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.

I am a Sandwiched Caregiver

Me, my boys and my parents, 2006

I used to think my blog title was self-evident... The Squashed Bologna: a slice of life in the sandwich generation. Maybe even a little too on the nose.

But apparently not. I still get asked questions. "Why are you squashed? What's that 'Sandwich Generation' thing mean?" And I feel shocked, and if I take a moment to think about it, a little saddened. I've been living the "Sandwich Generation" life for so long now, I forgot that it might be possible to not know.

It has been so many years that I've been simultaneously caregiving for two generations (and doing pretty much nothing but that) that I can barely remember the time when I had just myself to worry about and care for, cannot fathom what it would be like to be innocent of my intimate knowledge of sandwiching, to not constantly feel like the meat squashed in the middle of the family bread.

The "Sandwich Generation" is the catchphrase much used by the popular media to describe people like me, who held off on their childbearing until later in life. So when our parents become elderly and needed us to step in, instead of having older, adult children who can themselves help out, we have young children still at home, depending on us as well.

Thus we are "sandwiched" between caring for the two generations at once: our parents AND our children.

In my case, this is ever more so, as my parents were - quite unusually for THEIR generation - older parents themselves. My mother was nearly 38 when she had me, and I, nearly 42 when I had my boys. (I'll spare you the math, that makes me a 52 year-old with 10 year-old boys and a 90 year-old mother in my care.)

In February of 2005 my parents moved back to New York City from Sarasota Florida, where they had enjoyed an active, happy and lively retirement for nearly fifteen years. I'd had my boys in 2002, grandchildren they wanted to spend more time with. But the stresses of travel were affecting them so that every time they came up to see us, Dad ended up in the hospital. It was time.

The other, unspoken, but clear imperative was that my parents really needed to be cared for, both on a daily basis around things like meals and medicine, and on the larger scale, like bill paying, doctors appointments, and decision making in general. All of which they had been thoroughly failing to manage on their own.

So, although they had moved into a senior residence with meals and "recreation activities" provided on site, they were effectively in my care to oversee all aspects of their lives. And chauffeur and accompany them wherever they needed to go.

And yet, at that time, I also had toddlers, my two and a half year-old twin boys, one of whom was beyond a handful all on his own, having just been diagnosed on the autism spectrum.

I would say a quintessential "sandwich" moment took place on Mothers Day in 2006. There were plans for us all to have a big luncheon together, along with my husband's family, which included his elderly mother, too. When I called my parents in the late morning to confirm that I would be picking them up in about an hour, my mother replied that they would have to beg off, as she didn't feel up to going out.

Further inquiry revealed that she was still in bed. Because she had fallen in the bathroom that morning at about 6 am. And, as she was in too much pain to walk afterward, she had crawled back to bed, where she intended to remain until she felt better. And could I maybe come see her tomorrow.

Um, no, Mom, I don't think so.

And thus I spent Mothers Day that year - yet only the fourth one of my life as a mother to that point - NOT with my darling boys, but with my parents in an emergency room. My poor mother had cracked her pelvis, a fact which it took them 10 hours to X-ray her and figure out, and then FINALLY knock her out with potent pain meds, so she could get some rest. My father and I were not so lucky, spending the night shuffling between the hard plastic chair at her bedside and the uncomfortable ER waiting room sofas.

One night, of many, many more - not my first, and hardly my last - in the ER with my parents; my husband putting our kids to bed on his own, waking them up in the morning and having to tell my sad, missing-me boys: "Mommy's still not here, she's taking care of Grandma / Grandpa at the hospital."  

Anyone who has followed my blog for any length of time knows that this past year, my mother been on a steeply downward trajectory, clearly entering the endgame of her life, hastened by her fall in May, wherein she broke her hip badly.

That very nearly killed her, and it effectively ended any last remaining shreds of her independence. Confined now to a wheel chair, she has had to move into a nursing home for the level of care she needs.

My heart is broken on a near daily basis as her mental and physical deterioration both proceed apace. I am watching her fade before my eyes.

It is both different from and similar to what I went through with my father, when he passed away in March of 2010. There was a both rapid and excruciatingly slow three months of torturesome leavetaking involved in that. But he was home up until the very, very, very bitter end, when we brought him to hospice to better manage his pain.

