Tuesday, Sept. 19th, 2017
Had a nice lunch with friends, then at 4:00 o’clock this afternoon got a phone call from Meghna, the new Social Worker at the Jubilee, that sent me reeling. She said Bill’s pass has been cancelled. I cannot bring him home on Friday. Why? Because he ‘is changing’ according to his nurse today—H.
When I’d come home for my meeting with the Case Manager and OT to talk about Bill coming home and support from VIHA, H hadn’t been on the ward for a couple of weeks, and Bill hadn’t had any trouble.
I asked Meghna what was meant by ‘changing’.
Meghna said, “The report is that last Thursday Bill was making a gun with his hand and pointing it at others, and he kicked patients’ doors. Dr. K wants to do ECT again and they need your permission because the order for ECT has run out.”
I could not believe what I was hearing. I said, “No. I am not giving my permission for anymore ECT. I will talk to Dr. K.”
As soon as I hung up from talking with her I called Bill’s unit. A nurse who has communicated well with me from the beginning, and who Bill has always liked, answered. “Bill was anxious Thursday evening when one of the female patients started talking about guns and soldiers coming to kill them,” she said. “He stood up and screamed, ‘Help me!’ And he did make a gun with his hand, but he pointed it at himself, not at anyone else, and he said, ‘I’m going to die here.’ I don’t know anything about him kicking patients’ doors. I’ll have H call you.”
H called. “Bill has had incidents of aggression all week,” she said.
“I called the hospital every single day I wasn’t there,” I say, “and every single day I was told by his nurses that he was calm with care and calm in general. I’ve been told he yelled on Thursday because a female patient was talking about soldiers with guns coming to kill them, and he pointed his pretend ‘gun’ at himself, no one else.”
She countered with, “He also stood in the hallway and screamed on Sunday, when no one else was around him, and he was not directable for care this morning. It took three of us to get him to the bathroom.”
I asked her if he’d done anything in the bathroom and she said, “No, but he was not directable.” Besides continually looking for reasons to call Bill violent, if he doesn’t respond to her orders immediately she doesn’t back away and try later, or try a different approach. Instead, she forces him, and of course he resists.
“I’m fighting this,” I told her, and hung up.
I immediately got on the phone to a lawyer. After I explained our situation as fully as I could to him, he agreed to represent us and asked me to come to his office the next day to sign some forms. Then H called back and said Dr. K has scheduled a telephone conference for tomorrow at 1:00 o’clock.
Called the lawyer back, then emailed the Jubilee CEO’s office and told them I’ll have a lawyer at the telephone conference Dr. K scheduled for tomorrow at 1:00 o’clock.
Five minutes later, got a phone call from the CEO’s executive assistant, asking me what the conference is about. I told her it’s about the team meeting during which I’d been told I could bring Bill home for a trial week, and the subsequent cancelling of that pass, and repeated I would have a lawyer with me for the conference.
I’ve spent the last few hours screaming inside, and sobbing. My head feels like it’s going to explode. I’m going to break.
FIFTY-SIX
Wednesday, September 20th, 1:00 p.m.
Sitting in on the telephone conference on the Jubilee’s side are: Linda Holmes, Brynn (interim Clinical Nurse Leader), Meghna Kote (new Social Worker), Dr. K, and someone named Robert—a lawyer for the hospital. On my side: my lawyer, Josh Nobleman, and Stephanie and me. We’re in Josh’s office.
I’m questioned about safety measures I have in place if Bill comes home.
Again, I tell them what I’ve arranged and done.
Robert says, “It sounds like she has everything in place.”
Linda repeats that Bill will never get a bed in a care home here.
I’m positive that comment is meant to make me change my mind about bringing him home, and I ignore it.
Josh then politely says, “Could I please get a copy of the reports that are required to be written whenever a patient is certified, or the certification is renewed?”
Dr. K says, “You’ll have to go through Freedom of Information for them.”
Josh presses. “Can you give me the date the reports were written then, so I’ll know what to ask for when I request them through Freedom of Information?”
Dr. K replies, “We rely on notes and charts.”
