My brother was admitted to the TCU (Transitional Care Unit [aka a rehab unit]) at Academy Manor on or around June 20th. He was put into a room right near the nurses station and we went about the business of getting him settled in. No easy task with Rick.
In his mind, he was there to get stronger and go home. So he refused when they asked if he wanted the television or the newspaper. After all, why pay for those things if he was going to be going home. Now really, can you imagine sitting or lying in bed with nothing to read and nothing to watch? Nothing to distract you from the monotony of your illness? But nope. He was adamant. We were frustrated. I don't know if he thought he'd be in the rehab gym for hours on end and then be napping or what, but he wanted no part of any "entertainment". All he wanted was a phone in case he needed to make a call. Of course, the phone in that room wasn't set up. Now, you may be saying to yourself, "Well, that's ok, he can just use his cell, right"? Ha! joke's on you! He doesn't HAVE a cell phone. For years, my sister and I had been bugging him to get one but he resisted every step of the way. He didn't need one. He had no reason for one. He couldn't use it at work anyway. Well, he needed one now, didn't he?!
The next day, he had some requests for us. He needed some things from home; socks and important paperwork so he could go over it with me. He needed Jeannie to go buy him some new tshirts in size 3x. He was NOT a size 3x, but his midsection was so swollen and tender from his liver that he didn't want anything, clothes included, to touch him. We also brought him his clock radio (yes, I did say clock radio - hello 1978), and we bought him a cell phone and 120 minutes for it.
When we brought all the stuff in, he was pleased but you could tell he was tired. I don't mean tired like "I need a nap"... I mean tired like "I can't take this much longer". His eyes had a bit of a "wild" look to them and he was saying that there was "something going on at this place" but he wouldn't elaborate. I showed him how to use the phone but he was having a really hard time focusing/concentrating. He couldn't really master the whole green button, dial, send thing. Then he asked me how to call 911, just in case. I told him not to call 911 but call for the nurse in an emergency. He looked at me like I had 2 heads. Apparently, it was because of the nurses that he felt he might have to call 911! As best we could figure out, because he was so close to the nurses station, he could hear a lot of what was going on. Add in the fact that he had nothing to distract him (ahem.. tv? Newspaper?), he might nod off. So he might have been hearing things out of context and getting worried. He was really concerned that something "not right" was going on. After some discussion with the powers that be, we had his room moved and calling 911 wasn't mentioned again.
By about day 4 or 5 of his stay, he was refusing rehab. They were coming in and asking him to participate but he was just too tired. And frustrated. When he saw me that afternoon, he said "Do me a favor? Tell them I don't want anything. I don't want them to come in here to exercise, and don't come in to ask me to come play bingo. I just want to be left alone". Now, some of you may be reading this and thinking how sad this is, but with my brother, it's exactly the way he was. He would NEVER be interested in any group activities like bingo or a birthday party and if he told the guy from rehab no once, he would expect the guy not to come back, not realizing it's their job to keep trying. So off I went again to explain to the nurses that he didn't want rehab anymore and to pass the word to activities not to even ask. But although this was very much in character for him, we knew, and I think he knew, time was winding down. He even told me to tell them that he was ready and whatever they could do to speed up the process was fine with him! And I'm thinking, "What, Rick? You want them to come in with a nice big pillow for you?" lol. So yeah, we all knew what was coming.
Having been through this with our mother, we knew that it could take a long time for my brother to die. He was in a LOT of pain and after a particularly scary night where he finally admitted his pain was at it's highest ever, we got the morphine on board to try to control it. But we were starting from behind it because he was so damn stubborn. We tried to explain to him how important it was to stay ahead of the pain. There was no prize at the end for who tolerated the pain the most. SAY something! If you're pain is a 9, don't say it's a 6 (on that 1-10 scale). I can hear him now saying "It's about a 6, but it's ok" when really it was at least an 8. But at least with the morphine, comfort started to ease in.
