Small bites of happiness

Against all odds, my mother is still here, among the living.

She struggled through her touch and go night, and then swung more up than down throughout the few days since.

I have stayed at her side or close by, fearing a call saying "Hurry now, she's turned for the worst." But it has not come.

She is ill still; weak, and broken-boned. The heart still gallops, controlled by medicine's drip, drip, drip into her arm. Her blood is still hosting hostile invaders, though fewer, we believe, than in the depth of her illness.

And yet, she had returned from the brink. No longer at the precipice of "multi-organ failure" her liver and kidneys are back in the job; her lungs and heart, though diminished, have not thrown in the towel.

She gains strength slowly, minute by minute. I watch the clock tick by with her heartbeats, the monitor screen my Rosetta Stone, translating her complex body into simple numbers I can witness the rise and fall of.

With these I can infer trajectories; legitimize hope. When her O2 sats at 99, *I* breathe easier.

Everything in such a delicate equilibrium, we are all tiptoeing around her, afraid to do too much and send the scales wildly tilting again.

And yet things must be done: IVs changed, oxygen delivered, blood pressure measured, pain medicine given. Most painful of all: her position shifted, so as not to develop bedsores. With every move her unset bones dig into her flesh from the inside, scream warnings of pain the drugs can only dull, not eliminate.

Also? She must eat. Because if her body is going to repair itself, to heal? It must have fuel and the ingredients to do so with.

Yet finding foods she is inclined to swallow is a daunting task. Sedated, reclining, nauseated from medications, she would rather skip the whole affair.

So I am once again mothering my mother. Offering tiny tasty morsels on the tip of a spoon, coaxing and cajoling her to take "one more bite"of something "yummy" harkens back to the days of my boys' infancy.

We are most successful with the comfortest of foods: soft, sweet, easy to slide down her tired throat: soups, yogurts, puddings.

Yesterday, perusing the hospital's dining menu I noticed an item I had previously overlooked and inspiration struck: baked sweet potato, one of Mom's all-time favorite foods!

It came soft and well done... perfect for my plans. I cut it open, smelling the earthy sweetness rising up from the deep orange flesh, slipped it all out of its papery skin, then went to work.

I emptied the margarine pats deep into the mound and watched them swiftly melt. I took up the fork and mashed and smashed, tamed lumps of potato flesh into a smooth purée. To thin it out to a consistency that would slide right down, I slowly spooned about half the accompanying tomato bisque soup into the potato, blending and rendering it halfway between a thick soup and a mash.

And? It was perfect.

People? She ate THE WHOLE THING. And with gusto.

And in those few moments when I was scooping spoonful after spoonful of nutritious goodness into my mother, and I could see that eating this was something that was actually giving her pleasure, I was happier than I can ever remember being.

A very small, very brief bite of happiness, to be sure. But blinding in its intensity, and staving off the encroaching darkness, if just for a little while.

That train is coming...

I am sitting by my mother's side. again.

Watching her breathe. again.

But not for very much longer.

She is dying.

It's not just a broken hip.

It's a broken heart. literally.

And an infection that has gone septic.

Blood that won't clot, or that may actually be forming tiny clots within itself, and therefore not where it is actually needed.

There are all kinds of official medical terms for these things, and I know them; have heard all sorts of acronyms flying about the ICU that will surely be the last room my mother occupies.

But is comes down to this: her body is worn out, as is her spirit.

There is no more fight left in either, only pain and suffering.

And it's soon time for that to come to an end.

I thought it would be last night, came barreling back to the hospital through rain and fog, having arrived home at dinnertime and stayed through putting the kids to bed; all while fielding phone calls from nurses, doctors and family members.

I walked into her room here in the ICU a shaggy mess, expecting to find her the same. But somehow in the hour since I'd last phoned in, her blood pressure had normalized and her heartbeat reigned in, no longer pulled by stallions, champing riotous at the bit.

"Your mother may not last the night" was still a possibilty, but no longer a softened, near certain prognosis.

And, indeed, she stayed the night.

This morning a nurse woke her up in the wee hours to administer another shot of vitamin K, attempting to stem the blood tide. "Thank you" my mother responded, astonishing the nurse who told me she had never been thanked for an injection before (more frequently cursed, I assume). That's my mother: gracious, grateful, full of love. And sorrow.

"Tough old bird" I whisper under my breath as I kiss her forehead once again.

How thing-like a body becomes when it is old and broken and clinging to life with tendrils weak and brittle as snow-scorched vine.

And yet my mother's hands are strong still, fingers wrapped, embracing mine, one of the few points of physical contact not obstructed by tubes and wires, her whole body a minefield of pain.

She looks like a fighter pilot: mask covering nose and mouth, offering air ever more oxygenized as her lungs are capable of absorbing less and less.

And fighter she is (tough old bird) clinging still to life, diminished now to this room, my hand, my voice, a cup offering ginger ale through a bendy straw.

She is still here.

I am here with her.

She knows I'm here.

And, for now, that's enough.

A matched set of broken hips

I got the phone call at 4 AM, either late Friday night or early Saturday morning, depending on how you count time.

The BEST news a 4 AM phone call can deliver is a drunken wrong number. NO Candice is NOT here and (to my knowledge) she did NOT steal your man.

But this wasn't that.

This was the other thing. 

The "your mom fell and is in a world of pain so we've called an ambulance and are sending her to the ER" thing.

And so it goes... again.

I did not see my children on Saturday, leaving long before they were up for the day and retuning home long after they were asleep; Ethan in my own bed, missing me.

By the time I arrived at the ER my mother had been to x-ray and returned with the tech's unofficial "broken hip" reading, that soon became official. Her right side, this time. So now she has a matched pair.

There will be days ahead of back and forth on trains and in cars. There will be packed bags and sleepovers on Long Island friends' and relatives' sofas.

There may be an operation, or there may not.

This will be swift or long and drawn out.