And he had my mother by his side.

My mother, for years, has been fond of repeating the saying "Growing very old is not for sissies" at the end of her long list of complaints, ailments and discomforts, usually followed up by a resounding "This sucks!"

When I reply, in turn "But it beats the alternative..." she has always nodded her head in agreement and acknowledged "I suppose so."

But these days she is sometimes answering "I'm not so sure, I'm just so tired, so lonely, I don't really want to go on."

I comfort her as best I can. I hold her hand, remind her of the grandchildren she so loves, who want her to stick around.

"I'll try to make it to their Bar Mitzvahs." she declares; a date three years hence. It's her goal now, less ambitious than their college graduations she had once promised to attend. But maybe, possibly, just on the outside chance, attainable.

And with much luck she will still remember who they are, when she gets there.

(I would like to add that caregiving for your elderly parents is not for sissies either. But it too beats the alternative. By a landslide.)

If you are a caregiver or know a caregiver who needs support, please visit aarp.com/caregiving for much caregiving help and information. This is a very useful site, a resource that I wish I'd had as I took on my caregiving role with my parents.

I am a member of AARP’s Kitchen Cabinet on Caregiving and Caresupport. November is NATIONAL FAMILY CAREGIVERS MONTH and I am helping to get the word out about elder care issues. All opinions/views expressed here are my own.

Running before the storm

Mom, Sunday

Sunday I was torn, yet again, between my mother and my children.

Any plans I'd had for the next few days were scotched by the coming of Sandy, a "Frankenstorm" of supposedly biblical proportion.

And this meant especially that I would not be spending Monday with my Mom at her Long Island nursing home, but instead in my home, holed up with the kids, as school was being cancelled. Furthermore, if the storm proceeded as forecast (and it did, as we all know, rather exceed expectations) it would be days and days before I could get out to see her again.

The choice was clear: Sunday or not until Friday at the soonest, if that.

My practical mind told me not to go. Driving was out of the question, as the mere possibility of car trouble, accidents, etc. stranding me out on Long Island for the week was giving me palpitations. But the subway and train option was not ideal either, as New York City's entire transit system was being shut down preemptively at 7pm that evening.

And yet... and yet... my heart told me to go.

And my gut.

Because as much as Mom does not consciously remember my visits, at some deep, other level, she knows. And it affects her in all ways, physical and mental.

Things happen. The initial fall. The middle of the night sink vs. face incident. The butter knife fiasco. These all occurred after a missed visit. They all happened on the rare occasion of there being more than a week's passing since I had last seen my mother. Or, more germanely, since she had last seen me.

So I feel that while she may not remember my time with her, something in her psyche does, and she unravels a bit, if that's missing.

Now this may be all malarkey. It might be coincidence. I may be borrowing guilt for no good reason. But what if I'm not wrong?

And then there's that other thing: what if I don't go and something happens during the storm?

So I fought with myself a bit; crowd-sourced my decision by posting my dilemma to FaceBook, but ended up, of course, taking only the advice that fit in with my gut feeling, unshakable, that this trip needed to be done.

And so it was.

I would have to time it very well. No chance to linger. I would have to catch my train home well before the last subway was leaving Penn Station.

(Such an odd concept to a native New Yorker: the "last subway" being normally non-existent in this, the city that never sleeps. I remember being shocked when I lived in Boston for a college summer to discover the T stopped at midnight, and equally appalled by Paris's dernier métro.)

Going out, I was lucky with the subway, a number two train pulling in moments after I'd arrived in the station, so I made my train with time for Starbucks (there just may be a god).

I arrived to find Mom playing bingo, a new-found pleasure she finds as embarrassing as it is enjoyable (she likes to win, my mother does).

And then, too, a brief visit from Uncle Walter - Mom's 85 year-old "baby brother" - who came bearing flowers, fruit and chocolates, as always.

Mom and Walter at the BINGO table

Owing her a manicure for many weeks running now, I managed to get Mom's nails done as she played, no mean feat.

