Downs and Ups
Day eight. After lunch we walk, and today’s security guard doesn’t bother following us at all. He waits by the nurses’ desk and chats with them while Bill and I do the rounds. And when I take Bill for a shower, the guard stays by the nurses’ desk.
When we get back to the room, Security has disappeared and Bill is not re-restrained. He can walk around the room and sit with me. I am pathetically grateful for what seems to be progress.
I show him a book I made for him and brought with me today. Bill Reekie’s Book of Family and Fun. Inside are letter-size pages with pictures of our life together and a small amount of text. The pages are in plastic sleeves, in a 3-ring binder, and easy to turn. He spends over an hour looking at the book, smiling and laughing the whole time.
Hearing us laugh, the Care Aide outside his door asks me what’s up, and I show her the book. She takes it to the Director of Nurses, then returns to tell me it’s beautiful and the pictures made her cry. Today’s Charge Nurse also comes by to say she loved it, and so does the Director of Nurses.
But I learn when I’m leaving they aren’t ready to free him from restraints completely. Today’s Charge Nurse, who is great, warns me that though she’s fine with me showering Bill on my own and leaving him unrestrained while I’m there, tomorrow’s nurse might not be. I realize it’s day by day; shift by shift, and I’m sad again. And it scares me.
So far, the exact opposite of what the Director of Nurses promised me in the beginning has been the case. There have been no ‘team meetings’. There’s been zero collaboration with me regarding Bill’s treatment. I’ve had to fight for every concession. I’ve complied, because the only other course is for me to discharge Bill and take him home before he goes to Tertiary Care. So why aren’t I doing that?
I talk to Dr. P again at his office and tell him I want Bill released from restraints. Period! When I return to the hospital, Bill has a new room. The Care Aide stationed outside his door and her computer are gone. The waist restraint is also gone. Six days in 4-point restraints; two in a waist restraint. Now he’s free, but not completely free. This room has a dutch door. The top part opens so he can look out, but the bottom part is locked with two locks so unless someone lets him out, or takes him out, he’s locked in. He is pacing the room and as soon as he sees me he rushes to the door and starts to cry.
I go in and just stand there hugging him until he calms down. Then I take him to the toilet. When I remove his pyjamas and brief, I see the brief is both soaked with urine and smeared with feces. He’s fully co-operative while I wash him and change him.
In previous days, I’ve heard other patients continually calling for help and not being answered and surmise that because he can walk around his room on his own now, Bill is also being ignored. When he was tied down, he was forced to soak and soil himself. I’d explained clearly to the Director of Nurses and others that he’s quite capable of using a toilet, but does need help. If he’s tried to ask for help, he hasn’t been heard or answered, and he is still being forced to urinate and defecate in his pants. I’m angry, but tell myself to calm down as I make my way to the Director of Nurses’ office and ask for a few minutes of her time.
I remind her Bill does not like having to urinate and defecate in his pants and that he knows how to use a toilet, but he needs help to do it.
“Show me,” she says. I precede her to Bill’s room, and ask him if he thinks he can go to the bathroom. He says yes, and I take him to the toilet.
His bathroom is just a stall two-feet square with no door. It contains only a toilet. The sink is in the main room. There is barely room for me to stand sideways to him. I ask him to lower his pyjamas and brief and pee in the toilet while the Director looks over my shoulder. Bill does as he’s asked.
“He can!” she says.
I’m dismayed by the ingenuous surprise. “Yes. So can staff please help him go to the toilet when he asks?”
“We’ll do it every two hours,” she says.
She tells me they’ll be taking Bill for an x-ray later because of his sore back. I wasn’t aware his back was sore and tell her it would help if he had a comfortable chair to sit in in his room. “Can I bring one in? We have several recliners at home.”
“Is it certified ergonomically correct?” she says.
Of course it's not, and if the chair in his room is certified as ergonomically correct, they need to change the design of ergonomically correct. No one, me included, could sit in that chair all day long, or even for a couple of hours, and not have back pain. But I will not be allowed to bring in a chair for Bill.
I accompany him to x-ray, where he does everything he’s asked to do. After we return to his room, a young doctor who says he is a resident working with Dr. P meets me in the hallway and says, “He’s stool loading (meaning blocked up). I’d like to do a digital exam.”
“If you try that he’ll fight you tooth and nail. He will not tolerate anything being shoved up his butt, including an enema.” I repeat the story of a trip we had to take to emergency in November, when Bill was so blocked up it took anaesthetic and a surgeon to unblock him and add, “The surgeon did a complete exam and Bill doesn’t have fissures or hemorrhoids or any other problems in his backside.”
