De-institutionalizing Bill
We all have habits, some good, some not. Me changing any of the habits I have that I want to change seems like an endless task, but in Bill’s case a few things he had to do in hospital, had learned to do, or had forgotten how to do, changed in just a few weeks.
Before I brought him home several nurses told me he was incontinent with urine day and night, and when he first got home he was. He didn’t seem to remember how to use a toilet, but after a few days of step-by-step help he was doing it fine again and began to tell me when he had to go during the day. Nighttime is different. He was incontinent at night before he went into hospital, and remains so.
I was also told by hospital staff they didn’t do oral care because it was too hard. Now he brushes his teeth every night. I put the toothpaste on the toothbrush, turn on the water and hand the toothbrush to him. He brushes, rinses, rinses the toothbrush, puts it away, rinses his hands, turns off the water and dries his hands and face. Who knew there were so many steps to brushing one’s teeth. Not hard, but it does take time. His gums stopped bleeding after brushing the third night.
Then there was poking. In the Jubilee I saw him poked by other patients many times and he didn’t react to any of it, but one afternoon when I lay down for a rest and he was up he came and poked my legs, quite hard. He had poked me in the back a few times prior to this and I surmised that though I’d never seen him poke anyone before he may have done so. I told him not to poke me and he turned away. A few minutes later he came back, intent on poking and sitting on me. I had also seen him sat on by other patients in the Jubilee, and he hadn’t reacted to that either. But I reacted. I hollered at him: “Don’t you dare poke me or sit on me!” and he turned away and left the room. He hasn’t tried poking me or sitting on me since.
Mornings were especially hard for him and for me. He was growly and it took a lot of different types of persuasion to get him to let me help him with his morning care. One morning last week he shoved me quite hard into the sink in the bathroom—something he’d done to some hospital staff. I held up my hands, told him to back away and that I was out of there until he decided he wanted my help. He took only a few minutes to come and ask me to please help.
Now that some of the meds are discontinued and he’s adjusted somewhat to the remaining ones, we’ve been able to have conversations again. Not long or complicated ones, but talking back and forth all the same. So, that evening I decided to have a chat with him about what had happened that morning. I told him I was sorry he was wet and cold in the morning. That I knew it was uncomfortable and was doing my best to help him be more comfortable as quickly as I could. But his behavior toward me when he shoved me or refused to co-operate was unacceptable. I didn’t know if he would remember it, but he did. And apologized.
Before I touched him the next morning, I told him I wasn’t going to touch him until he promised there wouldn’t be any shoving, and he must co-operate with me helping him get changed. He said okay, and we proceeded without any trouble. We haven’t had any trouble since.
I don’t know if it will last, but it has shown me he still does understand what he’s doing and he can control his behavior even when he feels crummy, which he certainly does when he first gets up. Now, he sleeps anywhere from seven to ten hours at night, due to the combination of Nozinan and Mirtazapine Dr. C said, and I don’t wake him to change things when he’s wet because once wakened, he’s up. No amount of padding I put on him prevents him waking up totally soaked. I can’t reduce his liquid intake either because he needs to keep hydrated so he doesn’t get constipated. Guess some things just have to be tolerated.
Something else he’s lost is his fitness. Ten months ago he could walk 8 kilometers in about an hour and 15 minutes. Now six blocks at a painfully slow pace is almost too much for him. But at least he can still walk. And there are other bright spots.
I took him out for a drive and a walk the other day and stopped by Amandah’s. I don’t know if he recognized her and her husband, but if he didn’t he faked it well. He was happy to see them. We sat and chatted and though he didn’t say much, he responded to what was said to him.
If I ever have any doubt he’s glad to be home, it’s soon dispelled. He often stops me for a hug and while we’re hugging he often rubs my back. Sometimes he just pats my head if I’m sitting when he walks by, as he did Lily’s a few days ago. These days I find nothing makes my own tiredness and aggravation disappear faster than a simple hug.
Until Bill does get to a place where he truly doesn’t understand what I’m saying, I’ll continue to treat him like a person who has led a full life, who has developed and continues to hold his own opinions about a whole lot of things, and who knows what he wants and doesn’t want done to him. And I’ll continue to hold him responsible for his actions toward others.
