TWENTY-SIX – Jocelyn Reekie-Author

Phase Three

Dr. F calls me to tell me Bill’s about to be moved, and despite her attempts to get the ambulance crew to allow me to ride in the ambulance to Victoria with them, I won’t be allowed to do so. “I don’t know why they’re being so weird about it,” she says. She knows I rode with him from Campbell River to Comox and the first thing the nurse who accompanied us told staff when we got to Comox was that I have a calming effect on him. I thank her for her efforts, grab my go bag and head for Victoria.

The Tertiary Care unit is on the second floor, through two sets of locked doors. I stand for a long time after pressing the buzzer to the first set, and finally get in when a staff member comes up behind me, asks me if I have someone on the ward and swipes her pass card to get me through those two sets. I stand even longer in front of a third set of doors and finally a voice comes through the intercom near the buzz-button, asks me who I’m there to see, and the doors click so I can open them.

The first thing I see is Bill, sitting slumped over on a bench seat against the wall to the left of the doors. A nurse is beside him, trying to get him to move and unable to. She introduces herself as an RN and Bill’s nurse. I tell her who I am.

“What happened?” I ask. “He looks completely drugged.”

“He became restless in the ambulance so they gave him Haldol.”

“Can you please get a wheelchair?” I ask.

She does, and with difficulty we get Bill into it, wheel him to the room she tells me is his and get him into bed. She takes her leave, and Bill immediately falls asleep. The room is big, bright and has a very big bathroom with a raised toilet, sink and open shower. It’s really quite lovely.

I put my go bag on the floor beside the chair in the room (again an uncomfortable-looking chair) and go onto the ward. The hallway goes around a large, oval, completely enclosed structure in the centre of the ward. Later, I’ll learn it’s called the ‘hub’. One end is like the bridge of a ship, with glass doors on either side, windows that curve around the front, and what looks like the nurses’ desk inside. There’s no one there. The glassed part of the structure is small, compared to the much larger back part, which has no windows except for a very small one in each of the doors that lead to the corridor on either side of it. At one end of the hall, there’s a room with big windows, a loveseat and one chair. A sunroom I surmise. Next to it is a room marked Staff. Patients’ rooms line the corridor on either side of the hub. I count five on each side. I see signs posted beside each door with a person’s name and some sort of cartoon below the name. One room has two names, the rest are single occupancy. At the end closest to the entrance doors to the ward, to the right of the doors, there’s a dining room with tables and chairs in the middle of the room, a wall of cupboards and a sink at the far end and one loveseat and one comfortable looking chair at the other end. The loveseat and chair are in front of a large TV that’s in a cupboard with glass doors. The whole effect is a bright, open ward with a circular walkway wide enough that several people could walk abreast around the hub. At the moment, there’s no one in sight.

Not knowing what else to do, I go back to the common room and sit in the chair by the TV, which is not turned on. Within five minutes a lovely young woman appears and introduces herself. She’s the Occupational Therapist. She has a beautiful smile, and I feel myself responding to her smile by smiling back. She asks me to tell her about Bill and I spill the whole story of how he had not hurt anyone, was tied down in four-point-restraints for six days, and driven to the point of resisting personal care by being neglected. “I’m so sorry that happened,” she says. “We don’t use restraints on this ward, ever.”

I tell her I’m really glad to hear that.

“I’d like to put padded pants on him, because of his frailty.”

I’m nonplussed by that. “He’s not frail,” I say. “He’s drugged out of his mind.”

She doesn’t seem to hear that and says, “We only have two pairs here and other patients need them. Would you like to look around?” she asks.

“Sure,” I reply. We walk together around the hub and she tells me the names of the various areas and that the patients’ doors aren’t locked, so they can get out of their rooms whenever they want to and walk the hallway. Now, there are two patients walking the circle, one of whom is pushing a walker and crying out continually, “I’m not well. Please help me. Someone help me. I don’t know where I am. Someone help me. I’m not well.”

