THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
I’m at the hospital when Dr. S arrives. He asks Bill, who is curled up in bed with his head buried in the covers, if he’s in any pain. Bill says no. He looks at Bill's legs, leaves indents where he presses and says he’s going to reduce the Risperidone and talk to Dr. P, though I'm not sure what about. He also says that because there have been no incidents of violence since Bill has been in hospital he’s going to see if Home Support will reassess him.
I nod but am uncertain about how I feel about that. I’ve already met with our Case Manager twice and asked, “If I bring Bill home, will I get support from Home and Community Care?” She said the purple dot beside his name that denotes 'unpredictable and psychotic' means I will get extremely limited support—so the carry-over of unreasonable fear about Bill continues. She told me that also because of the purple dot, policy dictates they must send two workers, and for home support to be implemented at all one must commit to the same few hours on the same day every week. Last time I had home support, even getting one worker when I wanted or needed one was mostly not possible, never at times of my choosing.
Stephanie does her best to help, but the support she can give is limited, too. She works full time and has a daughter who is increasingly involved in activities after school, and needs to be transported here or there. Right now, Steph has a week off and they’re in Victoria for her to visit Haley and sign papers to finalize the sale of her condo and close that page. And during Spring Break she, Lily and Haley will be in Disneyland. Chris lives in Alberta and can’t afford to take time off work and go anywhere, so there’s no chance for help from him. However, I won't say or do anything until I know what the plan actually is.
Still no comfortable chair in Bill’s room.
Was told when I went up at 4:00 p.m. today that Bill was very anxious this a.m. and spent most of the day sleeping. “No one wanted to mess with him,” his nurse said, “so he's just had a very late lunch.” But one of my favorite one-on-ones when Bill had a nurse stationed outside his door while he was in restraints had just gotten him up walking the corridor, and was singing with him. That was good to see. I joined them.
Then I showered him, shaved him, ate supper with him and watched hockey. A 4th year nursing student came in with thigh-high compression stockings for him, and A5-35 cream for his neck, which he had apparently said was sore on his left side. The student said Dr. S ordered the stockings on Thursday and it took two days to get them. She had to go rob the surgical unit for them. Together she and I inch them up Bill’s legs. They’re really tight and it takes a while. Bill tolerates it well.
Bill and I walk between hockey games, and it's the first time I've seen him stand up almost straight in the past few weeks, so I think the stockings make his legs and feet feel something like as strong as they were before the swelling set in. He goes at a lively clip and I hear the nurses at the desk comment on how fast he can walk. Guess they haven't seen it before.
By 8:00 he’s tired out and saying he’s going to die. He’s been saying that when he has to go to the bathroom, possibly because his abdomen and butt become painful. I take him to the toilet, get him to brush his teeth and tuck him into bed. All in all, he had a reasonable four hours—a better day than yesterday.
Little do I know how fleeting ‘better’ will be.
I arrive at lunchtime and cannot rouse Bill, or find a nurse to talk to. At 3:15 p.m. I return and see through his upper door he’s up, trying to put on his shoes. The male nurse at the desk says, “Bill had a rough night. He was 'aggressive.”
“What happened?” I ask.
“Don’t know. You’ll have to ask his nurse.”
Watching Bill through his open half-door makes it clear to me they’d dosed him with Haldol again.
Later, Bill's nurse comes to chat and I repeat my question, “What happened last night?”
She goes to look in the chart. When she returns she says, “He got up in the middle of the night. He was soaked through so two nurses tried to change him. The TED stockings were wet with urine, too, so they were trying to pull them off when he reached out…to hit. They stepped back and he didn't do anything. They called Security. When Security came, Bill didn't do anything. They got him changed. His TED stockings were washed with hot water and they're over there by the heater. This morning he was compliant.”
“When he reached out, did Bill actually do anything?”
“No,” she says.
So I'm thinking, middle of the night. Bill's groggy from sleep and drugs. Two nurses pulling at the thigh-high compression stockings, trying to get them off. When those things bunch up behind the knees, or around swollen ankles, they hurt. He reached out. Didn't say anything. Didn’t do anything. How could anyone know his intention was 'to hit'? Maybe he just wanted them to stop. This will go on his record as ‘violence’ which means Home Care will not reassess him. I think it's past time to talk to Dr. S about the nurses' use of the word 'aggressive'.
I bring Bill home and we go for a walk in the sunshine. Violet lays claim to his lap as soon as he sits down and he laughs. I make supper for all of us, and Bill lies down for a short nap. I’ll take him back to the hospital after 8:00. No sign of 'aggression' on his part.