I tell them I want to bring Bill home on the 22nd, as agreed.
The end result of the conference is that Dr. K agrees to the week-long pass, but there are ‘rules’ I must comply with. I must:
1. call the hospital every evening at 9:00 p.m. with an update.
2. have Bill’s meds ‘monitored’.
3. agree to a consult with the Nurse Next Door representative because I am not allowed to hire anyone I want to to help me with Bill’s care. It must be through an organization that has Workmens’ Compensation. (That one came from Linda).
Dr. K says, “If the week goes well, Bill won’t be discharged from involuntary care. He will only be discharged from the Jubilee. He’ll be certified until February.” That’s Feb., 2018. So, I have to follow their rules for four more months.
After the hospital side hangs up, Josh says, “Dr. K basically admitted the required reports haven’t been written. They’re wrong, and they know it.”
I agree. And I see the fact they’re not discharging Bill from involuntary care until February as more control and bristle. Stephanie has a different take. She says, “It’s a safety net for us, Mom. It means that if something does go wrong, Dad will have a direct re-admit and that’s very rare.”
I have no appreciation for the protection factor that gives us because I don’t intend a re-admit to happen, ever. For me, their idea of protection is to take control and do whatever they want to do regardless of a patient’s or the patient’s family’s wishes.
There will be another phone conference a week from now, on Wednesday, the 27th —five days after Bill comes home—and I will once again have Josh involved. It cost me $800 for a retainer for today’s conference, but it was worth it. It made them have their own lawyer present, and he knew they were wrong, and must have told them that prior to the conference. Hindsight—I should have hired a lawyer months ago.
FIFTY-SEVEN
Friday, Sept. 22nd
Stephanie and I left early for Victoria. It took us a while to get Bill out of the hospital, but we are Home! Right before we left the ward, H rushed out of the hub and insisted she had to give him more medication. “Doctor’s orders,” she said. Whatever she gave Bill made him so dizzy so fast his knees buckled right after we were through the main hospital doors, and Stephanie and I were barely able to get him to the car. But he was good on the ride home. One incident of pill-spitting-out at noon. I didn’t have a pill crusher with me and just mixed them in with the pudding. He can spit quite far and is totally accurate at just picking out the pills. Didn’t lose a drop of pudding! I was impressed. I didn’t retrieve or replace them.
He knew when we got to our house exactly where he was, and as soon as Stephanie stopped the car in the garage he was out the door and went quickly into the house, straight to his bed in our bedroom and slept for two hours. How he had managed to stay awake for the entire ride home in spite of being dosed with what must have been a powerful drug, I couldn’t imagine. And after nine months of being essentially away from home, seven months in the Jubilee, he still knew everything about his own house!
When Lily got home from school, he was sitting in his chair in the living room. She came running upstairs to see him. He gave her a big hug and rubbed her back, and then she came to my side and cried. “My eyes are kind of watery,” she said. “I’m so happy Grampa’s home.”
I said, “Mine, too.”
Everyone’s eyes are watery today. Violet wanted to get her licks in, too. I am so grateful for Stephanie’s help. I could not have done it without her.
*****
Later, when I unpack Bill’s pills to give him his suppertime meds, my heart sinks. Over the course of his time in the Campbell River, Comox and Jubilee hospitals he had been given 19 different drugs. While I’m fully aware different drugs do different things for different people, I think the side effects of many, like Loxapine, Tegretol, and Effexor, would have sunk all the people on the Titanic. Now, I see Zoloft, Atavan, Potassium Chlorate and Lasix have been added to the mix he’d finally been reduced to just a month ago, which included: B12, Nozinan, Mirtazapine, Advil and Dilaudid.
Atavan has already proven to have a negative effect on him. And no other anti-depressants or anti-psychotics had proven to be effective in stopping his resistance to personal care by some staff, so he’d been forced to endure 31 ECT treatments.
Yet here we are: nine different meds, which have been bubble-packed and which, I was told during the telephone conference, will be monitored by someone else, presumably from VIHA. Zoloft, Atavan, Lasix and Potassium Chlorate were added just yesterday.