When we get back to the common room, she gives me the name and contact information for a supplier for the padded pants, and leaves the ward.

I go back to Bill’s room and discover that though the patients’ doors don’t lock from the inside, they do lock from the outside. I can’t get back in. I go to the hub. Still no one at the desk. I peek through the tiny window in the door on Bill’s side of the structure, see there are staff there, and knock. The person who answers says she’ll have to get a key. It takes more than five minutes to get back into Bill’s room. As soon as she unlocks the door, the woman goes back to the hub.

How, I wonder, are patients with advanced dementia supposed to be able to do that? Supposing they have the wherewithal to know the steps they have to take to find a staff member and ask them to let them into their room—if they remember which room is theirs—I’ve seen no staff in the halls or common area since I arrived, and no one at the nurses’ desk. Which means the patient would also have to know to knock on one of the doors to the back part of the hub.

A short time after I return to Bill’s room, a small woman comes and asks me to walk with her. She tells me she is Dr. A, and is the psychiatrist who will be looking after Bill.

“I want to get him back home,” I tell her. “So can you please think about de-certifying him?”

“He choked someone and he attacked you,” she says. “He will certainly be recertified as a danger to others.”

I have to force myself to breathe and calm down before I repeat what I’ve said so many times. “He did not choke the worker at Adult Care. He threatened her, but did not touch her. And he did not attack me. He simply pushed me out of his personal space when I made the mistake of forcing care on him too fast.”

“He pushed you down,” she says and I have a sinking feeling Bill and I are lost. False reports and exaggerated reports have followed him here.

When she leaves, a younger woman arrives and tells me she’s Dr. J, a resident who will also be helping with Bill’s care. She asks me to tell her about Bill, and I do, making sure to tell her the reports about Bill hurting anyone are wrong. She’s pleasant and I like her. We go to Bill’s room and she sees he’s still sleeping and leaves.

I sit on the bed beside him and want to weep. When he wakes, I ask him if he wants to go for a walk and we do. He tires quickly, and sits on the floor a couple of times. He doesn’t fall, he just lowers himself carefully, and after a couple of minutes when I ask him if he can get up, he helps me help him up. I want to take him back to bed, but he wants to keep walking, so we do.

At suppertime, we sit at a table near the bench I first saw him on, outside the common dining room. Supper is pot roast, mashed potatoes, and cooked carrots and beans. A Care Aide sits in a chair on Bill’s other side and starts to feed him, which surprises me. She gives him a mouthful of mashed potato, which he eats, then motions to me. I pick up the second plastic fork and give him a bite of pot roast. He immediately gets up from his chair. I get up, take his hand and walk him around the circle. “Are you hungry?” I ask.

“Yes,” he says.

“Okay, here’s dinner.”

He sits back down and the Care Aide gives him more potato, which he eats with no trouble. I follow it with another bite of meat. Again he gets up, again we walk, and again he sits back down at the table. The Care Aide gives him a forkful of vegetables, which he eats. Another bite of meat. This time he picks up the plastic plate, prepared to chuck it. I grab his wrist and prevent it, and he puts the plate back down.

“He doesn’t get up with the vegetables. Maybe he doesn’t like the meat?” the Care Aide says.

I hold up a forkful of it. “Do you like this, Bill?” I ask. “Do you want some more of this?” He doesn’t respond. “Are you hungry?” I ask.

“Yes,” he says, and eats all of the potato and other vegetables.

Slow learner me. Always something new to learn. Ask the right question is a pretty big one. One thing I should have asked and didn’t was, why are we feeding him? He’s perfectly capable of feeding himself. And maybe he didn’t like the meat, or couldn’t chew it because he was so drugged.