Bottom line for me is, I cannot figure out what individual caregivers’ responses to Bill will be, or his to them. So, I am stuck reacting to the news I’m given about what happens when I’m not there. I believe Bill is still in control of his actions most of the time. I know he’s in full control all the time he’s with me. But with the drugs and the times and ways staff choose to interact with him, his choices at the hospital are very limited. That’s tough enough for a toddler to accept. Impossible for a full-grown adult.
I’m sure everyone is doing the best they can, but when people are tagged with inappropriate labels, others expect behaviors they’re sure to find. I haven’t always had it, but I’ve learned it takes time, patience and understanding to deal with someone with dementia, and I expect the nurses on duty last night were trying to change him as quickly as possible because they’re still afraid he might lash out. What I know for sure is that if they keep describing things like last night’s behavior with words like ‘violent’ and ‘aggressive’, Bill doesn’t stand a chance of getting into a care home here.
When I take him back tonight I’ll take a pair of knee-high compression socks and put those on him instead. They won't do what the TEDs do, but they'll be a hell of a lot more comfortable for him, and he won't wet them if he wets the bed, so, hopefully no middle of the night drama.
I was told when I went to get Bill at 3:30 this afternoon he'd had a rough day. He hadn’t been washed, was wet and stank. His nurse (one I haven't seen before) said he kept saying he was going to die and asked me if that was new. I said it wasn't, but given the circumstances he was saying it a lot more often. After a shower and getting dressed he was fine. I hate to take him back tonight.
I want to just bring him home period. But even as drugged as he is, he gets up in the night. Sometimes the nurses tell me he's barely slept at all. He’s gone downhill so far and so fast since being hospitalized I have to wonder, what good is it for him to be there? The answer is, NONE. It’s for my state of being—my comfort, my convenience. And sad as it is, I’m afraid that if I bring him home now, I might not be able to handle him 24/7 by myself. And with reports of ‘aggression’ on his part piling up at the hospital, it’s been made clear to me I’ll get no support whatsoever from Home Care.
A while back, I interviewed a gal who was the only caregiver on a list of private caregivers compiled by VIHA who would even consider doing evenings, which is when there are a couple of meetings a month I’d like to attend. But she wanted to look after Bill in her own home, and said she and her husband would take Bill for day-long hikes, and she’d play scrabble and chess with him. I quickly realized she has no clue what someone having had Alzheimer’s for fourteen plus years means.
Corporate outfits such as Nurse Next Door or We Care have told me they’ll do overnights (if they have anyone available), but now that Bill's been labelled the way he has I'd have to hire two workers at a time at $38 an hour for each. Seventy-six dollars for eight hours; $608 for one night. Way, way out of my league. So, for now, I have to take him back to the hospital. I feel like I’m on a roller coaster and it’s possible the car I’m in will jump the track. I cannot imagine how Bill feels.
Yesterday, I arrived at 3:30 p.m. Both the upper and lower doors to Bill's room were closed. When I opened the upper door, Bill's first words were, “I'm in trouble. I made an awful mess.” Water was running in the sink, towel in the sink, towels & washcloths on the floor. I saw he had tried to clean himself up, without much success. He was sitting in PJs that were full of poop and his legs were smeared with it down to his knees. The big yellow pad that had been tucked inside his brief, was soaking wet and full of feces, and the brief underneath it was just as wet and soiled, which told me he’d been given laxatives but had not been toileted or changed. Instead, his nurse/care aide had shoved a pad into his brief on top of an already wet and stinking mess. He was also complaining of stomach pain.
I went and asked who his nurse was and asked her to come to his room. I had not seen her before. Speaking quietly, I showed her the mess.
She said she’d toileted Bill that morning. He was agitated and she’d given him Seroquel. She hadn’t washed him. I said that was more than six hours ago and asked if he'd been given a laxative. She said he had, and someone was in to bring his lunch tray at 12:30. She didn't know if anyone had been in since then.
I asked why his upper door was closed. She said after lunch he banged on his door and then he started whistling loudly. She asked me if he usually whistled when he was mad. I said, “No, he usually whistles to music.” She said the other nurses had told her the same thing, but that’s when she’d closed his upper door.
So, for the entire morning and at least three hours that afternoon, he'd been left alone, no one bothering to ask why he was extremely agitated, banging on the door and whistling for attention. Instead, his pleas for help had been further ignored, this time by closing his upper door and making sure he was completely isolated.
Biting my tongue hard, and trying to be my most diplomatic self, I asked her what I could do to help make things better—easier for him and for them. She said, “Make a list of what he likes and doesn't like. We'll put one in his chart and one on the wall.”