The Dr came to see him and we were all there. Rick was sleeping a lot at this point and I guess you could say that Jeannie and I had officially started "the death watch". He briefly examined my brother and I asked the Dr about increasing the morphine. Rick lay there, eyes closed, listening but not 100% aware of what was happening I think.
Now, you should know that after watching my Dad suffer with his diseases and have both legs amputated, only to die 6 days after coming home from rehab; then watching my Mom deteriorate fast but hang on for days until "waiting" to pass on Christmas day (as did her own father) I had no qualms talking to the Dr about increasing the drug that would eventually make him comfortable enough to pass away. Neither Jeannie nor I had any desire to sit and watch him get weaker and weaker, slipping into unconsciousness, and taking days and days to die. And Rick himself, throughout the past three years, expressed his desire to not lay in bed and take forever to die.
So the Dr explains to me that if he increased the morphine there would be side effects. And I'm thinking "What, like dizziness? Upset stomach?" HELLO?? He's DYING! Who cares about the side effects!!??" But I didn't say that.. I said "Like what?" and he answered, "well... he would become more drowsy (Um, doc? He's already sleeping 23 hours a day, thinking there's not much room for drowsiness) and his respirations would become slower (not a bad thing Doc cuz I see where you're going with this) and eventually, he would stop breathing. And without warning, my brother raises his hand and says "That one. That's the one I want." I laughed and said to him, "He's not offering that as an option Rick" and my brother replied "But that's what I want". This is the point where I would challenge anyone, friend or foe, to say that euthanasia is wrong.
The Dr conferred with the nurses and I believe the morphine was increased a small amount. And we sat. We watched. My brother stopped waking up and only slept but I guess it was actually unconsciousness. By early evening, my sister, my friend Lianne, who happens to be a nurse on another unit at the Manor, and I sat in the room and talked, just passing time. Mary, Rick's nurse, came in to check on him often, giving him pain medicine when his breathing turned to slight moaning. A few of my co-workers and my bosses stopped by to check in, see how we and he were doing. Although it was a sad time, it was peaceful in the room. Not like I imagine it would be in a hospital, with noises and beeping machines and strangers in and out.
Around 6pm, my sisters boss and a co-worker stopped by. I was introduced to them and they chatted with my sister. These women had never met my brother. I was surprised that both had french (Canadian) accents. My sister never mentioned it. My brother had embraced the french side of our heritage and I think if he had been able to work it out, he would have moved to Montreal in a heartbeat. Anyway, these women seemed pleasant and I thought it was nice of them to stop by. Oh, and when they came into the room, I looked up and saw the cutest little brown bunny in the grass outside my brothers window. I watched it eat a few blades of grass, then hop off out of sight.
After chatting with Jeannie for awhile, Lianne sitting quietly holding my brothers hand and me sitting deep in thought, they asked my sister if they might say the rosary for my brother. Jeannie looked at me as if to ask if that was okay and as I shrug yes, I'm thinking - if they want to go to church this weekend and say the rosary for him, go for it. Ha! They meant here and now! They take out their rosary beads, stand on either side of him and start praying. Do you have ANY idea how LONG the rosary is? Being the lapsed Catholic that I am, I was thinking they'd say an Our father, a Hail Mary and give it an Amen and that was that. But Noooo... not only did they say, out loud, together, EVERY hail Mary and Our Father, they stopped and read each station of the cross. (I think that's what they were - Sister Pauline forgive me!).
Now this struck me as very funny. These women saying the rosary over my brother. Maybe not the actual act of it, but the length of it. I kept catching my sisters eye and rolling mine, smirking to stifle a laugh. I certainly wasn't laughing at them or the earnestness in their voices, but more about how they sort of took over the darkening room with their prayers and we had no idea when it would end. I swear it was the longest rosary in the history of the world! When they were done, we all "Amened" and I thought, ok, that's over with - whew! But then one of them asked if she could sing a little song. Ok really?! You've just spent about five days saying the rosary and now you want to sing? My sister says oh yes, that would be nice. I try to stop them but my eyes roll anyway (I should get that looked at). My brother is breathing/moaning, we think somewhat uncomfortably so Lianne gets Mary to come in with a little more pain med. Then Jeanette, the singer and Pat move closer to my brother and Jeanette starts to sing. She has a lovely soothing voice and when she starts over in french I know my brother would like it. When she's done singing, we all remain quiet, letting the last notes of the song settle into the room.