When I leave after he’s in bed, I find a hotel.

nnnn

TWENTY-SEVEN

What Happens To Hope

Dr. A told me she’s changed Bill’s meds: taken him off Loxapine and put him on Tegretol, a neuro-pathetic pain med used for epilepsy and other things. The side effects for Loxapine are legion. Common ones include: feeling like you might pass out; tremor; trouble swallowing; easy bruising; unusual weakness; severe constipation or little or no urinating; dizziness or drowsiness; blurred vision; feeling restless or agitated; nausea, vomiting. But the most troubling thing I’ve now read about it is: Loxapine is not for use in psychotic conditions related to dementia. Loxapine may cause heart failure, sudden death, or pneumonia in older adults with dementia-related conditions. I’m wondering how Dr. S could have put Bill on it?

They did an ECG today to check his heart rate, which was low, and Dr. A said it will take several weeks for the Loxapine to leave his system. No one can know how many of the side effects Bill was experiencing from it, but one thing is for sure, it’s been making him so unsteady he keeps sitting down–due to being dizzy and also having a low heart rate when he stands up. Also unbelievable for me is that some of the Jubilee staff (including the Occupational Therapist today) said they think the sitting is resistance on his part. God save us! How does everyone involved in his care not know the side effects of the drugs they’re using? Why do they all assume he is resisting or being aggressive? But I know why. Because of the false reports.

He went down so often today they’ve now put a helmet on him as well as the padded pants when he’s walking. He still lowers himself quite intentionally to the floor, which shows me that even though the drugs are powerful enough to knock him off his feet, they still aren’t powerful enough to squash his good sense. This is not a man who isn’t in control of himself.

I told Dr. A I don’t know how anyone can know what drug is doing what to Bill when he’s on more than one. And maybe if he was on just one, they’d know what effect it was having. She said he needs the other drugs she’s giving him as well. He’s on five. She also told me they don’t assume it’s a progression of the disease when a patient exhibits new behaviors, which is something I’m in complete agreement with, but I haven’t seen any evidence of them not believing exactly that.

Both psychiatrists have asked me more than once when the last time Bill was aggressive toward me was. The last time Dr. A asked me, I repeated emphatically the report she had from Campbell River that said he hit, punched and kicked me is wrong. It did not happen. She seemed to listen, but I’m not sure whether she now believes that I minimize Bill’s aggression or not.

With continually being questioned by the Social Worker, the OT, and both psychiatrists, I’ve told them all everything that happened to Bill in the Campbell River hospital, and I’m worried that because I’ve been vocal about the neglect/abuse he suffered there, and about how decisions regarding him were stripped from me, I am tagged as someone who cannot be trusted. And I’m angry that they get to grill me but I don’t get to read what has been reported about me, or about Bill, in nurses’ or doctors’ notes. I can’t take much more of seeing Bill treated as something he’s not. What that’s meant for him is the legion of drugs he’s had to endure with all of their unpleasant side effects and being forced to do whatever anyone else wants him to do when they want him to do it. He has lost all control of his life, and everyone in the system seems to view him as a real threat.

I can’t quit thinking about what he still will have to endure before anyone frees him. I can’t think of anymore clear ways to tell them he is not who they think he is than I already have. I’m losing hope.

nnnn

TWENTY-EIGHT

Plan B

I’m home, but won’t be here for long. Dr. M—a third psychiatrist—entered the picture on Friday when he was filling in for Dr. A, and when I spoke with him I asked him to tell me exactly what Bill was still doing that was considered aggressive or a problem.

He went and got Bill’s chart and skimmed through it. The only issue he could find documented was Bill’s resistance to staff trying to change him by shoving them with his forearm or by sitting repeatedly while they’re trying to do it, “So sometimes it takes three of them to do it,” M said. The bit about him sitting during care let me know they still see his sitting as resistance. I told Dr. M I can toilet and change him myself with little trouble and asked him to please think about decertifying Bill.

At that point M told me that if Bill is discharged from the Jubilee, he will have to go to the Tertiary Care unit in Cowichan or Parksville and will be there indefinitely before it can even be considered to bring him back to a care home in Campbell River. No one has ever told me that and I was hit so hard with it I couldn’t reply. At that point, Dr. M left, and it took me several loops around the hub before I could make myself calm down enough to go back to Bill’s room and sit beside him while he slept. I still can’t take that information in.