The only thing that keeps me breathing right now is knowing how happy he is to be home. I can see he misses the circle walk though, so I’ll have to make sure to get him out for walks.
At nine o’clock he wants to go to bed and almost as soon as his head hits the pillow, he’s sound asleep.
*****
Stephanie is working this weekend and I’m definitely going to need help. Tucked Bill in for the night at 9 p.m. tonight and I’m exhausted. It’s more than a full-time job tending to everything that needs doing when there is just me and he’s so drugged he can hardly walk from his chair in the living room to his bed, and not without help. He’s almost impossible to direct and help, let alone wake up for the times I need him to be awake for things like pills and meals. I’m practically carrying him from place to place, and getting him ready for anything and through anything, such as getting dressed, or lunch, is a long and tiring process. Drugging someone out of their mind does not make it easier for caregivers.
Also nuts is that they will not let me hire anyone I want to hire to help. I must go through an agency, which costs $35 an hour base rate (minimum two people for three hours each time), and if they do anything like give him his meds, it goes up. To have someone four days a week for three hours a day would cost me $840 a week. $3,360 a month in a month that has only four weeks. That’s more than it costs for a subsidized bed in a care facility. And it doesn’t account for time and a half or double time for stat holidays. And, it’s more than my total income.
The bright spot today was Lily. She’s pretty interested in how her Grampa is doing. Fortunately, Bill was interested in the Little Rascals movie she watched on our TV, and then he also enjoyed Moana. The kids’ musicals seem to be so much more imaginative than the adult ones and the flat, brightly colored characters are easier for him to see than the 3D characters in regular shows. It’s good we have Netflix to give him something to do while I’m scrambling to get things done. He soaks everything at night—pyjamas and bedding—twice last night, so Lily and Netflix let me get the laundry done.
*****
Today I talked to Dr. K and asked him to please let me stop the Zoloft and Atavan. After some persuasion, he said okay. I also took Bill to Dr. C this morning at 11:30. That was a feat in itself. In the waiting room Bill kept saying, “We have to get out of here,” and in the doctor’s office he was less than co-operative. He would not speak, and he wouldn’t move so Dr. C could examine him in any way. Just the thought of doctors seems to scare him silly. Dr. C was good though. He didn’t push it, just said he wants to see Bill every two weeks so Bill can get used to him.
Again it’s step by step.
FIFTY-EIGHT
Sept. 27th, Second Go-Round
The OT (N) and a gal sitting in for our Case Manager come to the house at noon. N says I’ll get zero respite hours from Home and Community Care. She says, “A few people get it once a week for a couple of hours but it’s very often cancelled. They don’t have enough workers.”
“I have to have support,” I say.
“Hire private,” she replies and I go through the litany of what private care will cost, and repeat that during our phone conference a week ago, Linda said Bill will never get a subsidized bed in a care facility here. “And that’s outrageous,” I say. “I think the system is working against us.”
N doesn’t have anything to say to that. The stand-in for M doesn’t say anything either. And I don’t feel I’ve accomplished anything when they leave.
*****
3:00 P.M., Second Telephone Conference
Attending from the hospital are: Linda, Dr. K, Brynn, Robert, and Meghna. From here: Stephanie and me from home, lawyer Josh from his office, and N and the interim Case Manager, from their office.
I point out that earlier today N said I will not get respite from Home and Community Care, and Linda and our Case Manager said prior to that that Bill will never get a subsidized bed in a facility in Campbell River. Then I talk about hiring help.
“I had lined up a qualified person for private care,” I say, “who would cost me eighteen dollars an hour, and there’s just one of her. But I’m being forced to hire someone from an agency that will cost me at least thirty-five dollars an hour, times two because I must have two at a time due to the purple dots on Bill’s file. Why am I being forced to hire from an agency, which will cost me at least seventy dollars an hour, when I can hire someone who can do the work for a lot less?”
There’s a lengthy silence before Brynn answers. “Because the person you hired is a non-professional. She works for herself. There’s no organization and no oversight behind her, and if something happened you would be liable.”
