THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
News from the ward when I called last night was that Bill was doing well. He was chatting with the nurses all day in actual conversation, laughing at things that were funny, talking about what was going on around him, and generally very upbeat.
So, in spite of his problems coming out of the ECT yesterday and the restraints, the bi-frontal lobe treatment seems to have done what they did before, which is returning to Bill the ability to communicate effectively, which is huge. The exception re conversation was that he apparently did not respond at all to Dr. K when he tried to talk to Bill, but one of the nurses told the doctor that was because Bill doesn't know him. Hopefully Bill gets to know him fairly quickly and responds to him, because he's now the guy who has to sign off on Bill being discharged.
Somewhat concerning is the fact that at 10 p.m. Bill got up, apparently to go to the bathroom, but instead he crawled into his roommate’s bed, with his roommate in it! The nurse telling me this was laughing and said she thought it was cute. I didn’t. I told her about what had happened on Tuesday when I was there.
On Tuesday, we were in the common room when lunch had just ended. Bill got up and walked over to his roommate, who was standing near the cupboards with his back to Bill. Bill patted in him on the shoulder and sort of leaned around to say “Hi.” The roommate whirled, yelled, “Fuck off!” and shoved, then punched Bill in the chest so hard Bill fell backwards to the floor. Bill was okay, and his roommate calmed right down, but Security was called.
“That’s the way —‘s fights always start,” a nurse said. But Bill’s roommate had been on the ward a lot longer than Bill, and when I’d been there he’d always kept his distance from everyone, except the one day he’d adopted us and danced with us in the Common room. So, when the nurse said that I wondered when he’d had ‘fights’ (multiple) before.
With today’s report, I wondered whether Bill had climbed into his roommate’s bed before, and maybe that was why — had taken exception to Bill patting him on the back a few days ago and had punched him.
I told the nurse who thought it was cute that it worried me; I didn’t know why Bill would do that, but it was an invasion of his roommate’s space, and maybe him doing that was going to cause real trouble. She sobered and told me she didn’t think they could move Bill to a single room because there weren’t any available.
My third day home, Linda called and asked me to provide information on what I would need regarding support to have Bill at home while he waits for a bed in care in Campbell River, and I’ve emailed her the list of what I think I can manage with. I'm taking that as a good sign they're getting serious about releasing him. Maybe the fact he was punched to the floor and is now getting into bed with the guy who did that is finally spurring them to action. I'm hoping.
I called the hospital tonight and spoke with Bill’s nurse, H. She said he was aggressive today during care. “He pulled a nurse’s hair this morning and grabbed the arm of a second nurse, and they were nurses he’s familiar with,” she said. “There’s been an incident every week or week and a half.”
She hasn’t been on the ward for at least a month, and she hasn’t been Bill’s nurse for two months. I argued with her. I told her there were no incidents all July or this month until August 10th, when he pulled Andrea’s hair during care in the early morning, and that Andrea thought he might just have been trying to show her affection the same way we do with him.
But H insisted, saying there were purple dots on July 27th and 28th for both morning and evening— that he was kicking.
I said I was there from the 27th to the 30th, and he’d been fine with me all day each day, and no one had told me he had been aggressive during care either the 27th or the 28th.
To that she replied, “Bill had ECT yesterday and was brought back in restraints as a precautionary measure. He’s scheduled for another treatment on Monday.”
I asked her to have Dr. K call me before that happens. She said she didn’t think the ECT was causing the aggression, that when they stopped the ECT before Bill became aggressive right away. Which I immediately understood was her advocating for more ECT.
I corrected her again, telling her he’d been clear of aggression for almost six weeks after we stopped it before. I told her I want to talk to Dr. K about it. She said she would let him know, and that they used three people and called Security to do care tonight as a precaution. Which of course meant purple dots on his chart.
Her reports are so flawed. She believes Bill is highly dangerous and treats him accordingly—orders him to do something; expects him to comply immediately or simply calls Security before she does anything and has him restrained. And he reacts to her accordingly. I’m very unhappy she’s back on Bill’s ward.
August 28, 2017, The Plan
This morning, a long phone conversation with Dr. K. First time I've spoken to him one to one since he took over from Dr. A on August 14th. We talked about the plan. He okayed off-hospital-grounds passes for me to take Bill out for several hours, wherever I choose, when I'm in Victoria. That only took five months. He said when the current round of ECT treatments is complete, I will be allowed to bring Bill home with me for a week, so we can see how it goes. And he said he’ll speak to Dr. S about the possibility of Bill going to Tertiary Care in New Horizons until a bed in another unit opens up there, in case the home scenario proves to be out of the question. Meantime, he said, he’ll look into the issue I raised of Bill currently being automatically put in 4-point restraints following the ECT treatments.