There is no way my mother is getting away clean, without pain and suffering.

And that sound you hear?

Like crystal, cracked; musical and violent all at once?

It's the sound of my heart breaking.

Again.

Hodge-podge Edition

Five things I want to tell you (updates and downloads of momentary thoughts from my currently chaotic brain) in no particular order. Kind of like what you'll get if you open up one of my kitchen drawers (don't ask):

1. Ethan has been dropped off at camp.

Ethan, excited at camp drop-off

Five whole days apart. I am missing him. And yet? Wow, is the house quieter and more peaceful.

Every now and then something happens and I realize yet again that my son who doesn't have autism is actually higher maintenance and more exhausting to parent much of the time. Go figure.

2. And Jacob? About to do the same with him on Tuesday, a return to the wonderful ASD Jewish camp program he went to last summer. The one I had to drive like a bat out of hell up to last summer, a full day early, to pick him up and then race Hurricane Irene back down to New York.

Please let this year be a repeat of the wonderful time he had last year, but can we just skip the hurricane emergency and accompanying parental anxiety? Thanks in advance, gods of Autism. And extreme weather.

3. My mother is doing... better. I have heard that the swelling around her eye has gone down considerably. It was so hard to not be with her yesterday, but I had to take Ethan across 2 states to camp, and then come back, and I just didn't have it in me to then travel an hour each way in an opposite direction. (Many thanks to Suzanne who lives one town over, and came to visit my mom in my absence. True friend.)

I will spend today with her. Hopefully she can go home. Even if that "home" is no longer a true home (sob), but just her nursing home bed, it's better than a hospital one.

Mom is constantly anxious about her glasses, which I will be bringing with me today when I see her. But she forgets. This is the tragedy of my mother's cognitive impairment. In the moment she is so with it: bright and connected and funny and kind. But her short-term memory, her ability to make things told to her stick? Is just... GONE.

And so she is constantly anxious and worried and upset about mysteries that have no need to be mysteries if she could just remember. But she can't.

I HAVE her glasses. They have been fixed. I will bring them to her today. She has been given this information at least twenty times in the last two days. But I am positive she will wake up this morning not knowing where her glasses are, and worrying that they are completely broken and she will never get them back.

Number 342 of the things that are breaking my heart.

4. I am having a really hard time right now with all that's going on (and I'm not even telling the half of it). Anxious. I do not feel anxiety often. Which is a good thing because I tolerate it REALLY poorly. I am jumpy, twitchy and more distracted than usual. My ADD goes into hyper-drive. And I get really cranky. And negative.

And I write things like this:

When you've been spending time with your sad, injured mother, you tend to think ungenerous thoughts about strangers as you walk around streets of New York, like: "How come YOU get to stroll down Broadway chatting with someone who is clearly your sister, with your twin, odd, ungainly gaits while my Mother has to lie in a hospital bed with a baseball sized purple goose egg swelling her eye shut?" 

The brain screams NotFairNotFairNotFair as I and everyone else just walk about on our daily routines, oblivious to the manifold disasters that lurk around each bend. Every able-minded and -bodied person is just one misplaced step away from becoming a member of the underclass injured, the invisibles who shuffle or wheel among us oblivious, lucky folks.

See? I am just SO much fun right now. (Yes, it IS appropriate to start feeling sympathy for my husband right about now.)

5. Squirrel! ... Shiny! ... Was I going to say something else i was going to tell you? Never mind. I'll remember later. You don't mind a call around midnight, right? Or better yet - something to post about tomorrow.

Fallen

Mom, 4 AM, Saturday, August 18th

I am doing time in a hospital ER again.

It's 3 AM again (actually nearly 5 by now).

There was a phone call at 2.

2 AM phone calls are NEVER good news.

That it came today, when we were back home in the city, returned just this past evening from our Berkshires vacation was a blessing. But also, of course, a curse.

So here I am, again, on 2 hours of sleep again, with my poor hurting mother.

What happened was: she fell. Again.

Mom fell in the bathroom of the nursing home where she now lives. The aide who had brought her in there was being kind, giving her some requested "privacy" for a moment, so had stepped back, was hovering just outside the (open) door.

But Mom forgot that she was supposed to ask and wait for help when she was done and attempted to get up by herself. You can see what a good idea THAT was.

She fell, hard; clonked her head but good on the sink. Additional assorted body parts also made contact with surfaces harder that they should have. And she was sent off to the local ER to rule out fractures, brain bleeding & other such fun stuff.

When I arrived at the ER, I took this picture. Believe it or not the eye looks much worse now, a veritable goose-size egg rising under the purple, bleeding surface of her lid and brow.

And yet, my mother, being my wonderful mother, still has a sense of humor about it.

She kept asking "Why can't I open my right eye?" (Yes, her short-term memory issues are so bad she kept forgetting what had happened to bring her into the hospital. Albeit the percocet may have contributed to the fog.) So I showed her the picture.

Her response: "But you should see the other guy!"

And also she managed to look on the bright side: "Doesn't my hair look great?" Love that mother of mine. (Wonder no more where I got my gallows humor from. And my father was even worse.)

So.

Here we go again.

On the up side... astonishingly, unbelievably, no bones were broken. Her ribs, elbow, hip are bruised. Skull: intact, with no brain bleeds.

Just one massive, ugly shiner-to-beat-all-shiners.

Oh, and also maybe it's a good thing that something landed her in the hospital, because as they were doing all those x-rays to see if she'd broken anything, they found some fluid in her chest. At first they thought it was maybe in her lungs, and that she was brewing a pneumonia, but then concluded it was around them, in the pleural area, and she was instead in the wee early phase of an incipient heart failure.

Which they are now fixing.

So yes, obviously she was admitted into the hospital.

Good thing I wasn't going to that family wedding this weekend, after all.