“She’s highly qualified,” I say. “She worked at Evergreen Seniors’ Home and at Yucalta Lodge, and she was highly recommended to me.”
Josh intervenes. “Isn’t that Jocelyn’s decision?” he asks.
Robert replies, “Yes, it is.”
Yay Josh!
I don’t say, but am thinking, Brynn is the one who originally told me it was Dr. K who said I couldn’t hire the person I had, that I had to go through an agency. But it was not Dr. K who answered that question. So, was it Brynn, a nurse, who told Dr. K it wasn’t acceptable for me to hire someone who wasn’t from an agency? And I finally begin to fully understand it’s always the nurses on that unit who tell the doctors what to do, not vice versa. And Brynn had never even met Bill.
Linda has to backtrack on the subsidized bed issue, when N says, “No one there determines whether or not Bill will get a subsidized bed here. There will be a RAI-HC (pronounced Rye) assessment done of Bill by our Case Manager, with the outcome hopefully that Jocelyn will receive support from Home and Community Care, and Bill will be put on the Pathway to a subsidized bed in a facility in Campbell River.”
Dr. K says, “Jocelyn must follow conditions to keep Bill at home.”
“What conditions?” Josh asks.
“You’ll have to file for Freedom of Information for them,” Dr. K answers.
N jumps in. “I’d like to know the conditions.” And Josh follows suit by asking if he can please get a copy, too. And Dr. K relents and tells us what the conditions are.
1. Give meds as prescribed;
2. don’t leave Bill unattended;
3. report to hospital ward staff every night at 9 p.m. (Ludicrous since staff at the hospital will have absolutely nothing to do with Bill’s care while he’s at home);
4. an assessment by the Seniors’ Outreach Team (SORT) has to be done (I’ve no say in what the SORT team does and am therefore not in any way responsible for that); and finally,
5. in case of emergency call 911. (Also completely ludicrous because what else would I do in a real emergency?)
“What happens if she doesn’t follow them?” Josh asks.
“Bill will be immediately readmitted to hospital,” Dr. K says.
Robert corrects him. “The procedure is, the doctor there (who is Dr. S) would assess Bill and go from there.”
N speaks again. “If Jocelyn agrees, I’d like to visit her once a week to check on Bill. I’m concerned for your well-being,” she directs at me.
I think, So am I but not because of Bill.
Stephanie covers our phone with her hand and nods vigorously, and I reply more enthusiastically than I feel about it, “Sure, N___, you can come once a week.”
A bunch of other stuff follows about how I’m doing, how Bill is doing, and what a great advocate I’ve been for Bill. I don’t believe any of the bit about me being a great advocate is sincere. I think what I am to them is a thorn in their side.
“Is it what you expected having Bill home?” N asks.
“I’m tired and need support,” I reply. “Keeping him here without support isn’t sustainable because no one can do twenty-four-seven with someone with advanced dementia who is also drugged out of his mind with no breaks. And I didn’t have any expectations regarding how he would be, because he’s very different now than when he was hospitalized nine months ago. So, I’ll take it day by day and change my coping strategies as they need changing. What I know for sure is that Bill is far more comfortable and at peace here than he ever was in any of the hospitals he was in.”
“Okay,” Dr. K says, “It’s up to Doctor S now.”
With that, the Jubilee group, and N and M’s stand-in, leave the conversation.
Stephanie is grinning. “You passed, Mom! They’ve signed him out of the hospital. And it’s good N will come. The more she and M see Dad at home and him with you, the more they’ll have to admit you’re worthy of being given the support you both need.”
I hope she’s right. I thank Josh and he hangs up. And I think with a sigh, support should be a given, not a battle.
This doesn’t feel like a win to me, but step one is complete (I think). And while I understand it’s the nurses who spend the most time with the patients, not the doctors, I’m wondering why the doctors supposed to be in charge don’t seem to know anything about anything when it comes to the treatments they prescribe for those patients or how the system actually works. And what on earth is a doctor’s job if not to spend enough time with a patient and learning about them to assess them properly when they have to make crucial decisions about their lives?
