Tired

I'm tired.

I've said this a few times today to different people and I've heard the same thing from everyone, that I need to take some time away and relax a bit, just get out and try to recharge a bit. The problem is I'm also torn. I need to be with Mom now, whenever I'm not in the hospital I'm thinking I should be there or I should be getting back or I'm watching the clock to see when I said I'd be back and making sure I'm on time.

It's not just a matter of me not wanting Mom to be alone right now -- I don't want her to be alone, of course -- it's also that if I know there are other people sitting with her, even my uncle Gregory and aunt Zita, I don't want them to feel like they have to stay or that they're waiting for me to come back. I feel a responsibility to Mom's visitors almost as much as I do to her right now. And I feel irresponsible for pretty much every moment I'm not there or the times when I am there and she's asleep and I'm blogging or replying to the little bit of email I respond to these days. I even feel a little guilty about taking time to text Trish with the latest news because it's another minute or so I'm focused on something other than Mom and trying to make her as comfortable and as happy as possible.

But now there's an added complication. I think Mom is getting tired of having me around all the time. Well, probably not just me, but people in general. She sleeps at night (though how much is a question open to discussion since she admits she doesn't really know now and the nurses aren't with her all the time so they don't really know either) but pretty much all day long she has visitors and I think it's wearing her out.

I don't know what to do.

Catching up on Thursday

Thursday has been quiet and I'm actually quite a bit calmer about what I'm seeing than I was on Tuesday afternoon. This morning she was awake but kind of confused. Not really bad but missing a word here and there, struggling to make herself understood. Most of the morning she just slept, though. I got in about ten after eight and when I hadn't seen Monica by nine I asked Mom if she'd already been in but I didn't get an answer. I figured I must have and was waiting for Dr. Kelly when Monica popped in for a quick chat. She didn't really have anything to say -- it's not like there's anything to say at this point -- but she said they were going to discontinue taking her blood sugar levels now, which made Mom a little happier. I guess that does kind of reveal the pecking order here, Dr. Kelly had told us on Tuesday (Monday?) that he didn't think there was any point in it anymore after Tuesday, but I guess Monica trumps him, though even she's coming around to his way of thinking. It really does seem pointless to keep poking her when they're not going to do anything to treat it unless she starts showing outward signs of problems.

Anyway, by about ten-fifteen or so I had concluded that maybe Dr. Kelly had been in early and we'd missed him and when Gregory and Zita showed up and offered to relieve us I took the chance to go out and pay Mom's final power bill and regal Christine with the model of almost German efficiency that is paying electricity in the City of Summerside. Park on Fitzroy right in front of City Hall. Walk 200m or so to the desk. Present bill and debit card. Do the debit dance. Leave. Total time: less than five minutes easy.

We came back to the hospital and sent Gregory and Zita on their way. I'm not sure if it's me or not, I'm still too close to everything to have any perspective at all, but I thought Mom's confusion was a little worse. Not markedly, but maybe a little harder time coordinating her movements. We were with her until maybe quarter past two when her friend Janet K (not the other Janet we've been talking about here all along) came in to visit and by that time I was getting really hungry so I suggested we let her and Adelle sit with her while we walked down to the restaurant at the corner and get some sandwiches again.

On our way out, though, we met Gregory and Zita on the way back into the hospital and they made a much more appealing offer. We went back inside, let Janet know we were going out for a couple of hours instead of the half hour we expected before and then took a ride out to the New London wharf for a real seafood dinner. Gregory said since he'd been there when they took Mom's vitals this morning and everything was good, he thought it would be good for us to get out for a little bit. We were gone for just under two hours total, the plan, but on the way back I got a message from Jim saying the kids were home and ready to skype if Mom was up to it. I said I'd check back when we got back to the hospital, but when we got there Mom was worse still. She was awake and able to talk, but answering any kind of questions was pretty difficult and she was having a hard time putting her thoughts in order. She said to me something like "see, I can be good" twice before she figured out I wasn't understanding and she found what she really wanted to ask, "what time is it".

I only just now realize that this was probably what Janet (D, the Janet we hear most about here) heard the morning they first hospitalized Mom nearly three weeks ago, and this is most likely just another sign of severe dehydration. Obviously I don't know that for sure, but IV fluids and a blood transfusion seemed to bring her back last time. That's not really an option this time, though, because even if that is the case, just listening to her breathe it's pretty clear the tumors on her lungs have expanded. That, and this morning while she was talking to Monica she did say she was feeling short of breath, though it wasn't any significant discomfort.

So we stayed until Janet D arrived around 6:00pm then went over to Brenda and Steve's to grab some food and just relax for a bit, planning to return right around the shift change tonight. When we got back I think she was probably worse still. We talked for a minute or two but when she started making motions that seemed like she was thirsty, I asked her if she wanted some water and she replied with something like we were talking about what was on television this evening. One of the nurses was in to ask her if she was comfortable and such, the usual evening questions, and when she left Mom had to ask Christine if she was a nurse too.

