Sunday, October 31, 2010

Tonight it looked to me as though my mom's kidneys were starting to fail, as she now has rather swollen hands and arms in addition to her legs. She is pretty much unresponsive and is not able to speak anymore. Generally though, she seems to be comfortable, except about every 1.5-2 hours when she needs to be turned. The turning itself is when she is most alert-I gather that it's uncomfortable and somewhat frightening, but after a few minutes she relaxes again. We are all getting quite tired. My cold today took a more miserable turn and as I found out, those hospital tissues are rough as sandpaper. I haven't looked but I bet my nose is red and raw. I think my mom and I were almost in competition for mouth breathing...

I can accept in my brain that this is going to happen, and soon, but I guess the heart doesn't want to believe it. It's rather unreal. But I know that she will soon be free of this, able to sing once again-something she hasn't been able to do very well since she got sick a year ago. Singing was always one of the things she loved the most-in fact, she met my dad in a choir. Watching her breath tonight though was a challenge as she does cyclical breathing-common with dehydration deaths. That's where she will breath fast for 3 or 4 breaths and then not breath for quite some time and then do one or two slow breaths, then back to fast, then maybe normal for a few breaths. It's very hard to watch though. When she does the slow breaths you think "is this it?" I hope that we don't get called in the middle of the night for a very practical reason-that the good ol' seroquel that wonderfully puts me out tends to not wear off for a while! So mom, if you can, how about after 6 in the morning if you are going to become free during a night?

The old saying "God never gives you more than you can handle" seems to apply. Sometimes it feels like I can't handle it but when I take a step back, give myself a minute to breath, reorient myself through something like hot tea or some satsuma hand cream and remember that I have lots of support-not least of all God!-I realize that I CAN do this and that I have become a better person for having gone through this. As I tell people sometimes, my mom was diagnosed with cancer when I was 19. As a teenager, even at 19, you still often view parents as more of an annoyance than anything. Well, that certainly changed for me, and not just with my mom. I view my dad very differently now as well. Of course, he still likes to purposely annoy me (I sometimes call him the little brother I never had) but in general I would say that our relationship is stronger than it was a year or two ago. And given that I am living with my dad, I would say that that's definitely a good thing. I hope that we will both be able to give each other space and time though to grieve in our own ways...
We have decided, after consultation with her nurse last night, that we will be discontinuing the 25ml/hr of saline as soon as the resident checks her over-procedure and policy I guess. It may already have been done, or it will happen tomorrow morning. No telling for certain how long it will be after that though. She has so much fluid sitting in her legs, but whether that will be accessible or not is another story. And she will still be receiving some fluid in her medications-the ranitidine and anti-emetics are all given in 50ml of saline. I was there for most of the afternoon, from about 1:30 to 6:30. There was a period of about an hour where my mom was awake, and obviously in discomfort and confusion. She kept on trying to talk, but it came out garbled, with hardly any words even understandable. When she's like that, I tend to say uh-huh or yes a lot. I mostly just stood there holding onto her hand, reassuring her that I was there while watching one of my all-time favourite shows, M*A*S*H on tape on the tv. I must have watched about eight episodes, I think...at one point, the character Father Mulcahy utters a prayer along the lines of "if you're going to take him anyways, take him soon so that we can save the other boy". It's a different situation for my family of course, but I'm definitely feeling that way-that the longer this drags out, the harder it is for everyone involved. That's one of the reasons we have decided to discontinue the little bit of saline. My mom clearly has been getting mrore uncomfortable, even with the fentinyl patch and an additional fentinyl shot when the nurse came in after all that discomfort and confusion (unfortunately, the fentinyl did not put her immediately to sleep as it has in the past).

I did some research about death by dehydration and it is apparantly one of the most comfortable and painless ways to die in situations like this. Hospice nurses listed death by dehydration as an 8 on a scale of 1-9 or 1-10 depending on the study, where 1 is a horrible death and 9 or 10 is a 'good' death. I even read that dehydration can actually help reduce pain, because it decreases swelling in tumour sites and such.

My dad talked a bit with me and our minister about feeling like playing God in all of this, but the truth is that no matter what we do we are somewhat controlling things-whether we left the saline or not. As I read tonight, dehydration is how many animals die-it's one of nature's ways of providing a comfortable death. Although I hate to think of my mom in terms of 'animal' it makes sense-we as humans, are, in some form, an animal I guess. With soul of course, but at this point, my mom is hardly my mom anyways. The rest of us are getting exhausted.

