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She's gone

and I don't think my world will ever be whole again.

I know that everyone goes through this,  I know that this is just the first of many people close to me that I'm going to lose.  And I know that it's the way it's supposed to be - my mother could tell you all about how wrong it is to bury a child.

But I can't help but ennumerate the loss.  I wanted to spend my 50th birthday with her.  I wanted to celebrate my 20th anniversary with her.  Charlotte's 10th birthday.  All those milestones are just around the corner.  My stepdaughter is getting married in November - it would have been the first grandchild's wedding she could attend (my nephew got married in Ireland.)  I'm going to do the art for her invitations, and now I can't show mom the sketches.

Who am I going to show pictures of projects on the house?  When I finally get the damn living room curtains back up, I can't send her pictures - she's been sending me ideas ever since they came down a year and a bit ago.

She loved my pictures from Pennsic.

All these things are things that I shared with my mother.  We would settle in on her bed, and I'd show/tell her what I was working on.

So the last we spoke was Sunday.  I went down on Monday and sat with Dad.  Monday was a bad day.  She was agitated for most of the day, but not present.  Dad had doctor's appointments of his own, so he left for those.  After he left, I ended up calling the nurse, and they gave her... something, that seemed to make her more peaceful.  At one point she'd clearly said "Kris!" in that tone that means "get over here now," but there was nothing coherent after my name.  Dad decided to go home after his appointment, so I headed home.

Tuesday was more complicated.  My nephew had broken loose her original birth certificate, and it was being overnighted to the house.  So I went down to hang out at the house and wait for it.  She'd been working to get that birth certificate for years.  It came four days too late.  I received it, and headed over to the hospital.  My brother came back down.  Also, because the universe just hates me, Bob had to take his dad to an emergency eye appointment (everything ended up okay on that end.)  Because of that, I had to get out of the hospital no later than 3:00 so that I could pick Charlotte up.  I gave her a kiss, told her I love her, and headed to school.

Wednesday I had an appointment in the afternoon, and was just exhausted.  So I stayed home.  Didn't manage to accomplish anything though.  Dad went to the hospital for a while, and it turned out to be her last day.  She passed this morning sometime around 4:00am

It's a kindness.  I can now say with authority that lung cancer is a horrible way to die.  As it grows in the lungs, it prevents oxygen from being absorbed.  So you suffocate.  To death.  Slowly.  The "solution" is morphine, which quiets the breathing center - the part of your brain that senses that you're suffocating and makes you gasp and struggle to breathe gets... put to sleep.  But of course, so does the rest of your brain.  So you don't eat or drink either.  So it's just a matter of waiting to see if they die from lack of hydration, lack of nutrition, or lack of oxygen.  Apparently some people last weeks like that.  Drugged, insensate, struggling to breathe.  Four days isn't so bad by comparison.

I'm not going to tell Charlotte until tomorrow.  She's at chess club right now, and she has school tomorrow.  I'll tell her tomorrow when she gets home.  Then she'll have her sister here, and Coronation on Saturday to cushion it.

I'm not sure what's supposed to cushion it for me.  Time?  What girl ever stops wanting her mother?

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For the record...

Tonight was NOT a good night to hit the chapter in "By the Shores of Silver Lake" where Jack dies.  Just sayin'.
She wasn't lucid today.  They have her on a morphine drip, and I think that's the cause of her lack of coherency, moreso than the lack of oxygen support.  I got down there later than I wanted, but I actually got to sleep last night and didn't spring right out of bed this morning.  Also, it was icy up by me, and letting it warm up some seemed prudent.  So I got another load of laundry done and got the dishwasher unloaded.