I started writing this up there after Mom seemed to fall asleep again, but we were only there a few minutes before she told us we could go home now if we wanted. Christine asked if she wanted us to go and she said no, but we didn't have to stay and we said we wanted to stay a bit longer with her. I had been thinking I'd catch the head nurse after her rounds and ask her what she was thinking about Mom, but that wasn't likely to be for another twenty minutes. She said okay and we left it at that, but it wasn't more than a few minutes later when she told us again we could go home and get some sleep if we felt like it. We went through the questions again and she said we could stay again but then Christine asked her if she wanted her CD playing again, she's seemed to really enjoy that lately, but she said "that's okay, just turn it off before you go home." We finally decided to take the hint.

I went out and found the nurse and I explained what was going on to her and she told me that so far her vitals were stable and that she was obviously confused but otherwise she didn't think anything was likely to change in the short term. She also told me that if anything did change or if Mom asked for me, she had no problem calling and waking people up in the middle of the night. That's pretty much how she phrased it, too. She did also tell me that there were normally other signs before the end and that the things I probably wanted to look for was a change in colour of the hands and feet and a real inability to respond pretty much at all. There were others, too, but they're described in a book that she offered me but that I already had from Reverend Paul earlier in the day (he'd said at the time that it was more focused on what happens after a loved one dies, but I guess it's both). I suppose I'll go read that now and probably in the morning so I've got a better idea of what to expect.

Tuesday Night and Wednesday Mice

The rest of Tuesday morning and afternoon, the Trish-less part, was pretty quiet. I'm getting quite good at texting back and forth with her (well, good by old man standards, the young'uns would still no doubt roll their eyes and try to snatch the phone away from me in frustration, but hey, a month ago I barely ever used it and now I'm only sending the occasional random gibberish when I thought I was typing. I'm beginning to see the value of a blackberry), and we exchanged a few updates here and there on how Mom was doing and where they were on the road.

Christine and I went back to the hospital for a bit but the morning had taken a lot out of Mom and by the time rest period came around we were looking for lunch so we stepped out. Brenda called to see if we were interested in coming over for home made pizza (uh, y'think?) and we went right over. I forgot to bring Bailey a Timbit again, but she seemed only a little disappointed by it. They also invited us over for dinner Tuesday evening and we said we'd be over, then went back to the hospital for the afternoon.

That's when I got put to the test and I'm pretty sure I failed miserably. We stayed until about 5:30pm when Janet came by to sit with Mom for the evening. I reached over to wake her a bit and let her know we were going out and we would probably pop by later but I couldn't get any reaction out of her at all. I could clearly see her pulse in her neck and I could hear her breathing fine but even when I called her name pretty loudly she opened her right eye once -- there was nothing but white there -- and then nothing. I tried a few times and did my best to remember what else I had learnt in my first aid courses but all I could think is that breathing and circulation seemed okay but she was unresponsive. I sat there quietly for a long time, maybe twenty minutes, certainly more than fifteen, and there was no change but I was getting more and more alarmed.

I can look back on this now and relate it pretty calmly but at the time I was sitting at the bed-side crying and thinking I need to get it together because if she could still hear me I'd only be upsetting her more and I didn't want to do that. I said a few things to her that I needed her to hear, nothing she hadn't heard before but stuff that I think bears repeating, and then Christine came back in the room. Her and Janet had left me at some point to give me some privacy. I told her to tell Janet what I had seen and to bring her back in then I sent a text message to Trish that I'm sure didn't help at all. Started with 'scared' and tried to explain, without sounding panicked, what was going on. Janet came in and I called Trish after she asked me to and while we were on the phone Janet started doing all of the things I should have been doing if I'd remembered my training. Call her name. No response. Ask her to squeeze your finger. Success. Ask if she could open her eyes. No luck there, but at least we've got something.

I sent someone, Christine, I think, to ask the nurses to bring a cot in because I was going to spend the night here and then, in a turn of events I still can't really imagine, Steve's mother came into the room. She is a nurse, working in the hospital and formerly in this unit, so when she came in and heard what had been going on she first did what she could to calm me down, then went off to talk to the primary nurse looking after Mom at that time and get a feel for the situation and whether they thought it was that time yet. She came back with news that would otherwise have probably been pretty bad but at that moment made me feel immeasurably better. Based on what they had been seeing, their feeling was that it wasn't time yet and probably wouldn't be for a while yet. How long? Maybe the end of the week, which as we get closer and closer to it seems something like a moving date to me, but maybe that's just the optimism I try to keep in check most of the time.

