THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
At the beginning of April 2016, Stephanie and I decide we all need more room, so we contact a realtor and go looking for a place with two complete, separate living spaces. We’re shown a lot of different places—all with the potential for an in-law suite after serious and costly renovation. We talk again about renovating the detached shop, but I don’t believe 500 square feet will be enough space for Stephanie and Lily as Lily grows, and I don’t think it will always be just the two of them. Besides which, I’ve drawn plans and priced it and renovations to the shop will cost far more than we’d ever get back if we sold the property. “What about if you find a partner?” I ask Steph.
“Not going to happen,” she says. “I’m done with looking for that forever.”
My eyebrows rise. “Hmm. Forever can be short when you’ve got a long life ahead of you,” I say.
The following week, the realtor shows us a place that looks like it will work. It’s a lovely house with a rancher-style main floor with a living room, family/dining room, three bedrooms and two bathrooms. One of those bedrooms will make a great office, I think, with an actual door. The walk-out lower floor has a large living/dining room, two bedrooms and one bathroom. Each floor also has its own kitchen and laundry facilities. And even though we will have to drive Lily to and from school in our current neighborhood for the rest of her kindergarten year, the house is only two blocks from the elementary school she can attend next fall. Again, it’s a neighborhood full of kids.
Before we make an offer, we take Bill to see his possible new home. He walks through it and says he likes it, but I suspect he really doesn’t understand it’s where he might be going to live. Still, the main floor is laid out similarly to our house and the master bedroom is almost an exact duplicate of our bedroom, so I don’t think the move will disrupt him too much. The house has been on the market for several months and is empty. Prices for homes in Campbell River have more than doubled since Bill and I bought our house, but I’m sure there will be wiggle room with the price. Stephanie and I make an offer as joint owners. Our offer is accepted.
When I list our house, it sells in four days. I hire a cabinet maker to put a built-in desk and cupboards in what will be my office in the new house. In short order, we move.
We all settle in and the next eight months are smooth sailing. Bill continues to go to the Adult Care Program three mornings a week. In the summer, Lily connects with three kids who live in different directions just doors away from us and has a marvellous time roaming the neighborhood with them. Two boys, two girls. They travel in a pack, spending as many hours a day at whoever’s house will have them for as long as they’ll have them, then they move on to the next house. Stephanie installs a four-foot-deep pool and a trampoline in our backyard, which brings them here a lot. Their laughter and shrieks of joy delight us. There’s a big deck off the family/dining room of the main floor, and stairs from the deck down to the backyard, which is fully fenced. I put a childproof handle over the doorknob on the front door, which Lily learns to get past in about three seconds, but Bill can’t figure out. He’s happy to go out the sliding doors to the deck and backyard whenever he wants to and doesn’t seem to feel the need to go exploring on his own anymore. He enjoys the pool, too. In the fall, the pool’s taken down and packed away until next spring. Over Christmas the house is full when we’re joined by Haley and her boyfriend, and Chris and grandson Jaden. When family stories flow, Bill fully recognizes everyone and laughs right along with all of us. It’s a very happy holiday time. Then, disaster strikes.
Tuesday, January 24, 2017
It’s 1:15 p.m. The phone at home rings and I answer. It’s the manager of the Adult Care Program. She asks me if I can come and pick him up. I hear something in her voice that triggers alarm in me and ask what’s up.
“There’s been an incident,” she says. “He was in the bathroom with a staff member and he threatened to choke her.”
“What? Did he hurt her?”
“No. She’s okay, but she’s shaken. She ducked and ran and he followed her out into the hall. She called for help and another worker threw Bill a pillow and told him to squeeze it. I closed off the hall as a safe zone, then asked him if it was safe to approach him. He said yes, and I asked him to sit down on a bench and sat beside him. His face was quite red. He had a different look about him…not like Bill. I asked him what was going on just then and he said he didn’t know, he’d just felt like he wanted to kill someone.”
At that, I suck in a breath, but she continues. “I waited until he looked calm,” she says, “and asked him if he wanted to go to the main room to eat lunch with the others. He said yes, so I went with him and sat beside him while he ate. Then he got up and put on his jacket and said he wanted to go home.”
Silence while I try to digest what’s been said. I’m sorry a worker has been frightened, but very glad Bill didn’t hurt her. I say that and ask, “Did you give him the Risperidone?”
“I gave him some this morning. But it isn’t working.”
This is the second time Bill has threatened a worker there. I think back to some months ago, when the Manager and I talked after the first time. Like today, he and the worker had been in the bathroom, and like today, he hadn’t touched her. Back then, the Manager said as soon as he’d uttered the threat he had apologized for doing so. She’d also told me she had phoned and emailed our GP several times asking for something to give Bill when he got anxious, and that our GP hadn’t responded to her.
