Bill’s ward.
Shortly after Stephanie and I get home, Dr. C calls. “The nurses tell me you don’t want Bill to have antibiotics,” he says. I repeat that Bill’s MOST form had accompanied him to the hospital and it’s M1. Dr. C immediately orders the IV stopped. But it’s been four days.
I think about Bill’s behavior for the past few weeks and think he must have been suffering far more than I knew and couldn’t say so in words. It could be pain from pneumonia was what caused the unusual tilt I kept telling Dr. C about. I’m wondering when the pneumonia and flu actually started for him, and what the increasing doses of Nozinan did for him, or to him. Perhaps it was Bill’s frustration at not getting any real help from anyone that led to the shoving, though I know that when he flew off his bed and attacked me it was pure instinct and he was truly out of control.
Sickness, pain, drugs that didn’t help, people that didn’t help, including me—the person he most depended on. No one should have to suffer that. And now he’s made to hang on longer because his very definite wishes and directives were ignored once again. No matter what he does, or has done to protect himself and project his wishes, he has no voice.
I’m still coughing, but Steph is back to work. Lily has fully recovered and is racing around the neighborhood with her buddies, not really looking forward to going back to school tomorrow, and Bill has recovered from the pneumonia. Again, his incredible strength is shown.
I will never know if he would have recovered without the antibiotics. However, he’s almost immobile. That's because for the two weeks he’s been in hospital he's been kept in bed or moved to a Broda chair with an overhead lift, and tied into the chair so he couldn’t walk. The Broda chair is big, comfortable and moves in every direction. But being tied into it and left for hours isn’t comfortable. In the second week I ask for staff to please walk with him because I need him to be mobile, but they ignore my requests. When I’m there, I undo the restraint that keeps Bill in the chair if he’s in it, or lower his bed rail if he’s in bed and get him to swing his legs over the side of the bed and stand up, and take him to the bathroom when he says he has to go. He is able to walk, but is shaky and because of my cough I’m not spending much time there.
The longer they keep him down, the more immobile he will become and I know I can’t manage him at home if he can’t get himself from his bed to a chair with help. I also know that what happened to me means there is no chance VIHA will be able to provide any kind of home support.
He hasn’t done anything at all to resist any staff in any way this time round, but he's been too sick to resist anything. He's sleeping a great deal. Yesterday when I was there I did his nails and shaved him. He enjoyed the warm cloth on his face, but as soon as I finished he fell back asleep. It’s not important for either of those things to be done right now, but somewhere in my mind I believe that if he looks kept he will be treated like a human being.
Went back an hour and a half later and he was still sawing logs.
A Question of Strength
I've an appointment with our doc tomorrow to talk about what's next. But in fact, I’m at war with myself about whether I can, or want, to deal with Bill at home again. And that is giving me more grief than anything else has. How can I watch him suffer the indignities he is again suffering and not want him home? If it was me, where would I want to be? Dead I think.
I said as much to Dr. S, who came to see me in Bill’s room at the beginning of the third week. Bill was sleeping and the doctor and I sat side by side on the couch.
He asked me how I would manage if Bill was home again and I told him I can’t do it without support. I looked at Bill and said, “He has no quality of life anymore. I think he’d want it to end.”
Dr. S replied, “It wouldn’t be ethical for me to do that,” which of course I know is true. He left after saying he was going to talk with Stephanie and Chris.
Dr. C comes to Bill's room and tells me he's palliative and will not be coming home again. He doesn't give me a time frame, but I can see death isn’t imminent. And I'm unsure what palliative means.
At home, Stephanie says she thinks they might move her dad to one of the care facilities because the new hospital is as jam packed as the old one ever was, and they sometimes do move palliative patients. In fact, the new hospital was over census two days after it was opened in October. But Dr. C hadn’t indicated anything like that will happen.
So for me, it's just day by day and doing my best to keep Bill company and as comfortable as possible. At least the rooms are big and have built-in couches for family to spend the night if they want to.
I don't think Bill will pass anytime soon. His organs still seem to be working. He’s still eating and drinking, peeing and pooping, so unless he truly decides he's had enough and does shut down, it will be a while yet. I have always known we would get to this point, but it’s hard to watch him in hospital again. I know they do the best they can, but once again he’s become the victim of a system where there is short-staffing, a high ratio of casual staff to full-time staff or even permanent part-time staff and of LPNs and Care Aides to RNs, and policies that are task-centered; not patient-centered. There are several times I’ve arrived to find Bill in dire straights. And a few more instances where there was cruel neglect has prompted me to write a second letter to the Patient Care Quality Control Board, advocating for change.
Back in January, when he’d recovered enough to be able to get up on his own, he was again tied into his bed with a waist restraint. The first time I saw it, I immediately called for Security to come and unlock it, and when the Director of Nurses appeared, told her I was not going to stand for him being restrained.
She said he’d tried to stand up in his bed and had fallen over, and it was for his safety. I said, “Undo this right now!” and she did. But whenever I wasn’t there, he was tied down. Either in the Broda chair or his bed.
So I printed out studies that had shown using restraints of any kind on dementia patients is outmoded and actually causes patients to become aggressive with care, and gave the articles to staff and to our doctor. Whether they read them or not I don’t know, but they kept tying him down. Eventually he would become unable to walk.
