THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
Yesterday when I got to the hospital about 11:00 Bill was still in the cell room, and when I walked right in and plunked myself down beside him on the bed, his nurse—who was a male—muttered, “No hesitation,” and left, but there were two security guards present in the room.
Bill was drooling, something he’s never done before. That means another new drug. And though he responded to me well, I could see in his eyes he didn’t really connect to who I was. So the drug was really knocking him back. I sang a few songs, then took him for a walk in the tiny anteroom, all with the security guards right with us. While I was walking with him, his nurse came back and told me he was moving Bill out of there into a room on the ward, which happened immediately. Hurray, I thought.
After he was moved to the ward and Security decided they'd seen enough to leave me alone with him, and his nurse went off to do other things, he wet himself and became agitated and wouldn’t let me change him or wash him. At one point, while I was trying to put one of the tab diapers they’re using on him, he made a break for the door and freedom, and I had to pull hard on the tab and his pyjama top to stop him. He made no move to hurt me in any way, but he made it extremely difficult for me to get the thing on him, and when a Care Aide appeared I was still trying. I asked her to please get some pull-ups, which she did. He stepped into them without difficulty.
Non-recognition is something I’ve been telling myself to expect and brace for, but it was a shock all the same. More so because it wasn’t the disease doing it. How much it affected me showed when I left the hospital and couldn’t find my car keys. I went back in and searched his room, the lunch trays, and retraced all of my steps again. I looked in my purse three times; then called the BCAA to come and unlock my car, thinking I must have left the keys in the jacket I had left in the car.
They weren’t in my jacket and I stood leaning against the car for some time, trying to figure out what to do before I opened my purse again to get a Kleenex, and there they were. How, I wondered, is it possible to look right at something you want and miss it several times?
Today I needed to be on tap for Lily when she came home from school, so I didn’t go to Comox. Dr. S called and said Bill hasn’t shown any kind of resistant behavior to staff there.
“He’s directable and sleeps a lot,” the doctor said.
To Comox at noon. Bill clearly recognizes me, and I heave a huge sigh of relief. We have a pleasant lunch together. He’s free to leave his room here whenever he wants and there’s a Care Aide stationed outside his door who has just two or three patients to look after, so when he needs something, she’s there. Also good to see. The other patients all seem to be quite young and they come and go from a variety of rooms, including a dining room and an activity room, where there are books, games, and a TV with a DVD player. The hallways are short and there is no loop, so Bill and I walk back and forth, up and down a few of them. He tires easily though, also an effect of whatever new drug he’s on, so we spend most of our time together in his room.
A week in, I ask about bringing Violet to see him, something I hadn’t been allowed to do in Campbell River. Dr. S and the nurses okay it. The day I do, every staff person comes into our room to pet and hold her. Seems it’s as much therapy for them as it is for Bill. And shortly after we walk the halls with her and other patients hold and kiss her, another person comes in with a big dog. The whole ward seems happier that day.
Week two. In the time he’s been here, I’ve cut his hair, showered and shaved him, and taken him outside for walks. There is usually a Care Aide close by, but no Security. Then Dr. S calls me at home to tell me Bill pushed a caregiver. “Our fault,” Dr. S says and when I get to the hospital Bill’s nurse tells me the story. “It was a Care Aide. Bill mistakenly walked into someone else’s room and instead of just taking hold of his hand and saying ‘Oops, wrong room, Bill. Let’s go this way’, she grabbed him and tried to pull him out. He pushed her, but didn’t hurt her. They don’t have enough training,” Bill’s nurse said, and I am both gratified and amazed that finally someone seems to get it.
Bill is extremely droopy some days and one day when he called Dr. S said Bill wouldn’t move from his bed to his chair for breakfast when a Care Aide wanted him to. “But I went in and got Bill to move quite easily,” he said. “Guess he responds differently to different people.”
“Yes, he does,” I agreed. Then I asked, “Why did you certify him?”
“We had no choice,” he said. “He choked a worker at Adult Care and attacked you.”
My voice got tight. I’d told him this before. “He did not do that. He threatened a worker but he didn’t touch her. I verified that in person at Adult Care. And he did not attack me.”
Silence on his end. Then he said he had a meeting and had to go.
Second Move Pending
The staff doesn’t change nearly as much as they did in Campbell River, and by the third week I’ve gotten to know them quite well. So, has Bill. Overall, it feels like a much better situation than Campbell River was, but it isn’t going to last.
Met with Dr. S this morning. He says Bill will be moved to Victoria next Thursday (March 30). He’ll be away that week and the next week, so the psychiatrist handling it from here will be Dr. F, whom I haven’t met. He says I can't miss her, she's 6'3" tall! And, he says, she's nice. Hope so.
