I have never been so glad to be home. Although unfortunately, I don't get to stay here very long - I have to turn around and go to the Virginia Natural Resources Leadership Institute tomorrow morning through Friday night. Then Sunday morning Bob is leaving for a conference in DC and Laurel and I are going to take advantage of the free hotel room and go with him for the first couple days so I can take her for Feldenkrais therapy. Monday night she and I are going to come home and I get to single-parent it until Thursday night when Bob takes the train back. I am so tired already, I just want it to be next Thursday night.
Anyway, it was a hellish weekend. The spotting started on Saturday, which unfortunately was a day that Laurel was completely miserable (gas as usual, we assume), scuttling our plans to take her to the aviary. She was screaming, and we both had screaming headaches. Mom, meanwhile, was supposed to go to lunch with us, but she said she'd had a piece of toast and wasn't hungry. During the course of the day, she ate a bowl of ice cream, a cookie, and two big pieces of pound cake (over 1/4 of a ring cake). She was also not hungry for dinner (gee, what a surprise). Bob tried to do something with her checkbook, which hadn't been reconciled since Feb. 2004, but even in Feb. 2004 he found that she had entered her pension and Social Security twice and her tax refund not at all. There were all sorts of numbers that didn't seem to relate in any way to anything and he finally just gave up - but not until 11:30, by which time he was in way too foul a mood to celebrate New Year's. We decided to defer the wine (that we'd bought because it sounded tastier than champagne) till the next day.
On Sunday, AF showed, and Mom said she was really feeling ill and spent most of the day in bed (although somewhere along the line, more pound cake and cookies disappeared). Bob and I went ahead with making my family's traditional "Christmas Eve" dinner, which is homemade rolls, beef fondue and chef's salad. Mom emerged, took a half dozen pieces of beef, a couple of rolls, and a serving of salad, but only made it as far as the beef and rolls before she started heaving. She spent the next two hours shuttling between her bedroom and the bathroom. Laurel, who had been good all day, decided to throw a tantrum when we put her down to eat. I looked at my husband over our screaming child with the sounds of retching in the background and asked, "Are we having fun yet?"
Mom still seemed miserable when we left at midnight, but between then and 11 AM on Monday, all but two of the 15 or so dinner rolls we'd left behind disappeared (considering that we'd been planning on leftovers to take home, we were pissed as well as dismayed at her diet). She was doing better on Monday though and managed a sandwich with leftover chef's salad parts. So we did the usual last-minute chores and shopping, left later than we meant to (also as usual), and got home a little after 11 last night. I had mostly been feeling better and better the further we got away, and felt a profound sense of relief at being home. But as I was going to the bathroom before bed, I found myself staring at the clots on the tissue and wondering if any of the embies were in there. I said something to Bob, and he said, "Yeah, and we've got those pictures of them, and I don't think we should throw them away but I don't know what to do with them." I just started bawling.
BTW, I'm pretty sure that the heaving thing wasn't some random bug - we see some form of retching almost every visit the first time or two we take her out to dinner. We wonder if it somehow follows on eating protein after not having any? She won't admit she does it to her doctor (she won't admit she does ANYTHING to her doctor) so we're just guessing. Sunday night was the worst I've seen yet, though. Her memory was the worst yet too. I didn't feel like she could remember anything I told her. By Monday she seemed like she might even have forgotten the 2 1/2 hours we spent with the woman from the Dept. of Aging. And Friday morning, I took her to the same optometrist that Marie took her to in July (with her cataracts and macular degeneration, the optometrist wants to see her frequently) and she swore she'd never been there before in her life. She also said as we were waiting, "I don't even understand why we're here," although I had talked to her about it both half an hour previously and the night before and she'd seemed to understand at the time and had gone on and on about how she'd probably inherited the macular degeneration from her mother.
And meanwhile of course there I am having a miscarriage, and I can't even tell her because I've never told her I was TTCing because she's a twit about that sort of thing. (My sister didn't even tell her about her second child until after he was born.) I think it's more than likely that if I did tell her I was m/c'ing she would say it was for the best. Then I feel angry because here I am worrying myself sick over this woman who can't (and never has been able to) support me when I need it. Bob and I also feel angry with her because some of this stuff, like eating a bunch of pound cake and going right to bed and then waking up feeling icky, seems like she just ought to have more sense than that. I feel like I have two children in my life, and Laurel's the easier one to deal with. I guess maybe it's part of the disease (it seems like she really must have Alzheimer's), but I'm having trouble wrapping my head around it.