If Bill is resisting care from some by shoving, I can’t say I blame him. Some staff who approach him kindly enough don’t tell him what they’re going to do, or ask his permission for anything, because once again they are trying to do it as fast as they can. Not necessarily because they’re afraid, though some are, but because of the time it takes otherwise.

He does spit out pills, and I really don’t blame him for that either when he knows very well the meds he’s being given make him feel crappy in various ways. Apparently Tegretol has such awful side effects they have to monitor his blood constantly, and he has two huge bruises on the inside of his left arm from that.

On top of that, there is the inescapable noise.

The man with the walker walks the loop from morning till night, the whole time calling continually, “Help me, please, somebody help me. I’m not well. I don’t know where I am. Where am I? I’m not well. Where ‘m I? Help me.” It simply never stops.

Another man, who sits in a wheelchair or a chair in the dining room all day long, continuously makes a disturbing growly, yeowling sound.

There is no way for other patients to escape either noises because even if one is in one’s room they’re audible. In the hours I was there, those two sounds nearly drove me nuts.

The third almost constant sound and sight that is somewhat disturbing is a man, who is still quite articulate but can’t walk well and usually sits in a wheelchair, who repeatedly pedals his wheelchair backward rapidly until he smacks the cupboards in the dining room, or a wall, then swears loudly.

So, for a place that is supposed to provide low stimulation and a relaxed atmosphere, it fails miserably. The only kind of low stimulation there is, is that there is nothing for patients to do besides walk the loop, or sit in the common room and watch the others walk, or lie on their bed (if they can get into their room) and try to block out the continual noise. I have never seen the TV in the common room on. They do have some DVDs, and I played a couple while I was there and several patients watched them, but the patients don’t know how to put them on, and maybe they wouldn’t be allowed to if they did know how.

I did take a CD player and several CDs to Bill’s room, and staff do sometimes turn the music on for him.

I can’t get him out of there fast enough. But one of the patients has been on that ward for eleven months while his wife has been trying to get him moved. And because I’ve been told that even after Bill is discharged from involuntary care there he cannot come here, I’ve decided that I’ll no longer worry about getting him into a care home. As soon as I’m able to get him decertified, I will bring him home.

*****

Just spoke with Dr. A on the phone. She told me that yesterday Bill struck out at a staff member while she was doing his personal care hard enough to bruise her arm, and he backed her against the sink counter. So, now they will have security present whenever he’s changed or washed, and his certification as a Danger to Others will definitely be renewed.

She declined to say how long it might be before Bill might be able to come back to Campbell River, but she did say that because he has had bad side effects from some medications and has not responded to others he might be one of the more difficult cases to stabilize. How she would know which drugs have caused what is beyond me.

Reports show that his problems occur most often in the morning when he first wakes, and I suggested that when I’m in Victoria I can go to the hospital early in the morning to try to prevent it. Dr. A said no because they have to be able to do his care when I’m not there.

I said when I witnessed staff doing his care, they did so kindly enough, but without asking his permission and as quickly as they could, which I do not do. She said she would make a note on his chart that staff ask Bill’s permission before they proceed with care.

All I can do is hope the nurses follow through with that.

nnnn

TWENTY-NINE

Absence Does Not Make the Heart Grow Fonder

First day back in Victoria after being absent for ten days. I had to see the surgeon I was referred to months ago. In that time, Bill was washed and changed but not once showered, his hair washed, his face shaved, or his fingernails cleaned. His feet, ankles and lower legs are grotesquely swollen, some of his toenails are chipped, and the skin on his feet is so dry it’s beginning to crack. Makes me ask, what is considered good care?

I shower him, clean his nails and massage his legs and feet with lotion. Then cut his hair, which he also enjoys. No one bothers us. Then I ask to take him off unit to relieve some of the terrible boredom he’s suffering. I’m told by the nurse she’ll have to ask the doctor.

