And now. . .

Mom was readmitted to the hospital yesterday, taken from Rehab, which for the last week has been more housing than therapy, back across town to where she had the emergency surgery for her spinal stenosis on Tuesday, July 24th.  Her pain was unbearable by the Saturday before, which so happened to be the 9th anniversary of my father’s death, although I have no evidence that she consciously remembered this.  Since then, she has been to two of the three hospitals that he was in during his final ordeal.

By last night, through a series of MRI’s, she was on a morphine drip for a slipped disc, for which they have decided no additional surgery, and the plan as I understand it is for her to go back to Quillen Rehab for another try at therapy, this time with a different pain relief cocktail.

I am not calm about this.  I want to be.  I want to just let it go, let it go, let it go, create spaciousness around it and be nonreactive.  However, it makes me crazy.  I feel wild.  Underneath this calm exterior, I am screaming.  And, at this point, I’m not even sure why; not sure I can articulate it.

Except.

Here she is, in this body that is deconstructing, one piece at a time, and I want somebody to do  something.  Since the beginning of this particular episode (where was the beginning?  What do we count as the beginning?) this has felt like a cascade, and that has proven to be the case, and it feels to me that it is accelerating, that there will be no relief, that we are headed diagonally and jaggedly South, that our lives, those of the people who love this woman,  are going to be ragged for quite some time, long or short, it doesn’t matter, it is going to feel like an agonizing eternity.

That is what happens in these cases.  Or at least that is my experience.  I remember going to the hospital day after day when my father was “in care” as they say in British novels.  I may have told you this but I remember driving to “Cow and Coffee” the little locally owned shop that I clung to as my home away from home, where I ordered my afternoon mocha and sat with my journal and my newly acquired Power of Now. I remember driving away from my father’s room where he lay silent on that ventilator, in a state of deep. . .something.  I would look out the driver’s side window at all those people going about their “regular” business.  And I would look in my own window at myself, and hear “there is a woman whose father is dying who is driving to coffee.”  Or when I would be eating lunch, “there is a woman whose father is dying who is chewing tomato,” and on and on.

The center of the Universe had collapsed to the black hole that was my father’s hospital room.  And now?  Now it has done it again, and is centered on my mother, as she oscillates back and forth between hospital rooms at Quillen and at Johnson City Memorial and back again, hooked to machines and to pharmaceutical concoctions, tended the best we know how by people who know her and people who don’t, in concert.

Her personality shifts, as do her pain levels, and we can’t see inside - really - to see if any curing is happening.  Meanwhile, her past disappears.  Any tentative hold she may have had on family memories evaporates with the drugs.  She can’t conceive of, much less hold on to any notion of the future and what that might hold if she can just muster up enough faith to get there; faith that there is a place where she might not be in pain, as she has been for years, where she could go on trips with her church, recognize and enjoy her children and grandchildren, walk down the few steps on her back deck to feed her birds.

Maybe this will change.  Maybe there will be the magical combination of drugs and clarity and a miraculous injection of oom-pah-pah that she will engage a gear that we are all desperately trying to set in place as a possibility.

It doesn’t feel like it right now.  It feels like she is on her way out, inexorably.  And maybe that is why I feel like a wet dishrag.  A screaming, wild wet dishrag.  I want to reach across that mountain and shake her and beg her to take hold.  And yet, there is part of my body that shares her deep, deep fatigue.

What is wrong with leaving? I have advocated it for years, for myself, electively.  I have said out loud to the consternation of dear ones nearby, “If there is any way to achieve it, I want to have the means to leave, early on, while I still have full faculties, when I have the intuition that my work is done.”

A common cry these days.  Like most who think about it at all, I don’t want this messy, incredibly expensive, technologically impeded, horrific departure.  It isn’t necessary.  It isn’t desirable.  It isn’t respectful. It isn’t moral.

I hope I’m wrong.  I hope that is not where we are.  But it feels like it.  It feels like we want emergence from this into a brighter future more than Mom does.  We have more energy than she does.  To us, in different encasements, not 89 years old, not having just had surgery, and now with a slipped disc, and not in that kind of pain and drugged and and and, the future inherently feels bigger, more hopeful, more real. The future here, I mean, embodied.

. . .Oh, my goodness.

. . .I just reread that paragraph. . .Maybe that's the answer.  Maybe that's what I need to let go of.

Maybe Mom wants emergence from this into a brighter future just like we do. . .

Maybe that is where I can rest.

We'll see. . .

While we were gone. . .

you and I, zeroed in on a hospital room in Tennessee, Life at Briarpatch continued. . .

The Malabar spinach twined up its supports:

The grapevine hugged its trellis:

The pears swelled and began to blush:

And the rudbeckia gave its all:

It doesn't seem possible, really, as you head to the same elevator, to go up to the same room, wondering/dreading what you'll encounter this time, as you push through molasses to get dressed and do it again.  It doesn't seem possible that that spinach could so easily continue its journey, those grapevines continue to reach so effortlessly for the sun, those pears to just be so pear-like, kissed and blushing, the flowers to offer themselves so fully; all of it unhinged from, unaffected by this drama that seems to require so much more than  one has to give.