So here I am, tired and angry and sad, and not feeling at all ready to launch myself up to Northern Virginia for three days of sleep deprivation. Although VNRLI will be very upbeat (but am I ready to deal with upbeat?) and a total change of pace. I'm trying to think about the girl we'll adopt as a bright point to hang onto. I'm planning to call my friend from church tonight, and Bob already got information from his friend at quartet. He's really excited and into it now, which I'm glad to see. I just need to move past the hideous miscarriage-mother-New Year's weekend from hell. Hopefully the quality of the New Year is no sign of the quality of the new year?
On the last leg of the sleep deprivation triathlon...
Just a little more than a day left in the
three-day single-parent event. I've been too tired to even post. VNRLI
went OK, although I felt like I was just sort of phoning it in,
especially the first day. The therapy once again took about a session
and a half for Laurel to settle, but then she did great stuff. When I
finally have time at home (not of course until after Bob gets back), I
really want to post a picture or two from the sessions. The heat didn't
work in the hotel room and we all slept like hell, though. Laurel's been
up late the last two nights, too, and she's been really horrible about
being put down. (She was apparently wonderful for the sitter yesterday,
but let out blood-curdling screams every time I put her on the floor
last night.) Meanwhile I am trying to catch up on most of two weeks'
worth of work and deal with the ongoing mother crisis. No, the Dept of
Aging was no help at all. Their waiting lists are too long (and not even
moving for a number of services) and all they could offer to us was a
list of individuals who provide services and a phone number for a
volunteer service. I called the volunteer service last Tuesday but they
still haven't found anything. My sister got the list of individuals but
none of them are near Mom. Meanwhile, someone she works with gave her a
brochure for another service, and she had a really promising initial
talk with them, but after they went out and met Mom they said that they
really couldn't work with her - although when pressed they said OK, they
could probably do shopping and kitty litter. But they were supposed to
get back to Marie on Monday, didn't, and haven't been returning her
calls. Marie tried to tell Mom that it was time to move, too many
services are refusing to work with her, but Mom just got very angry and
said that it was none of their business how she chooses to live and that
it was just going to have to be a problem. But Marie and I are trying to
figure out how to force the issue.
UH! I was going to type more but just got a call from our babysitter
begging me to come home early because her babysitter has the
stomach flu. So I have to run...
Sigh
I just want to throw a tantrum right now...
I just got an e-mail from Bob that his sister has decided that we all
need to go to Chicago for the dreaded family vacation, because she can't
afford to fly anywhere (she lives in MN). Well, HELLO, a) I thought this
was supposed to be all three of us girls deciding this one b) I had said
we couldn't afford to fly either! Now here's Bob trying to figure out
how we can afford to fly to Chicago on top of also trying to go back to
San Francisco, keep doing Feldenkrais and speech therapy in VA, adopt
from China and pay for Laurel's new bedroom furniture. I just profoundly
don't want to shell out a pile of money for a family vacation that is
going to involve very little of either family or vacation. We'll see
them during the endless restaurant meals, which will mostly be spent
trying to keep the kids from bouncing off the walls, and then otherwise
they'll go their separate ways while we juggle Laurel's tube feedings
which will happen to fall in the small intervals between restaurants. I
wish so badly that I could tell Bob's family how I really feel about the
whole idea. I was already feeling close to having my head explode with
the whole Mom thing again. I don't know what we're going to do if
something doesn't break soon on the service front - but Marie now has a
Catholic nun actively avoiding her and the interfaith volunteer service
I spoke to last week told me this morning don't call us, we'll call you.
Meanwhile, although Marie and I had agreed that when we did finally move
Mom, it would be best to move Mom near her, places in CA are turning out
to be prohibitively expensive so I think I may wind up with her after
all.
UGH...on top of everything else, my daughter is wailing piteously on the floor right now, just as she's done every time I've tried to put her down the past two days...Bob thinks it's gas but I'm suspecting a new flavor of tantrum because she stops crying as soon as I pick her up...I would like to finish my dinner (which I've been eating bites of between this rant) before I go get her, anyway...but it doesn't do much for one's appetite!
Thanks for thinking about me!
