THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
Whose Body Is It?
Arrived at the hospital at 7:10. Bill’s ECT was supposed to be at 7:45 but the porter was already there with the stretcher and we load him on. He can barely walk due to double the dose of Nozinan he was given via injection before I got there. And my lack of trust for Dr. M, who had agreed not to double-dose Bill prior to treatment, increases.
In the holding area for ECT, Bill tries to climb out of the stretcher three times, extra drug notwithstanding. All it takes to calm him down and have him lie back down is me talking to him, touching his shoulder and asking him to lie down and take deep breaths with me.
The female security guard who accompanied us from the ward is the same one who accompanied him when they’d taken him back to the ward in restraints, and when she sees how Bill responds to me, she says she can’t believe the difference in how he’s responding today versus then. I want to ask her what they’d done to try to calm him before tying him down when I wasn’t there, but didn’t because I knew very well they’d done nothing but use more force, which escalated his resistance. However, I also knew no one could get through to him quite the same way I could. Forty-nine years of marriage will do that.
The ECT nurse says it’s time. The Security guard goes with them into the treatment room, and I go and stand beside the nurse who accompanied us from the ward. It’s the Charge Nurse who way back in the first month had told me the bit about there being a new policy because a family member was hurt that meant I couldn’t do Bill’s personal care, and who I hadn’t seen on the ward since that week. I’m surprised to see her crying.
“I’m sorry,” she says through her tears, “I never should have taken his personal care away from you.” That makes me take a breath. She’d spoken to me so kindly I hadn’t known it was she who’d made the report that had done that. But I did know it was H who had reported Bill had yelled when I was with him in the bathroom, and it was H who’d come with this nurse to tell me about the ‘new policy’.
The doctor doing the ECT appears and asks if I will please come into the treatment room with them. Bill is trying to escape. I’m able to calm him and keep him calm while pads are put on his body and the IV’s in, and he’s rolled onto his back.
Afterward, both the anaesthetist and the doc administering the treatment ask if I can please be there for the next one—scheduled for next Thursday. And that’s when I find out Dr. M has gone ahead and scheduled several more, without my consent and in spite of the promise to taper. I really, really don’t like that guy.
I say, yes, I will, but I’m lying, too. What I really intend to do is cancel further treatments.
Coupled with the anaesthetic, the extra sedation Bill had been given made him so groggy it takes him four hours to wake up, and when he tries to walk around the loop an hour after that he walks something like a drunk and says he’s dizzy. And when he’s finally eating lunch, he can’t manage to put his spoon into either his soup dish or his fruit dish because he thinks the dishes are in a much different place than they are. His language is far different than it was just one day ago as well, slurred and incomplete thoughts. I wasn’t told where they’d shocked him, but later find out it was again the temporal lobes. After I’d told M what temporal lobe treatment had done the first time!
The dizziness passes and in the afternoon I take Bill outside, for which he and I are both grateful. We don’t go far because of his difficulty walking, but we get some sun.
When I leave after supper, I’m hoping the grogginess and unsteady walk will be gone by tomorrow. But I didn’t fight hard enough against M, and I’m the only hope Bill has to actually be heard. It’s his body we’re messing with; his mind. Why oh why didn’t I listen to his pleas for no more ECT and stand up to M?
Long day at the hospital today with ups and downs. Bill much more awake today than yesterday, and I gave him a long shower which he really enjoyed. And this afternoon we went outside without an escort and he delighted again in buying us donuts and smoothies at Tim Horton’s. That was the good part of today.
Unfortunately, his depth perception has not improved. He’s also more confused, and the wonderful return to coherent sentences he was experiencing prior to yesterday’s treatment has backslid into the occasional comprehensive sentence and a lot of jumble. He has NEVER spoken in jumble before. I know increased confusion following ECT can wear off, and I’m praying it does. I don’t know if loss of depth perception and language can.
What I know for sure is that Bill isn’t in nearly as good shape now as he was prior to these last two treatments. So, I told the nurses I absolutely do not want him to have any more ECT treatments and they said they passed it on to Dr. M because I wasn’t given the chance to tell him personally.
This afternoon, he breezed by Bill and me without a word when he was on the ward. And he didn’t talk to me before he left the ward. I think he’s seen a letter I wrote him, which gives some of Bill’s background, particularly concerning being in restraints, and asks M to discharge him from involuntary Tertiary Care because Bill has been completely compliant with personal care for a month, or explain clearly to me why he should remain certified as I am concerned about the ramifications being certified has regarding Bill’s placement in care in C.R.
