THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
What A Mess
A call at home early this morning from Dr. A. “Bill’s out of control,” she says. “We have him in seclusion and he’s yelling for help. Can you come?”
“I’ll leave immediately,” I reply, “but you know it will take me three and a half to four hours to get there.” Ten minutes later I’m in the car, on my way.
When I arrive, Bill is walking in the hallway. When he sees me he grabs me and hugs me. That brings the Charge Nurse and another nurse out of the hub in a hurry, but I just stand still and hug Bill back. He says, “Oh God, I’m in trouble! I’m in so much trouble!”
I take his hand and quietly say, “Let’s go to your room.” Right away he says he needs to go to the bathroom, and does. I change him out of his wet tab-brief with no trouble. Shortly after that, Dr. A comes into his room.
“I feel very bad,” she says. “I called your cell phone and left a message for you not to come, that he was okay.”
“Oh. I don’t turn on my cell when I’m driving, so I didn’t get the message. What happened?”
She tells me two nurses reported he was moving too fast in the hallway, then he banged on the door of the hub, and when no one answered him he pushed on some of the other patients’ doors, but did not enter their rooms. “I changed Bill’s drugs last night,” she continues, “and I thought he was maybe having an adverse reaction to a new one. I have to protect the nurses. When they called me, they said Bill was out of control, pounding on the hub door and yelling, and they had barricaded themselves in and were scared. Security was called, Bill was given an anti-psychotic by injection and locked in seclusion. It made him so mad he yelled for help. I am so sorry,” she says again.
I don’t know what to say to this. “Well, I’m here now,” I say. “And I’m staying for at least a couple of days.”
Later, Andrea, his actual nurse for the day tells me what really happened. Bill was knocking on the hub glass and pushing at patients’ doors because he was soaked and had been for some time. “I think he was looking for help,” she says. “When he did get changed after I came on shift, he offered no resistance. The one security guard present just held his hands lightly, and Bill was fully co-operative.”
My head spins. Walking fast in the early hours, when the night shift was still on, likely because he had to poop and needed help. Knocking on the hub, looking for help. Knocking insistently because he knew the nurses were there. And those two nurses were so afraid they ‘barricaded’ themselves in and called Dr. A. and told her he was out of control. What kind of training do those two have? Does Dr. A know what really happened? Maybe. Maybe that’s why she’s so apologetic. But she sure didn’t say the nurses were wrong. Protection. What does that mean? I’d run up against that in Campbell River, where staff were protected when they were wrong, no matter what. I’m thankful at least A tells me the truth.
Bill is being given a diuretic because of his terribly swollen legs and feet and he has to pee a lot. The next time he has to go to the bathroom, I tell Andrea, who says she’ll call Security. But I don’t wait for Security before I take him to the toilet. Andrea comes into the bathroom with me. “You do it a lot differently than we do,” she says, “and you know you are the best medicine for him.” She’s always been great with Bill and right then I could have hugged her.
We’re tying the tabs on Bill’s clean gown when the Charge Nurse and a security guard arrive. “Are you helping?” the guard asks me.
Andrea says, “We’re all done,” and the guard says, “Good stuff,” and leaves.
The Charge Nurse starts to protest, but stops because in the meeting on Monday I’d been told by Erica and Dr. A that I was free to do Bill’s personal care whenever and however I saw fit.
Next morning, I arrive at the hospital at 7:00 a.m. Bill’s first ECT treatment is today. He’s already been given extra sedation. The gurney to take him to ECT comes at 7:30. The porter and I load Bill onto the stretcher easily. Then a young, tall, slim and fairly pale security guard, arrives. When he sees Bill’s already on the stretcher he asks, “Do I have to stay.”
“Yes,” a nurse says. “You have to go with him to ECT.”
When we get to ECT, the guard looks so nervous I ask him if he’s been working at the hospital long.
“No,” he says, “I’m brand new. I just finished training.”
A few minutes later, he asks the nurse on the ECT unit if he can go now.
“No,” she says. “You have to stay, and you have to go into the treatment room and stay there, too.”
The guard pales even more and his voice rises maybe a quarter of an octave when he says, “I do?”
The nurse assures him that yes, he does.
I wait in the section Bill will be brought to when the treatment is finished. He’s still out when the stretcher arrives. When he wakes, he yells and thrashes, and the security guard jumps back from the stretcher.
Bill’s movements pull his IV out. He’s fighting madly, highly confused, and trying to climb over the stretcher rail. I figure someone has to stop him. I step forward and put hand on his shoulder. He bats it away, but I put it back. The touch and my voice calm him and he lies back down.
Security guard #2, a veteran, soon arrives, but he stays only a few minutes. Before he leaves he answers the young guard’s question of whether he still has to say with a short, “Yes.”