The Catholic sister managed to find someone (at least temporarily, Marie said she wasn't sure how permanent it was) to shop, change kitty litter, and go over Mom's eye grid with her (she has this grid she's supposed to look at every day to make sure her macular degeneration hasn't changed to the wet form - if it has the grid will look warped and funny - and there will only be a two-week window to operate before Mom's vision is permanently ruined. We figure even looking at it once a week would be better than the never that she's doing it right now). Marie is now working on the power of attorney issue. She says that the last time she talked to Mom, Mom did agree that she couldn't stay in PA, and Marie has been taking this ball and running with it and looking at places for Mom to live in CA (she did find some that were cheaper than the original ones). The thing is, what Marie is looking at will still require some level of competency from Mom, so she will have to agree willingly (i.e. if we wait until she is declared incompetent, she's not going to one of these places). I'm not convinced that when the rubber hits the road that will happen (I think agreement in an abstract sort of way is really different from "Mom, here's a place in Oceanside"), or that she will be able to stay in one of these places for very long. But for now, Marie is dealing with that and my task is to try to identify a home for cat #2 (Marie is looking at places that will take one cat). Which is of course the one with the issues. I have a message in to a no-kill cat shelter in the Shenandoah Valley that a couple of people recommended to me.
Meanwhile, on the trip front, Bob hasn't talked to his sister yet. He brought it up last night and told me he wanted to talk his sister into going to D.C.. Which would certainly be cheaper for us than Chicago, but still I'm sure hundreds of dollars in hotel and restaurant costs. And at this point I'm also feeling very protective of my leave time, because if Marie is successful in getting Mom to move (however she pulls that off), I will definitely need to take some time off (at least a week) to go up to Pittsburgh and sort through stuff. Add in going to SF (hopefully two weeks) and saving time up for China and consider that I get 18 days off a year, and ACK. I told Bob that I was really not happy devoting time or money to this trip even if it was in D.C., and he didn't really respond, but looked trapped. I'm sure he feels caught between the two sides, but darnit!
I'm feeling tired and cranky today. Laurel has been in a rotten mood for several days now. We were supposed to get a day off yesterday, but the babysitter called off to go to her boyfriend's cousin's funeral (I understand, but I'm getting tired of having it taken for granted that I'll always understand. Last week she called off one day because her babysitter was sick and brought her kids two others - I'm still trying to find pieces of Laurel's toys. On the other hand, she's good with Laurel and Laurel obviously adores her [you should have seen the smile Laurel gave her on her first day back after Christmas]). Then this morning, we were going to run one of the errands that we had planned to run yesterday (stopping by a furniture store), but the babysitter forgot that Laurel didn't have school today so didn't come at 10 like she was supposed to. I called her at 10:30, but she couldn't get in till 12 (which is when I'm supposed to be at work!) so instead of getting in early after the furniture store like I thought I would, I got in half an hour late. To find an e-mail ripping me a new one for daring to tell this guy that it was against the rules to offer to sell someone on Freecycle a TV set (they had posted a "wanted" for a free one, complained when this guy tried to sell them one [publicly and not naming names] and as moderator I kind of felt it was my job to point out that, in fact, everything offered on Freecycle needs to be free, even if it's in response to a wanted).
Sorry to go on - I guess I'm just in a mood to match my daughter's at this point. It's not even bad news on the Mom front, it just feels very tenuous. Mostly I guess I just need a break!
[In response to a question about Laurel's seizures]
Funny you should ask - the seizure meds are a whole other issue that
pretty much hit crisis mode last week but has backed off some. I can't
remember where I left it with you guys, but basically, a couple of weeks
ago Bob had talked to the neuro's assistant and said hey, we haven't
seen any improvement from the last round of going up on the meds. And
the neuro's assistant said, well, we can go up some more. So we started
to go up from 2 tabs morning and night (4 all together) a half tab at a
time to 3 tabs 2x a day. The twitching and jerking just got worse and
worse till, by the time we hit 3 tabs at night in the middle of last
week, she was doing it every few minutes all day long (I can't tell you
how hard this was to watch). I put in a call to the nurse but also
decided to take matters in my own hands and back down to 2.5 2x a day.
That stopped the constant jerking, but she is still seizing every few
minutes for several hours every morning and a few random ones at night.
The nurse didn't call me back till Monday, was then supposed to talk to
a doc (the neuro's assistant is out for the next couple of weeks, and
heaven only knows where the original neuro got to - he never seems to be
in town anymore). I still haven't heard anything, so that would be
another thing I'll have to follow up on if I don't hear something
soon... 