During one of her more lucid moments with me she managed to state " I want to go" and I assured her that she'd done everything, that we would be okay, that I knew she was tired and in pain and that it was all right to go. Whether she actually MEANT that she wanted to go 'home' is another question though. Hard to stay in her state of confusion. She might have been thinking that she wanted to go home from kindergarten or off a ferris wheel for all I know, but I did want to reassure her.

Saturday, October 30, 2010

My mom is still here. What a time we've been having though. We've been told both that it could be anytime now, but also that the 25ml/hr of saline that she is receiving is possibly prolonging things. So now, we have to decide whether to discontinue it or not. My only concern was that if they discontinue it, that they will have more problems giving her the ranitadine and anti-emetic drugs. She's now been on fentinyl for four days-they started it on wednesday because she was having problems breathing and the fentinyl helps to dry up lung secretions as a side effect. Now it's also important because she has been in some pain. Her brother came out on thursday, but left again on friday. This I find a bit strange-given that her death was iminent, wouldn't he just stay until after the funeral? Whatever though. He was there, and that was important. My mom was, unfortunately, not really able to communicate with him. She is now pretty much totally unresponsive, even in the moments when she is actually awake-or seems that way because her eyes are fully open instead of the half-open state that she has been sleeping in for close to two weeks now. She has literally become a skeleton.

This is taking a lot longer than any of us-including her-thought. We are all getting so tired of going up to the fifth floor of the hospital and past all of the elderly dementia patients who are waiting for beds in a nursing home ( or are dying themselves). The smells, the sights, the bumps of the elevator...it's just getting very, very exhausting. And I'm slowly developing a cold, though thankfully not as bad a cold as my last one. I need to be able to keep going up to the hospital!

Thursday, October 21, 2010

My mom did not have a very good day today. It seems that her entire digestive system is rebelling against her completely, and she had diarrhea pretty much every hour, as well as nausea only resolved by vomiting (forget all the drugs that the nurses pumped into her to quell that). What was amazing was that she was able to sit, on the edge of the bed, for a little while. Granted, she needed them to both sit her up, and then lay her back down, but it was amazing because the other day (yesterday!) she could not even lift up her head, and there she is, sitting there, with no support. They have moved her down the floor to a private, palliative care room, with free television and even a fridge (not that she wants anything). It's nice to be in a private room, but it is also very different, as the space is in many ways tighter. And, without curtains, anytime my mom needs help with certain things, she will now be kicking everyone out of the room instead of just being seperated by the curtain. Once again, I feel like my mom and I have a connection...I had a stomachache for much of today, for no reason I could think of...just like when my stomach was all knotted up and I found out my mom had been taken to the emergency room for an intestinal obstruction. It seems like when her stomach is particularly bothering her, mine will bother me...

At this point, we all feel like we're just waiting. She's ready...I guess we're about as ready as one can be. I'm meanwhile trying to balance spending time up at the hospital with school with coping skills. Sunday night I started sleeping with the baby afghan she made me at the top of my pillow. And-here's where I admit something I don't usually, for whatever reason-watching an episode or two of Star Trek is somehow comforting. Between watching more tv than usual (mostly, I watch very little although I have many shows on dvd that I can play on my computer) and being at the hospital, I have been knitting up a storm. Case in point, I finished a baby afghan for a friend who's due in January in less than three weeks-I started it the day my mom entered the hospital with the intestinal obstruction, and finished it on monday. It's done in the fan-and-feather pattern-the exact same afghan pattern my mom used for my baby afghan. My friend 'Carmen' and I are pretty close, and I will share the story of the afghan with her-when it was made, and why the pattern means so much to me. I just wish I could share it in person at the time, but she is now across the country from me! Such is life.

It's late, and I should go to bed. Thank goodness in these days for my wonderful seroquel perscription...

Tuesday, October 19, 2010

Final days...

At this point, my mom has definitely entered her final days. She has conciously made the choice to not eat or drink anything anymore and is only accepting comfort care-no more warfarin (blood thinners due to the blood clot she developed in August), no more blood tests, nothing like that. She's said all her good-byes to me, my dad and my sister, my minister....we've finished answering the 87 questions, she's even planned out how we could possibly renovate the basement. Her obituary is written, the music is chosen, she even has told us what to cremate her in. The urn is made. I think that at this point, she's feeling like she's well, just waiting. That the longer she's here, the harder it will be for us at this point. She has declined very rapidly since entering the hospital. At this point, she cannot lift her head from the pillow or move her legs. She has even lost the ability to use a bedpan. I would guess that she's probably around 70 pounds, if that. Cancer has stolen everything. Talking is becoming a lot harder.