Things my mother said to me today

Mom walking (with PT help)

I am so sorry to be continuing with the grim here. I want to be uplifting and life affirming, really. But what I am today is worn thin from being with, and advocating for my mother, who is simply flat-out miserable in her recovery.

Until today she had a bad case of white-coat-itis. She would complain and complain and complain of how horribly sick she was feeling to me, but as soon as a doctor I had summoned came around she was "fine" owning up to being maybe "a little uncomfortable." And I seemed like a nut, like an over reactive nudge. Then five minutes after the doctor leaves the room it's back to "Oh, Varda, I am dying."

Yesterday the GI service doctor was acting super pissy and miffed at me - nearly suggesting *I* was the problem since "No one else has reported your mother's discomfort."

So I then spent the rest of the day asking all the therapists who worked with her if they had noticed any gastric distress, and when they said "of course!" I begged them to PLEASE note it in her chart since it was just not being addressed adequately enough.

The fact that after a week it is getting WORSE, not better, in spite of her actual hip clearly healing, seemed to be of little concern to people until I raised bloody hell today. The fact that *I* had to be the one to point out she is NOT EATING and no one had thought to measure her calorie intake? Really not acceptable.

It also helped that Mom was finally in such a state that she was no longer making nice for the doctors and letting it all hang out, so they got to see and hear some of what I have been witness to over this past week. So now they believe me when I tell them she's been feeling horribly nauseated for days on end and is mostly miserable.

So I will now leave you with this lovely list of things my mother said to me today:

"I have never felt worse in my entire life. Is there a God? Why is he doing this to me? I don't understand, I don't understand.

Kill me! kill me. Let me kill myself. I can't take any more of this. I'm so sick, I'm so sick. I feel so sick. I've never felt this bad before in my life. I feel awful. I'm dying. Let me die, kill me, kill me. Please help me die.

Varda, Varda, Varda, let me die. Varda, let me die. Varda, let me die. Please. Please. Please. Kill me! Let it end!

If I could just throw up, if I could just throw up. If I could just throw up, I would feel better.

I'm so sorry, I'm so sorry. I'm so sorry I'm making you go through this with me.

Oh my god. Let it end. Let it end. Oh my god. Oh my god. Oh my god."

So, um, yeah, in spite of the fact that she actually walked further down the hall than yesterday, today was not a very good day at the hospital.

(And, as you may have figured out, one of the ways I keep from completely losing MY shit while mom is saying all this is to distance myself from it by typing her words it into my phone with one hand while holding her with the other.)

Up and Down

Beautiful flowers in Mom's room (thanks Bruce, Bern, Rachel & Simon)

I only have time for the quickest of updates tonight; barely a post, more of a postette, postella, postellini. Because I am completely knackered. (For my readers who are not anglo-australo-philes that means totally worn out, tired, broken.)

In fact, I'm pretty much going to recap my Facebook status updates because that about says it all:

When I arrived:

"Mom is having another really hard day. One minute she is admiring the smile of the nurse who has come to take her blood and the next she is sobbing and screaming at me to just let her die, it hurts to much to live and she just wants to be done.

After this, and before going home to children who will be all over me because I've been gone all day? I think I need a drink."

Then, later:

Mom was in better space & spirits by the time I left. I still do not understand how no one figured out her severe discomfort was caused by gas and that she needed a very simple anti-gas medicine (simethicone) to feel like a human being. I should NOT have to have been the one to suggest it!

And in the middle? (Warning, what follows is a bit of a rant. Cursing involved. Because it was one of THOSE days.)

A lot of begging my mother to eat and drink, followed by her taking one mouthful of yogurt, one sip of seltzer, and then holding up her hand, cursing at me when I try to force more.

A lot of running to the nurse. They are growing to dread me at the hospital rehab nursing station, and that's a good thing. Because I MAKE them fucking take proper CARE of my mother, which they are somehow loathe to do.

I tell the nurse my mother in in excruciating pain and she blinks at me blankly "Really, she didn't say anything to me."

REALLY? REALLY? Are you fucking kidding me?

She didn't "say" anything because she is so out of it. The pain has reduced her to the state of an animal, holding her abdomen and moaning about how she is terrified she is dying.

But if you ask her point blank, she will say she's not in pain, that she's just uncomfortable. Because she's so polite and all. Also, at this moment, mentally compromised enough to NOT be a reliable reporter - as I have told the staff a BAJILLION times.

At one point, she turned to me and asked, "They are giving me so many medicines already isn't there SOMETHING they can give me that will take me out of this misery?" And I thought "Damn straight there should be something!" and ran off to the nurse to make sure they'd been giving her simethicone for what was, so clearly obviously to me, severe gas pain.

Nope.

No one noticed, and she didn't request it. I actually may have gotten a little mouthy at that point and said something about how when my babies were gassy and screaming in pain it didn't take a medical degree for me to figure out they needed simethicone drops. And how I didn't feel the need to wait for them to "ask" either.

And a dose of simethicone and a couple of trips to the bathroom and bedpans later (no gory details I promise, even though I got to live them, you won't have to) and she was back in her mind, able to converse, aware of the world outside her body.

So I arrived to a mother who would not eat a bite of her lunch and who responded to my entreaties by pounding on the bed and yelling "Yes, yes, I want to die, I am ready to die, just get this OVER with, I can't take any more!"

And I left a mother who was actually eating dinner, slowly making her way through the fruit salad and asparagus, the first solid things she had taken in, in days.  And a mother who was holding my hand and thanking me for being there.

And it was so hard to leave her, not knowing how she would fare in the night. But my children across town needed me too.

And I don't know who I am going to find in the morning, the pain animal or my rational mother. Hoping for my sweet mother, but willing to do whatever it takes to get her back, in any case.

Who The Hell Am I?

Me and Mom on Mother's Day, just before the fall

Today Eden asked: Who The Hell Are You? and invited us to answer.

But today? I don't have an answer.

The I in me is missing.

I have been consumed, subsumed by caregiving.