All that said, it can take a great deal of time to deal with someone with dementia. This morning it took me almost two hours to get him washed, dressed and fed because he didn’t want to be washed or dressed until he was good and ready and I had to make multiple attempts. No staff in any care facility have the time to do that sort of thing.
I don’t always have the time to go back to the same thing multiple times either, but I figure anyone who’s dying from any disease deserves as much help, peace and comfort as we can muster for them. However, I’m not on a clock.
SIXTY-ONE
Passing the Buck
The latest in my quest for Bill to be discharged from involuntary care is that I’ve spoken to Dr. K twice and asked him to discharge Bill and each time he’s told me it’s up to Dr. S. So, twice I’ve asked N, who is in charge of who talks to Dr. S, to ask him to please discharge Bill from involuntary care.
Yesterday, she told me there was confusion around it; that Dr. S says it’s up to Dr. K, and it might be that Director has to talk to Director. I expect she’s talking about the respective hospitals, though what the Directors have to do with it is a mystery to me. These two psychiatrists have not talked with one another at all, in spite of my now half dozen requests that they do so. What this looks like to me is evasion.
I have filed under Freedom of Information for the reports that were supposed to have been filed when Bill was first certified and then re-certified twice, and was informed by the government office that I had to file directly with the doctors and institutions responsible. Accordingly, I’ve sent the requests to Dr. P, Dr. A and Dr. K, as well as the Campbell River Hospital and the Jubilee. According to what I’ve read in the Freedom of Information act, they have 45 days to respond.
Aside from all that, Bill is calm and content and now regularly greets me in the mornings with hugs. He’s happy to sit with me anytime, still enjoys watching animated kids’ movies and shows—especially if they’re musicals—and likes listening to music, as he always has. He loves seeing Lily and Stephanie and when invited spends some time downstairs with them. He’s also getting along fine with the two caregivers I’ve hired, who seem happy with him, too.
It’s not all upbeat all the time though. One of the harder things for me—and for him—to contend with is his bowels. He vacillates between constipation and diarrhea and gets very sore. He uses the toilet with help, but doesn’t always make it when he has diarrhea, and sometimes yelps with pain and doesn’t want to sit on the toilet when he’s constipated. I know that as Alzheimer’s progresses patients’ systems change when parts of their brains die. I don’t know if the bowels are connected to that, or if it’s because he’s been on so many different meds and laxatives for so many months, and is still on meds that can cause those issues. I’m hoping it will improve with time but it might not.
He has far less language than he had when he was first hospitalized and after the ECT treatments on his bi-frontal lobes, which isn’t going to change. And he still has some depth perception problems, though those have improved quite a lot.
SIXTY-TWO
At Last
Dr. S and the OT, N, arrive at the house at noon. It’s the first time Dr. S has laid eyes on Bill for six and a half months. He’s surprised Bill’s done so well at home and tells me that because of how things have been since I brought him home from Victoria I am vindicated.
I say, “I view dementia patients’ behavior differently from how the medical profession views it. I don’t see the actions a person who can’t express themselves verbally may take when they’re forced or restrained while someone else does what they want with them as violent or aggressive. I see it as self defense and fear.”
I continue, “Bill’s still very aware of what’s going on around him, and when he feels bullied or is forced or physically restrained, he will fight back any way he can. We’ve had a couple of set-tos, but before it escalates, when I can see he’s getting agitated I just put my arms around him and say, ‘Shhh’, or make soothing sounds, or put my hand on his chest and ask him to take slow, deep breaths. No caregiver in any institution can do that, but that closeness and warmth are what sick and vulnerable people need.”
Bill, who has been walking up and down the hall by the bedrooms comes into the room. He walks behind the love seat N and Dr. S are sitting on and N swivels her head back and forth, as if she’s worried he’ll do something to her from behind her. He goes back to the hall and a minute later N says, “What’s he doing?”
Unconcerned about whatever he’s doing, I shrug and say, “He doesn’t like hearing people talking about him. If he needs help he’ll come and tell me.”
She gets up. “I’m going to see what he’s doing.” She returns and says, “Jocelyn, Bill says he needs to go to the bathroom.”
I leave and tend to Bill. When I return N says, “False alarm?”
“No,” I reply. He went. I explain that anytime someone asks him if he needs to go to the bathroom, he almost instantly does need to go, and when he’s taken to the bathroom he’ll urinate, even if it’s just a little amount.