"I love it when you do my nails" Mom always tells me. But getting her to remember they're wet and hold her hands still long enough for them to dry unmarred is quite another story. (I've figured out to do them one at a time. It takes twice as long, but is the only way it works without tears.)

Still, it's a tangible reminder that I've come, and this is a very good thing. "Your nails are lovely" everyone tells her, and she answers "My daughter did them!"

And then she remembers, she knows (at least for the next few minutes) that I was there.

Mom. Today.

Another day, another drive, another visit with my mother.

I arrive with a paltry cache today: no cookies for the staff no cake for my mother, no new clothes, no taking her out to lunch, no manicure, no courtyard nap in the sun.

Just myself, briefly, too briefly, but all that is possible today, and a wide toothed shower comb (two for three dollars at K-mart, the one I had bought for myself, as mom's had been pinched by her klepto roommate).

As ever she is surprised and relieved to see me, no idea of how long it's been since my last visit. It could have been just an hour earlier this same morning but that would be too long ago for her to recall, making it too long, so lonely long since my last visit; to her.

The tears stream down her face when I arrive, and when I leave, as always.

She has no memory of this week's visits, of last week's visit when I took her out for a drive, and to lunch in town at a Japanese restaurant. 

I show her picture proof and she is astonished: "Is that me?' she asks, barely recognizing her own image, the thinner, paler, diminished ghost version of any self she knew.

We have taken over the north-west lounge, my mother removed from the wheelchair, relieved to be ensconced on a vaguely comfortable sofa.

She wants to see more pictures and I oblige, scrounging around the iPad's spotty collection of photos I'd uploaded intermixed with images from the videos Jake watches incessantly on the thing. A thousand educational apps and all he wants is YouTubed basketball games from the 1980s. Knicks and Celtics, preferably.

Its always risky showing Mom pictures of Dad, of the two of them, together, looking so happy, robust and young, even if they are only from three years ago. The change is startling, terrifying. and she gets so wistful, so sad: "He wasn't just my husband," she tells me, who knows this better than anyone else in the world would, for perhaps the hundredth time, "He was my best friend."

Me, Mom & Dad, September, 2009

"Oh, Varda, I miss him so much!" and the floodgates open again. (But how much worse would it be if she started to forget him?)

Lunch arrives and I am once again facing off against a recalcitrant toddler. "I'm just not hungry" says my former food-loving mother, as she pushes the broccoli florets around on the plate.

But the mere act of my sitting with her pushes her appetite forward, if just a little bit.  And I resort to blatant bribery and outright bullying. Just like with my kids. "Come on, Mom, one more bite of chicken and you can eat your (rapidly melting) ice cream."

After a quick stuffing I take my leave. There are children to be picked up and dropped off, ferried about, and homework supervised and checked.

I know I'll be back on Sunday and Monday, but to her, just like my boys the first time I left them in someone else's care, it's the end of the world, abandonment forever.

I hope on Sunday I'll have at least one boy in tow. I pray that the phone calls I get from the home continue to begin with "Your mother is fine, I just called to discuss..." and never get darker.

Pop music floods my brain as I drop into the driver's seat, pushing out my tears, my sorrow, making the drive home possible, as Shakira serenades me and my car, like an old horse, seems to know the way home.

This Week, Cliff Notes version

The perfect visual metaphor for my week, courtesy of NY Comic-Con

There is so much going on, and I truly have no time to post, no mojo for writing but I didn't want to leave you all hanging. Thus follows the briefest of updates: a skim of the surface, a telling detail here or there and then, I'm off...

First and MOST IMPORTANTLY: Mom is home!  They wisely figured out that keeping her in a depressing place was not going to help lift her mood, and so sent her back to her nursing home Friday around mid-day, and I was able to arrive near simultaneously to settle her back in.

Of course with her short-circuited short-term memory, this may not have been strictly necessary, as within fifteen minutes of her return she was replying to warm greetings of the "Good to see you're back!" variety with: "What? Back from where? Was I somewhere else?" Groundhog Day all over again, as ever.

But still, I know part of the constellation of keeping her from spiraling into the pits of depression is frequent visits from me (and other family and friends). She may not consciously remember my having been there, but some part of her psyche knows, and it lifts her.