I come home to heal, to stand in the garden and marvel, to cut back some of the growth that just went on and on, while I spent the week struggling, from one moment to the next to just let go let go let go. Where periodically I would be surprised to feel the blood in my veins, to feel genuine hunger instead of just a need for more energy.

There was a baby hawk on the front feeder while I was gone, John told me, still wet, uncertain of how to stand there, undecided as to what to do next. John kept the hummingbird feeders cleaned and refilled, and now there is a new batch of these magical creatures, even tinier than their tiny parents, zipping and unzipping the air as they speed toward each other, unseating whomever is on the perch.

All this life, while Mom lies in the bed.  What does she want?  Does she want to be here, meaning alive at all?  Is she too tired at 89 to make the effort? We don't yet know.  When the anesthesia wears off, in a few weeks, when her surgical pain is diminished, maybe she will know, maybe then we will,  Meanwhile we wait.

What a grand waiting room. . .

Sunday the 29th - we're headed home. Mama isn't.

I don't know how to describe yesterday.  Words fail me.  That is fine, really, as we are leaving this morning. (Thank you Laura for really having to be in the office tomorrow and for Mom believing her, at least temporarily).  

I called early to get Mom's schedule for the day, so we could get there while she wasn't occupied with occupational or physical therapy.  Overnight caregiver Sandy told me she had slept well, good to hear, as that had been a problem. We got ourselves together, slowly, as by now we are moving through molasses, and got there late morning.  She was sound asleep, so asleep that when the OT Sweet Thang Adam came to get her, he said he would reschedule her for later in the day, just let her rest.

We waited around for awhile, catching up, watching her sleep like I remember doing with my son, rather in wonder at the Universes contained in that body.  We learned that she didn't have the clothes she needed, and there were other things that needed doing at her house in Greeneville, 45 minutes away.  Leaving the day sitter right there in the chair beside her, we left to get lunch and do the external chores.

The external chores took a little longer than we thought, as we decided to put one of her lights on a random timer, not knowing how long she will be completely gone from her house.  That meant a trip to the hardware store and then figuring out how to adapt the plug in her 50-plus year old house. We also figured out the day would be immeasurably improved if we stopped at a little gourmet chocolate shop in Jonesboro, and we could bring her some too.  We kept the caregiver informed and worked our way down the list, filling her birdfeeders, hiding her checkbook (not very well - burglary may not be a career choice for either of us), gathering up mail and newspapers. By the time we walked in with Starbuck's coffee for everyone, clothes, chocolates, books, magazines, papers, mail and an uncanny sense of foreboding, it was around 4 p.m.

She was livid.

"I hope nobody ever does you the way you have done me," she said, her eyes flashing and her face set in stone. Her daytime caregiver yesterday, the meekest of the rotation, shrunk back into her chair.  I knew immediately what she meant, but also knew I knew more than Mom did why she was so furious.  And because of that I also knew her feelings were completely unjustified, in my world.  They made complete sense in a world that has no past nor future connected to it, no context.  

We had abandoned her, after all she had done for us.  This was unforgivable, obviously.  She refused to talk about it; chose glaring instead, no matter our telling her, calmly and quietly, more than once, where we had been, as we unloaded bag after bag of the evidence.  

"I hope you never have to go through what you have put me through," she said, again, and again, after what I suppose were suitable pauses for emphasis. "To just leave me like that, just because I was asleep!. . ."

"That's fine," I finally said, after the third round of explanation was not melting the glacier stuck in that bed. Smiling (wearily I'm sure), I simply said, "we don't have to stay.  We can get all this unloaded and just go on.  That's OK too."  

That helped the tiniest bit, then lo and behold she was hit with leg cramps, which she needed somebody to massage. Laura had somehow slid further into favor already so when she offered to rub her legs, she was given permission and started in.  The Goddess was with me and when it was determined that bananas would help, I immediately grabbed the car keys.

I took the long route to the grocery, driving in complete wonderment at all this.  Perhaps I was and am delirious, but I realized her state of mind in receiving all this doesn't alter one whit what we are doing for her or our willingness to do it.  This is all rooted in something far deeper than gratitude or frustration or god-knows-what. . .

By the time I got back, with bananas and another meal for the caretaker, my sister had worked wonders, or the pain medication had, or time.  Mom smiled at me as I came in, and immediately said no to the bananas.  She said she was "overwhelmed with bananas."  

OK, that's fine. . .Lordy. . .

She had to go to the bathroom (I promise I'll make this part short).  The orderly that came to help her was a bit of a hunk and she was quite impressed although we didn't know that until later.  The drill is that she puts her arms around his neck and he leans in and puts his arms around her middle and hoists her up and into the wheelchair, takes her into the bathroom and when she's done, we do all this in reverse.

After she was back in bed and he had left, she said, "there sure are some good-looking men around here. I don't know what the protocol is.  I don't suppose it would do to kiss them while they are lifting you off the commode. . ."