I can see both she and Dr. S are surprised. “You are the gold standard of caring for someone with dementia,” Dr. S says.
I reply, “I only have Bill and I’m always available to help him when he needs help. I want you to please discharge him from involuntary care.”
“I’ll gladly do that,” he says and inwardly I feel a rush of relief that relaxes stomach, chest and neck muscles I hadn’t even known were as tight as over-stretched elastic bands.
Then we talk about the system and I ask him if he’s ever visited the Tertiary Care unit in the Jubilee. I already know N hasn’t. He says, “No,” and I say, “It’s not what doctors here seem to think it is. I would challenge any doctor who refers someone there to go there and spend at least one week, and at least four hours a day every day during that week on that ward; then tell me it’s a good place for people with advanced dementia.”
Dr. S sits back, and I describe it in detail. “Providing patients with a circular walk and bright rooms on a locked ward and calling it good just isn’t good enough. Patients can’t escape from other patients, who may or may not play well with others; they often can’t get into their rooms when they want to escape from the chaos that sometimes occurs, or just to nap; nurses routinely ignore pleas for help though they might be clearly visible to the patients asking for it in the glassed-in hub that is the centre of that unit; patients who can’t go to the bathroom themselves are changed on a schedule—as time and the availability of Security allows in most cases. Many times I saw patients untended for up to six hours, except for being given meds and meals.
“There is no oral care done at all and I don’t know about nail care. Bill’s nail care was never done except by me. And if a patient can’t feed themselves well and quickly, they can forget ever having a hot or even a warm meal again. I often saw the person feeding someone who couldn’t feed themselves leave that patient partway through the meal and not return to finish feeding them for over half an hour. All the while, the patient who has been abandoned is expected to sit staring at the food and wait.
“I also know from first-hand experience that those who can’t leave their rooms for whatever reason get their meals served to them up to an hour late, and once again I witnessed caregivers leave those patients mid-meal and not return for lengthy periods of time.”
I barely pause for breath before adding, “I don’t know about you, but I’m not a fan of cold porridge, eggs, tea or coffee, soup, fish or cooked vegetables. Or of any other meal that should be served hot.”
I add, “Of the three hospitals Bill was in, your hospital, Comox, was the best. But then, he had a Care Aide assigned to him and one or two other patients all the time.”
“So, one on one,” N says, and I reply, “Yes, sort of. The Aide was always there.”
We go on to talk about the ECT treatments and I relay all of what happened with them, including the spectacular results of the first round of bi-frontal treatments and the horrible harm the bi-temporal lobe treatments did. And the fact Bill was given 31 treatments when only 15 were authorized by me.
Dr. S says he’ll get the reports from the Jubilee. “The disconnect between your consent and the treatments given might be because of the rotation of doctors doing the ECT treatments there,” he says.
“That’s possible,” I say, “but it isn’t a good enough reason for treatments that clearly caused harm to be repeated. Even less for treatments that were not agreed to being given. I now know bi-temporal lobe treatments following bi-frontal lobe treatments are standard procedure for someone with depression. That that regime is thought to make the treatments relieve a patient’s depression for a longer period before a patient becomes depressed again. But that’s for patients who are depressed; not patients whose brains are also being assaulted by dementia. Bill was not a standard case. No one knew what damage his brain had already sustained due to Alzheimer’s prior to the ECT. They don’t do MRIs on dementia patients. I think a lot of the problem lay with doctors who didn’t know Bill at all being unwilling to listen to ‘just a wife’ when I stated my observations and forbade bi-temporal lobe treatments.” My anger when I say this is clearly audible.
I take a long breath and Dr. S takes a long minute. “I assure you that if it’s ever thought Bill might benefit from more ECT, I’ll be the one administering it in Comox, and I will not go against your wishes.”
“Good,” I say, but I’m thinking it’s extremely unlikely I will ever submit Bill to that again.
N says, “I and a different Case Manager will be back next week to do the long-awaited RAI assessment for Bill and get the process for a subsidized bed in a facility here going, plus get the possibility of Bill just going to a facility for respite for you happening.”
I want to believe her, but how many times have promises for connections been made without anything happening?