Unfortunately, if was yet another gray, chill day, so I couldn't wheel her outside into the sunshine she so craves. So it goes.

Those two visits to the mental hospital, further out on the Island, took about a year off my life. I hope never to see the inside of a locked psych ward again. (And this was a rather "nice" place.)

Gray Day, from LIRR train window

New York Comic-Con has begun, and thus with a husband "in the biz" I am a single parent for four days, Thursday through Sunday.  These days I usually only show up on "Kids Day" Sunday with the boys in tow, but Dan needed me to escort some nonagenarian participants to his panel this Thursday.

So I got to have a little preview of the show and stopped by the Aliens video game booth to get my picture taken (see top of post).

What else happened this week? (all a blur)

Oh yeah, last Sunday, the day I got the call about my mother's butter knife incident, we went to... The Harlem Globetrotters Game!!!!!!! It was awesome and fun and also annoying as hell because the Barclays Center has just opened and really, really didn't have their shit together yet.

Also my husband is more of a baseball than basketball guy - he is really, really not a noise and crowds person and baseball stadiums are OUTDOORS so the noise dissipates verses indoor arenas that amplify.

Which translates into it's going to be just me and the boys going to the Globetrotters when they return in February. (I think the quote from him was "Once in a lifetime is enough.")

OK, that's all. Getting ready to brave Comic-Con tomorrow with the boys. I believe Ethan wants to be Link again. Wish us luck!

Her way home

"I just want to go home!" she barks, frustrated, angry, bone weary tired. Then with a whimper and a catch of breaking tears: "Varda, why won't they take me home, now?"

Home. A shifting and shifted concept for my mother.

Home now is a nursing home; half a room; one dresser, one wardrobe, one nightstand and one small bookcase hold the sum of her worldly possessions, whittled down to a nubbin.

"I'm so sorry, Mom. You can't go home today, Mom." Holding her hand, leaning close, I try to break the news to her as gently as I can, for yet again the tenth time within the past three hours that we have been sitting in this, the intake office for the geriatric ward of a psych hospital.

"Why not?" she wails, distraught. "I just want to go home!"

"Mom, your home sent you here to get help; to make sure you're safe. Do you remember what you did?"

She stares at me blankly, searching her near non-existent short-term memory.

"You held a butter knife up to your throat at the lunch table and declared your willingness to end it all."

"Really?" She asks. "I don't remember doing that."

Of course not.

"Mom, you have to stop saying things like that. Then they'll send you home."

In spite of it all, as always, the sense of humor remains intact: on being told she had to stay at the psych hospital until she stops making suicide threats: "Motherfuckers, don't they know a butter knife won't kill you?"

(Yes, I'm a chip off the old block.)

Neither I nor the Psych ER team who evaluated her think she's actually a threat to herself or anyone else. But yes, she is deeply depressed (as her situation IS deeply depressing, with no end in sight) and she does need help to lift up out of it.

And so the nursing home, deeply concerned, has insisted that she ship out until she shapes up.

I understand it is their job to keep her safe. They felt they could not adequately do that, were afraid of the consequences of failure.  But still, I think there has to be a better way, one that will not disorient and frighten her so, on the path to saving her.

Hollow speculation, however, as this is our way now, her way.

No way around it.

Have to go through it.

Mom's going on a bear hunt.

To find her way home.

October Thoughts

Mom, on the last day of September

It's the first of October... and what will this new month bring? Certainly more visits to my mother, twice or thrice weekly, sometimes with a boy or two in tow, sometimes not. (This past Sunday, with.)

Mom & Jake on Sunday

The air took a turn for the crisp today, and I was so ready for that, as my thoughts are gliding towards the autumnal too: a little sad, the bitter mixed in with the sweet. These are the days of waning and I feel that in nearly all things right now.

None more so than when visiting Mom.

She is so diminished, I don't even know what to do with my feelings when I see her. I just try to care for her as best I can. I hold her hand and look into her eyes. We talk a little but not so much, the deafness being a barrier as well as the cognitive dimming.

I take her out into the courtyard every time I come so she can get fresh air and see the trees and flowers, birds and squirrels - what passes for nature in a paved suburban enclave. I massage her shoulders - feeling the muscle melting away, more bone and less flesh each time - and try to make sure she is being properly taken cared of.