As soon as Bill’s stretcher is pushed through the doors back onto his ward the guard asks, “Can I go now?” and one of the nurses says yes. The guard bolts for the exit door. The nurse who said yes disappears into the hub.
The physically petite nurse from ECT, who had driven the stretcher down herself rather than wait for a porter, and I look at one another.
“Just you and me,” I say.
“Yup,” she says, “it’s lonely at the top,” and we both crack up.
Report I get from Bill’s day nurse, Heather, when I arrive at 10:00 a.m. this morning. “At 5:30 this morning Bill got up, soaked. His night nurse tried to change him. He choked her. She drugged him and had him put in seclusion.” The night nurse is the same Charge Nurse who weeks before reported Bill choked a female patient—and who’d told me she’d been choked by a patient.
Now, he’s out of seclusion, sitting in his favorite spot in front of the TV. Due to being heavily drugged, I can see he doesn’t know me when I first address him.
Dr. A is on the ward. She comes over and repeats what she was told by S, the night Charge Nurse, then adds, “He was quite violent coming out of ECT yesterday. His reaction is not normal. I’m going to stop ECT.”
That confuses me. She told me it takes more than one treatment for a patient to respond. I say as much. “Well,” she says, “I’m going to stop three of his five medications and see what happens.”
About time. I had said before the ECT that maybe she should discontinue all the meds and start with one and see what happened, but she wasn’t ready to do that then. However, she’s still not just going with one. “What a mess,” I say.
“Yes,” she agrees, “what a mess and I don’t know how it got that way.”
I’m pretty sure I do, but I hold my tongue.
While she’s talking to me, Bill stands up and shoves me out of his way. Dr. A takes his hand and we start walking with him. After a loop around the hub, she asks him if he knows me now and if he knows I’m related to him.
“Yes, that’s Jocelyn,” he says.
“You know she comes a long way to see you,” Dr. A says and Bill says, “Yes.”
I have no trouble with him the rest of the four and a half hours I’m there and am able to collect a urine sample easily for the nurses. It seems to me that every time Dr. A changes Bill’s drugs she expects results the next day, and when that doesn’t happen it’s supposed Bill has a UTI infection, or his brain is changing. So much for not assuming changes in behavior are because the patient’s brain is changing due to the disease. He’s never had a UTI and I think the array of drugs he’s been given would change anyone’s brain.
Next day, I’m told when I arrive at 9:00 a.m. that once again Bill had been put in seclusion because when he woke early and was soaked he was aggressive during care. Same Charge Nurse—S.
He’s out of seclusion now but so drugged he can barely stand. He’s very slow to respond to anything said to him by me or anyone else, unsteady on his feet, and does not speak at all. His eyes are swollen, red and watery.
Dr. J, who I’ve seen very little of, meets me in the hall. She agrees with me that the increased swelling, unsteadiness, and increased fog Bill’s in are likely due to the extra meds he'd been given that morning. She also tells me increased agitation on the patient’s part is not unusual after the first ECT treatments and it usually takes six to eight treatments for it to have a lasting effect. She’s in something of a hurry and I don’t think to ask her how much experience she’s had with ECT, but she’s a lot younger than Dr. A and she sounded as if she’d had experience with it, which Dr. A hasn’t.
Dr. A arrives at 10 a.m. and we have a long talk. I ask if Bill actually did choke S, as I’d been told when I’d arrived yesterday.
Dr. A says, “No, he only made a motion with his hands and she moved.”
“Was she alone in the bathroom with him? I ask.
“No, there were three people in there.”
So, I’m guessing the other two told Dr. A what really happened, which was nothing at all. Yet, he has been filled full of extra drugs and put in seclusion not once but three days in a row by that same nurse.
“So how did seclusion go?” I ask.
“He hates it,” Dr. A replies.
I look at her for a long moment. “Can you blame him?”
She doesn’t answer that.
“I’m concerned this has become a pattern,” I say. “There is something fuelling Bill’s and that nurse’s mutual distrust of one another.” And though I don’t say it, I cannot understand why S, who has lied twice about Bill choking someone, is not fired.
I ask Dr. A, “So what happens if he actually does hurt someone? He’s been in hospital for over five months, with so many medication changes his body doesn’t know whether it’s coming or going and nothing has stopped his resistance to personal care by some staff.”
“ECT is back on the agenda,” she says, which gives me no comfort at all.
“Did you know he’s really constipated again?” I ask her.
She sighs. For some unknown reason the laxative that was ordered to be given with the diuretic was reduced, then not given, and as is totally predictable with Bill being constipated, the discomfort adds to his resistant behavior.
“I’ll order a laxative right away,” she says.
God only knows if that will help the situation, but I’m praying hard that it does. I’m afraid to go home and leave Bill by himself, but I have to go home soon because at this point my own sanity feels like it’s on unsteady ground.
Centimeter by Centimeter
Andrea, Bill’s day nurse today says, “Bill got up really early, soaked. He didn’t offer any resistance to anyone and he hasn’t offered any resistance to any of the day staff either.”