They take their leave and I go to our bedroom, which Bill has retreated to, and collapse with exhaustion beside him on his bed. I’ve achieved what I wanted—decertification—but our journey isn’t nearly over yet and I don’t know what to expect now because almost nothing that was promised in the past was done, and those things that were done only happened when I’d pushed, and pushed, and pushed.
SIXTY-THREE
Doctor Not On Call
Bill has been home for two months, and for the most part, he’s been calm and co-operative. But today he woke up extremely agitated. I simply cannot regulate his bowels. He’d been constipated for six days, and I’d given him Lactulose for four days, plus Senekot for two days, and two stool softeners, and still nothing. Two days ago, it finally broke and he was distressed with real diarrhea. Yesterday morning, more diarrhea and more distress on his part as he was forced by the medicine to empty out and his bum was burning. So, this morning when I took him into the bathroom to wash and change him, he suddenly said, “Please don’t. Please, please, please.”
I said, “Okay, please don’t what?” and he pushed me, then hit me. Not hard, but the intent was there. I pushed him away and told him I couldn’t help him while he was behaving like that and left him.
I returned three times and he still wanted to fight. Fourth time I asked him who he thought was going to help him if he hurt me. I got some clean pull-up briefs, got him to sit on a chair and put them on him and put him back to bed. Then thought his electrolytes are probably out of whack due to the diarrhea and gave him 6 ml. of Potassium Chlorate in water via syringe. He took it willingly enough, but I’m not a doctor and am flying by the seat of my pants here because our GP is away and I’ve called Dr. S twice but he hasn’t called me. I’m wondering if when Bill was decertified we were stricken off his list entirely. Not the impression I got when he was here but…
I called the Nurse Next Door caregiver I’d hired and told her he’s very agitated and asked her not to come today. She said she could come and keep me company, but I declined. She’ll call at 1:00 o’clock and I’ll see then if Bill feels safe enough to have someone else in the house with him.
Today Stephanie and Lily leave for Mexico for a week. It’s a spur of the moment trip and I’m feeling very alone. I am worried.
*****
This afternoon the caregiver came and I went to shop for an hour, then tried to nap without success. When I came out of the spare room, the caregiver said Bill voided in the toilet for her twice, but shoved her when she suggested he sit on the toilet. She pulled up his pants and left off trying to help him then. Told him that shoving her was not okay.
Tonight Bill put himself to bed fully clothed at 7 p.m. I will have to get him up and changed, and his bedtime meds into him and am thinking it could be a tough night. I feel awful that he’s feeling so awful, and that feeling awful is causing him to resort to shoving.
SIXTY-FOUR
Breaking
Bill wakes early, and when I wake I see he’s taken off his wet things and put on and correctly buttoned up a long-sleeved flannel shirt. He’s also put on one sock and one slipper. I help him wash and finish dressing and feed him breakfast. The whole time he’s calm and co-operative.
Shortly after breakfast, he has a BM in his brief and comes looking for help. I wash and change him again and the Preparation H wipes I bought soothe his bum. He climbs into bed for two hours. He wakes up hungry for lunch. Seems he’s feeling better. I just wish I could permanently sort out his bowel troubles so he doesn’t have to go through the kind of stuff he’s had to go through with them.
At 11:30 the replacement Case Manager comes for the RAI assessment. “It’s really long overdue,” she says as she settles into a chair at the dining-room table. I agree.
I’m sad I have to tell her about Bill’s shoving yesterday and the bowel problems that preceded it. “I think his electrolytes were out of whack due to the diarrhea,” I say. “I gave him six milliliters of Potassium Chlorate and he seems to be back in balance today.”
She doesn’t comment on that and opens the form she has and starts marking answers to the questions. When it’s finished she asks for the names and numbers of the two hired caregivers. “I’ll speak to them,” she says. “I’m hopeful for you.”
I appreciate the sentiment, but know the Aide who came yesterday, against my better instincts, will also have to report she was shoved, which in the healthcare world makes two more purple dots on Bill’s record.
What a vicious cycle.
*****
Trouble for the past week. Last Tuesday Bill began to tilt far to the left when he was walking, and he became very quarrelsome, pushing at me and at both the caregivers. I phoned our doctor’s office and got an appointment on Friday. The tilt got worse on Wednesday and Thursday. On Friday morning he pushed me onto his bed twice and doubled his fists, clearly extremely distressed. I told him to stop, and he did. Took him to our GP in the afternoon.