But "Mom"? Pretty much not there any more. Just a sweet old lady with a few of her memories (and fewer by the day).

Ethan is a soccer player now

And yet there is also this: Ethan woke up earlier than usual this morning, at the same time as Jake. Unable to fall back asleep, he joined us in the living room, and instead of his usual cranky not-ready-to-be-awake self, was incredibly helpful with getting Jake ready for school.

Ethan remarked upon the still dark at that wee hour, pondered the breaking dawn. He also kept track of the time and kept himself rather on schedule to get ready for school, too. And that was just the beginning...

I had a trying day today. Literally. An Impartial Hearing is in progress with the city's DOE over Jake's schooling, and today was an in-session day. I obviously can't talk about any of the details of it, as it is... in progress, other than to say: it's about as much fun as you imagine it to be.

The hearings are in downtown Brooklyn, and we are keeping our babysitting down to a minimum these days, which meant that Dan was in charge of the boys this afternoon until I could wend my way back to the Upper West Side of Manhattan.

I came home to find quite a scene: Ethan was in the middle of patiently helping Jacob with his homework (had gotten half his own homework done already, too).

You could have knocked me down with a feather. If you are at all aware of the normally fractious relationship between my boys (just this weekend, for example) you will be stunned at the miracle this event represents.

And then? And then? And then...

Ethan made dinner for himself and Jacob. Nothing elaborate, rather basic - organic hot dogs grilled in the toaster oven, cut up fruit, baby carrots, bread / rice crackers. But still, he took the initiative,  volunteered, followed through. Incredibly proud of himself afterwards (and rightly so).

So maybe another thing this month that's autumnal and waning is a good thing: Ethan's nine year-old obnoxiousity giving way to some incoming ten year-old maturity. A mightily welcome October surprise indeed.

And I'll leave you with a little more bit of October:

A live performance from The October Project - an old friend of mine's band from the 90s. They're lovely if you've never heard them. Haunting alternative rock. Had a few albums out. Enjoy....

Visiting Mom

Mom, September 14th, 2012

Mom was far, far away when I came to see her today.

Sad,

sleepy,

lost inside herself.

She came to for moments, smiled as I placed a few familiar, much beloved objects into her hands.  But mostly she closed her eyes and drifted away.

Mom, dozing in the sun

I brought her outside, as I always do.

"It feels so good," she said, as I placed her in the warming sun. "I'm always so cold."

Mom, beautiful in profile

It's been hard since this latest fall. She has not been eating enough, her weight is down. She looks in the mirror and cries, not seeing her own beauty, finding only an old woman in a wheelchair.

I met with her team, we're making adjustments. They had her on a low-fat, low salt, "heart healthy" diet and needed my permission to take her off of it (as well as the doctor's go ahead).

This is one example of what is so wrong with our compartmentalized, knee-jerk medical system. Looking at the individual diagnosis instead of the whole person. High cholesterol = low fat diet.

I laughed because I didn't want to cry in that office. I was glad they were actually on the same page:  that putting a woman with a progressive heart condition who was clearly in the last year or so of her life - and who was losing weight due to poor appetite - on a restricted diet was beyond ludicrous.

It's all about quality of life now. We all agreed. Milkshakes are now on her meal plan. Ice cream sundaes. As much salt as she wants to make the food tastier.

And an adjustment to her medications to try to wake her up a bit.

I hope it all works.

I miss my mom.

I'm not ready to say goodbye.

Not yet.

I want more stories, a few more laughs.

To feel her shoulders relax as I massage them.

"Mmmm that feels so good." she said, patting my hand.

Before she drifted off, once again, to sleep.

Blowing my Own Horn: I was on Huffpost Live!

I recently got yelled at by a good friend for burying this news at the bottom of my last post. So here I am actually promoting myself... 

WATCH ME HERE ON THIS:

The backstory: This past Monday I got an email in the wee hours of the morning asking if I could be a part of a live broadcast THAT EVENING about Sandwich Generation issues on the Huffpost Live channel as one of three "community guests."

We would be joining their live guest Annabelle Gurwitch, who had recently written a post called "Sandwiched" for The Huffington Post site, via Google Hangout.