At the time, our doc had just left for an extended holiday. After talking to her and hearing her concern, I’d gone to three other doctors at our walk-in clinic to ask for medication for her to have on hand to give to Bill if he needed it. All three had refused to give me anything. As soon as our doctor was back, I went to him and he had prescribed Risperidone. I’d reminded him Bill had had Risperidone before, and, like Atavan, it had increased his anxiety. He’d said, “Try it again.” And against my better judgement I’d filled the prescription.
“I’ll come and get him right now,” I say, and the conversation ends. I repeat what I’ve been told to my daughter, who has a day off work, and Bill’s cousin, who arrived out of the blue the day before and is staying with us.
“Mom,” Stephanie says, “I’m going to go and get him and take him to the ER.”
“No you’re not. Pam says he’s okay now, and he’s waiting to be picked up. I’m going to get him.”
Stephanie insists. “You can’t bring him home. Let me go and get him and take him to the hospital.”
“No,” I repeat. “He didn’t hurt the worker, and he knows what he did. I don’t know what precipitated his action. I’m bringing him home.”
My daughter argues strenuously. “It was a serious threat, Mom. He needs to go to Emergency.”
Bill’s cousin, whose father has dementia, says, “I’ll go with Stephanie to get him.”
It strikes me then that maybe Bill is unsettled because his routine has been upset. This isn’t one of his regular days at Adult Care and there is a stranger in the house as well. Bill doesn’t remember his cousin.
I had called Adult Care this morning and asked if there was room for Bill because there were things I wanted to show Bill’s cousin and do that Bill would not have been able to do. The Manager said there was room, and I’d dropped Bill off at 9:30. Thinking about all that, I think maybe Bill’s cousin’s presence in the car might agitate Bill further.
“Uhm,” I say, “I don’t think that’s a good idea. He knows Stephanie; he doesn’t really know you.”
“Please, Mom,” Stephanie says. “Just let me go and get him and take him to the hospital. You can meet us there.”
Reluctantly, I agree.
I go to the hospital to meet them. The cousin comes with me to offer support.
When we get there, Bill’s in a wheelchair, being taken into the ER. As soon as he sees me, he cries and wraps his arms around my neck. I tell him it will be all right and get him into a gown and settled on a stretcher. Stephanie leaves to drive the cousin back to our house.
For the next four hours I sit beside Bill holding his hand. I answer questions from several people including Emergency Room nurses, and the ER doctor. They all want to know what happened. I tell them the story.
“Has he ever been aggressive toward you?” they want to know.
I tell them that once, a few months before that, I was nagging him mercilessly to put on a bib and eat because we had to go somewhere, and he took exception and pushed me down. “But he made sure I landed on a loveseat. He didn’t hurt me.” I repeat the last part to make sure they know. “He didn’t hurt me.”
Bill is silent and calm the whole time.
Stephanie reappears and tells me she’s talked to the Liaison Nurse. “Dad needs to go to Tertiary Care,” she says.
In the past several years, our GP has said several times I need to put Bill in care. Each time I’ve told him Bill is in ‘care’ and he and I are doing okay with him at home. I know about care but I’ve never heard the term ‘Tertiary Care’ before. I ask Stephanie, “What is that?”
“It’s high-level care. If you ever want to get Dad into a care facility here, he needs to go there. It’s in Campbell River,” she adds, “at New Horizons. Dr. S is in charge of it.”
Years ago, when I went to Home and Community Care and applied for a Case Manager, Dr. S was the second doctor to come to our house to assess Bill. In the intervening years between then and now, he only saw Bill twice before we were switched to a different Outreach Team doctor, but he has some knowledge of Bill. What I know of him is that he seems to be a kind and gentle man, and I know Bill liked him.
“Come and talk to the Liaison Nurse,” Stephanie says.
I go with her and she introduces us.
The nurse repeats what Stephanie told me. If I ever want to get Bill into a long-term care facility in Campbell River, I need to agree to admit him to the hospital today, and for him to go to voluntary Tertiary Care. She warns me that getting a bed in Tertiary Care may take a long time, maybe months. And he could be moved down island to Parksville or Duncan.
I ask why it’s necessary for him to go there to get him into a care facility here.
“Because he’s purple-dotted now,” she says. “He has a history of aggression.”
I’m flummoxed. “What? He’s never hurt anyone.”
“He’s made threats,” she says. “And he pushed you.”
“Once. And as I told the other nurses and the doctor, I had an agenda and was nagging him when he did that. Haven’t you ever gotten mad at someone who was nagging you?”
She doesn’t answer that. She repeats, “He won’t be accepted into any long-term care facility here until he’s been in Tertiary Care. They have a higher ratio of staff to patients there, and they’ll figure out what meds will keep him calm. While he’s here, he’ll be moved to a room and have a one-to-one nurse twenty-four-seven. So do you agree to hospitalization and voluntary Tertiary Care?”