Later, I fire off an email to our MLA, telling her what I’ve been told re home support and a subsidized bed in a facility here, and asking if she can help. Right after doing that, I get a call from Dr. K. The short conversation that follows blows my mind once again.
He says, “I have always supported you, Jocelyn. I’ve been getting conflicting reports from the nurses, but when they wanted Bill’s pass cancelled I asked what could we do to make sure it happens. Linda told me we would have to put several restrictions in place, and make sure he is certified when he leaves, so that’s what I did.”
“I fully understand conflicting reports,” I reply, thinking about all the misinformation I’d been given by S and H, among others. “I’ve gotten several during Bill’s tenure there, and there were certainly erroneous reports written when he was first in hospital here that followed him there. I do thank you for your support.”
“Good luck,” he says, and that ends the conversation.
I have some sympathy for his predicament re reports, but find it incomprehensible that Linda, the Clinical Co-ordinator—likely acting on H’s advice—would hold sway over whether Bill was discharged from hospital, or decertified, or not! In the entire time Bill was there, Linda had not been in direct contact with him once. And though she’s spoken to me a few times, she doesn’t know me or our home situation at all.
And I’m left to ask, how was any of this possible when the psychiatrist in charge of a patient’s case is supposed to assess him and both Dr. A and Dr. K said out loud Bill should never have been certified, and both knew he was never aggressive about anything other than personal care from staff, or when he was fighting ECT?
*****
This morning, Bill had diarrhea again and I had to insist he sit on the toilet and then get into the shower so I could clean him up. It was a bit of a fight, but once in the shower he enjoyed it. It reminded me that anyone who thinks drugging him will make him compliant if he’s pushed has no idea of his strength. I’m not talking just physical strength. If he’s pushed, he will push back.
Someone once told me being made to stretch one’s resiliency increases their resiliency, and I guess that’s true, though at times I’ve thought it just takes being stretched a little too far to break someone entirely.
FIFTY-NINE
Humor
It’s tough watching Bill pace and pace and pace, but of course that’s what he did at the hospital, only there he did it in a circle. He’s doing well though. No trouble, which is not to say he never says no to my ministrations.
Last night, a bit of humor. The other night he enjoyed watching the flames in the gas fireplace Stephanie’s had installed downstairs, so until I get our gas fireplace serviced and functioning, I thought I’d just light a candle. I lit a pillar candle and was carrying it to a table in the family room area and he came up behind me, leaned over, and blew it out. He burst out laughing, thinking it was quite funny, which it was. It’s the first bit of teasing and humor he’s shown since he came home.
We’ll go out later when I have to pick up his meds. He’s interested in seeing everything around him when we’re in the car. He loves being outside, and I’m thinking I’ll have to find something to replace our outside walks when the weather gets really wet. Or maybe he’ll enjoy walking in stormy weather the way I used to love it when I walked with a group of friends three times a week on Quadra.
I’ve hired Nurse Next Door. A person from the agency came and interviewed me and said they’ll send just one person at a time but I had to agree to a minimum of three hours a time, twice a week. I’ll also see if the gal I had originally lined up is still willing to come for a meet and greet with the possibility of hiring her for one shift of four hours a week.
N and M came yesterday and M checked all the meds to make sure I was giving Bill everything as prescribed. They didn’t say anything about the RAI that’s supposed to happen.
*****
When I took Bill out he was alert, interested and calm. The absence of Zoloft and Atavan he was sent home with has made a big difference. The pharmacy is located in our doctor’s clinic and I thought that taking him to the clinic for a visit when he wasn’t going to be poked or examined would help him feel more at ease when we do have to go for a doctor’s appointment. He didn’t object to going in and unlike his first time there he wasn’t bothered to be there, so that’s good.
Then I took him for a long, winding car ride because it was raining out, and he loved it.
Tonight, he sat beside me for over an hour to watch some TV—longest he’s sat down and not moved since he’s come home. In the Jubilee they had some DVDs of the comedy show Reba, and discovered Bill loved watching them. He still likes comedy, and gets it. Movies with Eddie Murphy and Bill Murray are his favorites.
Before I tucked him into bed, I clipped his toenails, for which he was totally co-operative.
