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Jul. 10th, 2004 10:55 pmIt's funny how awful some things can seem one moment, only to be totally eclipsed by something far worse a little while later. Note: what follows is long and it's mostly just me trying to write-therapy my way to a peaceful night's sleep.
I had a good cry earlier today because I was just feeling so damn frazzled and overwhelmed. There has been so much movement and so many changes and so many people doing so many things around me, during a time filled with the general stress of being worried about my mother, that it all got too much for me. And after this morning, when Chris and I got Laine to take the kids so that we could go to my mom's house and chat inconsequentially with my father and brothers (because I wanted Chris there but Chris did not want the kids to be anywhere near my father)... and after we came home and Chris and I had a low-key discussion over whether the kids had to be totally shielded from even a mention of my father or not... and after a phone call with Karen... I felt like I was going to fall apart.
Written before 5:00pm today:
Stop the world.
Some recent highlights in chronological order:
Some other highlights, timelines uncertain:
And it's not even that anybody's doing anything wrong - eg Sarah and her family have been ideal houseguests, and at any other time I would've been really happy at just how well things are going - but it's just that when you have that many people and that many decision-makers plans will naturally change from one moment to the next, small changes that are the kind of 'stress' that doesn't even register on anybody's radar in normal times... but when there's so many of them, from so many directions, so constantly, over such a generally stressful time... it's too much.
Later Edit:
Had a good cry after writing but before posting the above, then pulled myself together enough to go back to my mom's house for dinner, as I had promised I would. By myself, not with Chris or the kids as I had planned, because we couldn't find a babysitter.
Visited with Ingrid and my father and brothers for a while - my mother was sleeping, as she had been for most of the day, and Guy was upstairs. I don't know how long we were chatting - maybe an hour. Then the palliative care doctor showed up, checked my mom, then went to the kitchen to talk to Guy. I waited a little while, then asked if I could sit in on their talk.
The doctor said she was going to cancel the radiotherapy, which my mother was supposed to start on Tuesday. My mother is not strong enough to withstand it. I asked if she would get radiotherapy if she got stronger, and the doctor said she was not going to get stronger.
She then explained how she looks at the various systems in the body. The brain stem, heart and lungs, higher brain functions, digestive system, liver, etc. She explained a bit about how as the body breaks down, there are signs that she looks for to see where the body is in terms of shutting down some things to compensate for others. Eg, as circulation starts to suffer, the heart speeds up, trying to compensate until it's going so fast that it can no longer pump well.
She explained that when lymphoma kills, it kills fairly quickly. That the low energy was indicative of this - that my mother will not suffer, but will gradually have less and less energy, until her system gives out. That we'll probably see various changes in activity, thinking processes, breathing, heartrate, etc.
She talked about breathing, and what changes in breathing would indicate, and what could be done about some of the changes. That basically, the only thing that could be done now was to monitor her. That she seems to be stabilized at the 'thinking and energy compromised' stage, but that can change fairly quickly. That most of the changes we will see will tell us nothing but that she's nearing the end, except for one that will tell us that my mother needs painkillers to ease her way, so that she dies in her sleep.
She's slept through most of today, which is normal since she was awake a fair bit yesterday. She may have a pattern of alert one day, asleep the next. When she starts to sleep for most of the day every day, she'll be close to the end. She has at most a few more weeks, almost certainly less than a month, and probably far less than that.
The doctor left and I went back to the living room, where Ingrid and my brothers were. I started to tell Ingrid a little bit, then broke down and we both cried together for a long time.
Eventually my father came downstairs, he and Ingrid and I went back to the kitchen, and talked with Guy in short spurts. It's strange how you think you're prepared, and you are, but it still hurts to hear the words - that there won't be any radio, that here is how she'll probably die, that it's going to be soon. None of us was really prepared for that - at least not prepared enough to take it calmly and rationally. Guy was the only one of us who didn't cry, but only cleared his throat a few times. Ingrid broke down again and again. At one point my father hugged me and held me while I cried for a long time, and he cried some too.
And then there wasn't much left to do other than say goodbye to my father and brothers. Ingrid walked them out to their car and came back with a small figurine of Jesus on the cross - it belonged to Nicholas, but he'd given it to Ingrid for my mother because, he told her, my mother needed it more.
I called Chris and told him. No reason other than to just hear his voice - there wasn't anything he could do.