And at the moment there is no end in sight.

Right now I am a daughter and a mother and truly nothing more.

Just a month ago I was becoming a somebody again. I even said so in The New York Times (online).

And then bully big bear life took a giant paw and swatted me back down. But first he took down my mother.

For a while now we have known that she was one fall away from hell, and our fingers were crossed for so long they grew permanently twisted and entwined like wisteria trunks. But it happened anyway. On a random Friday. (But so un-random: the Friday just before a three-day weekend full of family plans, as it is ever so.)

And though she is technically on the mend, the steel rod in her hip stronger than the bone surrounding it, able to hold her up, she is still falling down. My mother is descending the rabbit hole of despair. She is in a no-win situation and while I hold it together during my visits, I weep in the elevator on the way down to the street, emerge from the hospital's chill air onto the steaming city streets with silent sobs wracking my body, tears streaming down my face.

I have just spent two, three, four, five hours besides my mother who is grimacing and groaning and sharply intaking her breath, in between moments of begging me to let her go home. She is so tired, so discomforted, so without energy or appetite or hope; unmoored in time and space, unsure of where she is or why.

She wants to be allowed nothing more than to sleep; to sleep and sleep and sleep and rest her bone-weary body. But to let her lie in bed now is to let her lie in bed forever; if she doesn't get up on her feet soon, she never will.

So I am letting the rehab folks kindly torture her. And feel the twisting of my guts as she says: "I can't, I can't, I can't." But then does.

And every fresh day I lie in bed at 5:45, alarm braying, saying to myself: "I can't, I can't, I can't." But then I do.

Linking up with lovely Eden of Edenland today. Neigh.

One more day

I have now gotten through one more day with my mother in the hospital. She is in her 4th room in seven days - 5th if you count the ER - and she is disoriented. (Well, I think I would be too, in that situation.)

She is also, for the first time this time around, unfortunately, in the "A" bed now, which means the one near the door, not the window. And for my mother that means trouble, always. I have learned this by now. But try getting the hospital staff to listen to me...

My mom, struggling with short term memory issues under the BEST of circumstances (let alone the disorienting journey that is hospitalization) needs all the external supports she can get to help her know where she is and why she's there, what time it is and whether is is day or night.

And a window? Wonderfully useful to figure out whether the clock on the wall is telling you if it's noon or midnight.

Without this knowledge she gets anxious.  Today, every time she drifted off and then reawakened - which meant about every ten minutes - she would ask me, fearfully: "Is it morning or night? What time is it? What am I supposed to be doing?"  And also, often: "Varda, where am I? What happened to me?"

It's Groundhog Day all over again (and over, and over, and over again).

I considered making a voice recording on my phone so I could just hit a button and play it back for her each time, instead of leaning in to her good ear to speak the following, very clearly and in the perfect cadence that is neither too slow or too fast, with a voice that is neither too loud nor too soft:

"Mom, you're in the Hospital. Last Friday - a week ago now - you fell and broke your hip. On the left side, this side, here." (As I lightly touch the top of her left leg.)  "You had surgery on Sunday to fix it and they did - they put a metal rod and pins and screws in, good as new."

"But you heart had a hard time with the surgery. So you had to go to the ICU to get better. There was a machine breathing for you, with a tube down your throat, and you were heavily sedated. You probably don't remember anything from those days." (She shakes her head, she most certainly doesn't. This is all news to her. Again.)

"Then you got better, so they took out the tube and woke you up, and moved you to a room. Bruce came to visit for a few days." (She nods but she's just being polite. She has no memory of that either, it being more than an hour ago.)

"And now you're in this room, on the orthopedic floor, and you need to work on getting stronger and using your leg now. It's (insert time here) and time for you to (insert desired activity here - eat, rest, get your vitals taken, have PT) soon."

Mission accomplished.

Until the next time.

Talismans and Distractions

A pendant from my friend, hanging from Mom's beads

It takes a lot to get though a day in the hospital with a loved one.

And thus, even though I am, for the most part, a rational being, not terribly prone to magical thinking, I am employing a lot of talismans. And distractions.

Talismans for comfort, and to indulge that small part of me who still clings to magic. Because... why not? What could it hurt?

And distractions because I would like to retrain to my last shreds of sanity. And those dreadful few days in the ICU, sitting in the preternaturally noisy hush, watching a machine breathe for my mom? Were whatever is the polar opposite of awesome. Hence the books, magazines, snacks, telephone, and screens large and small.

The talismans? Jewelry, most of it given to me by dear friends, that I can see, touch; feel giving me strength as I sit. And wait.

First a bracelet of faceted stones from my friend Rachel who lost her wonderful parents way too soon. As their only child capable of caring for them (her brother is autistic), she knows more than any other close friend, what it means to be a caretaking daughter.

Then a wonderful necklace made up from a "Super Mom" pendant my dear Empress Alexandra gave me last year when she was my roommate at BlogHer, strung on beads that were once my mom's. Purple beads, our favorite color.

Finally another bracelet: sparkly plum-colored glass beads, with a flattened silvery bean in the middle, a perfect worry stone conveniently encircling on my wrist. This is one of sixteen nearly identical bracelets.

I gave one to each of my fellow Listen to Your Mother NYC cast members just before we began our show. It reminds me of my non-caregiver self, she who moves through the larger world and will do so again, one day soon.

May they work their magic and keep my mother (and me) safe.

Holding Mom's hand again

As for the much needed distractions: I played a lot of games on my iPhone. A million thanks to my Scramble and Words-With-Friends friends.

I brought with me about the only two books I could tolerate in this situation: Let's Pretend This Never Happened by Jenny Lawson (The Bloggess) and Rosanne Cash's Composed; both memoirs, by the way, as that's how I roll these days. And also? I have meaningful connections to each of these authors, and somehow that made me want their words with me, let me feel like I was sitting with a friend, not a stranger, as I was reading them (or in the case of Rosanne, re-reading).