“Good to know,” I reply.
“He loves his chair and gravitates to it,” Andrea says.
After a meeting I had with Erica, Susan, and Dr. A yesterday, Bill was started on more pain medication. His feet and legs are extremely swollen and he has been very uncomfortable. And, as of yesterday, he also finally has a comfortable chair in his room.
Erica told me when I asked about it that she didn't think there were any available and I said, “Okay, I’ll go to the store and buy one and have it delivered to his room.” She laughed and said it wouldn't be approved. To that I replied, “Tell me what it needs to have to be approved, because he needs a chair he can put his feet up in to ease his back, and to help the swelling in his legs and feet.”
“I’ll look into it,” she said, and the OT apparently promptly found one.
That only took three different hospitals and six months!
When I get to Bill I can see he’s much steadier on his feet this morning, and he’s talking again. Different nurses on his team last night from the ones he resists makes a huge difference to him. As Dr. S pointed out what seems so long ago in Comox, Bill reacts differently to different people, as do we all.
I wash his hair and body and walk with him a good bit, and Haley comes to the hospital at suppertime. Together we give Bill's feet, legs and hands a good massage. He doesn’t know Haley’s name, but he’s visibly happy to see her and I know he recognizes her to some degree. The massage eases some of his discomfort. The laxative he's been given works, too, which helps.
After Haley leaves, Dr. A and Dr. J both come on the ward. Dr. J is strongly in favor of ECT. They tell me Bill will have another ECT treatment this Wednesday, which I won't be there for, but then there will be a regular schedule for treatments. I tell them I’ll be there.
On Wednesday, the hospital calls and Bill’s nurse tells me they got Bill to ECT this a.m. without problems and it all went well.
I go to Victoria on Saturday. On Monday, Bill will have ECT. On Sunday he has a very hard night. On Monday, I’m able to get him up easily to transfer him to the stretcher even though he is heavily sedated. I go with him to ECT and when the doctor can’t get Bill to lie still to insert the IV, he asks me to come into the treatment room. I put a hand on Bill’s shoulder and say, “Bill can you lie on your back and give the doctor your arm?” Bill does and the doctor gets the IV in and I leave the room and wait in the area they’ll bring him to after the shock. When Bill’s brought out, the doctor comes with him. “Can you be here for his next treatment?” he asks. I say I can.
Back in his room on the ward, it’s more than two hours before Bill begins to wake up, very groggy and totally soaked. I lean down to help him sit up to change him and he kicks me in the chest hard enough to send me flying into the opposite wall. I’m not hurt. Thank goodness for strong bones. But I have to resort to calling his nurse and telling her what happened. Security is called, and I’m inestimably sad that when he’s struggling to come out of anaesthetic on top of being heavily sedated he seems to actually be becoming violent. And now there’s another purple dot on his chart.
He’s so out of it he sleeps most of the day, but while he’s sleeping something interesting happens. He starts talking in his sleep. Whole, logical sentences, as if he was having a conversation with someone. So when he starts to wake up the second time, I ask him some questions and we have the longest actual conversation we've had in at least two years, with his thoughts and sentences flowing smoothly and easily in sequence.
He relates an incident I knew about that happened when we were teenagers and he’d been driving around Fort Qu’Appelle with his buddies on a Saturday night. The boys had been drinking and were doing wheelies in a parking lot in the wee hours of the morning and rolled the car. No one was hurt, but the roof of the Volkswagon was caved in. They crawled out, bounced the car back onto its wheels, punched the roof up enough to allow them back inside, and proceeded to drive into town, where they went straight to the cop shop like good citizens to report the accident.
The policeman on duty, who knew all the boys in town, asked them if they'd been drinking. Two of the boys said no, but one of them said, “Yes, we had a glass of wine at suppertime.” When I’d first heard the story, I could only imagine the policeman’s face and interior guffaws right then. He’d told them to get out of the car, had a chat with them about coping and about driving safely, and sent them on their way walking home.
Bill's 'dream talk' was the chat with the officer, which he said when he was thoroughly awake and talking to me, he thought was good. The clear talk didn't last, but for the rest of the day and evening he was calm and compliant, and looked quite content, and he had a good night.
All day Tuesday was good.
Wednesday, I get him up easily enough to walk him to the stretcher before his treatment, but he’s again super groggy after it, and when the porter and I try to get him from the stretcher to his bed he doesn’t respond in any way. So Security has to be called to get him off the stretcher, and when they put him on his bed he yanks one hand free and punches the thigh of the female guard at his head several times before she can re-restrain his hands. She says she isn't hurt, but he was hitting hard. Another purple dot, or perhaps a page of them.