I think of what it will mean if Bill can’t ever be accepted into a long-term care facility here. I don’t know what the future will bring. At home, I often take Bill to the bathroom every hour. We now have separate beds and at night he now wears Depends plus padding, but no matter how much padding I put on him and under him, he totally soaks his bedding at least once; sometimes two or three times a night. Every time I have to strip the bed, clean him up and get fresh clothes on him, remake the bed, and get him back into it. He co-operates, but it’s exhausting for both of us.
He can’t make the bus ride from our house to Adult Care anymore without having to go to the bathroom either, and I was told by staff who were on the bus with him that sometimes on the way home he became very anxious. So now he wears pads inside his underwear during the day when he goes to Adult Care, and I drive him to and from the centre. I don’t know how much longer I can take care of him at home, or even if I’m the best person to take care of him. There was a time I really lost it with him. While he has never hurt me, I can’t say the same.
It’s the third time during the night he’s gotten up and his bedding and pyjamas are totally soaked. I get his wet things off him and start to strip the bed. While I’m doing that, he stands in the middle of the floor and pees. Furious, I push him, hard. He stumbles backward, hits his leg on a chest that sits at the end of my bed and falls backward and crashes into the wall.
“Oh!” he says.
Ashamed, but still angry, I apologize and help him up, into the bathroom and into the shower. While he showers, I remake his bed and clean up the puddle on the floor. When I help him dry himself, I can see he’s going to have a significant bruise on the back of one calf.
By coincidence, the next morning we have an appointment with the Outreach doctor who was assigned to us after Dr. S. He’s seen Bill just once, more than two years ago. Back then, he’d said Bill was in pretty good shape. I’d said it was because Bill did everything he could to help himself. The doctor had countered that with, “And because of the good care he gets.” When Bill and I go into the room where the doctor is this morning, the Occupational Therapist with the Outreach Team is also in the room.
After we sit down, Dr. H asks me how we were doing.
Holding back tears, I blurt, “Last night I hurt him.”
“What?” he says.
“I hurt him,” I repeat, and explain what I did. When I’m finished, the doctor hesitates for a moment, then asks, “Why did you push him?”
“To get him out of the urine,” I say. “But I was mad.”
The OT looks at me and says, “But you were frustrated. That’s understandable.”
“Yes,” I agree. “I was frustrated, but I was mad.”
The doctor asks me to go back to the waiting room then, while they do some tests with Bill. When he comes to get me, he shows me the drawing of the clock Bill did. No circle or clock hands anywhere this time, just numbers placed randomly on a page. Random numbers; not 1 to 12.
“So where are we at?” I ask.
“Bill is moderate to severe,” he says. “I asked him what you were to him. He said you are his everything.”
The tears again threaten to spill. I am so ashamed. But no more mention of the hurt I’d done to my husband is made.
As I stand with Stephanie and the Liaison Nurse in the ER, pondering the pluses and minuses of agreeing to Tertiary Care I think, Bill hasn’t hurt anyone. Why aren’t they giving him the same grace they gave me? But they aren’t, and I don’t know how much longer I can look after him, so I agree. Bill can be hospitalized, and he can go to voluntary Tertiary Care. The Liaison Nurse has me sign some forms. It’s 6:30 p.m.
I tell Stephanie I want to go and get Bill’s cousin some supper and she says she’ll stay with her dad until he’s moved to a room. I ask, “What about Lily?” and she tells me Lily is at a friend’s. “They’ll keep her as long as necessary,” she says.
Shortly after I get home, Stephanie arrives home too. She says her dad is fine, and that hospital staff told her he was going to be moved to a room soon.
At 8:30 I go back to the hospital to see where Bill has been put. I find him still in the ER. But now he’s in the hallway, under glaring lights, strapped to a stretcher with four-point restraints so tight he cannot move his arms, or legs—which are splayed apart—more than an inch. He is drugged to semi-consciousness, and his upper right arm is bruised and scratched. He keeps twisting his head, trying to get off his back, and grimacing. There is no nurse in sight.
I find one and ask her what happened.
“He became combative,” she says, then turns and walks away.
All I can think of at the moment is that he probably just wanted to go home. I stay for an hour hoping to make them take off the restraints, but no nurse appears and when I go looking I can’t find one. And Bill is still in the ER hallway. Depleted, I go home.
When I see Stephanie and Bill’s cousin, I start sobbing. “They’ve already hurt him,” I say.
“What?” Stephanie says.
I tell her what I’ve seen. She is as shocked as I was.
“They’ll have taken hold of his arms,” the cousin says, “and that’s why the bruising.”
I’m confused and angry, and inestimably sad. “There’s no excuse on earth for what they’ve done to him,” I say. I go to my bedroom, close the door, and cry for hours.