I got the most astounding call from my sister this evening. She
told me that Mom had been complaining that her stomach was bothering her
for over a week (OK, nothing astounding about that). Marie suggested
that she see a doctor and offered to make an appt for her, starting off
listing the things it could be (ulcer, gallbladder, etc.) but Mom said,
"Oh, I think it's all in my head. I think I'm depressed."
!!!!!!!!!!!!!!!!!!! She talked about how lonely she was since her
neighbor who did the shopping moved and Marie said the same thing she's
always said given any opportunity like that, "You need to
move." But this time Mom actually agreed! And agreed to send a
check for a deposit on this place Marie found in Oceanside (looks really
nice: http://www.leisurecare.com/locations/community_new.php?comm_id=36€timg=5
).
Marie and I both know that there are still many, many steps to go before
we can say this is a done deal. The way Mom's been, there's no guarantee
she'll even remember agreeing to this tomorrow. (I'm supposed to call
her tomorrow night to see if she's still on board and if the check got
mailed.) Marie wants to move FAST and is talking about trying to get her
out there by March 1, but that of course will be subject to availability
(they told her they didn't have a waiting list for one-bedroom
apartments, but I'm not sure if that means they actually have one). I
think if that's the case I should probably do as Bob suggested and make
sure I get my butt up there for one last weekend before she moves - it
will be my last chance to see her in my childhood home. No doubt about
it, it's going to be sad and hard. I'm not sure Marie really appreciates
that, because she never lived in that house (she was 21 by the time we
moved to Pittsburgh and stayed behind in Minnesota), and because she's
not the one that Mom's going to move 2500 miles away from. Actually, now
that I'm thinking hard about it, I'm starting to tear up. But I TOTALLY
believe that it's what Mom needs to do. Both she and I need to suck it
up and say goodbye.
In any case, just the fact that she FINALLY admitted that she's
suffering from depression seems like a huge step to me. I'm so hoping
that this means we can finally start helping her. 
Breakthroughs...that was my wish for 2006, was breakthroughs...
I finally talked to the neuro's assistant today. We're going to go
down some more on the 2nd med (Topamax) that seemed to be making her
seizures worse as we went up, and then (in a week or so) we have to tell
them our decision - do we want the med that isn't known to address the
spikes on the EEG that Laurel has that don't correspond to anything
physical she does (Keppra - it's only been tested for partial seizures,
which are what we're trying to control right now) or the med (Lamictal)
that has a potentially fatal interaction with her original seizure med (Depakote)?
The assistant was already telling me what we were going to do to start
her on Lamictal and I was like, wait a minute here, maybe we'd rather
try the one that's less likely to kill her and see how she does. We do
suspect that one reason she's seemed more attentive the last few months
has been that Topamax might be helping to control the spikes. So we
figure if she starts seeming less attentive again, that might be a sign
that she's not getting some seizure control that she needs - but we
think that that's a better thing to risk first than the severe
life-threatening rash (chances are 1:50 for kids NOT taking Depakote and
even higher if taking it). We get to make some really fun decisions,
don't we? 
I have such a headache right now...
I got this e-mail from my supervisor telling me what I need to do for
our next Commission meeting on Feb. 2 (because she wants me to present
on our environmental program - they're doing a different program every
month - this might be clearer if you look at the website: http://www.tjpdc.org
), and it looks pretty extensive. I've been telling her for weeks that I
didn't think I had the time to do that this month, and my workload has
been growing ever deeper in the meantime, to the point that I now have
grant proposals due on Feb. 1, 3, and 6, a recycling action plan due by
Feb. 2, and a disability needs assessment report (we've been doing
surveys for months now, but we've gotten a bunch in the last few days
that I don't have entered, let alone anything written) that has a draft
that needs to be done several days before the Disability Services Board
meeting on Feb. 13 and the final by the 28th. I just wrote her back and
reiterated that I really really had a lot of work to do already
(especially given that I only work 30 hours/week!), said that something
needed to go, and that I couldn't possibly give that more than minimal
attention right now and I'm sure I could do a much better job at a later
date. But I'm kind of expecting her to listen to that like Bob listened
to me about the trip to DC (he told his sister to go ahead and plan on
it).
On another board I'm on, people are discussing their midlife crises,
buying sportscars and getting tattoos and what-have-you...I'm about to
have a just plain crisis and run away to a nice tropical island...