I explained that due to the 12 to 15-minute time constraint put on staff for dealing with each ECT patient start to finish, no one bothers to talk to Bill to calm him down or ask what he needs when he becomes agitated. Instead, when he tries to sit up pre or post ECT they just push him down and hold him and tell him he must stay lying down, which makes him fight harder for his freedom, and that's why he finally kicked a nurse who approached the stretcher after he'd been pushed down half a dozen times on the 14th. I also said I’m confused because the doctor administering the ECT had asked me to be there, but when Bill was in the recovery area I was told I had to leave.
Dr. K said he would look into all of it and try to find a different approach to deal with Bill. So, it seems he was responsive to my concerns, and is thinking about discharge, and I'm cautiously hoping…again.
I am beside myself. Arrived Monday at noon and discovered Bill had had ECT at 7:45 that morning, and they did the bi-temporal lobes again! He’d also been given a new anaesthetic and at 2:30 p.m. he still couldn’t be roused.
When I finally was able to get him up at 3:30 to get his thoroughly soaked clothing and bedding stripped, and get him washed and changed, he was severely canted to the right, had zero language except for “Mhmm”, couldn’t understand the simplest directions until I repeated them half a dozen times, and his depth perception problems and confusion were notably increased again.
Also, I was told he was scheduled for another treatment this morning—when I’d been told by Dr. K he would be tapered and have remaining treatments once a week when he’d lobbied hard to be allowed to continue ECT and I’d agreed, only on the condition there would be two more treatments, one a week, then none.
After I got Bill up, the ward was a zoo. During the months Bill’s been there, several patients have died on the ward, others have been moved elsewhere, and there have been several new patients admitted.
Yesterday, a new one was chasing some of the staff around and they were backing away from her, telling her to go the other way and to leave them alone. They warned me to stay away from her. Another new female patient was walking with her head down and ploughing into whatever, and whomever, was in her way. And one of the old patients was peeing on the outside walls of the hub.
At suppertime, one of the new men was walking past Bill’s table in the Common/Dining room and he grabbed Bill’s tea and threw the contents at me. Luckily, I moved fast enough to avoid being hit. The Care Aide who was in the room said the day before that he’d thrown boiling tea at her and got her.
Then another of the recently new guys was going to upend his dinner plate onto the floor and I was right beside him so caught hold of it and asked him if I could help him with it. He smiled and said yes and let me take it and put it back on his table, but S (who was his nurse and also was in the room) yelled, “Don’t Jocelyn. Don’t help!” Like H, she hasn’t been on the ward for a while, but it’s the same old crap from her. The Care Aide shook her head and mouthed, “She’s insane,” to me.
So, a few minutes later when that patient took his coffee and dumped it on the floor, then stripped off his pyjama top and threw it on the floor, I just sat in my chair across from Bill and watched, and S was forced to come out of the hub, to which she had retreated, and deal with it.
Then the guy who threw the tea came and pounded Bill on his back half a dozen times (to which Bill didn’t react at all) before a staff member came out of the hub and pulled him away, at which that patient yelled, “Fuck off,” and fought, and Security had to be called to get him to his room. Five minutes later he was back in the Common room swearing, at which point I took Bill back to his room, turned on the music on his CD player, and we sat and listened to it for a half hour before we ventured out again for a walk.
Bill was wobbly and very frightened of the shadows on the floor, but he wanted to walk, so we did. At 7 o’clock he couldn’t keep his eyes open any longer, and I washed him and tucked him into bed.
On my way out, Andrea, who was on the ward but wasn’t Bill’s nurse that evening, told me that whenever new patients come onto the ward the old patients who’ve settled in react to the new patients’ negative energy and the result is tremendous upheaval and chaos!
I’d seen patient turnover before without the chaos and thought, oh yay, something more to look forward to. In the back of my mind, I thought H’s and S’s simultaneous return might have something to do with the upheaval.
Yesterday, I went up to the hospital at 8:30 a.m. The ward was in worse shape than it had been the night before. I counted six security guards in the hallway.
Bill was sitting in his chair wrapped in a flannel sheet, and Andrea was heading into another room with three of the security guys. She said she hadn’t been able to get to Bill, and another of the good nurses said they knew I was coming so just decided to leave Bill to me because things were crazy.