I'm not sure she realized when I got there.  Dad was there, and we stayed for several more hours.  She never really came all the way out of it while I was there.  Erica stopped by for a little while, but I'm not sure mom realized she was there.  I feel kind of bad that she came all the way down, but it was kind of her.  Bob and Charlotte stopped in on their way home from Mudthaw.  I sent them home fairly quickly - Charlotte being there has been making mom very happy, but again - I'm not sure she knew.  If it wasn't going to bring mom any pleasure, I didn't want to risk freaking Charlotte out.  I don't mind her remembering that Grandma was in the hospital and very sick before she died, but I don't want it to have been a horror show.  She's only eight.  But she got to see Grandma again without all the tubes and wires.  Obviously I won't take her back.

Judging by how the nurses were with her, had I more aggressively tried to wake her, she might have acknowledged Charlotte.  But it didn't seem kind, or worth it.

Her one lucid moment for the afternoon was when she said "Why are you still here?"  It appeared that her distress level was as much from dad and I being there as anything else.  So we headed home.  If I'm honest, we're not there for her.  Dad is there because where else would he be?  I'm there because I can't leave him to sit there by himself.  We talk around things, and leave the room to cry.  It's all very stoic.  It's what we do.  The person I went to with tears was mom.

I also think that she is actually getting better care when we're *not* there.  When we were there, the nurses (who are all *fabulous,* by the way) would ask us what we wanted them to do.  More morphine?  Less?  Something else?  We don't know.  When we're not there, they use their professional know-how and do what needs to be done without worrying about deferring to the family.

Dad has probably gone back tonight - he said he might.

He has some doctor's appointments of his own tomorrow, so I'll go down for while he's tied up.  I'd say that I don't think she'll make it through the night, but I thought that last night.  On one hand, this is a terrible way to end.  On the other hand, my grandmother had dementia, back before that's what we called it.  Watching her mind go was far more painful than watching my mother's body fail.  But there is still nothing good about it.  The nurses are amazing, and gentle, and compassionate.  But they can't overcome the plain fact that for all the work we've done and will continue to do to learn how to prolong life, there's been precious little (by comparison) given to how to manage the inevitable end.

And all of that philosophy aside, when it comes right down to it, I'm just a girl who wants her mother.  I keep getting hung up on all the things that I haven't gotten around to doing yet that now she'll never see.

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Catching up - two days

There's no subtle way to put it.  Yesterday the family assembled to say good bye.  May I just interject that this was a truly sucky way to meet my nephew's wife for the first time?

We got everyone.  Bruce and Kris, Bryan and Nikki, and Mike drove down from Syracuse/Rochester.  Bob drove up to Boston and picked up Erica, and Charlotte and I drove down.  It was a *very* full room.  It was a very quiet room when my contingent got there, but conversation picked up once we got people in the room who had stuff to catch up on.  Thursday mom had said at one point that she wanted cookies, so Friday morning I baked two pans of shortbread - whenever I was baking she always asked for shortbread.  And phooey to people who always look at me funny because of my need to perpetually have four pounds of butter on hand.  She actually even ate two pieces.

When it got to be too much, she kicked us out.  Well, she kicked everyone else out.  I didn't feel any need to acquiese, and I doubt she was surprised.  We've understood each other for a long time now - during my wedding planning she started to offer and opinion, and then said "I'll shut up now."  My comment: "Of course I'm interested - I want to know what you think.  Of course, I'll do as I please afterwards, but I want to hear it."  Her reply: "Of course - why would you change now?"

That was rough.  I'm not sure I've ever seen my brother cry before.  But he was seeing his mother for the very last time ever.  It occurred to me though, in some ways, Bruce got it easier.  He *knew* it was goodbye.  They were heading out, driving home, and that was that.  He could say goodbye.  Me?  I just don't know.  Because I'm going back the next day.  So do I say "goodbye" tonight?  And then go back and see her the next day?

But I resisted being thrown out and stayed with dad.  Somewhere after 8:00 they moved her to the 11th floor, which is oncology.  Moving her was quite the production, with her needing the high flow oxygen.  We got her settled in, and headed to our respective homes.  I could stay at dad's, but I wanted my own bed.