Ingrid and Guy and I had dinner together. It's odd how empty and strange everything seemed. It was like none of us could think of anything to say. Not that we ate in silence, but it was just strange. We started to talk small talk, but none of us really had the heart to really have a good stimulating dinner conversation. And at one point we started to talk about inheritances and how ridiculous people get about them - family feuds that erupt over punch bowls or things like that.
I did tell Guy one thing, though. My mother had him make a list of things that he'll take from the house after he decides to leave it, and wanted me to make a copy of it so she could sign it and he'd have that 'just in case'. I gave him the copy I'd made and told him "You know this is your house, everything in here is yours as far as I'm concerned - you don't need this piece of paper, but she wanted you to have it." And he interrupted me before I even finished saying that, and said, "No, I know, I don't need it, but she wanted to have everything settled, so we do whatever she wants to keep her happy."
Which was good. He's been so good to her, not only now at the end but through the years they've been together, that I hated to think that he thought I'd want to lay claim on anything of theirs after she died. I was glad to hear that he'd made the list for her sake and not his own.
I'm going to bed now. All cried out for now, and all typing-therapied out.
I had a good cry earlier today because I was just feeling so damn frazzled and overwhelmed. There has been so much movement and so many changes and so many people doing so many things around me, during a time filled with the general stress of being worried about my mother, that it all got too much for me. And after this morning, when Chris and I got Laine to take the kids so that we could go to my mom's house and chat inconsequentially with my father and brothers (because I wanted Chris there but Chris did not want the kids to be anywhere near my father)... and after we came home and Chris and I had a low-key discussion over whether the kids had to be totally shielded from even a mention of my father or not... and after a phone call with Karen... I felt like I was going to fall apart.
Written before 5:00pm today:
Stop the world.
Some recent highlights in chronological order:
- Thursday: Ingrid will be here tomorrow at 4.
- Friday: Ingrid will land today so please go get her at the airport.
- Friday: Karen will babysit the children next Friday.
- Friday: Dory may get here one of these days.
- Sunday: Sarah and Reiner are coming on Tuesday.
- Monday: Sarah and Reiner are coming on Tuesday at 4.
- Monday: Soccer game is Tuesday at 6.
- Tuesday: Dory is here already. Wants to see me at 5. No soccer game.
- Tuesday: Dory will leave tomorrow.
- Wednesday: Or maybe the day after.
- Wednesday: The doctor will come soon.
- Wednesday: The doctor has been and gone.
- Friday: Sarah will be out for an hour.
- Friday: Sarah will be out a little longer than expected.
- Friday: Chris will be out from 11:30-4:30 - when I had planned to be at my mother's house for those hours.
- Friday: Karen asks, am I still babysitting tonight? Answer: No, I'd totally forgotten and we were going to eat in tonight, as we're going to my mother's tomorrow night.
- Karen will call tomorrow, she may be able to babysit in the evening if her team isn't doing well at the volleyball tournament.
- Friday: By the way, my father and brothers are here.
- Friday: Chris says our kids cannot visit my mother tomorrow morning while my father is in her house.
- Saturday: Call Laine for babysitting
- Saturday: Back from mother's house, Chris says children can never be around my father
- Saturday: Karen calls, volleyball tournament going well, won't be able to babysit today
Some other highlights, timelines uncertain:
- I tell the boys both families will be home tonight and we'll be making quiche - and spaghetti, I reassure Daniel, who hates quiche.
- Nope, plans change, Sarah's family eating out, we eat leftovers.
- Next day: Chris makes quiche, Daniel wants to know where his spaghetti is, as he was promised no quiche by me, Chris tells him he's not in a restaurant and our policy is no special meals for anyone. I am at my mother's house with Dory, unaware of this major drama, and come home to a hysterically crying child and rather miffed spouse. Explain original deal to both, crisis ends.
- Going to Mont Cascades. Not going to Mont Cascades. Where is Mont Cascades? Oh - there it is. Wow, is Mont Cascades ever expensive. Memo to self: return to Mont Cascades when we win the lottery.
- Mother wants me there.
- Mother doesn't want anybody there.
- Ingrid would like to visit us, which I assure her we'd love for her to do as long as she calls us first.
- Ingrid shows up at our door at a rather awkward time.
- I'm freaking exhausted and I feel like crying.