I stripped, washed and dressed him, and stripped his soaked bedding and put it in the bathroom hamper. He still had no language and was wobbly when walking. I went to the Common room and got his breakfast tray so he could eat in his room, saw Andrea and told her I wanted to talk to Dr. K, and I did not want Bill to have any more ECT, period. I also wrote a note on Bill’s white board, saying no more ECT, just in case the message wasn’t clear.
I waited until after lunch, heard nothing from Dr. K, and the ward was even more insane. I told Andrea I was going to take Bill out. She was holding her side because she’d been elbowed by the female who chases the nurses and who was chasing Andrea in circles as we were talking. Andrea finally said, “Enough,” to the patient and told her to go the other way, and to me said, “I wish I was coming with you.”
I felt her pain. “Me, too,” I said.
In spite of Bill’s reduced capacities, we had a good afternoon. I took him to Beacon Hill Park, where as soon as he spotted kids playing in the water park and on the playground he laughed.
We walked, sat and watched the ducks and the geese on the pond, and walked some more, and he got a lot more solid on his feet. I brought him to my hotel room for a few hours, where we watched TV and lay down for a nap. He didn’t sleep, but was very content. When he said he had to go to the bathroom I took him with no trouble.
At 5 o’clock I got a phone call from Bill’s evening nurse—H. She said, “The pass was only for three hours, where are you and when are you bringing Bill back?”
I was surprised. I replied, “I didn’t know there was a time limit. Dr. K told me I could take him off ward for as long as I wanted. I planned to take Bill to the restaurant at the hotel for supper and bring him back after supper.”
She replied, “Doctor K is here waiting for you.”
“Can I talk to him please?”
Dr. K okayed me keeping Bill out until after supper, but then began to pressure me again regarding ECT. It went on for half an hour with me continually saying I just want Bill home; that I’d refused ECT on the bi-temporal lobes and had been assured it wasn’t going to happen again but it had, and the treatment on Monday had harmed Bill just as it had when the bi-temporal lobes had been done twice before, so I couldn’t trust promises, and I did not want Bill to have any more treatments.
But I was no match for the pressure he exerted. He started talking about months more of Bill being here, which I took as a threat. I asked him what happened to the trial week I was supposed to be able to take Bill home for and he said, “We can’t rush it, Jocelyn.”
During the conversation, he admitted Bill never should have been certified, but then he said there’s no documentation about outcomes of ECT with dementia patients, he was being given conflicting reports by the nurses about whether or not it was helping Bill, and he wants to give Bill every chance he can.
I repeated, again, that the first round of bi-frontal treatments had been helpful after five or six treatments, but when they switched to the bi-temporal lobes it had done a lot more harm than good, and Monday’s treatment had definitely caused even more harm.
He said, “Bill’s only had eight treatments (which I knew was wrong, but not how wrong it was), and if we stop now there won’t be any follow-up; no chance for maintenance treatments if Bill needs them, and maybe no medications will be warranted either.” I took that as another veiled threat. He then came back with, “So, we can do the ECT once a week for a few weeks, and see how it goes. We’ll only do bi-frontal.” And I gave up.
I was then convinced H was talking him into the treatments, and thought maybe she’d talked Dr. A into them because over time I’d realized she and Dr. A had a close connection. I was so confused and angry. I didn’t know how Bill hadn’t totally collapsed under the weight of all he’d been forced to endure. And yet, I had caved again.
A different day today from yesterday. Got to the hospital at 10:00 a.m. and had a very long meeting at 10:30 with Susan and Linda. Told them everything about yesterday, and asked how the plan for Bill’s discharge was coming. I said I want him home by the end of this month (September). Susan said she thought that was reasonable, but amended it with, “Or even by Thanksgiving.”
I said nope, end of the month, but of course neither of them was going out on that limb. But we did talk about how it would work. Linda asked how Bill was during our outing yesterday and I told her he was thrilled. She talked about an overnight in the hotel, and I explained I can’t do that because Bill is now severely incontinent at night and would soak the bedding and I can’t have that. Susan said, “It’s easier for people who live in Victoria to do trials,” and I agreed, but said I wasn’t moving to Victoria, and Linda said she thinks longer and longer passes and me taking Bill out lots will help.
Susan wanted to know if I would take Bill home for one or two days instead of a week, and I said, “No, it’s too short. The drive would exhaust him, and me. It needs to be at least a week.”
“If you take him home for a week, will he want to come back?” Linda asked.
“Of course he won’t want to,” I said, “but he will because he trusts me.” I didn’t say, but I’ve no intention of bringing him back.
We talked about the car ride home and I said Stephanie will come with us and Bill would be fine because I would stop when he needed to, which would be at least once and probably twice.