Well, in spite of being balls-to-the-walls swamped I said yes because well, MY topic folks, not gonna say no. And thankfully, Danny was home that night, no conflicting event so he could be point person on kidcare. Not that it would have been terrible if one of them had burst in upon me mid-broadcast, just would have underscored the "never get a break" nature of Sandwich Generation caregiving.

It was a great experience, a lively discussion, and my fellow community members - Taryn Mitchell, and Bette Scott - were lovely, lovely women. We had a lot to say to each other on the topic, and I think I may have even enjoyed our small private conversation while waiting for our segment to come up even more than the actual official one. (Wish I had found a way to record that!)

So watch, enjoy, and stop yelling at me!

(And yeah I AM terrible at this self-promotion thing, if I were really good at it I would be publishing this tomorrow morning at 9 AM for maximum traffic, but I have something else I want to post tomorrow so... oh well.)

Letting Go

Ethan's shadow on the wall of Mom's old apartment

There is so very, very much that I have to let go of these days... people, places, things; and also notions, ideas, old certainties worn out and surely ready for discarding.

The thought that my mother may live to 100, aging gracefully.  Gone.

The notion, put forth by some of his Early Intervention therapists that my autistic son Jacob would rapidly make up his developmental delays, easily integrating back into the mainstream by kindergarten, surely no later than 2nd grade? Long, long gone. Along with the notion of him ever leading a fully independent non-scaffolded life. Would take a miracle, that one.

I have let my body go, and my health, and this isn't ok for all the reasons you may imagine. I need to do something to turn this around soon. When I have the time. (So some time in 2015, perhaps?)

I have let go of my boys having a normal sibling relationship. (Not that I have any idea what that might be, anyway.)

And today?

I let go of my mother's last true home. Because a nursing facility, while euphemistically called a "home" is anything but. My mother now sleeps on scratchy hospital sheets, in a bed not really her own, her few meager possessions perched on and in some generic institutional furniture.

The big moving day with the truck and the guys was yesterday. Today I went back to do the final clean-up, sifting through what I was leaving to see what needed keeping after all.

Dad had been found on a shelf, up high in the back of the hall closet. I had to bring him home myself, did not want to pack him into a box entrusted to movers. Ashes are heavy. Did you know that?

I had to bring Ethan with me, the need to keep him separate from Jacob apparent from the constant unacceptable decibel levels whenever they were together.

So I couldn't even fall apart properly, with sobs and wallowing; had to give a quiet goodbye. One last wave to the room. Light out. Keys turned in.

Four boxes and five shopping bags in the trunk of a taxi later; move out complete.

So, all done with another thing I have let go: the last place my parents moved into together.
 

My mother's favorite chair, not taken.

Goodbye, Carnegie East House.

You were a good home to my mother, my father, assisting their living well.

(Sniffle, sniffle, stifled sob)

My Mother, today (with Jacob)

Mom & Jake

I know the other day I promised a short post and then rambled on and on. But this time I really mean it!

Neither wordless nor quite yet Wednesday, though, so think of it as Pithy Tuesday or some such. (Nods to Elissa Freeman, she knows why.)

Today Jake and I went out to see my mother, while my upstairs neighbors rescued Ethan from a day of video-game-and-TV-watching boredom.

He has such a terror of spending a day alone (not ALONE alone, mind you, but alone as in NOT played with, being pretty much ignored by busy working parents) and is rather vocal in his displeasure with such arrangements. Especially when they involve proximity to his autistic twin brother.

Ethan does not believe me that no one has ever died of such a thing as boredom, and claims he will be the first. I have tried the "bored children get chores" gambit, but there is no yard work here in our tiny urban apartment, and all other housekeeping tasks would require MORE of my time and energy to teach and supervise him in than to do them myself.

So he empties the dishwasher and then it's pretty much back to entertaining himself with expensive electronics. (The horror, the horror...)

But today, my neighbor (whose praises I cannot sing enough) knowing all too well herself the eldercare-and-kids sandwich squash, took Ethan on for the afternoon.

Leaving Jake free to train out to Long Island with me, to spend some quality time with my mother. (Taking the train because the morning had been spent bringing the sadly falling apart old car to our lovely mechanic* to get a new tire, among other things.)