And it's not even that anybody's doing anything wrong - eg Sarah and her family have been ideal houseguests, and at any other time I would've been really happy at just how well things are going - but it's just that when you have that many people and that many decision-makers plans will naturally change from one moment to the next, small changes that are the kind of 'stress' that doesn't even register on anybody's radar in normal times... but when there's so many of them, from so many directions, so constantly, over such a generally stressful time... it's too much.
Later Edit:
Had a good cry after writing but before posting the above, then pulled myself together enough to go back to my mom's house for dinner, as I had promised I would. By myself, not with Chris or the kids as I had planned, because we couldn't find a babysitter.
Visited with Ingrid and my father and brothers for a while - my mother was sleeping, as she had been for most of the day, and Guy was upstairs. I don't know how long we were chatting - maybe an hour. Then the palliative care doctor showed up, checked my mom, then went to the kitchen to talk to Guy. I waited a little while, then asked if I could sit in on their talk.
The doctor said she was going to cancel the radiotherapy, which my mother was supposed to start on Tuesday. My mother is not strong enough to withstand it. I asked if she would get radiotherapy if she got stronger, and the doctor said she was not going to get stronger.
She then explained how she looks at the various systems in the body. The brain stem, heart and lungs, higher brain functions, digestive system, liver, etc. She explained a bit about how as the body breaks down, there are signs that she looks for to see where the body is in terms of shutting down some things to compensate for others. Eg, as circulation starts to suffer, the heart speeds up, trying to compensate until it's going so fast that it can no longer pump well.
She explained that when lymphoma kills, it kills fairly quickly. That the low energy was indicative of this - that my mother will not suffer, but will gradually have less and less energy, until her system gives out. That we'll probably see various changes in activity, thinking processes, breathing, heartrate, etc.
She talked about breathing, and what changes in breathing would indicate, and what could be done about some of the changes. That basically, the only thing that could be done now was to monitor her. That she seems to be stabilized at the 'thinking and energy compromised' stage, but that can change fairly quickly. That most of the changes we will see will tell us nothing but that she's nearing the end, except for one that will tell us that my mother needs painkillers to ease her way, so that she dies in her sleep.
She's slept through most of today, which is normal since she was awake a fair bit yesterday. She may have a pattern of alert one day, asleep the next. When she starts to sleep for most of the day every day, she'll be close to the end. She has at most a few more weeks, almost certainly less than a month, and probably far less than that.
The doctor left and I went back to the living room, where Ingrid and my brothers were. I started to tell Ingrid a little bit, then broke down and we both cried together for a long time.
Eventually my father came downstairs, he and Ingrid and I went back to the kitchen, and talked with Guy in short spurts. It's strange how you think you're prepared, and you are, but it still hurts to hear the words - that there won't be any radio, that here is how she'll probably die, that it's going to be soon. None of us was really prepared for that - at least not prepared enough to take it calmly and rationally. Guy was the only one of us who didn't cry, but only cleared his throat a few times. Ingrid broke down again and again. At one point my father hugged me and held me while I cried for a long time, and he cried some too.
And then there wasn't much left to do other than say goodbye to my father and brothers. Ingrid walked them out to their car and came back with a small figurine of Jesus on the cross - it belonged to Nicholas, but he'd given it to Ingrid for my mother because, he told her, my mother needed it more.
I called Chris and told him. No reason other than to just hear his voice - there wasn't anything he could do.
Ingrid and Guy and I had dinner together. It's odd how empty and strange everything seemed. It was like none of us could think of anything to say. Not that we ate in silence, but it was just strange. We started to talk small talk, but none of us really had the heart to really have a good stimulating dinner conversation. And at one point we started to talk about inheritances and how ridiculous people get about them - family feuds that erupt over punch bowls or things like that.
I did tell Guy one thing, though. My mother had him make a list of things that he'll take from the house after he decides to leave it, and wanted me to make a copy of it so she could sign it and he'd have that 'just in case'. I gave him the copy I'd made and told him "You know this is your house, everything in here is yours as far as I'm concerned - you don't need this piece of paper, but she wanted you to have it." And he interrupted me before I even finished saying that, and said, "No, I know, I don't need it, but she wanted to have everything settled, so we do whatever she wants to keep her happy."
Which was good. He's been so good to her, not only now at the end but through the years they've been together, that I hated to think that he thought I'd want to lay claim on anything of theirs after she died. I was glad to hear that he'd made the list for her sake and not his own.
I'm going to bed now. All cried out for now, and all typing-therapied out.
