THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
Dr. A just called to say Bill is not happy and he is not walking well. He has an impaired gait. First, she talked about ordering a cat-scan of his hip but immediately switched to talking about doing ECT (electric shock therapy) because he is not responding to medication. This is one day after she changed his anti-depressant. She said the effects of ECT were well-known to help people with depression. Not well known when used on dementia patients.
I explained Bill has a shortened left leg due to a broken knee when he was a teenager, and he has back problems from that, which sometimes causes sciatica down his left side. She confirmed it's his left side he's favoring, but she can't get out of him whether he's in pain or not. I asked her to please try some pain meds and said that a combination of 1 Advil, 1 Acetaminophen and 1 T3 has worked well for him in the past. I said I’d have to do some research about ECT. I find myself winded with what I consider incredible speed toward a very serious step in treatment I don't understand at all.
Read about ECT on the Mayo Clinic’s website. As Dr. A indicated, there is very little known about its effect on patients with dementia. Asked a doctor friend, who said she used it in the UK and it had good effect on some patients with depression. Another friend, whose husband was my doctor in Dawson Creek and who have both been our friends since they moved to Comox after Bill and I came south, said that when they were filling out living wills, the one thing she stipulated she did not want under any circumstances was ECT. She knew some people who’d had it and wished they hadn’t. So, I’m confused and frightened.
Called the hospital tonight and was told by Bill’s nurse that on Saturday the first female patient on the ward sat beside him on the loveseat, staff heard a scream, and the patient said Bill choked her. And I surmised that’s why Dr. A is advocating ECT.
The nurse said the good bit is that the patient has now learned to keep her distance and give the others their space. However, it means that the chances of Bill ever coming home are slim to none.
Dr. A was at the hospital when I arrived at ten in the morning yesterday and we had a lengthy talk. We talked about what happened to Bill in Campbell River and we both agree the resistant behavior to personal care seems now to be an almost automatic defense he uses when some staff are tending to him.
She repeated she thinks he is very depressed and frustrated, and I agreed. We also agreed that he understands most, if not all, of what’s being said to him, even if he can’t or isn’t inclined to form a response.
We talked about ECT and she said she’ll have another doctor assess him because it takes two to order ECT, but she does believe it will help alleviate his problems. (Much, much later I’ll also learn it’s one of the only treatments they cannot do without my permission, too). She said she no longer feels drugs will do what she’s trying to do with them. I totally get that, but not because of the reasons she might think. No one could deal with the legion of drugs they’ve given Bill. The fact he’s been able to stay on his feet is a never-ending source of amazement to me, and a testament to his incredible strength. I suggested the drugs be stopped so we can see what happens without them, but she said no to that. She’ll call me Monday and update me.
This afternoon, I ask one of the nurses if Bill did choke the female patient. “No,” she says. “The Charge Nurse suggested it. She asked the patient if Bill had choked her when she screamed, and the patient said yes.”
While Bill and I walk the hallway, the female patient, who had supposedly learned to stay away from the men, pesters him mercilessly. He simply answers her oft-repeated questions about where her son is with, “I don’t know. He didn’t tell me.” And when we sit in the common room and she tries to sit next to him, he moves. It seems what he’s quickly learned is to do his best to stay away from her. While she clearly isn’t in control of herself, he knows exactly what he’s doing.
Just before lunch he has to go to the bathroom and I take him. He sits and has a big, soft BM, but he screams twice while he’s having it—something I’ve never heard him do before.
Two nurses run in. By then, he’s off the toilet and I’m cleaning him up and they can see he is fine.
“What was that?” a nurse I’ve not seen before asks.
I reply, “I think maybe pooping is burning his butt. Or sitting on the hard toilet seat aggravated his sciatica.” They’d stopped giving him T3s for it because it constipated him. All he was getting was Tylenol, which I know from experience is not nearly enough to combat the nerve pain of sciatica.
They can see I’m not having any trouble with him and they leave, but they ask me to please call them if I take him to the bathroom again.
After a nap, he’s soaked and I push the buzzer, then head for the bathroom with him. I have no trouble positioning him in front of the toilet or taking off his wet gown and tab diaper. He’s urinating when two nurses arrive. They’re both new to me. One, I will learn later, is the Charge Nurse who reported Bill had choked the female patient on Saturday.
