We're from the government and we're here to help...

First my mom is doing much better -they made her work hard today but still let her have dinner in bed. Caleb is thinking of signing up for classes next semester. The 4 year old popped his own microwave popcorn (not a parent approved activity). Fine. This blog is not about this. This is a true story I share in honor of the Senate being about to pass a huge health care overhaul. Last April when Caleb's shunt first failed and the CSF was building up in his abdomen and he was in excruciating pain and at serious risk for several fairly fatal things the local hospital needed to move him to a "higher level of care" so they arranged transport. To no one's comprehension the ambulance had to come from the other hospital (1 hour away). I think they got lost (not a bad guess since I know they got lost going back) but over 2 hours later they arrived. We then proceeded to wait for another hour plus while they tried to get someone to sign a form attesting to Caleb being bed ridden permanently. In the end the local guys had to get a case manager from her dinner to explain to the transport guys that a) Caleb was not a Medicare/Medicaid patient and b) his was an emergency transport to "higher care". It turns out these were the magic words because Medicare is very particular about transport to a lower care facility. So while he got more and more critical various people were completely paralyzed by federal rules -I would have vastly preferred a death panel at that point. Please.

I was reminded of all this recently with my mother's (with the spinal injury) transfer to a "lower care facility". Four different people explained that we could try moving her ourselves but we couldn't count on Medicare reimbursing us if we had it done by a medical wheelchair transport service. And everytime when they told me it would cost $80 (you did not miss any zeroes, there was only one) I said fine, I'll sell her silver. So while Medicare did not apparently blink at MRIs galore, nor did doctors hesitate to order them, this less-than-a-night-out caused great concern and a willingness to compromise care. I can only guess that other obviously middle class folks actually complain about spending $80 to get their family member where they need to be and feel only Medicare should pay. And I still have nightmares about that ambulance with Calebif he had been a Medicare patient. So here you have everything I look forward to in the federal government's cost saving efforts and my faith in their ability to improve things.

Feel free to pass this around!

Almost 9 months ago but he is still practicing stomping. While he enters his dramatic phase (he was going to "die -ie" because it was the "wong" pizza tonight) -or should I say perfects, it I am entering my where-did-all-my-brain-cells-go-phase. My mom, the beloved grandma who knows everything, has been transferred to a rehab facility that seems very nice and seems to mean business. I'm not sure if she was joking or not when she said she was happy with the program they were starting her on except for the insufficient time for naps. I am guilt ridden because I only plan to go in once a day and to take advantage of my free time to - no wait a minute. I have a four year old. I forgot. I actually do momentarily forget. And a part time (limited of course) job and a very messy house and a whole lot of laundry... Maybe there is a reason I feel this tired. But I didn't seem to when Caleb was in the hospital -or this stupid. Maybe I am forgetting. All I know is this is my mother and this is different. I know she is going to die - I just don't know when. My children on the other hand I have no such knowledge pertaining to such events, certainly not in my lifetime. I was often fearful when Caleb was having all those surgeries but, well it was different, scarier but less of a personal private weight. This mortality thing getting hold of one's parents on the other hand... Well it nevers seems so unexpected as in one's own life. Like gray hairs and wrinkles and extra weight. It only seems extraordinary when I see it on me!

It is in fact practically an island that my mom lives on. Present tense is so important. Even though she is still in the hospital, I keep reminding her the plan is to first get her back here and then home again (silently adding, whenever someone can be there with her). The pain is under control but her spine is fractured and they have made her a brace -if we could paint it silver she'd look like a medieval Empress. And the plan may (or may not) be to discharge her to a rehab facility near the hospital for 1-2 weeks. Or maybe a not-a-nursing-home with less rehab somehwere else (we have a list of 6 for you viewing pleasure). The one I recognize on the list is very nearby and most defnitely a nursing home for some. And either any way we would have to get her there. Now that surprised even me. Here, she can't twist or move the wrong way so just get her into the car... or there is a "wheelchair taxi service" that may (or may not) be covered by medicare. The taking 4 days to tell us the hospital pharmacy didn't carry one of her medicines (she is only on 2 that matter) didn't surprise me at all. Been there done that.