Dr. A comes in while he’s still sleeping and says during treatment he had not had a good seizure and she doesn’t know why. She said if someone had given him Atavan it would have interfered, but no one did, and Tegretol would also have interfered, but she’d stopped it weeks back and she’s mystified. She decides to leave more time between treatments and tells me instead of Monday and Wednesday, they'll be Monday and Thursday next week.
Next morning, Bill is fully awake. I’m told he was completely compliant with care during the night and early morning. We sing songs and dance in the common area to music that’s playing on the TV. When we start to walk around the loop, still singing, other patients join us and we once again we have followers, which has all of the nurses chuckling. After supper, I head home for a few days.
Figuring out how to untangle Bill's brain to where he is what they would call 'stable' is like trying to find a path through a mine-field. Tricky, and dangerous. I think the combination of additional sedatives pre ECT, plus the anaesthetic, confuses him to the point that when he first wakes all control of his instincts for self-preservation vanishes and he fights doubly hard to protect himself when he feels threatened. So, the ‘violence’ they’re trying to prevent actually occurs.
My own brain is tangled with worry about what other options are there? I’m just hoping that eventually the increased clarity I've seen after the drugs wear off following the treatments increases to the point that he understands that the people trying to take care of him are doing just that, trying to take care of him, and he quits fighting it. Once again hoping for a miracle I guess.
Phone call this morning from someone called Linda at the Jubilee. I don’t know who she is in the hierarchy. Erica and Susan were sitting in on the conference call. Linda said the nurses do not want me doing any of Bill’s personal care. Reason given: safety
Real Reason to my way of thinking: turf war — coming from S, the Charge Nurse who has had Bill put in seclusion three times.
On Wednesday, she was angry when the porter brought the stretcher to take him to ECT, and I got him to his feet and asked him if he would take my hand to walk to it. He reached for my hand and S moved in front of me and took his hand and put him on the stretcher the wrong way round, so his head was where his feet should have been. The crew in ECT were unhappy he’d been placed that way, but Dr. A went ahead with the treatment without trying to change him round the right way.
Linda starts the phone call by saying, “You sometimes cut Bill’s hair,” and I reply I had not cut his hair since I was told not to by S. “One of the other nurses offered to cut his hair,” I tell Linda, “but told me last week she’d talked to you and you had said no, not until he’s stable.” Linda changes tack. “We talked about working as a team, but I’m not getting that from you.” (I then recall a Linda sat in during a telephone conversation I’d had before with Erica and Susan, and we’d talked about ‘team’).
“I thought I’ve been doing exactly what’s been asked of me,” I say. “During our last meeting, Erica said I was free to do Bill’s care when and how I liked, and later she asked me if I could do it with the nurses observing. I’ve told the nurses every time I was going to take Bill to the bathroom. How is that not working as a team?”
“I want your assurance you will not do Bill’s personal care,” Linda says.
By now I’m gritting my teeth. “Define personal care.”
“Anything to do with changing him and peri-care.”
I hear my voice get louder. “I am not happy to wait twenty minutes for Security to arrive when Bill tells me he’s wet, or he has to go to the bathroom. How would you feel if you had to go to the bathroom and it was urgent and you were told, NO, you have to wait, and you were made to wait twenty to thirty minutes with the pain of having to go and the humiliation when you couldn’t hold it anymore and had to wet or soil your pants?” I repeated, “I always tell the nurses when I’m going to take him to the bathroom.”
“The nurses say that sometimes after you tell them, it’s in progress when they get there, and how confusing would that be to Bill to have people arriving after you’ve already started with him?”
“It hasn’t been a problem. The nurses do what they want to do to help, and Bill hasn’t offered any resistance to me, or them, during those times.”
Nothing I say works and neither Erica or Susan says anything. In the end, I can see the only thing that’s going to be accepted as ‘team work’ by Linda is for me to agree to not take Bill to the bathroom anymore and I do. But I am FURIOUS and sick and tired of being told what I can and cannot do with my own husband because some nurse needs to be in control or because of policies that are often hastily constructed as knee-jerk reactions to situations that are not nearly as serious as they are made out to be.
Notwithstanding the fact that I do know some situations are or can become very serious, I will not tolerate watching Bill being made to suffer in ways that are totally preventable. So I don’t know how good my word is going to be.
After I hang up, I call Bill’s ward. “I’ve got appointments I don’t want to cancel again,” I tell the nurse who answers, “so Bill is all yours for the next ten days.”
I am too tired from fighting this. I cannot figure out what they want from me when I’m asked to come and help by the doctors (two different ones have now asked me if I can be there for Bill’s next treatment); then I was told by Erica to go ahead and do his personal care however I wanted to, and now I’m told by whoever Linda is to back off completely.
I rarely ask anything of the staff when I’m there. They barely see Bill and me. We spend our time in his room, or walking, or sitting in the sunroom singing when it isn’t meal time. The only time he has ever struck out at me was the once when he was in the twilight zone of sedation, plus anaesthetic, plus after-effects of ECT. He has never made a wrong move toward me during personal care of any kind.