Anyway, we got through that and by about 7:30pm we finally left the hospital. Steve's mom also told me I could ask the night nurse her opinion after she finished her rounds, probably about 9:00pm or so, so we zipped over to Steve and Brenda's place, ate then left back for the hospital pretty much right away. The night shift confirmed the same feeling, that it wasn't time yet and they took my cell and Gregory's number to call if anything changed.

I had planned to try to write up all of this when we went back to Steve and Brenda's place but by the time I got there I was completely exhausted. I felt like I'd been awake for the better part of a week and was asleep before my head hit the pillow.

Wednesday morning was much better. Our new routine seems to be get up, Christine drops me off at the hospital while she goes to get the essentials (coffee, muffin) and then comes back. I missed Monica by a handful of minutes, but I really wanted to talk to Dr. Kelly that morning more. The biggest change, though, was that when I came in Mom was awake and aware and we chatted for a bit, maybe half an hour. It was really good.

She faded fast, though, and before long it was just Christine and I sitting quietly in the room. When Dr. Kelly showed up, though, we got to talk a bit more about Mom's current state and then he said something to me that makes me feel like we are probably leaving this place in a better state than we found it. He said that based on the little bit of success we had with internet in Mom's room and letting her talk to Trish and her grandchildren, they're going to be bringing internet into each of the rooms from now on so patients can hopefully communicate with family members and loved ones that cannot be here with them. He didn't frame it in the context of "we think we should do this and we're going to discuss it" either, he said it like it's a done deal and now it's just a matter of them running the cable and drafting the IT policy. It's a small thing, for sure, but I feel like we've done something here that will make this time a little easier for those people coming after us. I don't want to sound like this is something I did, Rev. Paul did all the hard work of arranging for the cable and talking to the IT staff, all I did was grab a webcam, chose Skype from the list of available options, and coordinate with Jim, but the end result is we all did this and it's something that will be available to all patients here soon.

What else about yesterday? I'm forgetting stuff, I know, but that was the second biggest thing. The biggest was when I called Trish and she told me something Mom had said to her when they were talking in private. She told me that Mom had told her about a dream she had where the three of us were together and outside and she was healthy and happy to have her children together with her. She told me that she hopes Mom keeps having dreams like that and so do I.

The day ended with a bit of much needed humour, I again got to see Mom smile which made me feel great at the same time that I was feeling terrible for what I had done.

It was around quarter past eight, Gregory and Zita had just left and I had just finished the post from last night. I was packing up and, as I always was told, I was going to give Mom a kiss and let her know I was going home for the night. Well, I was leaning over her and as my beard brushed her cheek she flinched and jumped away and stared up at me with total confusion. I apologized over and over and said I just wanted to give her a kiss goodnight and then she said something that made Christine laugh out loud, probably enough for the nurses to hear in the hallway. She said "it's your beard, I thought it was a mouse or something crawling on my cheek!" I felt so bad, but I couldn't help laughing too. She took a little while to calm down and when the nurses came in she asked them for a bath -- she had been thinking about a bath before bed time all day, so at least something kind of good came of it -- and we stayed until they came to get her, but I still think she was a little rattled by the possibility of a mouse in bed with her when we left.

Now Christine's taken to calling it my mouse instead of my beard. That'll probably stick for a long time.

I skipped over a part of Tuesday afternoon because I wanted to talk about what happened first, then come back to a very bright moment in an otherwise pretty grey day. When we got back from lunch mom's friend Loretta was visiting with her. She's a little bit older than I remember her from when they were working at Lofood on Water Street in the 1980s, but she still looks just incredible. Unlike most of us who have aged twenty-some years since then, I think she's aged about five, certainly less than ten, and I'd recognize her in an instant.

Now that I've been away for a while and I'm reconnecting with so many people who were there while I was growing up, I'm seeing where I've picked up a lot of my habits and mannerisms. I'm sure I've learnt a lot of how to tell a story from Kenny, my cousin's husband. I knew all along that I first started learning the value of a wicked sense of humour from Loretta. I remember one time while I was visiting Mom at work talking with her in the break room and she told me how she felt so bad because she'd made her niece and nephew cry. How did she do this? They'd been talking about everything they were going to get for Christmas and she said something like, "You haven't heard? Christmas is cancelled this year, Santa Claus got hit by a train." Yes she felt horrible about the way she made them cry, but we also got a good laugh about it. Probably means both of us are a little bit evil, but I'm sure that's where I learnt to embrace it.

It was really good to see Loretta again. She visited for quite a while, talking to Mom when she seemed awake, either quietly sitting with us or chatting a little when she wasn't. She told us about the friend she's been helping out, we talked about old times, Christine and her swapped stories about life in Belleville, it would have been a lot like any regular visit if we had been in a different place for a different reason. When she left the last thing she said to me was to be strong, that I'd get through it and that I should call her if I needed her for anything.