She would clearly rather be on her island. She said she was dragging us all down -and I said no -she is the anchor that keeps us all from drifting out to sea. She always has been. She needs to hold on to us just a little longer.

I don't seem to have alot of pictures of my mom's in September -but there was this after a hurricane 3 years ago. She sailed that boat alone not that many years before but the center board kept falling out. Really. Sometime bernie would dive for it if we thought it went missing around the dock. Now mom is sort of like this in the hospital. They are as well run as ever. Today was spent waiting for tests that were "DCed" by one doctor and reordered by another. And then the guy I thought was the competent one ordered two tests done together that can't be done together. It hadn't made sense to me either but I kept my mouth shut (oddly enough). The radiology department didn't though and had to explain to the nurse (who explained to the doctor) that they would actually have to wait 24 hours between tests. Meanwhile no food or drink -and she just wanted her coffee!

Now she has had her coffee and more pain meds and is "resting comfortably" but we still have no idea what comes next. A hospital bed at home at the very least. I wanted to find her something interesting to read but the only news magazine in the gift store had a picture of an electrical cord and said "PULLING THE PLUG ON GRANDMA". I didn't get it. On the other hand I couldn't resist telling her about it. There are no plugs to pull now anyway.

gray gray day

Just a news note. After being up with my mom at 4:30 because she needed help moving we finally called the rescue squad at 6:30 (AM). So Bernie is going in now and I am home with a sleeping Jesse to try and "rest" before lecturing tonight. It's not really very interesting. 91 year old woman recovering too slowly from a fall -definitely not drama-in-real-life material. Except that she is my mother and I am much too young to do without my mother. My gray hairs might fool you (if I hadn't dyed them) but I am. And I know it doesn't look like an earth shaking tragedy but I assure you it is. I usually can philosophize about the really big stuff but it is the "little" stuff -the things we certainly could see coming and that all our neighbors will or have had too- those things befuddle me and there seems no comfort. At least not at 6:30 (AM) on an unopened morning.

This is the sun setting in front of my mother's house and it is pretty much the view from her bedroom. That is why she would rather live at home. Instead she is with us, curled up on her side, dreading every movement, unable to do much at all. She still manages to be picky about her toast and coffee, to laugh at Jesse, to smile at me, to apologize about the indignities, and to not get too upset with Nancy Pelosi (she does say the narcotics help with that).
Somehow this mom thing has been so much harder than I expected. Its not the laundry, or the running and fetching, or trying to get hold of the doctor -I expected that. It's the grief. I do not burst into tears at everything but I want to. When I do occasionally burst I have to do so away from my mom. I'm not my usual stoic self (if you don't know me the whooshing sound was my friends and loved ones running for cover). My mom has never cried much. Nor has she approved of crying much, or whining, or cutting your spaghetti. So when she said whe wanted to die this morning- as matter of factly as possible she didn't appreciate my tears or my vehemence in telling her it was not acceptable at this time. If her lungs, or heart were going, if she had cancer, -alright. But this she is just going to have to get over. Jesse isn't old enough to understand. I am not old enough to understand. Well, writing has helped -I know what to make for dinner -we'll have spaghetti.

This picture has nothing to do with what I wanted to say today but I like the story it tells -all you have to know to fill in the caption is that the track over the roof and down the windshield of the car was put there by the yellow sled in the hands of the perpetrator.
Snowiness and that day seem a far far distant memory today. Now I am fighting my way through all Caleb's bills (it took 4 months but I just got the neurosurgeon's grand total) and trying to be cheery and encouraging seeing my mom in more pain than I have ever seen her in before. Every movement is painful and that means they aren't very quick and that means she can't get where she need to go in time all the time and that means she is embarassed and I am doing alot of laundry as cheerfully as possible. See me whistle while I work... And because she is trying not to complain about life she does complain about the bread my husband got (bad German pumpernickel buying man, bad) or politics or the medicine we try to get her to take or... herself. She is ashamed of herself. I inherited this tendency. The sicker I am the more I apologize -mom always said that was how she could tell when I was really sick. So I guess she is not faking it. But it did get us to go get her the better bread.
And by the way -you know who comes in and keeps grandma company and gets her lunch when I go out? Caleb, of course. And who reads to Jesse when I was too busy? Grandma of course -well all the time, -but when the codeine kicks in! So it is ok, really. (And Wegman's does have the best Napoleons)
I'm think of adding cooking tips.