And hearing their words in THEIR voices inside my head as I read, instead of my own, also makes me feel less alone.

Jenny's book is with me because it is hysterically funny and also raw and real at the same time. And I think reading a book by someone more neurotic and over-the-top than me makes me feel calm and together in comparison. I know Jenny, have hung out with her at blog conferences (she's in that funny category of fond acquaintances who feel like close friends to me because I am privy to their innermost thoughts via reading their blogs) and have given and received numerous hugs from her.

She is a generous and compassionate woman, just the right person to sit with me by my mother's bedside. (She also gave my blog its first big boost by linking to my From Autist to Artist" post in one of her Sunday wrap-ups two years ago, and for that I am forever grateful.)

As to my connection with Rosanne, it is more tangential and tenuous, but I still feel it. Besides the fact that my sort-of-step brother (it's complicated) has toured with her band at times, and that I am friendly with a couple of friends of hers, we also met face to face once. Her book was actually released ON my 50th birthday and I chose to go to a reading/performance/signing that night. 

As someone who has gone through the illnesses and the loss of so many of her loved ones, and written about it so soulfully and eloquently, I have found much comfort in reading her book yet again this week.

And Jenny and Rosanne are both Twitter friends. Which is the perfect lead in to my final distraction, which is also so much more than a distraction, is actually a tremendous support and source of strength. And that is social media.

Through Twitter and Facebook (and this blog) I have never felt alone on this journey with my mom, not even for a moment, not even in those darkest hours when her strength was at a nadir, and I thought I might lose her.

Finally, if you're here for an actual update on Mom's actual condition: As of today, Thursday, she is much improved. My brother (her step-son) Bruce came in yesterday to lend support, and he took the evening shift, so I could pick up my kids, have a family dinner. 

Yesterday afternoon, Mom moved from ICU to a step-down unit, and, if all continues to go according to plan, will be in a regular "medicine bed" tomorrow and then on to rehab, working on walking again. Because she still has that broken hip, remember?

So there will be a lot more hospital days in her and my future. But with the right talismans and distractions  - and my wonderful community of friends and family, both physical and virtual - I will make it through.

Better

The view in ICU

Mom is doing better today. Much better.

(How much do I love writing that?)

She is off both the ventilator and the vasopressor drugs (that were supporting her blood pressure).

She's not out of the woods yet, but neither is she stuck in the weeds. There is a path and she's on it, even if it meanders and seems to double back at times.

There are still minefields ahead. Her equilibrium is so very delicate, thrown off by the slightest breeze. So we are going slow as they remove the supports that have been propping her up since the post-operative crash.

And yet there is danger in this, too.

The sooner she is on her feet, the better, as she is most assuredly in the "use it or lose it" years. And at the moment, still immobilized by equipment lines, strapped into a bed, she is not using much of anything.

Unless you count her middle finger, glowing bright red under the oxygen monitor's light, which she is waving under the noses of the staff who are bothering her, poking and prodding, hassling and tugging at her; tightening straps she wants loosened and set free from. And yes, I believe she knows what she is doing as she lifts that finger to them.

She can't really speak much yet, her esophagus torn up pretty badly from the ventilator tube's sojourn there. But her eyes and gestures say plenty.

When the nurse had handed me the suction tube and showed me how to stick it into the hole in the oxygen face mask, told me to encourage her to cough and suck up whatever comes out?  She forgot to warn me that what might be coughed up could resemble a lung.

Seriously, a giant gob of bright red clotty blood came spewing out and even I, who have staunched my father's bleeding wound with my bare hands, blanched and willed myself not to faint as I suctioned it all away and then gingerly hung up the now bloody tube, wondering if I would have the courage to pick it up again.

(My apologies to the squeamish among you for that.)

Thank goodness they finally ditched the mask, set her up with the old nasal cannula (after she rasped "take this fucking thing off me" enough times). And her oxygen - as far as I knew when they kicked me out for the night - was still satting at 98%. Excellent.

My mother, while sweet and tender, is also a tough old bird. I don't want to tempt the fates and say this, so please knock on some wood or spit over your left shoulder three times while you read it, but I think... she may just pull through.

It's not going to be easy. Rehab is going to be a long haul, and we HAVE to get her on her feet again. And she is not exactly compliant with exercise regimens, though she will tell you she is. Because if she does something once, she considers herself DONE with it. Even if she has been told to do it three times a day for a month.

I have seen her lie to doctors and physical therapists. She wants to be SEEN as compliant without really complying.

(OK, I might just be describing myself here, too. And my son Ethan, as well, come to think of it. Methinks a pattern is emerging. I may just have detected a lovely family trait.)

So, there is clearly much more cursing ahead.

But that's OK.

It's AHEAD.

And so I'll take that ahead, whatever way it comes.

I am linking this up with Just Write, just because.

The Rollercoaster

The view from where I sit

My life since last Friday morning has been a jumble.

I am riding the rollercoaster, strapped to my mother's flagging health.

I am up, down, and all over.

I couldn't even begin to put things into a coherent sequence, present a normal timeline to you. The days whiz by, but the minutes telescope to feel like hours. Waiting is excruciating. But so are the events that puncture the boredom.

The biggest single up/down moment:

On Sunday morning, Mom's orthopedic surgeon came out to find me in the waiting room, to tell me that the operation had gone well: rod and pins in, bones fit together like tidy puzzle pieces, quickly done. He told me she was about to be extubated; that in about an hour she would be waking up, and they would send someone to bring me to her side.

The hour came and went. I didn't want to be a nudge; figured she probably was waking up slow from the anesthesia. (I know I do.)

I was being happily distracted by my friend Barbara, who had surprised me by a visit with rations (black and white cookie!) and delightful conversation.

But when she left it was nearly two hours without a word.

I walked up to the desk to ask "When can I go to my mother?" and did not like what I was overhearing as the reception clerk attempted to track her down.