The Rest Of The Story

I'm spending too long between posts, I know, because I'm having a hard time remembering what things happened in exactly what order, but I'll try not to miss anything and I'll hope that anyone reading this who was also there (that'll mostly be you Trish and Christine) can correct me.

Having said that, I need to back up briefly because Christine won't stop asking me to write this part down. Well, two parts. One that I will refuse to elaborate on here but she told me last night that I need to at least put something down so I won't forget about it: potatoes. That's all. That's a part of the story I'll want to remember years from now, I'm sure, and I'll share in person but it's probably not something I should put in writing.

Second is the very first meeting Trish and I had.

I knew from the text messages that she'd be arriving any minute but out of the blue Mom asked for a slice of apple. We had done that earlier in the day and I'd forgotten that she didn't like the peel and so she'd spit out the peel after she'd chewed it, so this time I was going out make sure I did it right. I stepped out of the room on my way to the family lounge to get a knife and turned and there she was, walking toward me with Jim a few steps behind. She said "Justin?" and I'm pretty sure I replied "Trish!" and then we hugged. Pretty much what you would expect from a meeting like this, common enough in hospital hallways, I image. Then she said "You're so tall!" To which I replied, demonstrating my unique observational skills, "You're not!"

Oh well, I'll have ample opportunity in the coming years for Trish to experience my wit and a dopey first greeting is probably a good tone to set for her to feel like the big sister. Clearly I can be caught off-guard even if I'm 'on' most of the time.

Okay, Sunday morning we got in to the hospital and I waited in the lobby for them. I think we planned to do this, I know I wanted to because I thought it would be best for us to come into the room together. Jim offered to stay in the car until we sent him a text message saying it was okay to come in, so we could have our private talk with Mom, which turned out to be longer than we'd thought but he soon enough had Gregory and Zita to chat with in the parking lot, we found out.

I don't particularly believe in fate, but unlike the previous two mornings, when Mom had been pretty tired and pretty out of it, this morning she was bright and alert and in a good state of mind to talk. I'm resisting the urge to say it was meant to be but that's certainly how it felt. I don't remember how long we talked to her, but I'm pretty sure it was a little before 9:30am when we went in and it was after 10:00am when I left Trish and Mom to talk alone together. I tried to lead the discussion at first, I could tell Trish was having a very hard time speaking and I knew if I didn't do something I'd be in the same boat. I think we got to tell her everything I thought we needed to as her kids. The important stuff, that we'd met, that we were getting along, that we had felt a connection right from the beginning and that we were already sharing the kinds of stories that you wouldn't share with anyone who wasn't family. That we already had that level of trust that you get from being siblings and that we were going to keep it going. The stuff she needed to know in order for her to feel like her dream of us doing stuff together would still happen.

I left them to talk for a while, too, and just waited in the family lounge for her. When she came in I shut the door and her and I talked together again for a long time, sometimes about her family, sometimes about mine, sometimes about our own stories about Mom. We have a lot to catch up on. She still worries a bit about talking about her adoptive family, but I'm sure after a while she'll get comfortable with the idea that I really do want to know about that stuff too since they're the people who were around her all her life and that's important to me.

Anyway, we finally let Jim come in and there was another, now fairly typical, reasonably large group of visitors there so we spread out into the family lounge. We were talking there when Christine arrived. I had started to dial her number on my cell to let her know that the nurses were in with Mom and she should come down to the lounge directly when she popped up behind me. This was, for the record, the first time I had any hint that she had carried through on her long-term plan of getting a haircut. Again I had one of my brilliant moments and said "Oh my God! What'd you do to yourself?"

Thankfully she knows me well enough now to know that was in no way a criticism, in fact I think the new cut looks great, but if I'm not on top of it all the time utterly inappropriate things will fly out of my mouth. It's a curse but it's at least occasionally amusing for the bystanders.

I don't really remember most of the rest of the day now. We visited for a while longer, we went out for a bit, we came back for a bit then we went over to Brenda and Steve's place (I think that was Sunday) and spent the evening going through boxes.

Oh, right, I forgot why.

On Saturday night the curiosity was killing me and I finally had to ask Trish about Mom's paintings. I knew she didn't have any and I knew it was because Mom had been waiting for her to ask for one. I knew this because we had asked Mom if she had given any to Trish and she had said, in a response that is so typical of my mother that I'll be able to hear her say it to my dying day, "No, she didn't ask for one and I don't want to force any on her."

Anyway, so I asked if she knew she had been expected to ask for a painting if she wanted one. I was leading up to asking her which of the ones Mom had done she would like to take because I knew she would want some even if Mom didn't know that. Trish was floored by the idea that she had painted actual paintings, she knew Mom was taking art classes but she never knew she had painted anything she had framed and hung up.