Morning

It is morning. Caleb's headache is better, mom's pain is worse. She says her condition is depressing -you mean the getting old and your body is falling apart condition? I helpfully ask. Yes. That's the one. Caleb started out that way though so I am not so sympathetic this morning. Also I can only go in so many directions at once so right now I am just going to get the oatmeal done.

Another cat that is gone. We'd made him an outdoor cat after he started expressing his disapproval of Jesse by... no even on a semi ananymous blog I can't go into detail but when the vet stopped laughing she said it was time to banish him from the house. He made it through the first winter but last winter he disappeared. I thought of him when my mom said she felt like a wounded animal and just wanted to go find some where quiet to let her wounds heal (or die I thought) -but no. We (by which I mean the rescue squad) dragged her to the ER where 6 hours later they said her fall had only bruised her -probably. It is possible some of those cracks in her spine are new but most of them are not. She gracioulsy thanked the doctor for telling her his findings, "eventually" -he had almost made it out the door (aka, flimsily curtained opening) when this last word sort of reached out and popped him. My mom may not have good balance but her timing is great. We trundled her back home -but first we stopped by Wegman's since she had never been in one before. So there we were. Mom and wheelchair, Caleb and crutches, Jesse in a cart and me and my sweetie. It was kinda like a date night.
And now, with my sweetie gone on a work trip (they are testing something with balloons, really) , my mom moving as little as possible and me wigging out on some student when I couldn't remember a simple way to make a nice example of confounding I come home and Caleb tells me his head hurts. It has been hurting for hours. And immediately I think that this time I really will lose my mind. Or not. He did admit then that he had forgotten to drink much today. I made him drink and called my prayer partner- she asked if there were any flu symptoms (wisely I have an RN prayer partner) -that would be good. H1N1 would be way better. That's where I am right now, hoping it's just swine flu. Of course there is the very real chance it is just a headache. After all, mom is fine, I found my necklace in the hospital parking lot today only a little run over, I was not at all confused with one student -it's all good (evetually)

falling

This cat is gone but not from falling. She was the best cat so of course she died first. If she had fallen -at least from this she would have landed on her feet. 91 year olds do not land on their feet. Even from no height at all. My mom fell today trying to sit down at the table. The 4 yr old tried to help her up. He went and got a napkin to do this -we do not know why. Eventually my sweetheart (who I fell in love with yesterday, last counting) and the grandson with mutton chops were able to help her up. Then I gave her ibuprofen and the sweetheart offered her wine or tramadol -she went for the wine, and he put on some loud Italian opera and she went back to bed and the littlest took her "Horton Hears a Who" to read to him.
Short pause to check the shelf placement of my latest home-improvement project (which I now pay my children to do) and stop to dance to Guy Clark's rendition of "Homegrown Tomatoes" (find on YouTube), -then my guitar background music, working out the chords. Oh the pauses to dance -that's why I keep falling.

09-09-09 (I like it I admit)

This is a sad picture because it is several years old and I have no morning glories today. They just didn't make it. I have no idea why. That's not like heavenly blues. The moon vines did make it but they look lonely and on such a gray day I wasn't at all surprised they closed as soon as the day began. It is what they always do. It is their nature but today one could hardly blame them. My mother spent the day feeling guilty for not spending more money on our teeth when we were younger (she tended to go for European trips over orthodontia). I told her that was discouraging. I can (just barely) handle the thought of my body falling further apart but not that besides still always wanting to impress the guys I will also never escape mothering guilt. Maybe Alzheimers is not as bad as we imagine. I mean it would be rough on everyone else but how could I worry over what I did or didn't do if I don't remember it? Or would I worry even more then? Did I mention it was gray all day? Or maybe it was sunny but I was staring at the computer trying to make a simple program work -who knows. It was gray by the time I looked up and I realized I had no friends and I was not so cute anymore, and I am pushing 50 (as hard as I can), and the house is untidy and nothing is quite where it should be and... if the sun comes out tomorrow I will be as giddy as ever all over again. It's embarrassing at my age.