Susan said she’d give me printed material on CSIL, a program Stephanie has talked about, where there’s money available for family members who are willing, and who qualify, to hire workers to help them with someone at home. It seems like a good option for support because I would have control over hiring them, they would remain constant, and the hours would suit me (at least daytime hours)—unlike home support from VIHA, where the workers constantly rotate and the hours are whatever they can manage to provide.
Susan said it’s paperwork intensive at the beginning, but worth it, and I said I had no trouble with paperwork, to which Linda said, “I know, I read your report to the Quality Control Board, and thanks for doing that.”
It does advocate for more education for staff and proper staffing levels, and I doubt there’s a nurse alive who doesn’t want that.
We talked about VIHA support and the obstacles with that as well, and Linda said she would connect with the Liaison Nurse in Victoria and see if she could connect with the Liaison Nurse in C.R., who would then connect with Home and Community Care in C.R. The supposed connections with liaison nurses, nursing homes, and others have been promised several times but to my knowledge haven’t happened, so I’ll wait and see what happens with that.
I repeated I don’t live alone and that Stephanie will certainly help me as she can; that I have friends who have offered to help where they can, and that Bill’s sisters are also willing to help.
Linda said she was also going to check on whether Monday’s treatment was bi-temporal because during our conversation last night Dr. K didn’t admit to it, but he didn’t deny it either. She seemed to think the doctors could do whatever they wanted because Bill is certified. “They cannot do ECT without my consent,” I said. “That’s why they lobby with me so hard when they want to do it and I’ve said no.”
I know that unless I contest treatments prescribed for Bill by filling out forms, getting a second doctor’s opinion, and attending hearings like I learned about from the information I got from Comox when Bill was there, doctors can order whatever medications they feel are required without his or my consent. And they can order restraints when they want to as well. But legally I have to authorize ECT. It’s the only treatment I can refuse on Bill’s behalf just by verbally refusing it.
Susan said, “You really need to sit down with Dr. K. He’s a nice man.”
Which is true, I do. The only conversations we’ve had were the initial group meeting where he was introduced and he really didn’t say anything, and two phone conversations. We have never sat down face-to-face, one-on-one. “I would like to,” I replied, “but he’s never on the ward when I’m there, and vice versa, and since the nurses don’t know when doctors are going to show up it’s tough to connect.”
Susan said she’ll talk to him about it.
After the meeting, Susan came with me to Bill’s ward and told me she’s leaving on Monday for a new job at Vic General Hospital. Which means I’ll have a new Social Worker and the whole building trust thing begins again. And that’s a big part of the problem. I feel like I’m getting somewhere with someone and they’re gone, and it starts all over.
The good news is Bill and I had a very good day out today, and he clearly was looking forward to it because at lunch when Andrea said, “So you and Jocelyn are going out,” he’d replied very enthusiastically, “Yes! Out to the park!”
She was tickled he was so happy about it, and he laughed a lot while we were out.
The hard part about the day was when I took him back to the hospital and changed him back into a gown and told him I’d be gone for a few days. He cried. So, so did I.
I cheered him up by telling him I was working really hard to get him discharged and home, and Stephanie and Lily were heading to Victoria after work/school the next day to see him, and he smiled. No matter what’s been done to him, he has not forgotten his family.
Last night I read the CSIL information. In spite of my assurances to Linda and Susan I’m okay with paperwork, I think it might be much more trouble than it’s worth.
I’ll have to check out what it costs to register as a business, apply for and get workmen’s compensation, pay an employer’s share of CPP, benefits, etc. A ‘contingency plan’ for backup if the caregiver becomes unable to deliver care, and for natural disasters, has to be prepared, and a budget has to be prepared as well. Then there’s an assessment by the Home and Community Care person in charge of it to determine how many hours of care the patient needs (not how many hours the primary caregiver requires); which determines how much funding I could get, which of course would affect the budget. All of this has to be in place before an application for the funding can even be made.
If it’s approved, I must then set up a business bank account, advertise for staff, hire staff, and keep accurate records of expenses. Reconciling monthly statements goes with the business territory. I can do that part easily enough. But until I know what it costs to set this all up, and how many hours I’d be allotted for Bill, I would not know whether it would even pay to do all the work of setting things up.
Stephanie said those who don’t work with CSIL don’t realize how daunting it is for people to access it, and very few do go ahead with it because it mostly simply isn’t worth it.
Halleluia! Long meeting with the team on 2 South yesterday. Discharge planning! Dr. K looked up the numbers and saw that Bill has had 31 ECT treatments, so he put a stop on the planned tapering. THIRTY-ONE!