And we did. just. that.

And I didn't cry because Jake was there and I didn't want to scare him, but I held my mother while she cried about how reduced and sad her life is now, about how much she misses my father. Each and every day.

"He was my best friend," she tells me yet again, tears welling up in the good eye, and the bad.

A pair, they were. Bonded in love and friendship. Fifty one years.

I hated to leave her, when it came certainly time to say goodbye. "This is what I look forward to now," she said, apologetically, gesturing to the bingo game they were starting to set up in the dining room.

"Your mother is a good player, she wins!" piped up one of the other residents, declaring my mother a youngster, she a sprightly 96.

Yes she is.

Yes she does.

90 on Sunday.

We'll be back.


*If you're a New Yorker with a car, I love, and am happy to recommend our mechanic. Talk to Ralphie of NY Prestige Auto Repair, and tell him Varda with the ancient green Camry sent you. He'll treat you right. (No guarantees, of course, but that been my experience so far.)

I am linking this up with my friend Heather's Just Write

Full Circles

"Tree of Life"

It's four am and I should be asleep.

I have a long day of driving ahead of me, up to the Berkshires in Western Massachusetts and then back home again.

I am taking Jacob up to camp.

It's the same special needs program at the sweet, wonderful Jewish sleep-away camp he went to and loved last year.

But still, sleep is not coming.

On top of everything else that is making me anxious these days, there is this:

Even though he went last year, even though he is a year older and his communication skills have jumped leaps and bounds over where he was a year ago?

My son Jacob is still quite autistic; still unable to reliably report on his activities; still as likely to answer "yes" to any and all questions asked of him, because he knows that answer makes us questioners happy, as opposed to trying to represent some sort of truth.

"Did you do math is in school today, Jake?"

"Yes!"

"Did you play basketball today?"

"Yes!" 

"Did you go to the moon today, Jake?"

"Yes!" 

(So my son is still an astronaut.)

And also, though he can say "I want..." this or that, will tell you "No, I don't like that!" if he hates something you've given him to eat or wear... still, he doesn't really know how to thoroughly advocate for himself yet.

I worry.

And I'm struck once again by how different my feelings were two nights ago, preparing to send his twin brother Ethan off to HIS one week sleep-away camp; the excitement, the certainty that he would be having a good time, easily able to let the folks there know what he needs, to take care of himself.

Twins. But so different.

<> = <> = <>

On road, in the early morning of what is sure to be a beautiful day, Jake is in the back seat and we are listening to pop music on the radio.

Driving up to New England, the highway passes through the Riverdale area of The Bronx; means I pass right by the exit I took to go see and take care of my parents for two years, in this, their old car, now mine. Today the exit sign for 254th street brings my heart into my throat, tears burning my eyes.

My mother so diminished and frail now, hurting and in the hospital. I am contrasting that with visions of my parents when they first moved here, back from Florida together, the two of them. So much younger, so full of life in 2005.

Seven years.

And he is now gone and she is in the endgame. And my children are now ten, double digits; on the precipice of launching into teendom. Life flowing in two directions all around me.

<> = <> = <>

It has indeed turned out to be a beautiful day, the finest of this whole hot miserable summer. I am sitting on a bench in the outdoor sanctuary at Jacob's camp. In the place where, as 14 year old, I had lain a mosaic; now long gone, replaced by a lovely tree of life ark.

This camp has changed over years since 1974, yet also so much remains the same. Walking past the old red barn, chills ran down my spine, memories shuffling past. Last year the special needs camp was held at this camp's sister location nearby. But this year: here.

Last year the opening ceremony was lovely, but did not evoke the past.

This year I sit in this exact same spot as my fourteen year-old self, and past and present swirled together like the light and dark sections of a mixed pumpernickel bread. As we sing the the words of the prayers, my arm around Jacob who is leaning deep, snuggled into my side, I am crying.

Growing up in non-religious household, going away to this camp at fourteen was the first time I was really exposed to Hebrew and prayer. That one summer, four and a half weeks, really, have remained a deep & meaningful time, are a part of shaping who I am.