Today was a very good day.
*****
Bill’s been home for a month. This week he suffered through four days of being constipated followed by two days of horrific diarrhea. On Tuesday I called Dr. C and told him about the constipation (in spite of Bill getting Lax-a-day). I also asked to stop the Lax-a-day—because Bill has been made to take it every day for months and I think his bowel peristalsis has been compromised by that—and the Lasix. I’ve read up on all the drugs Bill’s been prescribed, Lasix included.
*****
Furosemide (Lasix) is used to reduce extra fluid in the body (edema) caused by conditions such as heart failure, liver disease, and kidney disease. This can lessen symptoms such as shortness of breath and swelling in arms, legs, and abdomen. This drug is also used to treat high blood pressure.
Common Side effects: peeing more than normal, most people need to pee a couple of times within a few hours of taking furosemide – you may also lose a bit of weight as your body loses water.
- feeling thirsty with a dry mouth.
- headaches.
- feeling confused or dizzy.
- muscle cramps, or weak muscles.
Serious side effects:
- unexplained bruising or bleeding, fever, sore throat and mouth ulcers – these could be signs of a blood disorder
- severe tummy pain which could reach through to your back – this could be a sign of an inflamed pancreas (pancreatitis)
- severe pain in your side or blood in your urine – these could be signs of inflamed kidneys
- ringing in your ears (tinnitus) or loss of hearing
Bill doesn’t have high blood pressure, heart failure, liver disease or kidney disease. So why is he on Lasix?
*****
Dr. C said, “No, stop the Hydromorphone,” and prescribed Lactulose. I had already stopped the Hydromorphone two days before that. Anyway, I got the Lactulose. Then followed the two days of poor Bill suffering through horrific diarrhea. He kept saying, “I feel sick,” which of course he did.
I called the clinic again yesterday, but Dr. C is on holidays for two weeks, so I called the Jubilee and asked for Dr. K to call me. Spoke with him this morning. He agreed it was reasonable to stop the Lasix and the Potassium Chlorate. He said the reason the Lasix was prescribed was because of Bill’s very swollen feet and ankles, and I told him they haven’t been swollen for over a month. And the Potassium Chlorate was because Lasix sucks the Potassium from a person’s system.
That thinking—conquering unwanted side effects of one drug by adding another to a regime—reminded me of a time I was in hospital due to severe swelling of my legs when I’d been put on a drug for rheumatoid arthritis and the doctor said he could give me another drug to counteract the swelling caused by the first drug. I’d replied with an emphatic, “No, I don’t want to take a drug to counter a drug. What I need is a drug that deals with the problem but doesn’t cause the swelling in the first place.” It seemed to me a simple concept.
I also asked Dr. K, again, to please discharge Bill from involuntary care. He asked why and I told him I was told this morning by our MLA’s assistant, who had checked with VIHA, that as long as Bill is certified the process to get him a subsidized bed here cannot be started. Dr. K said it’s up to Dr. S, but he’ll support whatever Dr. S decides. I haven’t heard from Dr. S since Bill’s been home.
*****
Three VIHA people were here this afternoon. Our Case Manager, M, N, and a Case Manager in training. M said she didn’t know about being certified blocking access to a bed. She said every time she turns around there are new policies. But when she saw how peaceful and content Bill was she agreed to start the process to get him a subsidized bed in a care facility here, and said she would check into the certification thing. N said she would email Dr. S to ask about having Bill discharged from involuntary care. Maybe we’re getting there.
The caregiver from Nurse Next Door has been here twice. Yesterday, I went out and had a good time. When I got home, she said Bill trusted her—that he’d stroked her arm—but he would not let her change him. She did get him to let her check his brief and said he wasn’t soiled, but he was wet. I asked her if she wanted to help me change him then and she agreed.
Bill was lying down, but got up immediately when I asked him if he wanted to be changed, and the caregiver and I worked together (mostly her doing the work) and had no trouble. I figure if the caregivers who come do it a few times with me, Bill will associate them with it and there won’t be a problem with them doing it when I’m not here. What can one do but hope.