Health care system? Seems more like a death by battering system to me, the aim of which is to beat patients and patients' families down to where we ask nothing, do nothing, and just fade out of sight like a silent film strip locked in a bin in a dark storage room until we are nothing but dust.
Whoever Linda is, after I get the report from the Patient Care Quality Control Board for the Campbell River Hospital I'm waiting for, I’ll be turning my full attention to the Jubilee. The Seniors' Advocate and the provincial and federal ministers of health will get a full report of all this stuff; then the media. I am fed up.
First though, next time I return to Victoria Linda will learn first-hand, face to face, I am not about to become store-room dust.
Just spoke with Bill's nurse, K. She’s one of the best ones and always keeps me up to date with exactly what is going on. She said ECT went well today and Bill is speaking in clear sentences with concise flow of thoughts. That part is good, but she said yesterday he told her he’s very sad and angry and that he repeated the same thing today and added that he feels hopeless, that he is never going to get out of the Jubilee.
I had exactly the same thoughts myself yesterday and I’m aching for him. K said he’s currently curled up in bed and has asked them to just leave him alone. I’ll check with her tonight and again tomorrow morning to see if things change for the better. If they don't, I won't wait any longer to head back down. I will go tomorrow.
Have just completed composing and posting a letter (expedited) to Linda, who turns out to be the Clinical Co-ordinator for the unit Bill’s on, and whom neither I, nor Bill, have ever met. I’ve included copies to Erica, Susan, Dr. A and Dr. J, Dr. A is away this week so won't get hers until next week. But Dr. J, who has been very supportive of me, is there.
To: Linda Holmes, Seniors and Spiritual Health Clinical Co-ordinator
cc. Erica Summers, Clinical Nurse Leader; Susan Anderson, Social Worker, Seniors Mental Health; Dr. S. Argouarch; Dr. Jovic, Royal Jubilee Hospital
Re: Personal Care for William (Bill) Reekie
June 21, 2017
First, I want to say the staff and doctors who are concerned with caring for my husband, Bill, on 2 South West do everything they can to keep him safe and well. They work hard, and I very much appreciate what they do. I also appreciate the feedback I have received from both Dr. Argouarch and Dr. Jovic, and the nurses, and the time Susan, Erica and Linda have given me to provide information and allow me to give input into Bill’s care.
That said, I am confused because many staff, and both Dr. Argouarch and Dr. Jovic, have commented to me that Bill connects to me and I am a calming influence on him. Yet there seems to be increasing reluctance to let me help him every way I can.
Since he has been in the Jubilee, many restrictions have been placed on what I can, and cannot, do for him when I am with him. The most recent decision regarding his personal care, which was relayed to me via a telephone conversation that occurred between me, Linda, Susan and Erica on Friday, June 16, is that I can no longer do his personal care, ‘personal care’ being defined as taking him to the toilet, changing him, or anything to do with peri-care. After that call, I was extremely sad, and angry, that more restrictions are being placed on what I am able to do for Bill in the short time I’m able to spend with him, and a sense of hopelessness that stems from that sadness and anger has begun to overwhelm me.
In the Campbell River hospital, I showered Bill almost every day, cut his hair, toileted him, often took him home for hours at a time, and brought him back. Once, and only once, after he’d been ramped up all morning and I’d been called at home and asked to come and help, I moved too quickly in taking him to the bathroom and when I started to take down his soiled pants without asking him first if he wanted me to help, he simply shoved me out of his personal space. And when I asked him if he meant to do that he apologized immediately and never did that to me again. When he was in Comox, I showered him, changed him, toileted him, cut his hair, and took him outside for walks. All without incident.
Yet, in the Royal Jubilee, I cannot give him showers or baths. Though I cut his hair once, I have been told I cannot do it again. I cannot take him out for walks or a meal he might enjoy. And now, I’m told I cannot wash him when he smells, or take him to the toilet when he lets me know he needs to go. The reason for all these restrictions given to me is safety.
It is a fact that Bill responds to my voice and does not lash out at me when I do personal care of any kind for him. It is also a fact that he kicked me, once, when he was still heavily sedated with extra drugs, anaesthetic and the after-effects of ECT. I was alone in his room with him. He was in bed and had been sleeping. He half sat up several times and I could see he was soaked, his bed was soaked, and he was uncomfortable. I leaned down to help him sit up, and he kicked. I reported it immediately, and asked for help to come and change him. What I learned that day is: don’t touch him until he is fully awake and can clearly answer the question: “Do you want me to help you?”
From what I’ve been told, when he is fully awake, there is a clear pattern to Bill’s resistant behavior regarding personal care. It occurs when staff is changing him, or has just completed changing him. It takes the form of him trying to shove staff away, or striking at them with his hands and/or feet. The other form his resistance takes is that he sometimes spits out pills. Perhaps because he doesn’t like the way they make him feel? Where his aggression has been shown to be somewhat unpredictable is when he is half asleep or has been heavily sedated and is highly confused.