Next day: same nurse says she wasn’t on shift when the doctor called back and she’ll have to read the doctor’s notes.

Third day: my request is simply ignored, and I’m not allowed to take him down to the lobby to listen to a wonderful men’s choir that’s performing there that afternoon and which he would have truly enjoyed.

Late that afternoon, Dr. J calls me at my hotel, and I tell her the unit is boring and I’d like to take Bill out for some relief. She says, “It’s intentional,” and asks me when I’ll be back at the hospital so she can set up a meeting. “I need time to round people up,” she says. I tell her I’ll be there again that evening and by nine-thirty the next morning. She says the meeting will be the next morning.

Everything I’ve learned about dementia (and a healthy lifestyle for anyone) says keep them engaged socially and physically as much as possible. So whoever decided deadly boring was good for patients with advanced dementia? Somehow they think keeping them in an area where there is zero for them to do except walk in circles is good for them.

*****

I get to the hospital at 9:20 a.m., and wait, and wait, and wait. Finally, at 1:30 p.m. Dr. A arrives. There is no one else. I ask her if I can take Bill off unit and explain there was a men’s choir performing before that he would have enjoyed. She says, “Too soon. The lobby is busy. What if Bill loses control?”

I remind her his only issues have been with personal care—he has never approached anyone and threatened them in any way—and she says, “I think there was one incident that was out of the blue,” but she doesn’t remember and will have to read her notes.

“I haven’t heard anything about any incident,” I say, “and I’m perfectly capable of taking Bill off unit and bringing him back.”

“Okay, you can take him out next time you’re in Victoria,” she says. “But you have to have a staff member with you and they’re busy and might not be able to.”

I have no choice but to agree to that. They keep telling caregivers to take care of ourselves. So why do they make everything so hard for me by making me fight for every tiny thing to help Bill have as comfortable a life as possible?

*****

Chris is here for Easter and comes to Victoria with me to see his dad. Bill doesn’t recognize him when we first arrive and Chris feels the terrible pain of losing his dad while his dad is still alive. He is so sad when he first realizes it he can’t help breaking down. But he’s really good with his dad, and by the time we’re about to leave and head to our hotel, the look in Bill’s eyes has changed to recognition and he hugs Chris hard. Chris feels much better. What that does is warn me that if I’m away from Bill for too long he may not know me when I return. Unfortunately, Chris can’t stay here long and will head back to Alberta tomorrow.

When I get back home, Stephanie tells me the co-ordinator of the Seniors’ Outreach Team is sick at what’s happened to us and she and the rest of the team are working very hard trying to get Bill back here. I don’t know what they’re doing exactly, but it feels like good news. I know Dr. S has now read the four articles I wrote on Alzheimer’s for the Campbell River Mirror, and maybe he realizes I know something about the disease and am not in denial about Bill.

Sadly, in the past three months I’ve learned well that when it comes to dementia patients, exaggerated and even false reports of aggression and violence seem to be the norm, and once a report is made it is not erased even if it’s wrong.

Anyway, Steph says Dr. S is on our side. Trouble is, it’s now up to Dr. A to discharge Bill as an involuntary Tertiary patient, and she is not about to do that.

nnn

THIRTY

Missing Grampa

A call to jubilee this morning and good news. Nurse says no more incidents re personal care with Bill. She also said, “With Bill you just have to go at his pace. You have to talk softly with only one person talking and everyone else be quiet, and ask his permission and explain the steps before you do them, and let him sit or stand as he wants so he can build trust in us.”

Seems like they’re getting it!

Apparently they let him take part in a group game yesterday—something to do with a ball—and he did fine.

I reiterated my concerns about his swollen feet, ankles and legs and she said she would flag it for the doctors, and they would watch it closely. Told her there is cream there that I use to massage him, so maybe some of them will use it on him. Maybe?