"She's in recovery on another floor." was all she told me, and the unit and bed number. But when I got out of the elevator I saw that the unit had a name too: Surgical Intensive Care Unit. This did not bode well.

And when I arrived at her bedside I was shocked to see her surrounded by medical folks frantically doing... THINGS to her. Not what "successful operation" had lead me to expect.

I was shooed away to wait outside with nary an explanation. I tried hard not to flip out. Eventually I was made to understand the situation.

No one ever properly apologized for leaving me in the dark for so long. But I understood, people had been kept busy trying to save my mother's life. I couldn't be too pissed.

And so it has gone for the last 48 hours.

I am up, down, and all around.

My mother, due to her critical aortic stenosis, is such a delicately balanced machine, and they have not yet found the perfect sweet spot for her blood volume. Push too many fluids and they back up into her lungs, send her into heart failure. Remove too much of that excess fluid and she can't maintain her blood pressure.

So a ventilating machine is helping her to breathe, so she can get enough oxygen in spite of the (hopefully lessening) fluid in her lungs, and medicines are keeping her blood pressure in a normalish range. There are various other forces pulling and pushing at her including her levels of pain and sedation.

All in all, an incredibly complicated dance.

She rides it up and down throughout the day, as do I. I am sharp one moment, lost the next. I have been deeply distracted and also in need of distraction (many thanks go out to friends playing iPhone word games with me, you are keeping me sane).

This morning my brain was in another sphere while brushing my teeth. I had accidentally picked up my son's Sponge Bob toothpaste and squeezed it upon my toothbrush, didn't notice until I got a mouth full of bubble gum flavor where I was expecting mint. That grabbed my attention, in a not particularly pleasant manner. And the rest of the day followed suit.

Just as I was thinking that I'd had enough of watching her seeming sleep, that it was time to go home and leap into the waiting arms of my beloved children (who were likely gnashing their teeth and fighting over Wii games) she floated up to consciousness for a moment.

I hastened to stand by her, on the side of the good ear. She was clearly bewildered and very uncomfortable, finding the giant tube down her throat most distressing, her eyes beseeching, full of questions.

I explained as best I could, simply, succinctly since I knew I had likely only moments before I lost her again.  I like to think he heard me, understood.

And then it was time to go, to flee Westward, back into the arms of my husband and progeny.  I missed putting Jake to bed, but caught a very-happy-to-see-me Ethan awake.

And unbathed, of course.

And slightly sunburnt.

And with a big hug and kiss for me, his one and only, irreplaceable Mom.

Up.

Perspective

Whatever I was whining to myself about came to a screeching halt on Friday morning, when I got the call that my mother had taken a bad fall and was on her way to the ER. That sweeps everything stark.

What is important... what is stupid piddly shit... made instantly clear.

Children don't have this perspective yet. Jacob has been clingy, Ethan morose, petulant; they want their mom.

So do I.

Here's the update I don't want to give: 

It's touch and go right now. She is in the ICU. A machine is breathing for her. Her blood pressure is being supported by drugs. She is surrounded by machines, tubes, equipment. A thousand IVs hang around her. Lines snake themselves all over her body. Monitors beep and hum. The thrum and hiss of the ventilator sets the bass beat.

The unquiet quiet of an ICU.

I made a difficult decision on Friday to take the risk and do something (surgery) that may just be the road to killing her quickly, versus doing nothing and walking the path of certainly killing her slowly.

To not have had the surgery, to choose the "do nothing" approach would have meant a month - or two or three - on complete bed rest.  And bed rest plus an elderly person such as my mother - with cognitive/memory issues and a bum heart - usually equals an excruciating, permanent slide into the abyss.

And yet, whatever the immediate outcome, the long term is still not good. I have been losing her bit by bit for quite a number of years now, hastened much by my father's death. (Can it really have been two years and counting?)

The incline of her decline has steepened in the past few months. I really have felt like I'm watching the color fade from her spirit, before my very eyes.

And yet now that feels glacial slow compared to what has transpired in the last three days.

In one word:

Freefall

The hip repair surgery went well, but...

BUT

BUT

(Like that old joke, "The operation was a success, but unfortunately the patient...")

She was not a good candidate for surgery.

Her old, huge, much used heart is tired and worn out.

The valves don't work like they should, like they used to (though one has been tricky since the beginning: she, a little girl with a heart murmur).

So even though they took a zillion extra precautions.  Were oh so careful to try to not unduly stress her heart during the surgery. It's still surgery. Things had to happen. Things her heart did not like.

The surgery went well. She could stand on that leg (if she could wake up and stand).

But her heart needs the help now.

The machines. The slow drip of the IVs.

And so she slumbers deep below the level of consciousness; sedated, kept under to avoid the unbearable discomforts her body is enduring in its struggle to remain alive.

And yet still, she is there, some small part of her. The spark of her life flickering but not guttered.

I sit by her side (until they toss me out for the night).

I cannot touch her skin; she winces, grimaces at even the gentlest caress.

So I stroke her hair, smooth it down; fan it out on the pillow, fingertips following the ripples of her silver curls out to the ends.

I whisper in her ear. Words of love. Of encouragement.

Is it cruel that I ask her to hang in there for yet one more day, that I am not willing to let go?

I will accept what comes.

She may fight and rise.

She may release, and fall.

But not yet. Please, not yet.

I want my mommy.

Down the Rabbit Hole (Again)

My Mother is in the hospital again, and this time it's serious: a broken hip.  Difficult for anyone, usually disastrous for the elderly, of which she most surely is.

And the sad and ironic thing is that I was on my way to see her anyway, yesterday. I was in a taxi, taking Jacob up his doctor's appointment when I realized a message had come in that I hadn't noticed in the hustle and bustle of my early morning.

When I registered that it was from the nurse at Carnegie, I held my breath. It is almost never good news.