It is a primal instinct of our species to protect our personal space, and in particular our genitals. It’s also instinct to fight when we are restrained against our will. When Bill tells me he needs to go to the bathroom, I ask him, “Do you want me to help you?” If he says, “Yes,” we proceed. If he says, “No,” we don’t. If there is no clear answer, I back away and give him the time and space he needs to decide what he wants to do. In fact, I never proceed with any kind of personal care for him without first asking him if he would like me to do it, and waiting until he says yes.
I have always told the nurses when I was going to take him to the bathroom. On the phone with me on June 16th, Linda said, “The nurses said that sometimes when they get there it’s already in progress. She then asked, “How confusing is that, to have someone else come in when he’s already being changed?” My answer to that is, I’m still the person talking to him, the nurses have helped however they chose to help. And there has not been any incident when they have come in when I’ve had him in the bathroom that he has resisted or lashed out against me, or them, in any way.
Linda also said, “We talked about working with Bill as a team and I’m not getting that from you.”
As I said then, I thought I was doing that. I have done everything that has been asked of me. I don’t feel that I ask for much when I’m with Bill, and I don’t hide anything I do with him. I assumed, perhaps incorrectly, that I save the nursing staff some time and trouble by being there. So I would ask, how am I not working as part of his team?
I have lived with Bill and taken care of him for 48 years, and when he was able to do so he did the same for me. He is a human being, who for more than 14 years has lived with, adjusted to, and fought the effects of a terminal disease with the kind of courage and grace I can only imagine having. But the disease is winning, and now he is being kept away from his home and everything he knows. More than ever he needs the touch and care of someone he knows and trusts. And I am losing him, and I need to touch and care for him the way I always have.
So I am asking you, please don’t take away from me the only thing that’s left to me to give him. When I’m with him, please let me care for him how and when I see fit to make him as comfortable as he can be.
If the Clinical Co-ordinator continues to impose restrictions on what I can and cannot do for Bill, I will go immediately to the Seniors’ Advocate. I'm swearing, but crying a lot as well. I am truly losing hope and very, very angry that they continue to impose stupid restrictions on me that impact what little comfort and joy I'm able to give my husband. I can only hope that somewhere there, there is someone with enough humanity to understand they are making him—and me—suffer much more than we need to in what is already an agonizing time for us.
In the morning, Erica and Susan call me. They start by apologizing for how the conversation we participated in with Linda on Friday was handled from their end. I tell them I’ve just sent off a letter addressed to Linda, to them, and to doctors A and J.
“And I just got a letter from Linda this morning,” I say to Erica and Susan. “She’s reiterated what was said on Friday and has expanded limits on the personal care she agreed to. Now she says, we are asking you not be directly involved in his personal care needs such as bathing, dressing or grooming. We understand that this is a time of grief for you and your family and respect your emotional need to stay involved in his care. We would be happy to arrange time to meet with the team to develop meaningful activities for you to engage your husband with while visiting on the unit.
“What does meaningful activities mean? Bill cannot do anything other than walk, listen to music, sing or watch some television, and I’m not allowed to do his personal care, take him off the ward, or now even dress him.”
They have no answer and I rant on.
“For Bill and for me, personal care is not just about making sure he doesn’t get skin rashes and skin breakdown due to wet or soiled clothing. It is the major connection left to us to share. There is very little to give him peace, comfort and joy in the environment he’s in and the situation he's in due to the disease. Why would anyone want to remove from him the simple pleasure and comfort of being cared for in a way that is devoid of tension and involves so much more than just changing him?”
I pause but there’s no reply to that either.
“I wonder,” I say, “if you understand how much stress and distress all of this is adding to what is already a very difficult situation for us, and how is safety the issue when he doesn’t resist or lash out at me when I do his care?
“When he kicked me, he was heavily sedated and I was alone in his room with him. I did not have to report it, but I did, and I asked for help and stood back while Security held him and his two nurses stripped and changed him the way they do.”
Erica finally speaks. “We need to be able to do his care without him resisting. And you do it differently from them. That’s why they don’t want you doing it.”
Turf war confirmed. Once again, I’m flummoxed, but not silenced. “I’m with him for four to six hours a day, three or four days a week—maybe twenty-four hours in total. A week has one hundred and sixty-eight hours in it. They have all the time I am not there to work out how to gain Bill's trust.”
“Well,” Erica says, “you are his wife, and when you're with him you will do what you will do,” which lets me know they do not have a legal right to stop me from doing his care. And that gives me a great deal of relief.
Susan says she hopes she’ll see me soon and I tell her I still have some appointments to attend, but I’ll be back soon.