After yesterday, when my dad was over in the afternoon and she said that she was ready, I was a bit panicked and probably my emotions took over over the logical side of me and I felt like it could even be overnight. I fully expected to wake up to the phone at around 3:42 in the morning, and I fell asleep after 1am, with the afghan she made for me as a baby at the top of my pillow. But, that wasn't to be, and so (having already cancelled my flute lesson and my ensemble coaching) I went over with my dad for around 9:45 and we spent until about 4 there with her. Our minister was there for quite some time in the morning with us, and her presence was very comforting. My mom spent a lot of time just lying there listening to us talk-talking for her is a lot of effort now, and her breathing has become faster and more difficult. Her doctor mentioned that if she wanted, he could prescribe a small dose of morphine to help slow down the breathing if it was making her uncomfortable. So far, she hasn't chosen that.

I'm playing things day by day at this point, which is very hard for someone who likes to plan ahead. But, I guess my planning ahead is the part of me that is going, okay, if she is 'going' on such and such a day or time than I will need to cancel/reschedule/tell so-and-so. Her doctor told us that if it was just the stopping eating, it would be up to 10 days or even longer, but he figures that the cancer is really working against her now too-and of course, she's not drinking anything and is not connected to an IV except for when they send the anti-nausea drugs in through her picc line. The nurses were going to talk to the picc care crew to find out whether a 25ml per hour drip of saline would be a good idea just to keep the line nice and clear because they're using it so often. Not sure where that's going to lead yet, but that's still a fair amount of saline throughout the day, and all the saline has done is make my mom uncomfortable-it builds up in her legs, feet, and even in her one hand.

My mom just likes to have someone there with her now and I can't blame her. I want her to be at peace...but I'm going to miss her so much. My prayer right now is that she will continue to not be in much pain (just discomfort when she's been in a position too long) and that her feeling warm for a change (she's been cold for about the past year) will continue. My other prayer is that I will find the strength to lean people when I need to, because I realize I have lots of supports and that they will understand-will probably in fact feel honoured. But it isn't always easy to do that...

Wednesday, October 13, 2010

Enough...is enough...

Tomorrow my mom will have been in the hospital for two weeks. Two long, long, long, long weeks. This has NOT been an easy time, which is one of the reason for my lack of posts. Yesterday I made one of the hardest decisions so far and dropped my 20th century course. It hurt...a lot. Yet, I knew that there was really no other way. I'd been getting behind in the readings, I hadn't even touched the assignment due today, and there is a midterm next week. Add to that that the doctors told my mom 2-3 months and that puts things possibly right in the middle of final exams in December. I don't think I can handle that as much as I want to be Superwoman, Superstudent, Superdaughter, Superteacher, Supermusician and all those other roles I play. 20th century is the only course I have/had that actually has exams-my intro to ethno course has a final summary report which is a little bit easier to do under extreme stress. Still, though, I feel so horrible about dropping the course. I'd never dropped a course before, and the perfectionist in me was saying that there was still a way to do it and that if I was truly a good student I would be able to stick things out and still get an A. The logical person in me said that this was really the best option, and I still have 9.5 credit hours, which is enough to be considered a full-time student, so my options for summer jobs and benefits are still open. And the course WILL be there next year, and I'll still have plenty of friends there to take it with. Yet, at the same time I feel like I'm being passed by and that makes me really sad and frustrated. Sometimes, yes, I do wonder why me, but at the same time, my mom and I both have always had the perspective of why not me. I know that the decision to drop 20th century and take it again next year will mean that I am truly doing the best thing for myself in many ways-less stress, more time with my family, and I am ensuring that I can do my best work. If I were to continue, I would probably be denying myself the possibility of an A in the course, and that was one of my main deciding factors. I spoke briefly with my professor to explain why I was dropping the course, and he was understanding. I hope he's teaching it next year because I did enjoy his style-but, the 20th century course tends to have a different professor each year if not every semester (it's two parts in the fall and winter semesters). So we'll just have to wait and see.