Not particularly observant now, there is still, somewhere in my core, a rooted sense of Jewish self, an unshakable identity. And I know my one month here at Jewish sleep-away camp instilled that.

People have asked me why my near fervently non-religious parents had sent me here, of all places. And there was the official, and I'm sure true reason: I had always wanted to go away to camp, they wanted to give me what I wanted before it was too late, and this was the cheapest camp they could find.

But I also have to think that they somehow knew, maybe even subconsciously, that I needed this, needed to belong to something larger than just myself and my tiny nuclear family.  

And now I sit, my son at my side, my mother in a hospital bed, physically distant but ever on my mind. And in front of me, in this sanctuary, is a beautiful, sculptural Tree of Life.

A visceral image of what I sit in the middle of every day, these days, caring for the young and the old. Looking backwards and forwards.

But today, trying to be just here. In and of this moment.

And then my son hops up, heeds the call for campers to make their departure. He plants one more kiss on my chin, runs up the hill to the awaiting counselors. Just when I think he's off with nary a glance back, he turns, offers me a big smile and wave and happy "Goodbye, Mom!" shouted at the top of his lungs.

And he's gone.

Jake waving goodbye

I am linking this up with my friend Heather's Just Write

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.

Vacation plus Reality, with Pictures

A beautiful morning in Great Barrington

We are here on vacation, in a setting so idyllic it makes my heart zing every time I open my eyes and look around. My in-laws' beautiful Great Barrington house.

Boys actually playing together in pool = big win

And yet it is impossible to just relax and let myself be transported, for I am tethered to so much (phone calls, phone calls, phone calls about my mom). I didn't even make it into the pool yesterday. Though the boys did (all three).

3 guys in the pool

Coming back here, year after year, we have developed some traditions.  I spend as much time barefoot as possible - and take a picture of my feet in the grass, to remember this time by. Check!

I took some lovely portraits of the boys:

There was the 3rd annual watering of the car, an anticipated event now. This year Ethan did not fully join in, but he helped Jake fill the can. Cooperation at its finest. And the old beast is (marginally) cleaner, so there is that.

We had our walkabout in town, replete with a foraging session at the candy shop and a tour of Toms Toys, the lovely independent toy store on Main Street. I remember buying them Thomas trains there. (How fast they grow up. Sigh.)

Spinning the pinwheel outside Toms Toys

We found a local ball field and the guys had a game of catch. Thank goodness there was a basketball court there too.

Indoor diversions? Screens screens screens. Plus a 500 piece World Map puzzle Ethan and I worked on for 3 days. The Indonesian islands nearly killed us, but we got it done!

And then there is the new...

A this Greek restaurant, Ethan ordered the grilled SALMON off the kids menu and proceeded to eat it and ENJOY it. Anyone who knows what a picky and stalwart "kid food only" eater Ethan has been over the years is now probably thinking I was hallucinating at last night's dinner.

But no, it was real and he was thrilled that we were thrilled. As Jacob likes salmon, too, this means there is now something I can actually cook for a family meal that is healthy and everyone will eat. Not having regular family meals, the way I did growing up, the way I assumed I would in the family I created is a never-ending source of guilt and sadness for me.

This will make it easier to achieve, at least once a week. Salmon. Whew!

Ethan awaiting incoming ball

Underlying and overlaying all this classic vacation stuff, however, is my mother. All that I have to do for her in the next few weeks is a weight on my shoulders. How lonely she is in this week without my visit, a stone in my heart.

Compound that with feeling so sad and guilty that we never brought her here on vacation with us. Last year would have been the perfect year, after my frail and unmovable father had passed, yet when she was still hale enough herself to travel, to swim. Now is too late, she is so diminished.

I spot a hummingbird flitting amidst the morning glories outside the kitchen window and think "Oh, Mom would have loved to see this!" I would cry and cry about it, if I didn't need to make breakfast and put on my happy face for the boys.

Watching the kids cavort in the pool whilst in my PJs? Priceless.

So this is us on vacation. Just trying to have a little fun. To not think too much. And I'm determined to rest up a little bit before the shitstorm of caretaking that's going to hit upon our reentry on Friday.

Wish us luck, once again. Thanks.