*****

In spite of my intentions, my body had a different agenda and I haven’t been able to return to Victoria for the past week. The surgeon told me there are varying degrees of arthritis between every single disc in my back. It’s particularly bad in my neck. They can’t do anything about that and surgery to fuse discs in the lower back is a very last resort, but the knee that hasn’t been replaced needs to be. I told him I’d have to wait for that.

During the week, I called the ward every day. The nurses reported Bill was co-operative, and even smiling and laughing at times. One of them said she gave him a bath and he took a wet washcloth and flung water at her and laughed. She said he loved it!

Three days ago he had been doing so well they moved him to the LPN team.

However, yesterday they took him down for an ultra sound on his swollen legs, dressed only in a hospital gown. He got cold and had to pee, and shoved a Care Aide—don’t know if that was when she was taking him to the bathroom.

Since then, nurses have reported Bill has been aggressive with care—striking out, shoving, trying to push them into a wall. And Security is called every time they have to do personal care. Today, they started giving him antibiotics for a UTI, though they have not been able to collect any urine from him to determine whether or not he has one. I’m guessing they can’t collect urine because they don’t take him to the toilet to pee and I very much doubt he has a UTI. I think he just wants out, period! But no one’s going to grant him that.

*****

Two days ago, I bent to put shoes on; loud crack in my left knee, then I couldn’t walk. Until then, I’d merely been limping. But my knee was locked and I couldn’t unlock it.

The good news is, Stephanie took me to a walk-in clinic and I told the doctor who saw me I needed a new doc for my husband and me. I explained where Bill is and why, then said, “I have to warn you, I don’t always automatically do what doctors say. I ask a lot of questions and sometimes say no. So I need a doctor who is okay with that. Are you that guy?”

His response was, “I like you already.”

I explained I could usually unlock my knee myself but hadn’t been able to this time and it had been locked for twelve hours. I asked him to unlock it. He said, “No. You need to go to Emergency and you need new x-rays right now.”

After looking at the x-rays the ER doctor said, “About your knees…”

“Yeah, I know,” I replied before he got further. “Before I had the right one replaced I was told they both needed replacing, and I’ve been told about the left one again.”

“You need to pay attention to that,” he said. I didn’t reply so he asked, “Do you want me to put you out to unlock it, or do you want an injection to freeze it?”

“Put me out,” I said.

“That means you’ll be here for hours,” he said.

“Okay, inject it then.”

Which he did, and got it unlocked.

Limping, but okay, I went from the hospital to the clinic Dr. P’s at. When the receptionist heard my request for them to transfer Bill’s and my records to another doctor, her eyebrows went up. Dr. P had been our doctor for seventeen years, but I didn’t explain. She said she’d transfer the records.

*****

Stephanie has come upstairs to talk about going to Victoria to see her dad. “But I told Lily she can’t come,” she says. “I’m worried about how she’ll react to her Grampa being dishevelled and different from what he was here. She was really upset and cried, but I want her to remember him how he was.”

“When I was a child,” I say, “I begged to see my Grandfather when he was in hospital dying and wasn’t allowed to. I was given the very same reason by my parents you just said. They told me I should just remember him the way he was. I loved him a lot and was devastated. The next time I saw him he was in a coffin, but I didn’t even see him then because the lid was closed. I have never forgotten it. Lily tells us every day how much she misses her Grampa.”

“I’m afraid of taking her onto that ward,” Stephanie says.

That makes me gawk. This is my daughter who is a Case Manager for people who deal with dementia and she has lived with us for almost two years. I take a deep breath. “There is absolutely nothing to be afraid of,” I say. “All you have to do is explain to Lily she’ll see men walking around, or sitting, and some might make sounds or say some things that are strange. And if she does become upset at all, you or I can simply take her out.”

Stephanie stays silent and goes downstairs.

In minutes, Lily comes running up the stairs, and sits beside me. “Is Grampa different now than he used to be?” she asks.

“He’s changed some for sure.”

“Will he know me?” she wants to know.

“He might not be able to say your name, but he will know you belong to him.” And I explain what the ward looks like and what she’ll see. “Do you think you would be okay with that?” I ask.

