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.

Wednesday's Week in Pictures (and Words)

I've got a mixed bag for you this week: school events, family events, and random awesomeness found on the streets of New York City. Enjoy!

An independent pharmacy's nostalgic storefront display

Would you ever see this (and the typewriter at the top) in the window at a CVS? No. Support your local small businesses, people. They are the lifeblood of your communities!

Jacob said "Make me black & white!"

This week's "Streets of New York WTF" moment:

INVASION!

Ethan's class had a Revolutionary War Stories puppet show on Friday, the culmination of a long project in which they each researched and wrote original short plays about a historical figure from colonial & revolutionary times. Ethan's assigned person? None other than Nathan Hale.

Remember? The "I regret that I have but one life to give for my country!" guy? Yes, he was caught while spying for us, and hanged at 21. Which Ethan, of course, re-enacted with his puppet. With glee. Thanks, wonderful, creative 4th grade teacher.

But next time? Maybe pick a better role model for my kid?

 

 

We had lots of rain.

Rain

After the rain

Saturday night we had FREE tickets to the hottest new show in town:

Of course we were running late, and trying to hustle boys through Times Square on a Saturday night was, well, trying. Emerging from the subway at 50th street, Broadway was packed. Walking four abreast clearly impossible, we split into teams of two, hustled our buns, and made it to the show on time, literally sliding into our seats at 8:04 as the lights went down.

Ethan & Dan on Broadway

Peter and the Starcatcher was a great show. Wonderful acting, brilliant and creative and very playful staging. An enjoyable evening for all. (Thanks for the tickets Aunt Patty.)