So part of Sunday morning was Trish and Mom talking about the art that Mom had done and was still hanging up in her townhome. Mom told her that she should have the ones hanging in the living room if she wanted them, which included the first thing she had ever painted and framed, a scene from Cavendish beach, and I think the last one she had painted, a farmhouse on a country road in Quebec. Both of which are incredible by the way.

That's why we were over going through boxes on Sunday night, we had started looking at paintings (Trish felt bad about taking anything I wanted but I really, really want to share with her and it's not like I don't already have several paintings from Mom at home) and then we were looking at Christmas decorations (our mom loves Christmas decorations and she's got a lot) and deciding who should take what and then we were going through just other boxes. We found the envelope that was labelled "For Trish" that I'd thought we might have packed somewhere unfindable, and she found treasures there that she thought simply didn't exist, which was the best part of the evening for us both. To her, for finding it and to me for being there to see how happy it made her to discover this part of her history.

Monday morning came and we got in pretty early -- this isn't what Mom had wanted, she would prefer us to come in after the nurses were done with the morning routine, but we really wanted to talk to Monica -- and as luck would have it Monica was running very late. She didn't get around until after 9:00am and then Trish and I were talking to her for quite a while, mostly about what was still going on with Mom and what would happen over the next couple of days. By the time we were done we were all really hungry since we'd made a decision to meet at the hospital, catch Monica, then go out for breakfast while the nurses did their work in the room.

We did get an appointment to meet with Dr. Kelly (again, sp?) at 1:30pm that afternoon, which was the main goal, I guess, because Trish wanted to talk to him before she left and they had to take off on Tuesday morning. Somehow, though, we all nearly forgot about it and it was about twenty-five past before we left the hospital. Made the trip down to his office a little tense but he was running late and we ended up having to wait a few minutes in his waiting room. The assistant couldn't actually find us in his appointment book and I think he probably didn't actually schedule us, that he squeezed us in because of the urgency of the situation.

Finally we get to the point that I wanted to talk about yesterday. I have never sat in a room with a doctor with such an aura of calm about him. He had four people show up when I'm sure he expected no more than two, so he had to find a room big enough to accommodate all of us, then he had to find chairs and he was obviously very busy but at no point during our conversation did I feel rushed or pressured in any way. He seemed to be about 50% priest, as well, in the soothing, reassuring way he spoke and the terms he used and the analytical part of my brain (still running even while I was unable to speak because of the lump in my throat and the total breakdown threatening to hit me any second while we were talking about what is pretty clearly my mother's final days and what is to come) noted with approval that he adopted our manner of speaking, our preferred terms and our language almost immediately, stepping some things up where we showed we were better informed than the layman, reigning it in on things that were obviously upsetting to my sister and I.

And now a bit of utterly inappropriate humour. Since that first meeting I've been trying to place who he reminds me of and I figured it out today. His voice and his appearance are eerily similar to that of Jay from Daily Planet on the Discovery Channel.

I actually held it together mostly in the office and the ride back to the hospital, but that's as far as I got. I again lost it in the parking lot and just had to sit down in the grass outside the hospital for a while for a quiet cry. This situation sucks in ways I cannot describe but it felt better to do that.

We stayed with Mom for the rest of the afternoon, sneaked out quickly for a bite at the Heritage again then came back to the hospital and spent the evening just chatting amongst the four of us around Mom's bed. It seemed like she was asleep for most of the time but she did occasionally just pop up into the conversation and it was obvious she had been following it the whole time. We were there reasonably late -- none of us really wanted the moment to end -- but as we became more convinced she was asleep we felt it was best to let her get some real sleep.

It was on the way out the door that Trish was standing over her, struggling to decide if she should wake her up to tell her we were leaving or not and I remembered that Mom had always told me no matter what time I got in or what time I was going out she wanted me to wake her up and let her know so she knew I was okay. I told Trish she would want us to wake her and so she did and that's without a doubt the best moment of Monday.

Trish woke her up and told her we were going. Mom motioned her close and whispered that she was glad we had our talk yesterday and she was really happy to hear everything we had told her. Then she did the same to me. Given that we're never entirely sure right now if she's completely coherent and remembering things or not, that was probably the best thing that could have happened to us both.

Tuesday morning ... well, I started the first part of the story that I think it was the hardest thing I've had to endure yet and I still stand by it, even in light of what happened Tuesday afternoon. We talked to Monica in the morning, then Dr. Kelly, then her and I had a talk for I don't know how long. It started with us just talking in the hallway, her getting ready to leave and saying she thought she'd like a few moments alone with Mom again, and before long one of the nurses asked us if we'd like a private room, probably because seeing the two of us crying in the hallway was likely to upset other people. I tried to make her feel better about having to leave, we all understand she can't be here now, and she tried to make me believe I'm going to be able to do what I need to do in the next few days and weeks. I don't know if either of us convinced the other but at least we felt better by the time we came back to the room.