Next day, Dr. J calls. “Bill didn’t have a good seizure this morning,” she says, “are you coming down in the next day or two?”
“I thought Dr. A was going to change the schedule to Mondays and Thursdays, to allow more time between treatments?”
“Time frame doesn’t mean anything,” Dr. J replies. “Some patients have treatments Mondays, Wednesdays and Fridays and they have beautiful seizures. The older a person gets, the harder it is to have them get a good seizure, so we’ll change the way we’re doing it.”
By that I assume she means they’ll up the voltage, though she didn't say that.
“So can we talk about what you talked about with Erica and Susan yesterday?”
“I’ve put it all in a letter to you, Linda, Erica, Susan, and Dr. A,” I tell her. “You should get it tomorrow, so I’d like to wait until everyone has read it to talk about it anymore.”
“I’m glad you wrote a letter, but I don’t see why we can’t just talk about it now.”
It takes me some seconds to reply. “I’m sorry, but continuing to repeat the same things verbally to various people isn't helping. I’m hoping the letter will make clear what I think and feel about what’s happening, and after everyone’s read it, I’ll be happy to discuss it with whoever wants to.”
“All right,” she says, but she does not sound happy.
Yesterday, Erica and Susan told me Dr. J had discontinued Bill's pain meds because she didn't think they were doing any good and the nurses think Bill is in pain. Erica asked me if I would talk to Dr. J about that. I said I would. So today, when she asks me about Bill’s pain,
I tell her he is in pain. “His back hurts, he often has sciatica and he also has osteoarthritis in several places, plus I don't know what other pain he might be in because of Alzheimer's, and the drugs he’s getting. Dr. A told me she’d prescribed point five milligrams of Hydromorphone PRN and I said I didn’t think that dose would do a thing to relieve his pain. But she said she has to be careful how much she gives him because he’s on other drugs. Even one milligram of Hydromorphone doesn’t do anything for me when I’m in a lot of pain, especially nerve pain, and Bill outweighs me by at least sixty pounds. Two milligrams does help me.”
“We’re worried about side effects, like drowsiness,” Dr. J says. “And we don’t want Bill to become dependent on it.”
I laugh, without humour. “I don’t think the side effects from Hydromorphone are anything near as bad as the ones he has from the other stuff he’s on, and he's dying, so if he becomes dependent on it, so what?”
She says, “He’s spitting out his pills more than ever and we can’t hide them in food without your permission,” which also almost makes me laugh.
They've been crushing his pills and putting them in pudding ever since he was in the C.R. hospital. So why are they asking my permission now? As if I’ve ever had any control over what they give him, or how. But I tell her, “Once at lunchtime I used his spoon to pick up one of the pills that can’t be crushed that he spat out, along with some of the noodles and sauce he was eating, and gave it to him and told him not to chew, just swallow, which he did. You have my permission to get his pills into him however you can.”
She says she’ll reinstitute Tylenol and Advil, and up his dose of Hydromorphone PRN, and again asks when am I coming back to Victoria.
“Sunday,” I say.
“Take care of yourself,” she says, and my reply to that is, “I'm trying.” I want to add, but you guys are making it hard, but restrain myself. I don’t know then that’s the last time I’ll talk to her.
One Forward, Two Back
The nursing staff have been incredibly supportive of me since I arrived two days ago, except for my nemesis, Charge Nurse S. We had a set-to yesterday, when she told me to, “Get out of the way. We’re not going to do any care with you,” when I finally forced her to change Bill. She’d ignored the fact he needed to be changed for hours.
I’d first told her he was soaked, his bedding was soaked, and he needed changing a half hour before supper trays were to arrive and she had told me she wasn’t going to do it then and made us wait until after supper—which Bill didn’t touch and during which he was very uncomfortable in his wet things. Twice since supper I’d reminded her and she’d continued to ignore it. Finally, I got him up from his chair and started to take him to the bathroom myself and she quickly intervened. Her attitude and ignorance made me angry enough to confront her when his care was finally done.
As Bill came to sit beside me and she was washing her hands, I told her all the other nurses had been happy to do care with me for the past two days, and asked her what her difficulty was about, and she blew.
She yelled a bunch about how she wasn’t going to have anything to do with care with me, that the care plan was black and white and the others weren’t following it and she was supposedly the bad guy. Then she went to the nursing station and yelled at them.
But the other nurses defended me, and so when Bill and I were walking the hallways, S came back out of the hub. She said she was mistaken, the plan wasn’t black and white and she was angry at the administration for not being clear and they were just there from eight to four while the nurses were there around the clock, and she planned to email Linda immediately and have her come and talk to me first thing today.
She fell into step with Bill and me, which I didn’t welcome, but I tried to explain I’d sent a letter to the administration and the doctors and that it was a work in progress, and it takes time to discuss these things and form a plan that works, and that plans also change.