Was on the ward all day Sunday and didn’t see M at all. Bill was steadier on his feet, but his depth perception and language didn’t improve.
Came home Sunday night. Called the hospital and spoke with Susan this a.m. and told her Dr. M hadn’t spoken to me after Bill’s last ECT treatment on Friday, and I absolutely do not want Bill to have another ECT treatment. And I want to make sure the treatment scheduled for this Thursday doesn’t happen. We talked and I explained to her what happened after Friday’s treatment: Bill’s backslide and new problems as a result of two treatments on his temporal lobes. She said she’d put a note on the doctors’ boards and send them emails stating my wishes, and she would call me back.
When she called me again, she said Dr. A’s back and she’s sure Dr. A will call me either today or tomorrow—likely tomorrow because she has new patients to deal with plus picking up notices and catching up after her holidays.
I told Susan I feel like I’ve let Bill down because I knew Bill didn’t want Friday’s treatment, and I let myself be talked into it. I explained that in spite of his Alzheimer’s he still knows his own body, and what he wants and doesn’t want, and we need to listen to him and respect his wishes just as the wishes of any other terminally ill patient with regard to treatments would be respected. She said that’s a good way to put it, that I am very clear, and I should say exactly that when I speak with Dr. A.
After I spoke with Susan, Dr. M called, and my anger quotient was ramped way up again. His opening statement was that the treatment last Friday went smoothly, and he went on to say he was in the hospital on Saturday and Sunday and the nurses said Bill had been chatty and happy for the last couple of days. He apparently had forgotten I saw him on the ward on Saturday and he didn’t speak to either Bill or me.
I replied, “I was on the ward all day Saturday and Sunday and Bill was decidedly not chatty. In fact, he could barely speak at all. And his depth perception problem has worsened as well. He can’t even make his spoon go into his soup bowl. As for Friday’s treatment going smoothly, I was there, too. It was not smooth.” I told him exactly what had happened before and after it.
He then said, “You can tell it to Dr. A because she's back.”
“I want you to hear it,” I said. “Bill has suffered serious setbacks because of the bi-temporal treatments.”
“I’ll relay your observations to Dr. A,” he said, emphasis on observations, and hung up.
It seems the man not only doesn’t listen, read, or ask questions; he also tries to fudge his way out of his ignorance by misleading or straight out lying.
Immediately after hanging up with him, I wrote a letter to the hospital administrator. In my letter, I said I have concerns because I felt deliberately misled by Dr. M twice, and I do not want him to be Bill's primary psychiatrist if it’s true that Dr. A isn’t continuing with inpatient care. I have no idea whether I can actually tell them who I want Bill’s doctor to be, or not. So, I guess I’ll see what happens.
Dr. A calls me Thursday morning and says during care that morning Bill pulled the hair of the nurse when she bent down to put the stretchy pants they use on him, pushed her to the floor, and when asked to let go of her hair said no. “Security was called and they convinced him to let her go without further incident,” she says.
But the damage had of course been done.
Next day I call the ward and learn the nurse in question was Andrea. I know Bill really likes Andrea a lot and ask to speak to Bill. When his nurse puts him on, I ask him what happened. He says, “I’m in trouble. I’m sorry.” He tries to explain, but can’t.
“I’ll be there by lunchtime tomorrow,” I tell him. And Monday, and Tuesday, okay?”
Apparently speaking to the nurse, he says, “Write that down.” So it seems in one way he's thinking quite clearly, and in another his reactions to care appear to have returned to difficult.
When I arrive, Andrea’s in his room. Bill’s in his comfortable chair and as soon as he sees me he stands up and hugs me, hard. He sits back down and I sit on one arm of his chair and Andrea sits on the other. We chat. While we chat, I have a thought. Last time I was here, I saw Bill emulating some of the behaviors he’s watched other patients do for months, such as moving furniture around randomly, and attempting to clean the floors from imaginary (and sometimes real) dirt.
“Andrea,” I say, “I’m mystified that Bill would pull your hair, and he told me on the phone he’s sorry for it. Do you think it’s possible he could have been doing this?” I reach over and run my fingers through Bill’s hair, which I do a lot.
Her eyes open wide. “Oh my God. Yes! I had my hair in a bun.” Then she reaches down and pushes Bill’s hair off his forehead. “And I’m always doing this to him,” she says.