The two proceed to flank Bill, who has willingly done everything I’ve asked him to do. But the Charge Nurse tells him to sit down on the toilet seat so they can take off the stretchy pants they put on over the tab diapers to keep them up. When the other nurse kneels in front of him and tries to get him to lift his foot, he kicks at her—not hard and he doesn’t connect, but his intention is clear. He’s telling her to get away from him.
The Charge Nurse speaks his name sharply and starts to lecture him, which earns her a nasty look from him and does nothing to ease the situation, so when she takes a breath I lean in and calmly ask him if he wants us to help him. He says yes. I say, “Okay, then you have to lift your feet,” and he does and there’s no more trouble getting the job done.
But he isn’t done fighting. Right after the nurses leave, I ask him, “Why did you kick at that nurse?” She had seemed like a very sweet soft-spoken girl to me. He doesn’t answer and I say, “I want you to answer me please.”
He shoves me and says, “Get away and stay away.”
“That kind of behavior is unacceptable,” I say and he calms down.
“Will you stop fighting the nurses, yes or no?”
“Yes,” he says.
It’s crystal clear to me he understands every word.
I change the subject. “Do you want a haircut?”
He smiles. “Yes.”
I buzz and when his nurse comes I tell her I want to cut his hair.
“Okay,” she says, “but only if you do it in the common room.”
The common room can be a noisy and confusing place and I’d much rather do it in Bill’s room, but I agree.
But when she goes to get some scissors, the Charge Nurse vetoes it. “Not a chance,” she says. “His behavior is unpredictable. Sharp instruments are not allowed here. Our scissors are kept locked up and the person who let you cut his hair before was wrong!” She is so rigid while she’s talking to me she is shaking.
Interestingly, this nurse then tells me she was once choked by a patient and was off work for four months because of it. So…I’m guessing she has real fear issues.
More than ever I want Bill off that ward. Though Dr. Argouarch had told me I could take him out, so far I haven’t been able to do so. Now, I’m determined. I go to the hub to talk to the Charge Nurse. “No,” she says. “You can’t take him off the ward.” No explanation is offered.
So, I think that while Dr. A ostensibly agrees with me and told me I could take Bill out, it seems she has bought into the ‘violent and unpredictable’ tag completely. Later, I’ll learn it’s Dr. J who cancelled any pass for Bill when she was told he choked the female patient and apparently was never told he hadn’t.
And on it goes.
The Ring of Untruth
Today when I go up to the hospital I meet Bill walking the hall. He says he has to go to the bathroom. I take him to his room, but the door to his bathroom is locked. A Care Aide is passing, holding tight to the waist of the female patient, who then struggles to get into Bill’s room and keeps crying out, “I want to see if he’s all right.” The Care Aide unlocks the bathroom door and asks me if I’m okay by myself. I say yes, and she tells the female patient, “You can’t go into men’s rooms,” while she pulls her away and down the hall.
Later, I want to give Bill a shower and wash his very greasy hair, but his shampoo, body wash and razor are not in his bathroom, or room. I buzz, and his nurse tells me they’ve moved his stuff to the tub room and I am no longer allowed to do any of Bill’s personal care.
I march to the hub and knock on the door and ask to talk to the Charge Nurse. Different one from yesterday. She’s the first nurse I met when Bill was brought here from Comox, but she hasn’t been Bill’s nurse since that first week. She comes to Bill’s room with me. “It’s a new policy,” she says, “because yesterday a family member was hurt without warning and the new policy is staff has to do all care.”
“And Bill yelled yesterday,” Heather—one of the two who came to the bathroom when Bill had yelled says.
I can barely comprehend the unsettling feeling I get. Do they think I hurt him? I struggle to keep my voice calm. “I think his butt was burning because he had been constipated, or his sciatica was hurting him. As soon as he stood up he was fine. And you came to the bathroom yesterday and saw that he was fine.”
The Charge Nurse says, “Earlier today Bill was moving so fast down the hall he was practically running. If anyone had been in his way…” She stops there, implying he would have charged right into them, which I know very well he would not have done. It seems they can’t peg him with enough lack of control of anything fast enough to suit them. Or maybe they’re stressed because there is now a second female on the ward and both staff and patients seem to be running around a lot more.
With tears running down my face, I struggle to find words and sob when I say, “I feel as if every single thing is being stripped from me and from Bill.”
“You’re here to give him the loving,” the Charge Nurse says.