After twenty minutes of back and forth, during which S admitted she’d spoken to Linda when she came on shift at 3 o’clock and that Linda had told her they were going to give me a waiver to sign, she was speaking to me civilly and said, “We should not make this any harder than it is.”
I struggled to keep a straight face while I solemnly agreed.
A lengthy meeting today with Linda, Erica, and Susan, with a good result. I signed a waiver and will be allowed to do Bill’s care. There are, of course, conditions. If I begin care, staff will not be allowed to assist me. I will wear a ‘duress button’ and if I get into trouble while doing Bill’s care the button goes directly to Security, who will respond immediately. And I am not to do his care post ECT.
I was glad to finally meet Linda face to face and I’m pretty sure we both left the meeting feeling better about each other. Linda actually cried. After Linda left, Erica and Susan stayed to chat for quite a lot longer and both said, “Keep advocating,” to me.
When I saw Dr. A on the ward, she was all smiles with my reinstatement re care, and said she’d be very happy to see me when I’m back next week, that she’s on call this weekend and I should feel free to contact her anytime. She is, however, concerned that Bill has been sleeping almost all day and is not one bit interested in food since she started him on a new anti-depressant, Effexor, and told me she would reduce the dose.
My biggest worry is that I still haven’t seen any change in Bill’s behavior toward some staff when they’re doing his personal care when I’m not there as a buffer. But the new decision that prevents them from doing care with me—which has to have come from S—sort of means that isn’t going to happen anymore. However, I’m counting on the sensible nurses continuing to let me assist if they initiate care at my request and run into trouble.
I’m home. Met with Dr. A yesterday and tried to convince her to discharge Bill from involuntary Tertiary Care and let me bring him home. Not going to happen. She remains convinced she needs to find some solution to his depression, which in my view is not possible because it’s being caused by him being locked up in a place he can't make sense of, and fed drugs whose side effects include, cause depression.
I asked her to do an MRI to see what’s what. She said they don’t do MRIs on dementia patients, and she isn’t going to do one. Yet, she’ll give his brain shocks. Seems ludicrous to me. It also seems cross purposes to me for them to be doing the drugs and the ECT at the same time, and I’ve said as much to both psychiatrists more than once, but they persist with it. The ECT did bring back a lot of his vocabulary, before Dr. A added Effexor to his regime.
I'm sick to death with this whole thing, especially when Bill should never have been certified in the first place, which Dr. A actually acknowledged to me, out loud. I said I had read up on Effexor and will be glad to see him off it, but the drugs get changed so often his poor body has no chance to adjust to anything, to which she didn’t respond.
I'm just hoping Evergreen or New Horizons will agree to take him. Although Erica said she would check with New Horizons eons ago, I’ve heard nothing about that. I know administrators have a lot to take care of and the small things get lost when they’re so busy putting out fires, but it makes it ten times harder for patients and primary caregivers when these lapses occur.
My focus in the next few days is to meet with some care home owner/managers and discuss Bill and see what's possible for support at home. No matter what, I’ll give it five more ECT treatments and if there’s no concrete change in Bill’s behavior re care with hospital staff by then, I’ll get a lawyer and start proceedings to fight to have him discharged.
Just got off the phone to the Jubilee. When I’m not there, I call for an update every day and the nurses are very good about telling me what's happening. They said Dr. A increased Bill’s pain medication and took him off all other drugs except Nozinan, and the result is that since then he's had three very good days with no incidences of non-cooperation at all on his part. He’s eating himself, and today's report is that after ECT this morning he was very bright and all day was speaking in whole sentences again and was happy.
Now, I just pray it lasts. Lasting effect means he has to remain calm and co-operative for at least two weeks. So far it has only lasted a day or two. This last three days is the longest stretch. My fingers ache from being crossed so hard.
ECT has definitely had a good effect on Bill’s language, but I don't know if it’s influencing the co-operative part of his behavior, or whether this newest stretch of co-operation is because last Monday I sat and talked with him at length about the need for him to quit hitting or kicking at staff if he ever wants to get out of the Jubilee. He indicated he heard and understood me by agreeing.
I do know he understands far more than anyone else thinks he does even if he doesn’t respond verbally, though some nurses and Dr. A are beginning to get that. And I know he has far more control of himself than some want to believe. If his impulse control is gone, why hasn’t he lashed out at me except for the once following ECT? Why does he only lash out at some staff, and almost always the same staff? Why doesn’t he resist or fight anyone except for during personal care? If his impulse control is gone, it would surely be gone with all staff, with other patients, and with me in several different scenarios. It simply doesn’t make sense. Yet doctors and nurses insist on calling his ‘aggressive’ behavior unpredictable when it has only ever happened with personal care, which is predictable.
It’s been such a long dance of one step forward two steps back and I don’t know how much longer I can keep doing the steps without breaking down myself. There are days when I’m at home that I can barely drag myself out of bed.