Mystery solved. It seems he was only trying to emulate what we do to him when we’re showing him affection. Because of the bun, it’s possible his fingers got tangled and he didn’t know how to untangle them without hurting her and instead of being able to explain that, when he was asked to let go he said no. That’s all conjecture on my part of course, but it’s more plausible than that he wanted to pull her hair. He has always responded well to her, as do all of the other patients because she is the gentlest and kindest of souls.
That afternoon, Dr. A asks for permission to do ECT again. I say no. She says there’s a new medication they can give Bill to put him to sleep prior to taking him to prevent the anxiety that causes the escape attempts.
I’m more than dismayed. There’s no way they are going to release Bill unless I agree. “Okay,” I say, “as long as it’s only the frontal lobes, because it had good results there. And it has to be tapered with no more than three more treatments.” Which in my calculations would make 15.
“I’ll make sure it’s only the frontal lobes,” she says, “and the tapering.”
Monday is Dr. A's last day in the hospital and Susan has scheduled a meeting with her, Dr. K—the psychiatrist who will take over Bill’s case from Dr. A—the Clinical Nurse Leader, the Clinical Co-ordinator and me, for Monday morning. And so we begin again.
This morning I have two meetings scheduled. One with the hospital Team and one with the Seniors’ Advocate’s office. I’ve been awake most of the night trying to figure out what to say.
Yesterday, there was a form left on the windowsill in Bill’s room informing me they are going to recertify him. That is Dr. A’s doing! She did not tell me the time for re-certification was due. Instead, she used me; got me to agree to more ECT so they could keep him. So much for her statement: “He should never have been certified in the first place.”
I want to scream. How can it possibly be in his best interests to keep him from home, where he is comforted, can get a piece of fruit or other snack when he wants one, is given meals when he’s hungry, can play with the dog, can go outside for walks in the forest and on the beach, can watch what he wants to watch on TV when he wants to watch it, can go and lie down on his own bed without worrying about someone coming in and sitting on top of him, or pulling his blanket or clothes off him?
Yesterday, when he and I were outside, a patient went into his room and pooped on the gown I’d taken off him when I changed him into pyjama pants and a shirt and left the gown on his chair to put back on him, as required before I leave the ward for the day, because his nurses now refuse to put him in anything but a gown, courtesy of those who read in his chart he’d pulled Andrea’s hair—because of course that had never been amended—and translated that to him being ‘violent’?
No one with any other terminal illness would be expected to put up with what dementia patients are forced to put up with.
He’s mis-labelled in more ways than one, and once labelled, it sticks no matter what the facts are. I will try to fight the recertification but I won’t win because when doctors decide to do something they have all the power. I am crying and in despair. I hate this system. I hate what it’s doing to Bill, and to me, and to our family. I hate these doctors! I don’t think I’m going to make it through this, and I know Bill won’t.
Arrived at the hospital at 8 o’clock this morning. Bill was taken to ECT at 7:30. No one told me he was having it today. Went to ECT, where Bill was in the waiting area because he’d fought the Dr. when he tried to put in the IV — in spite of the double dose of Nozinan he was given (no one hears me when I tell them more drugs won’t calm him when he’s fighting to defend himself).
In this instance, his fight was a good thing because I noticed a red spot on his temple and asked if a patch had been put there, and the Security guard said yes. I asked the nurse if they intended to do the ECT on the temporal lobes and she told me I needed to talk to the doctor, who, when I asked him said yes, they were going to do the temporal lobes.
“Then I withdraw my permission,” I said. “I did not, and do not, give any permission for bi-temporal treatments.”
“It was ordered…right here…” the doctor said, then went to look. He must have seen the order for bi-frontal only, because he came back and said, “Okay, we’ll do the bi-frontal lobes.”
I was able to calm Bill down so they could get the IV in, then I left and they tried to roll him onto his back and he fought, so I went back in and asked him to roll onto his back, and he did.
Treatment went okay, but real disaster afterward. When he woke, he tried to sit up. Security, and a nurse, pushed him down, and told him he had to lie down, and so he fought harder. He tried to sit up several times, and was pushed down each time. After about the sixth time another nurse walked up to the stretcher beside his leg, and he pulled up a knee and kicked her, hard, in her ribs. She was winded, but said she was okay. He ended up in 4-point restraints. By then I was being paged to my first meeting with Dr. A and Dr. K and had to leave.
Linda and Brynn were there, as well as Dr. A and the new psychiatrist.