Anger fuels my response to that. “Loving in both our worlds now means doing the things that make him feel better and helping him enjoy everything he’s still able to enjoy. But it does not register with those taking it away from us that doing his personal care is now the major portion of the things that give us both some pleasure and some intimacy. This has gone from safety to something else that is ridiculous. Everything is being taken away from us and neither I nor Bill has done anything to deserve that!”
The Charge Nurse hugs me and says, “There’s a team meeting Monday morning.”
“Good,” I reply. “I want to be part of it.”
Please God, I pray, somebody get us out of this nightmare.
A doctor I haven’t seen before approaches me in the common room. We’ve just had lunch and I tucked Bill in for a nap. The doctor introduces himself. He’s a GP, not a psychiatrist, and says he’ll be looking after Bill. We talk, and it seems we have the same ideas about every patient being an individual and that they should be treated as such. He vows to do everything he can to get Bill back to C.R. as soon as possible. I’m not sure what that means but he doesn’t elaborate.
Then he launches into a discussion about ECT. He says he’s used ECT with adult patients and nothing works as well as it does to quickly help someone who is deeply depressed or has become aggressive. When he leaves I think ECT will be the treatment of choice discussed at the meeting on Monday, and at this moment in time I think that if it has a chance of getting Bill to where they’ll discharge him I’m for it. What I don’t know then is that that is the first and last time I’ll see that doctor, or hear anything from him, and I’ll realize much later he was the second opinion Dr. A told me she needed to use ECT on Bill. And I’ll wonder, How much time did he spend with Bill, if he even met him?
Then I talk with the Charge Nurse, who is the same one who was on yesterday. She says she’s been thinking about me all night and if she had a spare room at her house she would offer it to me, which I think is incredibly kind. She assures me I will be part of Monday’s meeting, and says the Social Worker will also meet with me Monday morning.
But I still am not allowed to do Bill’s personal care.
When he tells me he has to go to the bathroom, I tell Heather, his nurse, who says she’ll be right there. We stand outside his locked bedroom door for five minutes before she appears with a key, then I sit on the bed with him and watch her get things ready.
She brings a basin of soapy water, towels and a clean brief out of the bathroom into the main room and puts them on the moveable bedtable, clearly not expecting to take him to the toilet. Then Bill and I sit for another twenty minutes to wait for Security to arrive. That whole time I rub his back, and sing to keep him calm, and he is, though he’s in some pain trying to hold on, and can’t.
Instead of simply asking him to stand when they arrive, the two security officers take his hands, count to three and pull him up off the bed. They lead him to the stand where the water and towels are and hold Bill’s hands while his nurse and the Charge Nurse strip off his diaper and wash his front.
He told me he needed to poop and had passed gas while we were waiting, so I tell the nurses he needs to have a BM. The security guys then tug Bill to the bathroom and instead of just asking him to sit on the toilet, they count to three and force him down.
He immediately stands back up. This happens twice more before I call, “Bill, do you need to poop?” He says yes and I say, “okay, just sit down and go ahead.”
He sits. We wait. The Charge Nurse leaves, saying her shift is over.
Nothing happens, and when Bill stands back up the guards again hold his hands tightly while Heather fumbles for several minutes trying to get the diaper on him. When that’s done, instead of the guards releasing Bill’s hands and letting him walk out of the bathroom, they continue to hold him back. And Bill fights them, pushing against the hands that are holding him with his hands, trying to free himself and leave the bathroom.
They yell at him but he keeps fighting. He’s not doing anything except pushing against their hands, but they keep pushing him back instead of letting him out of the bathroom.
I call his name a couple of times and step up to the bathroom door, and he stops fighting. “Look at me,” I say. “Breathe. You’re all right. Just come and sit on your bed beside me.”
The security guards still don’t let him go. Instead, they pull him over to the bed. I pat the bed and he sits beside me and remains quiet and calm, and the guards and Heather leave the room, laughing at some joke someone cracks on the way out.
What all that tells me is that they do not expect to take Bill to the toilet when he has to go. Instead, they expect him to wait until they’re good and ready, and also to both urinate and defecate in his pants. The same way they did in the C.R. hospital. And neither the guards or nurses ask permission or take any time to let Bill co-operate. They immediately force him to be wherever they want him to be, and to do whatever they want him to do. Who on earth would not fight that?
Time restraints have something to do with the kind of care Bill is getting. The staff are only human and can only do what they’re able given time restrictions. But there is more to it than that. I believe it’s a profound lack of understanding of what keeps a person with dementia stable in any sense that causes people in the system to make sweeping policies that wrap patients and families in an ever-tightening web of restrictions because of what someone with dementia MIGHT do. And a lack of understanding of what constitutes good care that creates scenes like the one I just witnessed.