“Yes,” she says emphatically. And Stephanie agrees to bring her. We will go on Sunday and stay just one night, returning home Monday afternoon because Stephanie has to work on Tuesday and Lily has school. We’ll take Violet, too.

*****

When we walk in, Bill’s sitting in front of the TV, which isn’t on. He is so happy to see us! He recognizes everyone and Violet licks his hands, face and neck and he laughs. He is, as usual, very unkempt, but for the first time since he’s been there he speaks in complete sentences! Every nurse on the ward soon appears to pet the dog.

I give his nurse the iPod and earphones I bought for him and she tells us that all of the nurses have now downloaded My Girl onto their phones because he knows all the words to it, and they’ve discovered that if they sing and dance with him, he’s fine with care. They also have the words to the song printed out and taped on his walls in two places and have written on the sheet that singing it relaxes him. It almost makes me cry to know they did that.

I ask Bill if he wants a shave and maybe a bath. His immediate response is a resounding, “Yes!”

His nurse also says yes right away. No security, just two nurses helping. I’ve never seen or used anything like the chair hoist they have and with the current state of my knee almost wish I had one in my bathroom. One of the nurses says they’re going to get a new tub, and it will have built-in speakers so they can play music to people while they’re in the tub.

Bill is like a kid with a new toy, thrilled to immerse himself and to have water poured over his head. But when he’s had enough it gets a bit dicey to keep him in the chair so he can be lifted out. He’s sure he should just stand up and get out. However, all it takes is me touching his face and telling him what he used to say regularly to our son when Chris was a boy—“Patience, Grasshopper”—and he laughs and relaxes and is lifted out.

Back in his room, we discover that while we were in the tub room, Lily was busy drawing a picture for Grampa on the whiteboard they have on the wall with colored markers a nurse brought her. The picture is the whole family—each person labelled with their name and everyone with one arm raised, waving. Very cute.

After his bath Bill is tired and lies down for a nap. I sit with him while Stephanie takes Violet and Lily down to Tim Horton’s. They came back up in time to sit with Bill and me while he has his lunch and the afternoon is spent walking and talking. Lily holds Bill’s hand, and he grins the whole time.

We leave after I tuck Bill in for his second nap. In the evening, we visit with Haley, who has just finished her classes for the day. She’s back at UVic, taking her second degree.

Next morning, we head home. Lily says how glad she is she saw Grampa, and Stephanie says she’s glad, too. I consider that what’s happening to Bill is also profoundly affecting us. Lily was so happy to see her Grampa, and he was thrilled to see her. We grieve every day for our loss. We lose him bit by bit from the disease, and that’s compounded by losing him over and over again and him losing us every time we have to leave him. And it’s not nearly over.

Knee or no knee, I will go back on Wednesday and stay for at least five days. Next Saturday there’s a celebration of life for Bill’s step-sister, Carolyn, who died from cancer a month ago, and Bill’s two sisters are flying to Victoria for that.

*****

Bill’s sisters and one niece were in Victoria over the weekend, but they didn’t go up to the hospital to see Bill because when they were here a couple of months ago they went up one afternoon and he didn’t recognize them and became quite agitated. He didn’t know how to respond to them. Nor they to him.

Carolyn’s service was lovely. Her husband had nothing but praise for the medical system and how it had worked for them. They were fully supported, both by Home and Community Care and by the Palliative Team. But he also said anyone who talks about our medical system being less than the best in the world doesn’t know what they’re talking about, and does it for nefarious political reasons.

While I’m really glad he and Carolyn were able to access all the services they needed when they needed them, his comments made my bile rise. He has never visited Bill at the Jubilee and has no idea what others go through, or what other countries’ systems are like. Carolyn was fully cognizant and able to say what she wanted for the entire duration of her illness and her wishes were always respected. And when she was unable to care for herself, she was able to be at home because nurses looked after her in her home 24/7 while her husband continued to go to Vancouver to work for several days at a time.

I can only wish everyone would get the same treatment.