I told them what had happened at ECT. Dr. A said, “I gave clear orders for bi-frontal only. I’m sorry no one told you about the treatment today, and I’m sorry about what happened after it.”
I wasn’t impressed. “It was just a good thing they had trouble with the IV or Bill would have had another bi-temporal treatment,” I said. And I would have sued.
“I don’t know what else to do,” she replied, which gave me no comfort at all.
Then, explaining Bill’s behavior to Dr. K I said, “He’s never gone after anyone,” and Dr. A said, “In the early days he chased the nurses around and they barricaded themselves in the hub and were afraid.”
What the fuck? She was referring to the single incident the morning she’d called me and asked me to come. And she had apparently forgotten that after she called me and asked me to come that day, she had apologized profusely because Bill was fine and the report was erroneous. My mind was so foggy with sleeplessness and rage I wasn’t thinking clearly enough to remind her of all of that, so Dr. K did not get the full story. I am so disappointed in her. I can’t begin to fathom why she’s doing this.
At ECT last Wednesday morning, she had also perpetuated the fear of Bill by suggesting Security put him in restraints prior to him waking up after the treatment. And one of the recovery nurses, who was particularly afraid, said she wanted him in restraints.
I spoke up, asking them to please use words first if he tried to sit up, rather than grabbing and pushing him down or restraining him. And a few minutes later, someone I’d never seen before came and told me I had to leave the recovery area because of confidentiality.
Pure bullshit. Other patients’ families are often there in recovery with them, as I have been with Bill many times. The fact I opened my mouth to advocate for Bill is why I was banished. Bill, of course, was put in restraints.
So, my trust for Dr. A is completely gone! She has perpetuated the myth that Bill is dangerous and unpredictable to the new psychiatrist, and she’s willing to sacrifice Bill’s well-being to the ridiculous time constraints of 12-15 minutes allowed for each patient at ECT by putting him in restraints rather than taking the time to talk to him if he shows any sign of agitation, or prior to him showing any sign of agitation. She also fills him full of extra meds prior to treatment, which makes it that much harder for him to fight through the fog those meds leave him in afterward and think anything like clearly.
Can she, or anyone who makes the policies and does this stuff, imagine themselves in the situations they put the patients in?
I repeated that I want Bill discharged from involuntary care and Dr. K said, “I’ll read the file and assess him. Today is only my second day.”
The file, the one that has at least half a dozen erroneous reports in it that haven’t been corrected. Doctors spend less than five minutes with Bill on the ward. What does ‘assess him’ mean?
I pressed the issue, repeating again I want to take Bill home, that there must be ECT follow-up available in Nanaimo, and even Comox because they have a psychiatric unit there.
Then of course the question of support and safety came up. Linda said she’d contact the Liaison Nurse to talk about it with me. No one who has said they’ll talk to people, or check things, has ever gotten back to me about those things, and no one was ready to say I can take Bill home.
I checked on him before I left the hospital for my second meeting and he was still in restraints.
Second mtg. was with the Seniors’ Advocate’s deputy instead of the Advocate herself, and another woman (don’t know what her title is). I informed them of what happened this morning. Talked about the power of doctors over patient and family and the system as a whole where patients are housed inappropriately and the problems that causes, and the hardships caused to patients and families when a patient is moved out of their region for care.
I also talked about short-staffing, lack of adequate home support when the whole emphasis is supposed to be on keeping patients at home, and lack of training for nurses and doctors who must deal with dementia patients in acute-care settings that are in no way suitable for patients with advanced dementia. I said even the Tertiary Care unit isn’t set up suitably because the resident-to-resident interactions so often exacerbate or cause frictions, and there is nowhere for patients to escape to, and many staff who work there also have minimum training.
I said I don’t know what kind of housing would, or could, prevent that, but there must be another way.
Plus, the turnover means staff who don’t know the patients at all come on shift for one or two shifts and have to rely on the charts for information about a person, and there are things in those charts that are not correct, but the patient’s family doesn’t get to read what’s written and make sure it’s right.
I was assured those things would all be looked into, and addressed. I’ll wait to see where that goes.
I’m not handling things well inside myself. I'd like to tie up everyone who thinks being tied down is a good thing and leave them that way for…oh…a week or so and see how they like it. Day by day, my anger grows until there just isn’t any place for me to put it. My head aches continually. My gut twists and burns. And I cannot stop crying.
I have to leave for home and am hoping I can drive without hitting anyone.