Today was NOT a good day, especially not from 4 onwards. One, I'm in the midst of the monthly depressive period-which, in case you're wondering does coincide with my period. My pms is really getting to the point where I need to discuss options with my doctor. It's simply getting to be not safe anymore to get this depressed where I'm almost paralyzed by it and where I become self-destructive and suicidal. Kidding to no one, that is how I get for up to 5 days out of every 32/33. So, having to deal with that, plus all sorts of other things, made me in not really the best mindset for group. Especially because this was decision making group day-whether to go on with the group, not persue anything right now or go into the intensive program (inpatient/day treatment). I don't commit to something and then back out so my answer was that I was going to continue. However, the psychologist leader had some doubts and I of course have my fears, such as how I CANNOT tolerate any weight gain. NONE ZIP NADA NOTHING. I gained about 5-6 pounds from my old set point weight when things went crazy last fall and so to me, I cannot recover or heal in any way, shape or form until I have lost that and my favourite jeans fit the way I want them to again. All of this led to a rather hysterical me while talking with the psychologist and my 5 minute discussion with her turned into at least 20 minutes ending in a rather spectacular hysterical panic attack. Then, at the end of the group I found out that my person of contact was the one person that I CANNOT stand with the group for many reasons. Put it this way, when I was doing the intake with her and was trying to explain a part of my ed-nos, how hard it was for me to have my mom losing all this weight, not eating etc etc and how I sometimes felt like I was living vicariously in her weight loss, she kept shutting me down by saying "But she's dying". Like, really, this is something I CAN explain about the ed-nos, at least give me a chance. And she said this in a really forceful-no-punches-held-back-not gentle in the least tone too! I was therefore, NOT in a good mindset upon hearing this and left the group rather upset. Flash forward about five minutes later and I'm smashing my head against the metal bus stop pole. Not so good.

I wonder if I should quit the group and try again later if only so that I don't end up with this nurse as my point of contact again and doing the assessment and such. The other two are nice. The one I've gotten stuck with? Well, a good friend of mine who has unfortunately struggled with anorexia for several years now and is just getting released from her fifth inpatient hospitalization tomorrow said "-----She's a cow". Really, it fits her perfectly.

I desperately need to talk to Bethany tomorrow. Let's just say I am crazy overwhelmed angry upset disappointed sad frustrated unsure confused and about ten thousand other emotions.

This time, my mom is not going to be coming home. Her oncologist at the cancer clinic sent in the paper work for referral to palliative care today. I expect that she'll be moving upstairs from the medical unit to the palliative care unit and that will be all. I figure that by the end of the week, she will be to weak to walk even the few feet to the washroom, even with help. Already, she cannot get up from the toilet by herself. Tonight, they needed two people to do so. Actually, as it turned out, a friend from church came up to see her just as the aide was struggling with her in the washroom. Well, he's a health care aide, so he just jumped right in.

I get to see my mom tomorrow. I just wish that we could really have a proper hug together once again. And now I'm crying...yet again...

Tuesday, October 5, 2010

My grandma...July 9th, 1921-October 5th, 2010.

My grandma died, relatively peacefully at about 1:00 pacific time this afternoon. Although my uncle and a former homecare worker that became like a daughter to my grandma were not actually in the room at the time, they were there for her. I'm glad she's not in pain any longer (she had apparantly been in a lot of pain very recently). I am more in the state of shock that comes when you realize you don't have grandparents anymore. At 89, she'd lived a good life. Now she's singing with my grandpa.

Monday, October 4, 2010

Update on my grandma

No, she has not died-yet. She is however, very sick. She has stopped eating and is running a fever. However this is my grandma, the 'tough old bird' and so they've already phoned my uncle THREE times telling him that it was 'time' and she has rallied. I'd say she probably has till about the weekend. I know my dad's heart must be about breaking now-having both his wife and his mom dying and not being able to even go out to be with his mom because my mom is so sick. Well, such is life. All I can say is, there'd better not be a third thing that happens around now! To my sister-you'd better not have anything happen!!!

3 months.

My mom was, officially, given about 3 months today-unless the possible biological treatment that they sent tumour samples off to Toronto to test comes back with a certain genetic marker is a possiblity. If it is, then she has about 6 months IF she choses to go ahead with the treatment. Which she of course, might not-if the side effects are bad, then she won't. She has pretty much everything in order, and there's nothing for her to push to see-no weddings or graduations or major recitals or anything like that in the near future. To be honest, actually being told what I already figured was more of a relief than anything. I think my mom and I have a bit of a connection in that I just feel and know things about her sometimes. I'm going to look into who I could get to videotape/record my little noon-hour recital because I doubt my mom will be able to get there.

The only really good news about today was that the bowel obstruction is only partial and appears to be caused by the cancer. I know that sounds like 'bad' news, but it's preferable to being told that it was blocked inside and that they'd have to do a bowel resection. Not that my mom was a candidate for that-she is far too weak. They've started her back on a little bit of liquids, and so far that's going all right. Perhaps her stomach and everything just needed a bit of a rest. I think she'll be in for at least three or four more days though. I highly doubt they'll let her go before saturday-they need to be sure that she can drink enough so that she doesn't just come back to the ER  in a few days. My question was, if this is caused by the cancer, won't this just keep happening? And if so...are they going to keep on the iv's indefinitely?

My heart is going about a million miles a second right now...my dad's brother just phoned and that probably means only one thing...that my grandma has died.