This morning I slept in some - I'm tired.  I'm sleeping badly, eating poorly, and just wrung out.  So I set the alarm for 8:00, and got some sleep.  With Bob in NJ, I was actually able to sleep through the night.  I got a load of laundry washed, threw it in the dryer, started the dishwasher and headed down.  I was shocked, and frankly not happy to see that they discontinued all oxygen this morning.  But it's not my decision.  I don't get a vote.  And she was much more comfortable.  They have her lightly sedated also.  But she was happier, and doing better than I would have hoped.  The oncologist seemed frankly shocked at how well she was doing without oxygen.  A priest from St. Joseph's stopped by and gave her communion.  I'm hoping that he stopped and talked to dad on the way out - I could hear him sobbing in the hallway.

Over the course of the day, Isabeau was snapping pictures of Charlotte at Mudthaw, and I showed them to mom as they came in.

She told me that the happiest day of her life was the day Charlotte was born.

Dad went home about 4:30.  I left about 5:30.  As the day went on she got more and more confused, and less and less able to articulate herself.  To be honest, I wouldn't be surprised if she doesn't make it through the night.

I called Bruce when I got home and let him know all of that.


I gave her a kiss.  I told her I love her.  I said good night.  We'll see what the morning brings.

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So, today my mother said to me "You're keeping track of all of this aren't you?  I want you to - for Bruce."  And now I guess I'm going to indulge in some of that "anger" part of grieving, because REALLY?  His kids are grown, graduated, and gone.  He's the one who owns his business, has a house in Florida, and is going to sell to his partner and retire "when he's ready."  My daughter is eight, I'm wondering how we're going to keep a roof over our heads until someone finds work, and will never, ever be able to retire.  But let's worry about Bruce.

But I said that I would.  So let me see if I can sort out this timeline here where I can find it again.

March 4, Charlotte and I went down to spend the day with mom and dad to celebrate their 50th wedding anniversary.  Mom looked awful - she had just fallen a couple of days prior, and had bruised herself from head to toe.  She was having a hard time getting around, and ended up going to lie down.  Dad and I talked about it - apparently she'd been falling, but he didn't feel like her doctor was being responsive to the problems she was having.  In a moment of pure priescence he said "I don't want to have her taken to the hospital, because I'm afraid if she goes, she'll never come back."

A few days after that she called about... damn.  I don't remember.  It confused me, because whatever it was she wasn't making a lot of sense.  A few days after that she called with her usual "I havne't talked to you in so long - it's like your phone is broken."  When I pointed out that we had just talked a few days earlier she got snippy, and I had to draw her out to talk.  I don't recall about what - we just chatted.  She'd finally been to the doctor, and they got a bad EKG.  Sent it to her cardiologist, and she was going to have an appointment sooner than her regurlarly scheduled echo.  It worried me that she didn't remember the previous conversation.  A couple of days after that she had a perfectly normal EKG at the cardiologist, but they moved up her echo appointment.  I made a point to send pictures of the snowstorm, and Charlotte's snowman, because I know how much she loves getting pictures of Charlotte.

Dad called on the 16th.  Mom couldn't walk down the hall to the living room - she was too weak.  We talked ourselves into having her transported to the hospital.  That evening things were looking up - it turned out that her potassium was critically low, which would cause all of the symptoms she'd been having.  It looked like we had an answer.  The CT scan of her brain came back normal, so no stroke.  That was Thursday.

On Friday, I gave her a call.  She usually wants us all to leave her alone when she's in the hospital, but she'd been so unhappy that I hadn't been calling enough that I figured I ought to.  It was a short call, since neither of us really had anything to talk about.  Later that night dad called and said that they were going to do a CT scan of her chest.  The x-ray looked odd, and they wanted a better picture.  On Saturday they told us that the scan showed masses in her lung, and nodules on her liver.  They still needed to do a biopsy, but it was likely fully metastisized lung cancer.  I can spell metastisized without spell check.  That pretty much sums things up right now.