When we went into the office Bill’s walk was more of a shuffle, his face was blank—which I hadn’t seen before—and he didn’t say a word. He sat where I asked him to and didn’t move. Dr. C sort of pushed on his back and tried to listen to his chest, but it was a very cursory examination. He said he couldn’t find anything and upped Bill’s dosage of Nozinan to almost double.
After returning home, Bill’s tilt changed from the left to the right. Saturday it increased again. He said his head hurt and I gave him Advil and Acetaminophen. I was convinced he’d had some kind of cerebral event other than Alzheimer’s.
Today, December 11th, is his birthday and I wanted to give him something he would enjoy. He’s always liked it when I’ve messed with his hair, and he used to love going to a hairdresser even more. So I asked one of the caregivers, who was a hairdresser before she started caregiving, to cut his hair, which is sorely in need of a cut. But when I asked him to get up to move to a chair where she could cut it, he yelled, “Not a chance!” a couple of times.
“That’s clear,” the caregiver said.
I agreed and sent her home and was sad that something that used to give him a lot of pleasure now seemed like an ordeal for him. He let me cut his hair, but he had trouble sitting up. I had to keep telling him to look out the window at the mountain, which straightened him for a bit.
Went out to a writers’ meeting tonight and Stephanie stayed with Bill. When I got home at 10:30, she said she hadn’t been able to get his pants off him so she could put him to bed, so he was still up.
I’m very glad she’s downstairs. Knowing she’s there and will do her best to help whatever way she can if I ask for help gives me comfort. Chris on the other hand has said the updates I give him via email and phone are hard because he’s far away and can’t help. At one point he sounded so upset I asked him if he wanted me to stop giving him updates, but he was adamant he wanted to hear what was happening.
It’s a conundrum. I don’t know what to do about Bill’s current troubles, and no one else can solve them either. I don’t know what will happen next. I do know Alzheimer’s is a terminal disease.
*****
Worse and worse. Sometime after 4:00 a.m. this morning when I’d last checked on him, Bill had a massive BM on the bedroom floor. I knew an explosion had to come sometime because he’s been constipated for quite a few days. Did not expect it to happen this way though. He has never pooped on the floor before.
I sleep in the spare room now and heard him up and got up to find out what was going on. He was extremely distressed and wouldn’t co-operate with me at all. Instead, he kept moving around the room, tramping poop everywhere, and to his bed, which I did not want him to get back into in the state he was in. I went downstairs to get Stephanie, who helped me get him washed and into clean things and back into bed.
Then I sent her back to bed and set about cleaning up the mess on the floor. When I finished two hours later, the room still stank abominably, in spite of the fact I’d washed the floor three times.
I checked Bill again and discovered he was in need of much more washing. Poop was still on his legs and the bottoms of his feet. He was asleep by then, so without speaking to him I got a basin of warm, soapy water and washed his feet, then started moving up his legs. That was really stupid tactical error number one! Suddenly he flew out of bed, fists flying and beet red in the face and screaming at me to get out of there. He moved incredibly fast and I couldn’t stop him.
Tactical error number two—I moved straight backward and got pinned against the closet door instead of escaping out of the room. All the while, he was swinging at me with his fists, which I was able to parry with my arms, and I screamed.
Stephanie and her boyfriend, who was staying at our house for a few days, raced up the stairs and Stephanie moved in front of her dad. He swung at her while her boyfriend was trying to contain him from the side. In a calm voice, Stephanie told her dad to stop it, and he did stop and eventually calmed down. Then together Stephanie and I got him thoroughly cleaned up, fed breakfast and dressed.
I’m wondering how on earth I could have done what I did when I absolutely know better. I started washing him when he wasn’t awake and he was therefore unaware of what I was doing, and why. When I started to move up his legs he woke. When he flew out of his bed he clearly didn’t recognize me. I think it was simply instinct for self-preservation that made him react as he did because he didn’t know what was happening to him. And I know he wasn’t in anything like control of his reaction at that moment, and seeing him in that state frightened me more than a little. A warning Dr. S had given me many months ago came to mind: There will come a time he will break and come at you and you won’t be able to stop him.
The upshot of the fisticuffs are that I have a few bruises and a sprained little finger on my right hand. And my caution around Bill is considerably increased. Stephanie and her boyfriend weren’t hurt, thank heaven.