Dr. S says Bill going to Victoria will buy us some time to prove he doesn’t need to be detained against his (or my) will, as his designation at the moment permits them to do. To date, there have been no incidences in Comox where Bill needed to be restrained in any way. When he resists something, staff back off and try again later. Not half a day later as often happened here, inside an hour later. And they check on him at very regular intervals.
I’ve asked Dr. S if Bill is allowed to come back to Campbell River, could it be to the care home where Dr. S is in charge of the tertiary care unit and the doctor was very amenable to that, which makes me really glad.
Dr. S hopes Bill won’t be in Victoria long, but he says it will be up to the psychiatrist there to decide if and when Bill may be able to come back to Campbell River, which frightens me. Once again, there will be people who know little about him and nothing about his life at home assessing him and deciding our lives.
When I get home, there’s a copy of the mental health act from St. Joe's in the mail. It makes interesting, and disturbing, reading. First off, an involuntary patient may be detained for one month from the date of admission and, if not already discharged before then, must be discharged at the end of that month unless the authority for the patient's detention is renewed.
If Bill's physicians state Bill doesn’t meet the requirements for discharge within that month, Bill has the right to be examined by another physician before his certificate is renewed, and if that physician determines he continues to meet the criteria for involuntary admission, the renewal can be for one more month, for three more months following the second month, for six months following the three-month period, or for further successive periods of six months. Which means, unless Bill, by his behavior, can persuade them he’s fit to be discharged from involuntary hospitalization, he could be kept forever.
But, an involuntary patient (Bill), or person acting on his behalf (me), has the right to request a review of the patient's detention, via an application, for review by panel hearing, and I would have the right to participate in that hearing.
Another option is to apply to the Supreme Court of B.C. to determine whether there is sufficient reason and authority for the medical certificate.
Thirdly, I also have the right to request a second medical opinion on the appropriateness of Bill's treatment.
All of this has to be done via application on specified forms, and takes time.
The fact Bill is being moved to Victoria three weeks after being certified hasn’t escaped me. That means Victoria will have him for just one week before they have to release him, or recertify him. And I know release isn’t going to happen that fast. So in spite of his kindness and the fact he’s told me Bill has been co-operative, Dr. S isn’t willing to release him either. And there’s no way I can get said second opinion from any new doctor before the move.
I pray the people in Victoria will see what they’ve seen in Comox—that Bill is not a risk to attack and hurt someone because he has lost control of his impulses. That his resistant behavior is an effort on his part to maintain some sense of self and some dignity when either of those things are threatened by aggressive behavior toward him by a caregiver.
I'm not sure how I’ll handle the transfer location and travel wise as I am quite tired already by the travelling to Comox, but I have no choice and will find a way.
When I arrive to see Bill at 3:30 this afternoon he is a complete zombie, sitting slumped over and he doesn’t greet me or even raise his head. The afternoon Care Aide is trying to feed him his lunch without much success. But when I offer him the chocolate milk and cake I've brought, he perks up a bit.
Apparently he didn’t sleep at all last night and this a.m. pushed his Care Aide, though his nurse told me he didn't push him hard and no one was hurt. Up all night takes a heavy toll. I’m wondering if his meds have been changed.
When I ask him if the Care Aide and I can wash his hair, he enjoys it and perks up a bunch more. It’s the first time I've ever washed anyone's hair with them sitting in an easy chair almost smothered in towels and us using cups of water instead of a sink to wet and rinse it.
The Aide and I almost pull it off without getting his t-shirt wet, but not quite, so when we’re finished a change of tops is in order. Then a shave, and then we walk and sing.
As we walk, several patients on the ward fall into step behind us and everyone is singing the ants go marching one by one, hurrah, hurrah, especially the chorus: Boom boom boom boom— Boom boom boom boom. Staff come out and line the hall. Both staff and patients are laughing the whole time.
I hate to leave but am tired. Made more tired I think because I’ve been trying to get a new GP for me and Bill, and am realizing it’s not an easy thing to do. Every new doc who comes to town and says they're taking new patients fills up their slates almost immediately. However, I did put us on a wait list with one clinic today and will go to another one tomorrow.
When I’m leaving, Bill follows me to the exit door and we hug. “I’ll be back tomorrow,” I say.
“I’ll be here,” he quips, which makes me laugh and also breaks my heart.
Something Needs to Change
Bad news on all fronts. Bill's legs have been giving out. Several times in the past week he's slumped to the floor. Dr. S says he may end up in a wheelchair. So now I’m certain he’s on new meds again. If they're going to kill him with meds, I wish they’d do it mercifully—fast.
I've picked up the flu. Probably due to a combination of being tired out and having had a sick little girl in the bed beside mine for the better part of a week before Stephanie, Lily and Haley—who still lives in Victoria but went with them—left for Disneyland.
Sadly, Stephanie emailed to say poor Lily, who was nowhere near well when they left, has relapsed and spent the last two days there in the hotel bed instead of having fun. So Haley has had to go on the tours they booked by herself. That’s no way for any of them to have to experience the holiday.