I couldn't go down Monday morning.  Because the previous week I'd finally gotten around to opening the letter from DMV about my car registration, and discovered that it was my driver's license that had expired in February.  And I hadn't felt like going to AAA to do the renewal on Thursday or Friday, and you need a valid photo ID to enter the hospital.  So Monday morning I went and renewed my license, and after school the three of us went down to visit.  Charlotte had made her a drawing of a rainbow that said "Get well Grandma."

I keep trying to talk to Charlotte about it, but I can't do it without crying.  I don't want to frighten her, but I also want her to understand - Grandma shouldn't just disappear.

Tuesday we skipped youth combat practice, and Charlotte and I went back down after the book fair at school - my brother had driven down earlier.  I told her I was going, and asked if she wanted to come - she did.  As we left, mom told me "Don't come back tomorrow - I want you to get back to normal."  So Wednesday I stayed home.  Wednesday the results of the biopsy came in: small cell lung cancer.  I did a little reading, and only 10-15% of lung cancers are small cell, and it's almost invariably related to smoking.  It's incredibly aggressive and fast.  So much so that it doesn't even really have "stages," it has "limited stage" and "extensive stage," they almost never find it until it's extensive, and once it's there you're pretty much done.  It's very vulnerable to chemo, but there's apparently been very little work done on this particular cancer, so the chemo for small stage lung cancer is the chemo of twenty years ago.  So it's rough, and the cancer is pretty much guaranteed to come back.

She told me to stay home on Wednesday, but hadn't said anything about Thursday, so I headed down this morning.  Charlotte decided not to come with me today.  She didn't want to be up late tonight because she has to be up early on Friday for STEM club.  I figured I would hang out until the oncologist came by to talk about options, and then head home.  Well, she didn't show up until 4:00pm, and then there was a HUGE language barrier.  I don't know if she's a good doctor or not, but she's a *terrible* choice for someone to explain treatment options to a family.  Honestly, the only reason I had any idea what she was blathering about was because of the time I'd spent online.  Also - don't spend five minutes deliniating all the things you *could* do, IF it were non-small cell cancer.  That's just mean.

The gist of it is that the two options are 1. chemo, and 2. nothing.  And by the way, mom isn't strong enough for chemo.  Not that it matters - the thought of it clearly horrified her.  Prognosis is four months, give or take three months.  She's very lucid.  She's confused about where she is and how long she's been there, but she conveyed very clearly to both doctors that she feels that for her age it's not something she wants.  She says that she's had a good life, a good family, her kids are grown and settled, and that she just wants to be done.

I can't even type that without crying.

Obviously, what I want is different from what she wants, but I don't get a vote.  Basically, all that is keeping her alive right now is the high flow oxygen, and she hates that setup - it looks horribly uncomfortable, and she can't ever take it off.  I gather that under the aegis of "palliative care" in the interest of making her comfortable, at some point they can remove that and put her on an oxygen mask.  But that won't be enough, and once that change is made, it will probably be a matter of hours.

I have a whole bunch of thoughts about end of life, and how true it is that we have kinder options for our pets than our family, but I can't face that right now.

Tomorrow Bruce and all the family are driving down to say good bye.  I don't know if he'll come back after that.  Probably not.  I feel like after I left this afternoon mom and dad may have decided that once all the family has visited, that's it.  I've told Bob to let Erica know that if she wants to see Grandma, I need to be able to say "She's coming down on [date,]" and that date had better be in the next few days.  That's all I can do.

I called Bruce tonight and asked them to lean on both mom and dad HARD to hang on until her birth certificate (or word that there isn't one) arrives.  She's been wending her way through the system for *years* to get some information on her birth family - to know where she came from.  Years of dealing with Catholic Charities, and then the Lutherans when CC got out of the adoption business and turned it over; with the county court, the department of health, etc.  We're at the last step - she got the court order authorizing the department of health to release the certificate, and - I believe - requested it.  It could literally come any day - and I bet my nephew the lawyer could help speed it along.  I just...I would hate for her to die with that undone.  She may listen to him.