She went back into the room to say goodbye to Mom and the rest of us waited in the family lounge, to give them some privacy. I don't know about anyone else but I knew it was a very, very difficult parting with how long Trish was in the room and when she came back she couldn't speak. I don't know how I could've done it, I think she was probably stronger than I could have been in her situation, but realistically she couldn't have found more than a day or two extra here and it would have burned more chances of her getting back later on if she needs to, so it really was the best thing to do. We had our own tearful goodbye in the family lounge where I had yet another first. I have never seen my uncle Gregory cry before, but he was crying as he said goodbye to my sister. This has hit us all harder than we ever would have imagined but I also couldn't have imagined how much we've been able to help each other.

There's more, I'm still a day and a half behind, but it's time to wrap it up for now. The shift has changed and I want to find a nurse and then some food. I'll probably not be back to this until tomorrow, but I will be back, there's a discussion with Dr. Kelly I want to share, the way everyone helped me through Tuesday afternoon, the visit with Loretta, too much to tell here now.

Newspaper Clipping

Trish found this in Mom's bible, it's just the sort of thing Mom loved, so I thought I'd share it.

Always live life to the fullest,

Don't let go of hope,

Hope gives you the strength to keep going when you feel like giving up.

Don't ever quit believing in yourself,

As long as you believe you can, you will have reason for trying.

Don't let anyone hold your happiness in their hands,

Hold it in yours so it will always be within your reach.

Don't measure success or failure by material wealth but by how you feel,

Our feelings determine the richness of our lives.

Don't let bad moments overcome you,

Be patient and they will pass.

Don't hesitate to reach out for help,

We all need it from time to time.

Don't run away from love but toward love,

Because it is our deepest joy.

Don't wait for what you want to come to you,

Go after it with all that you are, knowing that life will meet you halfway.

Don't feel like you lost when plans and dreams fall short of your hopes,

Anytime you learn something new about life or about yourself you have progressed.

Don't do anything that takes away from your self-respect,

Feeling good about yourself is essential to feeling good about life.

Don't ever forget how to laugh,

Or be too proud to cry or too stubborn to smile.

Too Close To Tell

Trish had to leave this morning and even though I find it kind of hard to believe, I think that was the hardest part of this whole experience so far.

I think maybe I need to back up a bit, I don't know quite what all I've written about so far, so I'll try to hit the important stuff. She got here on Thursday afternoon and we visited with Mom for a bit, then went out for food and a couple of drinks, then came back to the hospital for a while. I was so happy to have that little bit of social time even in the middle of all of the stuff that's going on right now.

I've never been a brother before but immediately I felt like I was sitting beside a family member. Which wouldn't be surprising, I guess, except that twelve years ago I was an only child and now I have an older sister. We haven't talked anywhere near as much as we should have since Mom and her made contact again and over the last few days together we found out that both of us had the same, mistaken ideas that created that situation. I kept thinking that she's an adult, she's had a family, she's married and got children of her own now, she doesn't need me coming along and complicating matters any. Part of that came from me knowing that Mom and her were not getting along all the time, too. The reunion was difficult for many reasons and I didn't want to add to the difficulties by trying to brother up the situation any.

Anyway, she told me she had been thinking the same sorts of things and I wish I could say we had a laugh about it but right now all we can both think is how much time we lost and how much Mom wanted to be there to do things together with us. All we can do now is try to make sure we don't lose the connection we've made. That, and we talked to Mom so she knows that now that we've met we're getting along great and we're both going to do our best to be family from now on.

I'm getting ahead of myself, though.

Yeah, so, sitting at the bar, hanging out with my sister and my brother-in-law, Jim, felt more natural than I ever would have imagined. She got a splinter off the table and while we were all taking turns trying to get it out her boys were texting her and all she could talk about was how much the splinter hurt and how she needed to get it out but we didn't have tweezers or a pin or anything and it was too deep for any of us to get with our fingernails. It felt so great to just share a normal moment with her I had to write it down. That's another one of those things I want to make sure I never forget.

Friday was, as I mentioned, a bad day.

I'll characterize it that way, but I'll also say that there were good things that came out of it. Trish cornered Monica early in the morning, asking her tough questions that I wish I'd known to ask and even though the end result was us feeling that the best thing we could do would be to turn off Mom's IV and just let her go, and even though we felt that she probably wouldn't live through the weekend, Trish also did accomplish the single best thing for Mom in ages. She insisted that Monica bring in Dr. Kelly (I think, it's pronounced the same even if I have the spelling wrong, which I think I do), the Palliative Care doctor here. He's been on vacation for the last two weeks but he returned on Monday and so on Friday Monica agreed to ask him to look at Mom's case and consult, I guess. I'll get back to that in a bit, too. For now I'll say it seemed like a small victory, but it was an important one.