But the student doctor doesn’t want to let go. “I’M not sure of that,” he says. “I need to see for myself.”
I’m sure the reason Bill’s blocked up is because he doesn’t want to soil himself. So I ask the student to use Restoralax and stool softeners first, and warn that if someone is not right there to help Bill when they start to work it will be a disaster, because Bill needs help to use the bathroom.
“What do you mean, disaster?” he asks.
“It will be a very big mess.”
“Okay,” he says, “but if I do a digital exam I’ll sedate him. He won’t fight me.”
Which leads me to believe this doctor won't be content until he does a digital exam on Bill, and I know from experience that unless he knocks Bill right out no amount of sedation will keep him from fighting it. And that will be called violent behavior on Bill’s part.
In the evening, I return to the hospital, and am pleasantly surprised. I’m allowed to take Bill for a walk all by ourselves. Bill is so excited he practically runs around the corridor loop. The man can move when he wants to. No sore back evident.
Next day, more good news. The student used Restoralax and Bill feels much better. Dr. S comes in while I’m there, and Bill is talkative and clearer than he’s been for quite a while. He’s able to answer all of Dr. S’s questions well.
Dr. S tells me Bill’s on B12, two pain medications and an anti-depressant, and he’s been getting reasonable sleep. “If he’s stable for two weeks he might not have to go down island for Tertiary Care, but it will depend on what care homes here are willing to accept that,” Dr. S says.
“That would be great,” I reply. I hardly dare hope.
The Dance Downhill
One step forward, two back, half forward, sideways hop and spin. Figuring out what's happening with Bill is like some kind of improv dance, so no one knows how to teach it and learning the steps is … difficult. However, some steps are repetitive and should be known by everyone by now.
Due to the non-stop snow, it’s been a couple of days since I was at the hospital. Today, I get there at noon and check in with his nurse. She tells me Bill was very agitated this morning and when she took his breakfast tray in he shoved her, “Not hard,” she says, “just to get past me, and he escaped and headed straight for the elevator. I had to call Security.”
My heart sinks. Pushing her and having to call security will be recorded as ‘aggression’. Another purple blot on his record. There goes the two weeks.
She sees the look on my face and misunderstands the reason for it. “Security was good,” she says. “They were good with him.”
I try to smile, but fail.
Bill is sitting on a chair behind his bedtable, which has his lunch tray on it. He’s zoned out on Haldol. He doesn’t move or speak. He’s not one bit interested in the food. Nothing is touched. I notice his stomach looks distended and say so and ask the nurse if he’s had a BM. She goes to check.
“A small one, yesterday,” she says. “He's had laxatives twice since then.”
I get him up and take him to the bathroom, gingerly because he’s unsteady on his feet. His pants are smeared with poop. On the back of the toilet five washcloths are balled up, all covered with poop. It looks like he tried to clean himself. I get his bottoms off him, sit him on the toilet and tell him to push. He fills the bowl. I clean up the mess in the bathroom and take him to the shower. He cooperates fully all the way.
After showering, shaving and re-dressing him, we go for a walk. His feet and ankles are so swollen they are unrecognizable. Thankfully, the swelling doesn't seem to impede his ability to walk. When we get back to his room, he’s yawning and says he’s tired. I try to settle him for a nap, but he’s restless.
“What’s wrong? What do you need?” I ask.
“I need a new stomach,” he says.
He points to where mine hurts when I have acid reflux and says, “It hurts.”
I go and tell his nurse I think he might have heartburn and she immediately responds by bringing a liquid antacid, which works. In the past two weeks I’ve asked several times for a list of the drugs he’s on. I always get the same answer: “I’ll check,” then nothing. Today’s nurse actually gives me an answer. “Atavan, Risperidone, Celexa, as well as the B12, Tylenol and Advil. Laxatives on top of that. And Haldol.” Seven different drugs! Three of which I’ve already told Dr. P have a negative effect on Bill. No bloody wonder he’s swollen and it’s beginning to blow up! No wonder he tried to escape.
Due to the snow, Dr. S has only been to the hospital twice since Bill’s been here. Each time for just five minutes. And I’ve never seen Dr. P on the ward no matter what time of day I come. I don’t know which doctor I’m supposed to talk to now but I definitely need to talk to one of them.
I’m pleasantly surprised when I arrive at the hospital and Bill’s walking with a Care Aide, who is singing with him. She says she saw him being quite restless and figured he needed a walk, and she’s heard me singing with him before and knows he likes that. He’s clean, too, and I note his legs are less swollen today. Most of the staff are good with him, some exceptionally so! This Aide is one of those. After lunch he tucks in for a nap and I leave.