When I was little, I used to flip over the magazines in the bathroom to show the American Cancer Society ads they ran in the '70s that showed cancerous lungs because I wanted my parents to stop smoking so badly.

I thought we would have more time.  Two weeks ago we had forever.

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It wouldn't hurt so much if I didn't have Charlotte.  Partly because I'm worried that she won't remember mom.  But mostly because we're starting to do things together like I remember doing with mom.  And now I won't be able to share that with her.  We haven't read "Heidi" yet.  She's only just learning to ride a bicycle.  There's all the books that were mom's, that she gave to me to read, that I'm only just beginning to take out.  She'll never got to tell Grandma that she's reading *her* books.

I really thought we'd have longer.

Mar. 20th, 2017

I haven't been posting here much.  Partly because I've had nothing good to talk about, but a lot of it is that it's stopped being a conversation as people have stepped away.  Tonight I'm okay with that.  I need someplace to talk to myself.

She kept saying "When I get home."  I wonder if she was lying to me, or to herself?

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The mouths of babes...

Charlotte asked me tonight "Why are you so sad?"  Not wanting to come right out and say "Because Grandma is probably dying," I said "Because I wish I could have my mommy forever."

She touched my face, said "No one can have their mommy forever," and gave me a hug.

Meaningless progress

Yeah, I'm crappy at posting these days.  Part of it is playing over on Facebook, part of it is my usual disorganization, part of it is just that most of life really does suck right now, and the options are narrowing all the time.  C'est la vie.

In an effort to break through the ennui, I've been moving myself forward on getting the clutter picked up in the sewing room, and get projects on the looms.  The first step was to get a warp on the rigid heddle, because that one is by far and away the most infuriating.  I think I'm finally getting the hang of warping it for three heddles though - as with everything, practice is the key.  It took forever.  I got the warp wound on, and then other things intervened.  Then I got all the heddles warped, checked for errors, and pretty much re-warped the whole damn thing.  Infuriating.  But I think I finally got it right, and did a test pattern in scrap yarn to check.  Once it looked good, I set it on the stand and put it aside.  Because I couldn't pick up the assorted clutter without breaking down the table, and I couldn't break down the table until the loom was off it.  Step one, completed.



Step 2: pick up the clutter.  I did some desultory picking up and putting away yesterday, and continued today.  Then I ran into what I think of as "the problem corner."  It's the corner that catches... "stuff."  Mending.  Unfinished projects.  Things that I just don't know where to put.  It's a terrible corner.  So I started pushing things around again, and yet again moving around the stuff to be repaired.  Then I had the brilliant flash of the obvious: instead of pushing things around to try to clean up the room so that I can do the mending, how about doing the mending to get it out of the room so I can clean it up?

Yeah, I know.  I'm dense sometimes.

So this afternoon, in between playing with the pangolin doodle on Google (for the record, no way, no how could I get three stars on the third and fourth levels) I hemmed Charlotte's jeans, re-glued her ladybug mask, bound the raw edges on the padded bags for the tent finials, and patched the big holes in my dad's sea bag.  All those things are no longer in the room, which is a drop in the ocean, but still a good start.  This evening I didn't feel like being up there, so I brought down more mending.  A pair of Charlotte's slippers, a pair of her earmuffs, and a scarf of hers have all been mended, and are also now out of the mix.  It's something.  We'll see what tomorrow brings.  Baby steps.

For the record...

Christmas eve on a Saturday is the suckiest time to have a dental emergency.  Sitting around waiting for it to be 8:00 so that I can call my dentist.  Pretty sure that they're closed today - they're only open two Saturdays a month, and I'll bet money Christmas eve *isn't* on the list.  But if I can get the person on call to call in some antibiotics for me, I *might* make it to Monday when hopefully they'll see me.

Because I'm pretty sure that there's an abscess under that old crown.