In my opinion, it’s also a mistake to think the restrictions they impose will keep staff, or anyone, safe from someone who is truly psychotic and snaps at some unpredictable trigger and does harm. And I think the kind of treatment I just saw will inevitably result in someone snapping because it is abuse.
Next morning when I arrive on the ward, I’m told the team meeting will be at 9:30. While I wait, I feel anxious and my anxiety increases when Susan, the Social Worker, comes to get me in the common room. I tell myself what I told Bill yesterday. Breathe! We leave Bill’s unit and go across to the ward where the ‘less-dangerous’ patients are. They get to use real cutlery and real bowls and plates there instead of the plastic knives, forks, spoons, bowls, plates and cups given to patients at meal times on Bill’s side, but they are still locked in. Susan opens the door to a small room with a low table in the centre, with four chairs around it. I see two other people are already there. Dr. A and Erica, the Clinical Nurse Leader for 2 South. I take a seat beside Susan.
Susan says, “Why don’t you start, Jocelyn.”
“Uhm, okay. Most of the staff on Bill’s unit have been exceptionally kind to me and they’re as accommodating as their time allows, but I’ve been told it’s now policy for staff to do all personal care because some family member was hurt without warning. Bill has resisted personal care from some, but he’s never hurt anyone. However, a couple of nurses seem to think he’s on the verge of launching some sort of attack against anyone at any time.”
Erica says, “It is not hospital policy for staff to do all personal care but there are always some who think there’s only one way to do things.” Which lets me know what those two nurses told me is a crock.
Dr. A stresses it is only with personal care Bill has resisted anyone and there have been zero instances of aggression in any other aspect of his being there—and that she knows I am a calming influence on him.
Erica says, “I’ll make sure some education for the nurses happens.”
Then I describe the entire treatment I’d seen regarding how Bill was changed and say, “When I stepped up and spoke to Bill, he stopped fighting the security guards right away but they still didn’t let him go. I asked him to come and sit with me, and they kept hold of him until he sat down beside me.”
Dr. A says, “What do you think would have happened if you hadn’t been there?”
“I don’t know,” I reply, “but I think Bill exercised considerable control. He didn’t kick, or bite, or try to head butt the guards. He didn’t do anything except push against the hands that were pushing him back and keeping him from leaving the bathroom when he was changed. And it’s clear no one intends to take him to the bathroom when he has to go.”
She looks thoughtful but doesn’t reply to that.
There’s a lengthy discussion about ‘what now?’ that proves how difficult the problem has become. Dr. A says she is 100% sure no facility will take Bill if he will not accept personal care from staff, and me looking after him 24/7 is not humanly possible and adds, “So if he's at home, and you have some care for some hours a week, what happens if you get sick?”
“I’ll contact Evergreen again and talk to the owner and find out if they might accept him for respite, and make it clear they have to be able to handle him if he resists personal care from them. And I’ll look into the possibility of hiring private care at home, but I’m not optimistic I can find two qualified people who will come in to our house for three or four hours a few days a week. So, my preference is Tertiary Care in New Horizons under Dr. S.”
Erica says she’ll contact the Tertiary Care unit at New Horizons to find out if it's possible for Bill to be accepted there, however she's pretty sure they won't take him unless his resistance to personal care can be managed without security having to be present.
ECT also comes up. Dr. A says, “It’s been more successful with depression than with aggression, and Bill's not depressed when you’re here.” Which really makes me wonder why he's still being given an anti-depressant and an anti-psychotic. It boils down to the issue of staff care. I ask what other options there are; she says different, stronger drugs, but she isn't hopeful that will change anything. I ask if drugging him to the point he's non-functional would make things any easier for anyone, and everyone agrees it would not. I feel like I’ve no choice but to accept ECT. If I don’t, Bill will never be released. Dr. A says it will start next week.
The upshot is that I am re-instated with being able to do Bill’s personal care when and how I want to, and I feel validated and vindicated.
Later, I'll learn it was vetoed by the Clinical Co-ordinator, whom I have never met, when Heather told her Bill yelled when I put him on the toilet, and much, much later I'll learn how powerful Heather is: how much sway she has with both Dr. A and the Clinical Co-ordinator. Right now, all I know is that I hope ECT will let Bill find some peace.