Was out shovelling at 3:00 a.m. Boy it's quiet at that time of the morning. Truly beautiful! That was then. At 8:30 this morning, I could no longer lift the snow high enough to top the piles alongside our driveway, which are now over five feet high. Stephanie was having difficulty, too, because the snow is wet, and very heavy. She did manage to get her car out of where she parks to go to a much-needed eye appointment and she went to the hospital. She took some light compression stockings with her for Bill's feet and legs, and took him for a walk outside to see the snow and for coffee in the cafeteria, all of which she said he loved.
She said that when she got to the hospital Bill's nurse was washing him with two security guards present, and he was being resistive at times. The nurse would ask him to do something and he would say no, or he simply wouldn't do it. She also said this nurse was very nervous. “However,” Steph said, “the nurse was being patient and she was most grateful I arrived. And half an hour after Dad was given his meds he was a lamb.”
This worries me. Bill hasn’t resisted care until now. I know that when someone with advanced dementia isn't thinking clearly, bad things can happen. Some tip over to sweet compliance, but many do not. Bill spent his working years being a boss. At home, no one told him what he could and could not do, or when he had to do things, without his agreement. And he was never locked in a room. Many of the hospital staff are still so nervous they won't do anything with him without two security guards present. Some order him to do things and want an immediate, compliant response from him. His language has been really compromised, I think because of drugs; they think because of changes in his brain due to Alzheimer’s. It’s probably both. Whatever the cause, compliance from him can be slow, which they don’t have time for. So, his care is already limited. I’m sure it’s hard for staff who have to deal with him who’ve never known his complete self, but I can imagine how tired he must be of all the restrictions being imposed on him. Not to mention what it must feel like to have someone restraining his hands while he’s changed.
Stephanie went up to the hospital again after work. She said the nurse said Bill sat bent over for most of the day in his chair, and the nurse said she was going to call the doctor because he just wasn't right. Bill’s feet and legs are extremely swollen, stomach distended, blood pressure low. He didn't eat breakfast or lunch. Steph tried to get him to eat something at suppertime, but only managed to get about six bites and his milk down him and he wasn't interested in any more. She said he was growly and didn’t want to keep his eyes open and she had lots of trouble trying to get him to respond when she wanted to change him. And his nurse said it’s a big change from what she saw yesterday. I will make every effort to get there tomorrow.
Bill is not good. He’s curled up in a fetal position, unwilling to open his eyes. His right eye is almost swollen shut, his legs and feet grotesquely swollen. His nurse says she'll leave a note about the swelling for the doc in case she misses him. She tells me she’s seeing Bill for the first time so she doesn’t know what he's been like before now. “Not like this,” I reply. No one seems to know what’s going on with him.
His breakfast is untouched. I manage to get him to sit up and eat his porridge, and to drink his milk. Then get him up, washed, shaved, changed and take him outside for a walk.
He improves while we walk but as soon as we’re back in the room he wants to curl up in bed. I stay over lunch and get him to eat half a tuna sandwich and drink some water. Then it’s back to his curled position in bed.
Throughout, he was having trouble understanding simple directions such as, “Let’s wash your hands.” That's new. This is a steep downward spiral and I’m very worried. I want to know what’s in the nurses’ notes. And I’m convinced the drugs he’s being given are causing far more problems than they’re solving.
Valentines’ Day. Bill’s been home for a few hours, enjoying music and the dog, who jumped right into his lap and camped there. I cut his hair and gave him a hot shower and he's napping. His posture has changed so much. He doesn’t stand or sit up straight at all.
Before I went and got Bill, I talked to Dr. S on the phone. Good thing I did or, I was told, I would not have been allowed to bring him off hospital property. That thought bothers me more than a little. I’m his wife and I have a legal Representation Agreement. How do they have a legal right to tell me whether or not I can take him off hospital property? Dr. S hasn't seen Bill for two weeks, and in spite of me being told the doctor would be notified about the swelling, he didn't know what Bill’s situation was re feet, legs and right eye, which is still very swollen also. Plus, he knew nothing of Bill’s stomach issues. Communication?
Dr. S said he didn't like the sound of the swelling. “It seems Bill's brain illness is being added to with physical problems.”
“I think it’s the drugs,” I said.
“I’ll assess him thoroughly when I’m there on Thursday,” Dr. S replied.
I'll meet with him then. I also explained I've asked several times without success for a comfortable chair in his room, one he can put his feet up in. Dr. S said he'd write an order, and Bill will get a chair. Yay! No guarantee Bill will use it, but it's a step.