I said, “He doesn’t like having to urinate and defecate in his pants, never mind being left wet and soiled for hours. It is degrading and disgusting to him.” I also told her he was having stomach pain and asked for an antacid, which she brought, and once again it helped. So it seems on top of his other problems Bill now has acid reflux, likely caused by the drugs he’s being given. Thoroughly disgusted, I brought him home and kept him overnight. I’ve already given staff lists of Bill’s likes and dislikes twice. It’s supposedly in his chart. But I’ll do it again. I’ll make a poster, big, and will personally hang it on his wall.
Admittedly, he can be tough to look after these days. Last night he was up every 1½-2 hours. When late in the morning I’d started to get him up so I could take him back in time for lunch because the hospital had called and asked when he was coming back, he began groaning and saying, “I'm gonna die.” It took some convincing to get him to open his eyes. A shower, breakfast, and great dog therapy put him in a much better mood.
During the day, he’s not incontinent with urine or stool if he’s taken to the bathroom when he needs to go—something I simply have not been able to convey to hospital staff at all. Night time is different. He’s been incontinent at night for a few years. The multiple times Bill was up last night is the same thing that’s happened at home and the last time I’d seen Dr. H he’d told me it was a level of sleep deprivation I could not sustain. I know that, but hospital staff are paid to be awake and see to Bill’s needs both day and night and I’ve raised the issue of the bathroom so many times and so many ways I’m out of ideas.
Not in my wildest imaginings did I ever think patients in a Canadian hospital would be treated the way Bill has been. I’ve been in hospital many times in the past, and have always had good care. And I think the substandard care he’s getting is contributing in a very big way to his repeated crying and saying he's going to die, and to any less-than-ideal behavior he might be exhibiting. He’s humiliated and ashamed. And angry that he has no control over anything that’s done to or for him there. In spite of that, in my view he’s exercised great control of his reactions. I know if it was me being treated like that I’d be lashing out far more than he’s ever done. Regardless of how difficult it is or how much time it takes to deal with him now, there’s no excuse for neglect and abuse. Short staffing might have something to do with it, but I think fear, and lack of training, have more.
I'm sick with it all, and so angry I can hardly contain it, but I will because I must. I’m sicker still that I can’t bring myself to bring Bill home for good.
New Care Aide today. When I get there, she’s walking with Bill with two security guards with them. “Bill had a bad morning,” she says. “Another member of the team gave him Seroquel earlier. When I was washing him and trying to clean him up after toileting him, he took a swing at me, then pounded the cement wall with his hand, complaining of pain. I didn’t take it personally,” she says. “We’re trained not to take these things personally.” Then she proceeds to give me a lecture me on how dementia changes a person’s brain.
I’m not sure what to say to her because I know Bill IS in control of what he’s doing—though she plainly thinks otherwise. If he hadn’t been in control, he might have pounded something besides the cement wall. And instead of understanding he was in pain and doing something about that, she ‘didn’t take it personally’.
I take him home for the afternoon. I’ve been given a bunch of drugs to give him at suppertime, and after I give them to him he says his stomach hurts, and points to a place just below his sternum. I give him two Tums to chew to quell the pain right now, followed by an Omeprazole he takes with water. I’ve been taking Omeprazole for years and know it takes a few hours to begin to work, but when it does it has a long-lasting effect.
We watch the Academy Awards, which he seems to enjoy, and I take him back to the hospital, get him to brush his teeth, and tuck him into bed. I hope he wakes up feeling as peaceful as he was when he drifted off to sleep tonight.
Next morning when I call the hospital and ask how Bill’s night and morning have been, the male nurse I talk to says Bill was fine—no problems at all.
I’ve told the nurses I think Bill might have Acid Reflux and given that he’s now being given at least half a dozen drugs—a number of which have nasty side effects including gastrointestinal pain—I would have thought the professionals might have considered he was having pain he couldn’t express properly, instead of assuming the new behavior on his part is because his disease is ‘changing his brain’. And I don’t understand why they didn’t at least try a regular antacid to see if it helped, instead of filling him full of Haldol and Seroquel, which exacerbate the problem.
I don't know what's at the end of the tunnel right now. I have an appointment with Dr. P to discuss it, and though I put a call into Dr. S two days ago I haven’t heard from him, so I’ll be at the hospital tomorrow morning in hopes of catching him, too. I don't know what their current thinking is regarding where Bill will be placed and how long it will take, and I need to find that out. I'm going to call our Case Manager at Home and Community Care and talk this over with her again as well. There has to be some way for Bill to get the help he needs and deserves.
12:30 a.m. and just back from the hospital after an extremely long day. Began this a.m. with a phone call from the LPN who was doing her third day shift with him, and each day has managed to escalate the situation to where she informed me that today she could not get Bill to do a single thing. She said he wouldn’t eat his breakfast, spat out his pills, wouldn’t let her touch him, wouldn’t let anyone near him, and spat out his soup at lunch. “He had a terrible night and morning,” she said, “and Security was afraid to go into his room.”