As predicted, my boss would not let me out of it. I am SO working this weekend. And wondering if we should cancel our plans to see a movie on Thursday - Harry Potter, which is what we wanted to see, is gone anyway and I'm having a hard time wanting to take the time to see something else.
We saw the neurosurgeon about the baclofen pump this morning.
We were really nervous going into it because we figured that to a surgeon, everyone looks like something to slice into. (Heaven knows Laurel's orthopedist tends that way.) But he said that he was on the same page as us, that it's something to be cautious about, it's a big commitment, and he doesn't see that she's in serious need of it at this time. The main point of it, ultimately, would be if it seemed to be needed to prevent her from having to have more orthopedic surgery, but he agreed that it would probably not help her function that much and might even impair it somewhat (to the extent she's learned to use her tone to do things), although he did say that the dosage is very adjustable. But he said that her hips and knees look good, she sits well (one common reason to get a pump is for kids who are too stiff to even sit), and as long as her range of motion stays OK with therapy, there is no urgent need for her to have the pump. We are really relieved at how the consult went, will keep the pump in mind if she takes a turn for the worse (but we're hoping that with Feldenkrais she will only get better), and are happy to cross "baclofen pump" off our list of things to worry about right now.
Meanwhile, I'm also happy to report that since we started bringing the Topamax dosage down, Laurel's seizures seem to be getting a lot better! This morning at least they were at the point that if it were a choice between those few twitches and Lamictal, we'd be inclined to go with the twitches. But we'll try the Keppra - that looks to be pretty safe...
Well! I'm not having the day I expected. I'm driving to Pittsburgh...
My mom called at 8:10 this morning (knew that had to be a bad sign
right there, Mom is not a morning person either) wanting to know if I'd
come get the cats because she's too sick to care of them. My obvious
response was, "The heck with the cats, put out a bunch of dried
food and a bowl of water and they'll be fine for days. Get yourself to
the doctor!!" But she WILL NOT go. She sounds horrible - shaky and
weak and wheezing with this horrible whistle, and she says she's having
chills. I'm thinking it's either the flu or pneumonia (or both) and
given her age and condition, there's a fair chance it could kill her if
not treated. She says she doesn't care about that, just wants someone to
take care of the cats, but of course Marie and I feel differently. (I
called Marie - at 5:30 her time, I felt so bad, but what are you going
to do?) Marie called Mom and didn't have any better luck getting her to
go the doctor than I did, and agrees with me that it looks like the only
thing for it is to go up there and take her to the ER. (Mom said she
wouldn't go, but Marie told her I wouldn't do anything about the cats if
she didn't.) SO - I need to send off a couple of e-mails, finish
packing, stop by my office and get the heck out of Dodge. UGGGHHHH, I am
so stressed right now! 
I'm back...
I wanted to post from Pittsburgh, but Mom's computer can't find its
hard drive and CD drive (uh oh). After a half hour of literally jumping
up and down and screaming to get her to go (biggest tantrum I've had in
close to 40 years, I bet 
) and 7 1/2 fun-filled hours at the ER, it turns out Mom has pneumonia.
Not bad enough to admit her, but Marie will be calling the next couple
evenings to make sure she takes her antibiotics (thank goodness for
modern antibiotics that you only have to take once a day!).
Marie got the check from Mom for the deposit on the place in Oceanside and has her all signed up for an apartment. Marie has to get Mom's doctor to fill out some paperwork and the place in Oceanside will call to give her the same sort of memory test that the Dept. of Aging gave her (which she actually did OK on - they're looking for big-picture stuff, like does she know where she lives). Assuming all that works out, she's going to be moving President's Day week. I just moved Laurel's therapy weekend to the weekend after (we had scheduled for Sunday and Monday of President's Day weekend) so I can go help. Meanwhile, I worked as hard as I could on damage control and getting her set as well as she could be till then. She has someone who'll be doing her shopping for the next two weeks, but that's it.
I just hope Mom doesn't come down with what I'm getting, which I'm pretty sure is what Bob and Laurel (especially Laurel, she got a lot sicker than Bob) have had - digestive tract problems followed by a cold. Perfect, just what I needed with two proposals, a "Recycling Action Plan" and a presentation due this week - but still better me than her, especially on top of the pneumonia.
Thanks for thinking of us! More thoughts and prayers that Mom gets well, things go smoothly and a month from now, she is safely settled in her new home would be much appreciated too!