A fall... found by aide... ambulance... Mt. Sinai ER.

Not how I was planning to spend the day (or the entire holiday weekend, for that matter). I had been thinking: do Mom's laundry, take her to lunch, give her a manicure. Bur ER bound we were.

I was on pins and needles throughout Jake's appointment, just itching to get. to. the. hospital. Jake was amazing though. He had heard my phone conversations, had understood my explanation that we were NOT going to be visiting Grandma in her home as planned, but instead going to the hospital to see her.

He told everyone at the doctor's office: "My Grandma is in the hospital. She doesn't feel good. We are going to see her to tell her to feel better."  (Whoever says autistic kids lack compassion can go suck it.)

And he was great in the two hours he was with me there (until my husband could come to pick him up). He kept telling my mom to "Feel better, Grandma!"

Very shortly after we arrived they wheeled her away for CT scans and X-rays. The doctor prepared me. By the rotation of her leg and the level of her pain, it was certain her hip was either broken or dislocated.

I was praying for dislocation but not feeling hopeful, and sure enough, it was as we'd feared: the top of her femur, the "ball" part of the ball and socket joint that is a hip was broken clear off the rest. She needs surgery to repair it, to place a metal rod in the bone and pins and screws to hold everything in place.

Damn!

Thank goodness her sense of humor is still intact. Between that and the disinhibiting quality to the morphine that is keeping her out of severe pain, she has been terribly funny.

In the ER, as the nurses were trying to put in a catheter, and she was not quite understanding what they were doing, I heard my mother's voice calling out from behind the curtain: "Varda, why are there women in my vagina?"

When told that she needs to have surgery that involves putting the metal rod and pin in her hip, her reply was: "Then I better find a man with a magnetic penis!"

I hold on to this as I prepare to return to the hospital in the wee hours of the morning tomorrow, to send my mother off into surgery. there will be more tales to tell, but for now, I am tired. So, goodnight.

On being a daughter

Note: I initially wrote this post two weeks ago, the day my mother came home from her hospitalization, then promptly forgot about it, caught back up in the whirlwind of my busy life. I just re-discovered it, while searching for something else in my blog's draft hopper, and so having given it a polish, I send it out into the world today:

My 88 year-old mother came home from the hospital today, after a four day, probably-not-necessary-but-that-can-only-be-known-in-hindsight sojourn there.

I was with her for much of this time, only returning to my home for brief shifts of not-anywhere-near-enough sleep, and to reassure my children that I still existed and cared for and about them. (And to do Jacob's extensive vitamin/medicine pours.)

By the end of this journey, I have realized that I was in no way prepared for this. Throughout all my father's many hospitalizations in the last few years of his life, I had my mother to share the burden of the care and time with. And also, often, a third party, their very caring aide Mina.

This time? There was just... me.

And there is just not enough of me to go around.

But go I must.

After remaining awake for 99% of her 30 hours in the ER before being finally admitted into a real hospital room, my mother spent much of her remaining hospitalization sleeping.

And I, equally exhausted, dozed on and off in the chair beside her, keeping a lazy vigil made possible by the excellent care I knew she was receiving.

The thousand tests they performed have shown that all the scary things we worried might have been going on were not: no stroke, no heart attack, no bisected arteries, no clogged carotids, no normal pressure hydrocephalus, no heart failure, no silent pneumonia.

The vascular specialists, the neurologists  have walked away satisfied. But oh, yes, my mother was still deeply dizzy, the condition that had led her to call the nurse where she lives and begin this whole chain of events on Monday afternoon.

After hours and hours of wait, wait, wait, there is suddenly rush, rush, rush. My mother must arrive back home to her assisted living community by 6 pm or they cannot accept her (rules, rules, rules).  So once the green light had been given, her wristbands cut off in both a functional and a symbolic gesture, a surgical rupture of the umbilicus of her care there, I am left to dress my mother.

Ever attempting to be helpful, they sent the nurse's aide to assist; however, I know this is my task, and shoo him (him!) away.

My mother had been hooked up to all sorts of machines and monitors, which means she had a lot of... things... stuck all over her body. And so after removing her hospital gown, it was time to de-tag her.

My father used to hate help with dressing, even when he could clearly no longer function on his own, a man deeply fond of his dignity. So we would often find those little EEG tags, or, stranger still, full monitor buttons, like extra nipples stuck onto his body in odd places, weeks (weeks!) after a hospitalization.

When I would attempt to remove them he would become upset.  In his mind, the doctor didn't tell him specifically to take them off, therefore they should remain attached. Likewise those little cotton balls band-aided to blood draw points designed to apply pressure briefly after the event, to help prevent hematomas from developing.

My parents have been known to wear them for days after a doctor visit, having never heard, absorbed or remembered the instructions: "Keep this on a few minutes, maybe an hour,  to make sure the bleeding has stopped."

My mother's skin has gone all crepey, nearly translucent, in spite of its always olive tint; it stretches tremendously, so as I pull at the tags I am begging the glue to yield before I cause her any pain.

As a mother, I think about how my mother must have painstakingly cared for my physical needs when I was a baby. And now here I am, full circle, caring for my mom.

When the technicians had asked her to move into positions that caused her pain, I would rub her back, hold her hand; simple reassurances, but making all the difference in the world.

And then, at the very last, a pair of eager ENTs came down, fresh faced residents full of cheer. They put my mother through some moves -- lie down, turn her head, turn her whole body, sit up this way and not that -- to help re-set the gyroscope of her inner ear.

"Watch us!" they'd said, "This should help, but it often needs more than one session.  You can do this with her at home until she's all better, or if it happens again." Their enthusiasm was infectious. I learned the moves.

We made it back before six. They let us in, welcomed her home. Willie, poor ancient cat, was beside himself with joy to see her.

And then, miraculously, after days of somnolence in a hospital bed, Mom was eager to go down to the dining room, to take back up the reins of her social life: dinner and a (closed-captioned) movie with the other two feisty old broads who call my mother friend.