I called both of my hired caregivers and told them what happened. One said she wouldn’t be back. The one scheduled for today still wanted to come in. I had to pick up something to get rid of the horrible smell that still permeated Bill’s room and left for an hour after telling her not to touch him, just be here, and that Stephanie and her boyfriend were right downstairs and she should yell if there was any sign of trouble. When I returned, she said she and Bill did fine, and she would come back on Thursday.
Bill continues to walk on a tilt. I’ve spoken to our doctor about it three times now (the latest was yesterday) and he has more than tripled Bill’s dose of Nozinan in response. God only knows what Bill is suffering.
Having experienced his rage when he’s out of control, I can’t put others at risk and have decided I won’t have any caregiver come in anymore. I will have to wait and see what happens re a bed in a care home—and make sure to have my escape routes here well planned at all times. So there it is. I am now on the ‘handle with extreme caution’ list when caring for my husband, and it makes me very, very sad.
SIXTY-FIVE
Rapid Change
December 21, 2017. We have Christmas early with Haley, Haley’s boyfriend, and Stephanie’s boyfriend. Lots of fun and laughs and music, and Bill is in the thick of it laughing and singing right along with the rest of us. But today is day three of constipation for him again, in spite of having been given Senekot yesterday at noon, and Lactulose today at noon.
*****
December 22. At 9:30 a.m. Haley helps me change and wash her Grampa. He’s calm and co-operates fully. After eating, he goes back to bed and sleeps for two hours. At 11:30 he gets up, wet again. There’s no one else in the house as the others have gone out to have some fun before Haley and her boyfriend have to head back to Victoria this afternoon.
When I start to take off his wet t-shirt, he pushes me backward. I land on his bed and tell him to stop, but he comes at me. “If you don’t back off, I’m going to kick you,” I say. He stops then. That means he understood what I said and he hasn’t lost complete control. What he has lost control of, is knowing how to cope with his distress in a reasonable way. Maybe because he can’t bring up words to express what’s going on.
When the others get home, I tell them what happened. They are all worried about me, and Stephanie is worried for herself, too. I’m an emotional basket case and simply do not know what to do.
Stephanie has been home for almost two months because of major surgery she had on October 30. But she goes back to work after Christmas and I’ll be here trying to deal with Bill alone most of the time, and I’m beginning to think he could truly hurt me. And I have no one to blame but myself. I can’t get hold of our GP and have a call in to Dr. S, but he hasn’t answered. Likely on holidays, but I haven’t spoken to him since Bill was decertified.
*****
December 23rd. Two days after our happy Christmas celebration, we all come down with flu. I’m vomiting and have been dragging myself around to care for Bill. Bill has been slightly flushed for a few days but is now extremely flushed. However, he’s not vomiting. Stephanie’s coughing and Lily is vomiting and coughing. It seems to have come on so fast, but I’m thinking maybe Bill has been sick for much longer, and that’s why his behavior suddenly changed so much. We likely got it from him. I don’t know where he got it from but his whole system has been so out of whack for weeks.
*****
December 24th. Today, he was very wobbly. At 7:00 p.m. tonight, he was walking around the house and he fell heavily, hitting a small table in the family room on his way down and knocking it over and landing hard on his right hip on the floor. He couldn’t get up. I told him to stay down, put a pillow under his head and called the ambulance. Stephanie, who had heard him fall, had come upstairs. She sat with us while we waited.
The ambulance attendants were really good with Bill and said they were going to transport him to hospital. I gave them the MOST (Medical Orders for Scope of Treatment) Bill signed when he was still competent to do so, and the Representation Agreement I have for him. On the MOST form, Bill chose M1, which says: Supportive care, symptom management and comfort measures only.
Stephanie went with him to hospital as I’m still vomiting and did not want to spread the flu around. She’s coughing, but figured she could cover her mouth. I went downstairs to take care of Lily.
I waited for an hour after they left, then called the ER and spoke to a nurse on the phone. She told me Bill has a temperature of 40.5°C—the highest that has ever been recorded there. His blood pressure is also extremely high.
He is much sicker than the rest of us. But he couldn’t tell me in words how much he was hurting, or where. I’m very sad he’s been returned to hospital, but also relieved because I can barely take care of myself right now.