That brought me up short. What the hell are security staff trained for if not to go into a patient’s room when they’re in trouble?
When I got there right after lunch, Bill was curled up on his bed, not about to co-operate until I told him I couldn’t help him if he didn't help me and I would have to leave. He sat up, cried, moaned about pain and being wet and cold.
The LPN brought a tiny pill cup with a miniscule bit of pudding in it and chunks of pills and handed it to me. Said he hadn’t had any pain meds since the night before.
I handed Bill a cup of water in one hand and got him to take the mix off a spoon, but he grimaced and spat it into the water in the cup. I asked his nurse to just bring me his pills, gave him a second cup of water and convinced him to take them.
The LPN said she thought he had a UTI (urinary tract infection) and explained to me how UTIs can change a person's behavior. She’s the same LPN who thought she needed to explain dementia to me. She wanted to take a urine sample but couldn’t get one.
I said, “He's never had a UTI in his life and I doubt he has one now, but I’ll get you a sample.” I asked her if she would just stay outside the door and watch. Which she did.
I got him into the bathroom and onto the toilet and sure enough he needed to evacuate a pile of stool. But having been left the way he has been for hours each day has irritated his butt. He told me it was burning. As gently as I could, I cleaned him up. Not without some issues. Each time he complained, I stopped, waited, then asked him if he wanted to be clean and dry, to which he replied yes, and settled back down.
While I was changing and dressing him, the LPN asked me if I was going to take him for a walk and when I said yes, she said she was very concerned and I should not do that. I told her we'd be fine and no, we didn’t need Security.
After our walk, I got a urine sample from him by simply waiting until the next time he said he had to go, waiting until he started urinating into the toilet and putting the catch-bottle into the stream. I’m 99% sure it will rule out a UTI, but now they’ll know.
Later, she came back into the room and said she wished I could see the difference between how Bill responded to me versus how he responded to them. I said, “I'd love to be a fly on the wall and just observe so I could maybe help, but he doesn’t respond to everyone the way he’s responding to you. He responds to fear with fear, which means fight or flight.” Unkind to lay it at her door, I knew, but I was fed up.
Her response to that was to say, “We're trying. We tried everything.”
I commiserate with her to a point but I do know that each day this LPN has been on duty the situation has escalated to where Bill simply won't do anything she asks, and when he digs in, it's tough to move him.
When I stopped by the desk to ask my favorite male nurse what had been happening, he said, “I wish there were more of us”—meaning male nurses—“because I don't have any trouble with him and neither does John. I think it's in the approach.”
I’m completely on board with that thought. “I know how good you and John are with him,” I say, “and I really appreciate it. It’s not just gender though. Lots of the females don’t have trouble with him either.”
I went home for a break and near suppertime got a call from the Seniors' Liaison Nurse. She said she'd heard an earful from the LPN after her shift with Bill and wanted the story.
When I told her, she said the LPN had reported Bill being very aggressive toward her.
I asked what he'd done and the Liaison Nurse said, “He threw a pillow at her.” I heard in her voice the suppressed laughter.
“So he threw the softest thing he could find,” I said. “Given the level of his frustration, I personally think that showed an incredible amount of control on his part. And for that Security was, and I’m quoting, ‘afraid to go into his room?’ That’s what she told me.”
“I’m going to go over the charts and see if there’s a pattern,” she said.
“Good. I’m coming back after supper and staying as long as I can stay awake. I want to just sit in a corner and observe what’s going on with care. By the way,” I add, “there’s still no comfortable chair in his room.”
“I’ll see if I can get one,” she said.
Over time, it’s boiled down to three or four caregivers who have real trouble with Bill. Unfortunately, another of them was on tonight. Hence I thought it prudent to go back after supper and watch. It turned out differently.
When I got there, the night nurse said she hadn’t been able to change Bill or get him ready for bed, or get him to take his pills. “Can you help?”
I’d apparently missed the window to observe, so agreed to help. “I don’t think the pills taste very good crushed in the tiny amount of pudding you guys use. Maybe bring me the whole pills and water.” She did, and Bill took them without difficulty.
After I got him ready for bed, I sat in his uncomfortable chair reading for a couple of hours, then crawled into bed with him for a few more hours and when I was sure he was solidly in sleep land, came home.
Right now, my primary concern is to make our GP understand the reports the nurses who are having trouble with Bill are giving are tainted, so that what happens in the long term regarding where he’s sent is not affected adversely because of them. I don’t know how much hope I have. The Liaison Nurse said she understands this and is fighting to make sure what happens for Bill is in his best interests, not because some staff are taking their own insecurities out on him.