I’ve booked myself into Heart House in Victoria from Thursday, March 30th, to Friday, April 7th. By then, I should have some idea how long Bill might remain in the Jubilee, or what the plan is. I'll come home for a few days and return.
On Sunday evening I watched CBC's W5, in which there was a lengthy piece regarding a landmark class-action law suit being launched against Revera—one of the biggest care-home chains in the country. In that law-suit, over thirty families (which number might continue to swell) are alleging abuse and neglect which, in some cases, led to their relatives' deaths.
Some patients were left in ungodly pain from falls that weren’t treated by doctors (and sometimes not reported to the relatives at all) and the patient was not given adequate—or sometimes any—pain medication. Some had unexplained bruising and broken bones. Some had developed massive bed sores when they became bed-ridden from falls or for other reasons, and weren’t properly re-positioned. And in one case sepsis developed in a huge bed sore from feces being left in the wound, and the patient died from that sepsis after being left to scream in pain for weeks. Horrible scenarios, every one of them.
The lack of care Bill has received in our hospitals is not on that scale. Most of the doctors and nurses do try to take care of him. In Comox, they do watch for skin breakdown, and they are trying to find the balance of medication that will keep him comfortable, manageable, and allow him to function.
But in the nine weeks he’s been in two hospitals he’s gone from someone who could walk 8 km. in just over an hour, verbalize his needs, dance, liked to be clean shaven and to enjoy a long hot shower, and attended a day program three mornings a week and participated in everything they did, to someone who can’t stand up long enough for his soiled garments to be changed and for him to be washed.
When I’m doing his personal care, he keeps wanting to sit down. Nor can he say what he needs when he needs it anymore. He now walks at a snail's pace and needs to be led by the hand to do so. He’s never shaved (except by me), does not get his feet washed, his hair washed, or his nails cleaned or cared for (except by me), and often can’t even open his eyes long enough to eat a meal. I’m positive that’s all because of the drugs.
No one can know what this is like unless they've gone through it themselves, even our kids. And I just wish no one else had to go through it. Yesterday, they lowered the dose of medication Bill’s getting, and today when I was walking with him, holding his hand, he made a dash for it, hoping I think to make it out a door, any door!
He pulled me with him and I was trying to slow him down and heard a couple of voices behind me asking if I needed help. I said, “No, I'm okay,” and Bill did slow down, but that showed me (and staff) he is still capable of moving very quickly when he really wants to.
He's extremely restless today. Also, when the nurse tried to give him his anti-psychotic this afternoon—mixed with pudding—he kept spitting the half-pill out. Until I held it in front of him and told him I wanted him to take it and asked him if I put it in his mouth would he promise to swallow it. He said, “Promise,” and we got it down him. But it was a challenge.
What that showed me is that he understands fully which medication has what effect on him, and he doesn’t like being a zombie. Unfortunately, they do fill patients full of drugs, purportedly to make the patient more comfortable but really to make it easier for the caregivers. Not that it does.
I don't know why Bill sometimes feels threatened or becomes afraid in the bathroom, but in Comox, as they did here, they now have two security guards attend whenever a caregiver has to toilet or change him because two days ago he scratched a nurse. When Dr. S called me, he told me it was likely staff’s fault that happened, but because it happened it is now protocol Security must be called whenever anyone changes or toilets him.
When I’m with him, I just go ahead and do it and I don’t have any trouble. Yesterday I toileted him twice and changed him once and the Care Aide assigned to him did not call Security when I did it because she could see he responds well to me. But I think she got into trouble for not calling Security.
Unfortunately, he is becoming somewhat unpredictable with all the drugs and changes in drugs affecting him in ways I don’t think are understood at all by the professionals, and he might really have the potential to hurt someone if he actually does lose his impulse control to that extent. Today I saw a look in his eye I didn’t recognize, and it made me uncomfortable.
The whole hospital scenario has been so bad for him. I wish to God I had never agreed to it and that I had a pharmacist in my brain that would magically come up with the answer to all of this. I’m praying they can find the right combination of meds in Victoria that will keep him comfortable, and manageable, without making him a complete zombie.
This is a horrible situation in anyone's books. Heartbreaking in mine. Something has to change!
Just called Comox and was told by Bill's nurse that a bed in Victoria for him is not confirmed and he probably won’t be moved to Victoria tomorrow, and it could be into next week before he is, if then. And that they may not know when he'll be moved until the day it happens.
I said that makes it pretty hard for me to arrange accommodation, and she agreed, but there is nothing they can do about it. So, I've cancelled my reservation at Heart House and will just have to wait until he is moved before I know for sure when.
She said last night he slept well and today he has been active, directable and calm. “Well, not ‘directable’,” she amended, “but calm.”
I replied that calm is good. I have not met Dr. F, but she has already called me twice with updates and is indeed very kind. Makes me wish Bill was staying in Comox.