They are the three musketeers, the nonconformists of the bunch, aware of life's absurdities, always peeking behind the curtain, looking askance at the dour little-old-lady types who populate much of the elder brood.

And thus I leave her, at the dinner table with her friends. Laughing.

And so I can leave with a lightened heart, as they lighten hers; for with them she once again laughs. Oh, how they laugh.

Mom and her friends

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13 Things to Do in the ER for 30 Hours

I had all kinds of plans and ambitions for my life and blog this Monday and Tuesday, which all came to naught because of one of *THOSE* phone calls I received Monday, early afternoon.  A classic "your mother isn't feeling well and we think she should be seen by a doctor right away" phone call.

So out went the Book Expo 11 plans, including a tea party at Random House with the fabulous Lisa See. Out went my Red Dress Club  RemembeRED memoir post.

In came the grueling grind: sleep deprivation and worry and tedium and adrenaline and annoyance and rage and acceptance and stupor and... a lot of sour lemons. So I made the bloggers version of lemonade: whipped up a post about it.

It is now late late Tuesday night, and my mother has FINALLY been admitted to a proper bed in a proper room on the appropriate ward. I wrote this post Monday night between midnight and about 3 AM, typing with my thumbs on my little no-keyboard Droid cellphone. That I still had functional thumbs today? Nothing short of miraculous.

So without further ado, I bring you:

13 Things to do in the ER while waiting with your 88 year-old mother for them to find her a bed and move her the hell upstairs:

1.  Eat 2 packs of peanut M&Ms for dinner. (What? Like you've never experienced vending machine cuisine at its finest?)

2.  Read The New Yorker you brought with you cover to cover, even the articles about obscure sports figures you don't care about and the reviews of movies you were never planning to see in the 1st place.

3.  Feel inordinately proud of yourself that you managed to snag, vulture-like, from the patient vacating the berth next door: the pillow your mother's head is dizzily resting upon and the hard, narrow, plastic chair that is currently causing you a literal pain in the butt. As there are so very few of these rare and valuable commodities in the insanely overcrowded ER, you had to consciously restrain yourself from performing a fist pump of victory upon their procurement.

4.  Calling overcooked fish, white rice & soggy mixed veggies "a meal" and pouncing upon it with your mother when it arrives at 8 pm after 6 foodless hours spent in the ER.  (Also? Feeling like a genius for re-purposing the "real lemon juice" packets provided with the tea to make the fish vaguely palatable.)  

5.  Wish you could shut your ears and not hear, the same way you can close your eyes and not see, so as to not have to listen to the 15 minutes of crying, screaming, wailing, cursing, gurgling and pleading going on in the curtained bay next to yours as a young woman has "about a gallon of pus" surgically drained from abscesses in her jaw. Realize how many doctors really do have impatience with, and markedly little empathy for patient's pain. (Be incredibly grateful for the amazing man who is your mother's - and was your father's - eminently patient & empathetic cardiologist. A menschier doctor does not exist.)

6.  Try to hold the lockless stall door closed by sheer will as you pee as quickly as female-humanly possible in the filthy visitor bathroom that you had been hoping not to encounter, but just couldn't hold it in any longer.

7.  Tie the undone shoelaces of the incredibly adorable 3 year old girl who has sidled up to you in the outer waiting room and tapped you on the knee to request assistance with said task, while her bedraggled mother simultaneously tries to fill out paperwork & calm her screaming, ill infant. Give up on trying to answer an urgent email and play with this sweet child for the last 5 minutes of your 10 minute "plugged-in" break from the inner ER electronic blackout zone. Return to your mother with a smile on your face.

8.  Try not to cry, yourself, as you (expecting tears and howls) break the news to your autistic son that you will NOT be home to put him to bed as you had PROMISED him you would be this morning, kissing him goodbye at the school bus door. Be surprised and thankful for his calmness, but even more wrenched by his brave little "OK, mommy I'll see you in the morning." Pray they find a bed for your Mom before 5 AM so as to make THAT one true. (They didn't.)

9.  Listen in to the weary mother of the young man in the next-door berth to the other side as she explains to the hospital security guard for the 10th time why she cannot leave for the standard shift-change visitor clearing protocol, as her non-verbal, seizure-prone, mentality challenged son would be completely lost and unable to communicate without her by his side. Try very hard not to start thinking about how life will be if Jacob still has significant communications problems when he is a man, no longer a child, and my presence by his side will be constantly questioned, his disability invisible.

10.  Be eternally grateful it's just an "ordinary" busy Monday and so we're not being "entertained" by one of the loud, drunk/high, belligerent & yet also inappropriately amorous couples who always manage to show up in the ER on Saturday nights. (I had enough of THOSE on my train ride from Boston to Lowell two weeks ago.)

11.  Laugh when your Mom loudly contemplates what she can possibly lift from the stocked supply shelves you pass, walking her to the one non-filthy patient bathroom on the far side of the ER. Make her laugh as you invent imaginary uses for the pink bedpan you assume she plans on stealing.  Look the other way as she nicks a mini tissue box: "It''s such a convenient size!"

12.  Try not to think about why you know this ER like the back of your hand, can find your way through the catacombed passageways of this hospital's lower corridors like a resident, pushing back against the tide of memories of your father spending much time and mother-in-law dying in the selfsame ward they are seeking to place your mother in, tonight.

13. Two words: angry birds. Two less fun words: dead battery. Two even less fun words: puking toddler. (And yes, a hurling pediatric patient missed my feet by inches today when my Mom was in triage. But it was sweet to hear him say afterward: "I feew bedda now" to the surprised nurse.)

And? that's all folks. Wish us luck!

@@@@@@@

Well, we finally got the luck... some 30 HOURS late.  Much more hilarity ensued, more stories to tell... another night. 

Now? TO BED.


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