After a few minutes, Pat asks my sister if my brother speaks or understands french. We both say that he understands it pretty well, yes. She asks if we mind if she speaks to him in french. Of course, we say no, we don't mind. But at this point, I'm thinking, don't you guys have anything better to do on a Tuesday night than hang around in a dying man's room? The whole thing was just really strange. Not in a bad way, but just...odd. So Pat goes over and sits on Ricks right and holds his hand. My sister now moves to his left side and holds his hand. I've moved over to the other bed in the room and Lianne is sitting in one of the chairs at the end of the bed.
Ricks breathing has gotten noisy again and my sister looks at me with a face that tells me she's about to lose it and sure enough... she suddenly bursts into tears and starts... well, the only word that describes it is wailing... she starts wailing "It's ok Rick, you can go. We're going to be alright. Go. You can go. GO! GO!!" Of course, I start quietly laughing. Not at Jeannie for crying or being emotional but because she's trying to yell him to death. You can't yell at someone and make them pass away. That's not how it works! If it did, imagine how many people would be in jail for murder?! Her outburst only lasts half a minute, then she's quiet again. I give her tissues and a smile and she smiles back and laughs a little too.
And then Pat starts talking to Rick. In French. I understand a few words here and there but mostly I understand what she's doing. She's trying to calm him. She's rubbing his hand as she talks, her voice lilting but steady. Sometimes she gets louder, sometimes she talks softly, and as she does this for about five minutes, something strange happens. Ricks breathing starts to soften. The moaning has stopped. I notice that as Pat continues to talk, his breathing gets slower and slower. Then suddenly, without warning, she looks up to Lianne and says "I think we need a nurse here". Pat moves so Lianne can go to where she was sitting. Lianne takes my brothers hand and ever so slightly, I see her feel for a pulse. She nods to Pat, then me, and says "I'll go get Mary". In less than a minute, Mary comes in, brings her stethoscope to my brothers chest, feels his wrist for a pulse. Everything is silent in the room. Like we're all holding our breath. Mary looks over at Lianne and nods. I look at Lianne and she nods to me and I'm thinking "What? That's it? Yes he's gone or yes he's still hanging on"? My sister lets out a big sob and I look up... and I see the bunny outside the window again. He's there just long enough for me to see him and say, "Look, the bunny." And we all watch him hop off into the woods.
Then it's a tear fest. Tears of sadness, relief and shock for what just happened. My sister works with the French Angels of Death! They came, they saw, they prayed, sang and talked my brother into dying. It was awesome! He could have gone on for another few days like that but no, the FAoD brought their magic rabbit with them and took my brother out! If he were here watching, he would have really gotten a kick out of all this!
So we sit around sniffing and crying a little, talking about Rick. Pat says she just told him that Jeannie and I would be okay. that it was time for him to go. That my parents were waiting for him and that his guardian angel was here waiting for him to go. As I write this, JUST NOW, it occurs to me that the RABBIT was maybe an incarnation of his guardian angel! Duh! Well, if you believe that kind of thing... which I'm not sure I do - I'll have to think on that awhile.
The priest shows up to administer last rites. We figured it couldn't hurt, right? He's having a hard time reading from his book because it's dark though, so as Lianne reaches to turn the overhead light on, I have to bite my lip to keep from gasping "That's not my brother" when the room lights up. Gallows humor, you know?...
It's been four months now and I miss my brother. My sister still cries sometimes - I tell her it's because she knew him longer and she swears at me. It's just me and her now in a race to the finish. Neither one of us wants to be the 'last man standing". Maybe some day we'll Thelma & Louise ourselves... me, her, 7 cats and a dog - how funny would THAT be?! lol