sandwiches

Above is a picture of what to expect if you are a late in life baby with a late in life baby. Who says you can't have it all? I asked my mom other day if there was some age at which when you saw a young man you didn't... I didn't get any farther before she answered, "I don't know honey. I'm only 91." By the by, I was going to say, "...wonder if he thinks you're cute?" but I don't suppose it would have changed the answer.
We took her to see the Fireworks and Fountains show at Longwood Gardens this weekend. The whole thing is set to music -in this case music by Khachuriansomething. I figured it was a better choice of my mom than the show set to the music of Abba. As it turned out she said she had never liked Khachuwhatever but didn't want to mention it before hand because I was so pleased with myself for not booking the other one. She did trust me that she would prefer it to whoever Abba was. She only confessed to her previous dislike of what's his name after the show because she had enjoyed it so much. And if we just hadn't been so self-congratulatory about a job well done on the way home the next day maybe we wouldn't have had to all (by which I mean me, my husband, my mom, my youngest, and my sister (all mine you notice)) ride home in the rental car while the van enjoyed a trip on the back of a flat bed truck having fatally overheated about 10 minutes into the trip home. Still we did get to meet a lot of nice people at the WaWa's, several of whom offered to give us rides, and a staff who stored the luggage we got out of the van (and remembering the car seat AND the wheelchair) while we ate at a cute little pizza place (plug for Bravos Pizza in whatever that place was) and waited for my old college friend in Delaware to pick us up so we could get a rental from the airport because it was Labor Day and all the other car rental places were closed (and every now and then college daughter would call about her temporary crown and/or multivariate calculus).

Maybe.

And who says Yankees aren't helpful to strangers? Maybe my mom will even leave the third syllable off now.

Maybe.

Privacy

Today's topic is privacy. I was listeneing to a healthcare discussion panel (I was driving and my darling had left the radio tuned to C-span) and privacy was the subtopic. And I had a kind of post traumatic stress flash back. When the one pictured above in the orange pants was 5 he had to be evaluated by the local child developement experts. Now, you should know that long before Hugh Laurie was on House I subscribed to the same myth promulgated there that given enough information -especially the kind you are hesitant to share - everything will fall into place and the doctors will have some kind of epiphany and simply know all they need to know to fix everything. And I really wanted things fixed. So when the polite young woman asked if there was a family history of I don't even remember what I helpfully, but with great trepidation, offered up to her that my father had been an alcoholic. Dead for 30+ years and he had pretty much stopped drinking by the time I was born but still ... I added that I only mentioned it in case it raised any red flags, and asked that if it did not could she just ignore it. Of course, she assured me, it really didn't add any information they needed and it need not be officially noted. I'm sure you can see this coming (but we didn't), the first page of their report -to go into the official school records said, "The patient is a 5 year old child whose maternal grandfather was an alcoholic." I think it took another few sentences to get to the part where he (orange pants not maternal grandfather) was born at 25 weeks gestation, weighing 1 lb 7 oz.
And let's not even talk about his first hospitaliztion for a shunt revision and the doctor who included us in his "Grand rounds." So there I sat at 25, trying to nurse a baby who wasn't very good at it (that made 2 of us) and connected to IVs and we were surrounded by the old doctor and half a dozen new doctors and made exhibit A. I remember desperately trying to pull things back in place while the one female in the group cringed at the back of the crowd. Medical privacy.
So that should at least help explain why I hide my face here and use one of the many aliases my mother thoughtfully provided me by changing her mind several times about what to call me. That and the fact that this was the only photo with a really good shot of my shoes. I have no idea why my daughter was hiding other than to follow the rule that all 4 kids can NEVER look at the camera at the same time.