Friday afternoon we went out to get something to eat, I called Christine and then we went back to the hospital. It was close to 7:00pm before we considered leaving at all -- none of us were hungry at all -- but when we did we drove down to Cavendish and thought we'd just get ice cream instead of a meal. I didn't know it when I suggested it, but this was one of the things that Mom had wanted to do with us, she wanted to take Trish and I down to the boardwalk, get some Cow's ice cream and walk along the beach together. When we came back to the hospital Jim and Trish dropped me off while they went back to Janet's to pick up a pillow for Mom and I told her what we had been doing, just sort of as a way of talking to her and letting her know things were going well between us. That's when she said that she'd hoped we could do that together and she was glad we all had a good time. I know we'll never get to all of the things she would have suggested we do together, but I also know we'll get to a lot of them, since I know a lot of what she would have wanted to do with us.

Anyway, I think I've covered a lot of Saturday already, Christine drove to Fredericton and spent the night there with her family while Tropical Storm Danny blew through, and Trish, Jim and I went out to get some dinner then came back to the hospital and just sat around the room chatting until fairly late in the evening. Mostly just little things, sharing stories about our lives and friends and such, but there were a few things that I remember standing out. We talked a bit about Trish's father (probably won't come up here again, but you never know when I get into our pictures) and we talked a lot about the difficulties her and Mom had over the past ten or twelve years (less likely to come up here again, but I wanted to make a note that I'd remember later when I come back to this). One of the things that had come up, though, was that Trish wanted to have a chat with Mom, just the three of us, and really let her know, both of us, that we were doing well and that everything was going to be okay with us, that she was leaving us in a good place and that we loved her. She also wanted a bit of time to talk to her alone to tell her how she felt.

I went home Saturday night and Dad was still up so I stood around in the kitchen chatting with him for a bit. Made myself a coffee and we were having a conversation about Mom and about treatment and about his day when my phone started to ring. As completely irrational as it sounds now, when I saw it was Trish calling me I felt sick right away. I was sure Mom had died and the hospital had called Janet or something and she was calling to tell me. It wasn't, but it was close. She had been beating herself up over not having the courage to talk to Mom about what she was feeling when we had a quiet period on Saturday afternoon and she wanted to know if I thought it was a good idea if we tried to get her first thing in the morning on Sunday. I think at first I was just too relieved to say anything. She told me that she'd been feeling like Mom had been distant with her and that if Janet hadn't told her that Mom had been saying how much she wanted her there, she would have wondered if she was even welcome. I tried to explain what I'd seen of Mom the days before she got home, though, and that right now Mom couldn't start a conversation at all, she just didn't have the strength but that I knew she wanted both her children with her now because she'd been asking about Trish so much earlier in the week. We decided that first thing in the morning on Sunday we'd sit down, alone, with Mom and just tell her everything we thought we needed her to know.

Again, I'm really not doing this justice, I can't put into words how it felt then to be talking on the phone with my sister about giving our dying mother words of comfort that her kids were going to be okay. It was agonizing to be talking about it, but it felt good and natural in a way I can't explain. I'm not the only one, I've said in reference to my sister quite a few times, but now I'm really believing it, I guess.

I'm going to wrap this up now and finish it later, I think. It gets better, but it also gets worse and right now, sitting in Mom's darkened hospital room on a sunny Tuesday afternoon with her snoring softly in the bed and Christine reading silently at my side, I can't tell how it is right now. It's not a good day, but maybe it's okay.

Quick Update

I've been neglecting the blog since Thursday. It's mostly because it's been a few days where there's so much going on I just don't find the time to write it all down, which I know I'm going to regret eventually since I'll have forgotten some of the best parts.

Thursday was a pretty rough day, actually. Mom's decline has been pretty evident since we were able to do the Skype thing on Tuesday and even though we'd planned to let her sleep most of the day so she'd be well rested when Trish and Jim arrived, I was getting pretty concerned about how she was doing. I stepped out at lunch to pay some bills and cut her power, phone, cable and interet service and when I came back she seemed pretty awake and alert, which was really good. But when I got talking to her a bit I realized she was quite confused, she thought she'd slept all night long and it was the next morning and even though I told her a few times that it was Thursday afternoon not Friday morning, she didn't remember it for more than a few minutes.

When Jim and Trish arrived, though, she was asking for slices of apple so I was pretty happy all the same. I don't know what to say about meeting my sister face-to-face for the first time. It should have been an incredible experience, but a lot of the time these days I'm still in that mode that I mentioned earlier, where the volume seems to be turned down on everything. We hugged and talked for a minute and then she went in to see Mom and honestly I've forgotten most of the rest of the first few minutes entirely.