I’ve spoken to the Liaison Nurse twice and asked her if I took Bill home would I get support. I was thinking, ‘palliative’ and I’ve known more than one person with a terminal disease who has received palliative care at home, sometimes for months. Both times the Liaison Nurse said no. I have no way of knowing how much longer Bill will live but I know for certain he’d be much more comfortable at home, and that I am not as strong as he is. Each time I tell Dr. C I want to take Bill home and the doctor says, “Please leave him here,” I do.
On March 1st Bill stops eating and drinking. In the next couple of days he makes an attempt to eat some of the apple sauce and yogurt I try to get down him, and to drink some gingerale or water, but then he just clamps his mouth shut and will not eat or drink at all. He is clearly saying he’s had enough.
He’s no longer taken out of his bed and put in the Broda chair at all. All care is done in bed. He won’t open his mouth to take his meds, so he’s given them by injection, and he’s mostly unresponsive to caregivers, but opens his eyes when I’m there and smiles when I play music on the radio/tape player I took up last month. A few times when I sing he tries to sing with me.
I spend anywhere from two to six hours a day at the hospital. While I’m there, I check his brief whenever he puts his hands inside one or otherwise indicates he’s uncomfortable, and if he’s wet or soiled I begin the process of changing him myself without ringing for help. I sometimes complete it, but it’s difficult to roll him because he cramps painfully whenever he’s moved and he doesn’t want to be rolled, so he resists by hanging onto the rail tightly. I tell his nurse and they begin giving him Dilaudid twenty minutes before anyone moves him, and I massage his legs and feet to ease the cramps and always manage to get the soaked and/or soiled brief off him, and to get him washed. But when it comes to putting on a clean brief I usually have to ring for help. Then, because I’ve started the process, staff complete the change with me. Most of the staff are great about it and cheerfully help. Some are not pleased at all to have to be changing him more than the minimum of twice a day required. Some have actually told me they’ve been told they have to call Security before they can touch him. I wonder what on earth they figure someone who can barely move could possibly do to them.
On March 12th, after several discussions with Dr. C during which I had told him I wanted to bring Bill home, I say it again. And again he asks me several times to please leave Bill where he is. “Would that be all right, Jocelyn?” he says over and over. I can hardly speak because I’m crying—and I’m still conflicted. But I manage to swallow my tears and clearly say, “No, it’s not all right. I want him home.”
Dr. C then goes to the nurses’ desk and tells them I’m going to take Bill home and they should help me in every way they can. Which they do.
A medi-van brings Bill home and the attendants help me get Bill onto the hospital bed we have had set up in the family/dining room, where there’s a huge window that looks out on a mountain view. Bill immediately knows where he is and who’s around him. For the first time in weeks, he relaxes and smiles.
Our son and 16-year-old grandson arrive. Haley is in the midst of exams and cannot come. For the next five days the family cares for Bill with someone beside him day and night. He doesn’t resist any of us in any way. Seven-year-old Lily participates in the care. Jaden sits on the side and watches.
Bill lets us know he’s grateful with small gestures such as reaching for our hands softly, turning his head to look at the person caring for him and to smile, even trying to mouth the words to a song I might be singing as I sit beside him, or just cocking his head, letting me know he’s listening to the music I have playing.
A palliative care team, which consists of two nurses, comes twice and they prepare syringes with Dilaudid and Nozinan, which Stephanie and I administer through sub-cutaneous sites.
The palliative nurses are wonderful. One of them involves Lily in putting protective pads on pressure sores Bill has begun to develop as his skin thins. Lily is so proud. Thankfully, his skin holds and doesn’t break and we don’t have to deal with open wounds. That same nurse warns us that at some point there will be a last injection.
That happens at 4:00 a.m. on March 17th, when I give him his Dilaudid and Nozinan. I doze off and wake at 6:00 to find he has taken his final breath. I’m sorry I wasn’t awake when it happened, but I know he would have forgiven me. We were both tired.
I wake Chris and go downstairs to wake Stephanie. She, Chris and I wash Bill’s body and dress him in his favorite clothes. Lily comes close to watch. Jaden sits on a loveseat and watches. Then I make brunch and we all sit in chairs close to Bill, to eat.
At 11:00 a.m. I call the funeral home I’ve made arrangements with. They ask me if a doctor has signed a death certificate and I explain we don’t need that because I have a signed form from our doctor that says Bill was expected to die at home.
Two attendants from the funeral home arrive an hour later. Respectfully, they put Bill on a stretcher and wheel him out. Watching them leave, knowing it will be his last ride, I feel a tremendous ache in my chest and do not attempt to keep my tears in check. The family hug, hard. These last five days have been a healing time for all of us.
A week later we have a celebration of life and 150+ people gather at the Discovery Inn. Family from near and far, friends, Bill’s former colleagues and employees, and people he volunteered with. Stories are told, songs are sung, food and laughter and tears are shared. Later, family reassembles at our house and more food and stories are shared. I realize Bill has touched so many lives and left a legacy he can be proud of in every life he touched.
For now, he resides in an urn inside a purple velvet bag. He wanted a green burial, but the Campbell River site for green burials wasn’t ready before he died. When I die, I’ll be buried in a green burial, and his ashes will be put in the shallow grave with me. We’d known one another since we were kids. We’d been married for 49 years. Having spent the majority of my life with him, I cannot imagine being without him in death.