He does seem like a nice man, but I have to ask how on earth could he advocate for more treatments when he didn’t know how many Bill had had? Who had told him Bill’s only had 8? And how could they have given Bill that many, because I hadn’t agreed to more than 15?
It's just really heartbreaking the last treatment was bi-temporal lobes, which took away most of the wonderful gains Bill had made with bi-frontal treatments. His depth-perception problems haven’t eased, he's still a bit canted to the right, and the wonderful return of his language is mostly gone, too, though he does sometimes speak in sentences. It's not the flow it was though. I don't know if any of that will improve with time.
I’ll be bringing him home for at least a week next Friday, Sept. 22nd. (Permanently in my mind). Meantime, there are changes the OTs who went to our house to assess it are requiring me to make. Remove all area rugs; put up a railing for the two steps from the family/dining room to the living room; put a second hand-rail for the stairs down to Stephanie’s part of the house and some kind of barrier across those stairs; and put up a safety bar in our main bathroom. And I need to get a bench seat for the tub/shower.
One of the most important things I need to have arranged before they’ll let him go is support care and I'm looking to hire a couple of people.
I know it will be harder to look after him now than it was when he went into hospital, and he’ll likely be unsettled until he gets used to his surroundings again, but hopefully it will go well. Anyway, I’m excited—and somewhat nervous—and determined to make it work.
A meeting today with our assigned Case Manager with VIHA—who has never met Bill—and the OT with the Seniors’ Outreach Team, starts off on the wrong note. The Case Manager again says flat out that I will not get support from Home and Community Care.
The OT asks, “So if Bill doesn't sleep at night what's the backup plan?”
“I’ve installed a lock on the bedroom door and will leave him for a stretch of four hours if necessary so I can get some sleep, but I’ve been told the meds he’s getting are letting him sleep anywhere from five to nine hours a night. I’m meeting with Dr. C this afternoon and he’s fully on board with me bringing Bill home.”
“What happened to Dr. P?” she wants to know.
“I got a new doctor because any doctor who would certify Bill the way that was done and without discussing it with me first is history.”
I clarify a lot of the situations they think they know about but which, as usual, have been exaggerated by changing a few words. The Case Manager says, “Bill pushed a caregiver’s head to the floor when she was here doing overnights.” She is referring to a VIHA support worker I hired more than a year ago to come for two nights a week so I could get some sleep because Bill was up every hour or two.
“That’s not true,” I counter. “The second night she was here, Bill put his hand on the back of her head when she was bending down to put clean pull-ups on him. When I talked to her at seven o’clock in the morning, she told me of the incident and I asked her if Bill had pushed her hard or hurt her. She said no. But that she had to report it. She hadn’t wakened me and I only heard of it when her shift ended.” I add, “It was the middle of the night. Bill would have been groggy and sometimes he puts his hand on my head when I’m bending down helping him, but he rubs my head as if to say Thanks. He has no intention of hurting me when he does that, and I don’t think he intended to hurt the support worker. If he’d wanted to hurt her, he certainly could have.”
I also explain (again) exactly what happened at Adult Care on January 24th, and in the Campbell River hospital, and why his resistance to care had become established, and had escalated.
I tell them that both Dr. A and Dr. K admitted to me Bill never should have been certified and say, “Imagine you were locked up against your will, drugged with meds that made you feel like shit and took away most of your ability to function at all. Then strangers come at you, restrain you, strip you, wash you—all without your permission. Imagine if you were forced to both urinate and defecate in your pants because help wasn’t available when you needed to go to the bathroom, and you weren’t changed even if you did soak or soil yourself until and unless it was ‘time’ for you to be changed? “Has either of you ever been on the Tertiary Care ward in Victoria?” I ask.
“No,” they both reply.
“I’ve seen Bill poked, prodded, punched to the floor, and one patient tried to pull his clothes off him and sat on top of him, and currently there’s another female who has adopted him and won’t leave him alone, and Bill has never reacted to any of it.”
The OT says, “It sounds like One Flew Over the Cuckoo's Nest.”
To that I reply, “It isn't far from it, and even if Bill is anxious about changing venues again and is unsettled for a time when he comes home, home has got to be at least two-thousand times better than that unit is for him. He has never gone after anyone. He has only resisted care by others, and he has never hurt me during care or otherwise, except once when he kicked me before he was fully conscious after ECT.”
By the end of the meeting, the Case Manager says she’ll reassess the case when Bill gets home and support through VIHA might be possible. We say goodbye with hugs all round, always a good sign in my book. But, like always I’ll have to wait to see what happens. I’ve decided I am decidedly not good at making assessments of what will, or won’t, happen. Have I mentioned before I’m not a patient person?