We visited with Mom until about 8:00pm, by then she was really tired and fading in and out, so we went to grab some food and drinks down at the Heritage Pub where we really got to talk for the first time. It was good. Like, very comfortable conversation with someone you've known for a long time. Obviously not all my life, we both are missing lots of details and lots of stories, but that'll come. I didn't think it was at all awkward, though, which is really what I was most afraid of leading up to the meeting.

Anyway, popped back by the hospital after that just to say hi and they went to Janet's and I went back to Dad's place. It was only about 10:30pm but he was already in bed. I don't blame him, this is wiping me out too.

Friday was a bad day. Nothing to say about it except that. All morning Mom wasn't with us at all. When she did wake up she was confused and slurring and at that time I was sure we wouldn't see the end of the weekend. Trish, Monica and I had a long conversation about what was happening and what we were going to do and, against Monica's advice, we had her present all of the options to Mom and let her decide what to be done next. Whether we would stick with the current IV fluids, which the nurses think isn't going to be sustainable for much longer, whether we would remove all IV fluids, or whether we would try to install a pick-line(?) or mid-line(again, ?) IV feeding tube and consider staying on her current IV fluids or IV feeding (TPN). Mom couldn't make a decision then and Monica promised to return around noon or 1:00pm to discuss it again.

The rest of the morning was mostly Trish and I talking about what we should be doing since it seemed like the decision was falling to us.

We'd decided that based on what we were seeing, Monica was probably right and everything we were doing was just dragging out her suffering and we should be removing the IV fluids too. Since we'd turned that decision over to Mom, though, we had to wait to hear what she'd say to Monica when she came back.

I'm lacking the ability right now to put into words how painful this decision was for us and how long Trish and I spent alone in the family lounge circling around what seemed to be the inevitable decision for us. I wish I could explain what it was like but my head isn't in it right now and it may never be, I don't know.

When Monica came back, though, Mom was a little more aware of herself and after a conversation filled with silences that nearly killed me she decided to try to stick with the current peripheral IV fluids and then make another decision when they lost that line. I don't know everything I was feeling then but I know after we left and were driving to get something to eat we were thinking the same thing. That in turning the decision over to Mom we may have made a terrible mistake by just prolonging the bad parts of the time she has left.

I need to be perfectly clear on this, though. Neither one of us thinks that anymore.

We went down to Jimmy's to get burgers and fries and I called Christine. I was sure the time was short enough that she needed to get here sooner rather than later if she wanted to see Mom before the end, so I told her I thought she should start making arrangements for Brazen's care and look into flight options. We didn't talk too long, but I said I'd check in with her later if there was any change.

By the time we got back to the hospital it was almost like we'd gone back in time a week. They brought Mom's dinner, which included a bowl of blueberries and she didn't just take them when offered, but she asked to try them. I think she ate maybe a half-dozen of them, a trivially small amount for most people but huge by our current reckoning, and then she tried a bite of one of those two-bite brownies Trish and Jim had brought with them. Not much, but anyone reading this knows by now that I'm thrilled with anything. Better still, we stayed for another couple of hours and during most of that time Mom seemed to be mostly paying attention to the conversation and even participating. She hasn't seemed that good since Tuesday.

Anyway, we took off for a bit around 6:30pm or so and rather than looking for supper, none of us were even remotely hungry, we took a drive down to Cavendish beach and just walked along the shore for a bit, talking and watching the nut-jobs swimming in the ocean with 16°C air temperature. Christine called me while I was there and told me she'd already deposited Brazen at the cat hotel and was planning to drive to PEI in the morning. I don't really like the idea of her driving all that way on her own but I really want her here and it would help if she could bring stuff back when she goes.

So we left the beach, went to Cows for some ice cream and then drove back to the hospital. That was about quarter to nine when we got there and Janet was still in the room and incredibly Mom was still kind of awake and feeling like talking. We stayed until about quarter after ten when she asked us to leave so she could sleep.

Today's been more of the same, too. We went to Janet's for breakfast and didn't get to the hospital until about quarter to ten but Mom was seeming animated and engaged and generally better than she's been for most of the week. Other than a few drowsy periods today that's been pretty much the pattern. She slept for a bit in the early afternoon but Dan brought Kelly by and she woke up and seemed to brighten when they were here. I'd love to talk to Kelly alone, knowing what Mom's told me about her relationship with her parents, but that'll have to wait for another day. Maybe I'll find her on facebook sometime and see how she's doing, Mom still worries a lot about her and while she does tend to worry about things she doesn't need to, I get the sense that she's justified in her concerns about Kelly.

Anyway, it's now about dinner time so I think we're going to go out and get something to eat then come back and spend the evening here. There's more to tell but I'm going to have to hold off on it, Mom just said about a paragraph ago that she'd like to have a nap so we should get out.