We leave Johnson City for home this morning.  I'm already partially packed.  I can't thank you all enough for taking this journey with me.  We aren't done by any means, but it has helped so much to have this means of reaching you, and it has helped far more than I can express to have you reach back. . .a sustaining web for sure. . .

All blessings all around. . .

Mama News on Saturday the 28th. . .

Well, it wasn't pretty, but its done.  It took two large policeman and an afternoon of rerouting her worldview, but we got Mama moved yesterday from the Big Hospital to what she has already decided is the first circle of Hell. She is now in a shared room at the James H.and Cecile C. Quillen Rehabilitation Hospital parked on a knoll just above, it turns out, Laura's and my favorite Escape Restaurant.  We were there last night, PTSD, and when they didn't have a table, we fell into cushy leather seats at the bar.  They felt sorry for us and fed us. We took our shoes off and balanced our plates on our laps.

Yesterday afternoon was our second try at figuring out why when the rehab representatives came by her room at the Big Hospital Mom was determined they were not going to sell her a car.  

"What are they trying to sucker you into now?" she would say in a loud voice, each time she found out it was a Quillen representative in the room.  She would refuse to answer any of their questions, turn them over unilaterally to me or to Laura, then afterwards, every time, there would be at least thirty minutes of her telling us nobody was on her side, everybody was making decisions for her, and that we were essentially fools for buying what these people were pushing on her.  "If you don't want the car they are selling, you don't have to buy it," she would say.  The analogy worked for her far better than it worked for us, but we finally got it.

She didn't quite understand (or didn't want to accept) that rehab (translation:  exercise) was the next stage in All This.  Part of the problem is that All This is not one reality, as one might hope, but rather a collection of realities, varying according to when she had her last pain med and how recently we have both sat by her bed, one on each side, holding her hand. Regardless of how she is constructing How Things Are in the moment, what she unilaterally has yet to remember is that she was in excruciating, uncontrollable pain for weeks before this emergency spine surgery was scheduled.  She doesn't remember the years of back pain before that.  She told us day before yesterday that she was just a "little fatigued" and then they came and made her do this surgery, without her permission, that no one has consulted her, and that now she was in pain.

Bless her.  It must feel out of control, this life of hers.  It is, in a way.  Periodically, after we have been talking for awhile, she will admit that Dad made all her decisions (true) and that maybe she just got out of practice (also true).  This is after Laura has pointed out (again) that she turned over the decisions to one of us, and that we were just doing what she asked.  She can't drive anymore, she can't hear, she hasn't even been able to step down the few steps to her back patio to feed the birds she so loves.  She hasn't been able to go to the library or to church.  (Abby, the Minister for Seniors let it slip the other day when she came to visit that the Senior Minister, the Big Kahuna, is a little scared of Mom, so Abby comes instead .My guess is that she has told him one too many times, that no thanks, she didn't really want to pray with him.)

What we are finally getting is that all this is about choice, somehow, and about having some control over basic parts of life that are slipping inexorably away.  Quillen is not about choice.  Quillen is about getting her better so she doesn't have to spend the rest of her life in a nursing home.  That piece of the whole thing, regardless of how many languages we've used to try to translate it to her, is not sinking in.

We are all scared.  She is allergic to exercise and Quillen is all about exercise.  They are positively perky about exercise.  Mom is a Taurus; a 183-pound, 5 foot 2 Taurus with an attitude.  

I have already called over there to talk with her overnight sitter.  It is now 8:30 a.m.and supposedly my mother, who doesn't get out of bed - ever - before 9 a.m., is supposed to already be thirty minutes into occupational therapy, followed by physical therapy, followed by occupational therapy. . .you get the picture.  

Well, I guess I better quit being such a chicken and get my clothes on and get over there.  Maybe with all the dear prayers you have been sending, Laura and I will discover the Other Mother, the one who joked with the big policemen who came to get her yesterday, who waved like the queen as they were wheeling her out of her room on the transport stretcher. Mama Number Two who charmed the intake nurses at Quillen and agreed with them that yes, this was going to be a very nice experience indeed, that she had been looking forward to it. . .

Lordy. . .

We come home tomorrow and one of my brothers takes over, while we sit and stare into space for awhile.  I'll keep you posted. Thank you so much for doing the same.  I have appreciated the groundwire. . .

July 26th and Mama. . .

I don't know how Mama is this morning, as I have yet to get my act together and get over there.  As of last night, when Laura and I left her, she was mad.

It is not a matter of reading between the lines to figure out why, because there are not straight lines.  It is more a matter of discerning potholes through a shifting fog.  I think mostly she is mad because she is 89, although Laura said she said, while I was out of the room trying to negotiate getting her house cleaned, that she perked up when she realized her skin didn't look so bad for somebody that had been using it for "almost 100 years." 

She's right.  Perhaps a steady diet of Fig Newtons is the way to good color.

Before I left home, before the emergency part of this jerked me across the mountain, I ordered three books from Amazon to help me deal with the latest Mama chapter.  As I recall, they have titles something like: 1) There's Really No Way to Prepare; 2) This is Going to Be You Someday, No Matter How Many Supplements You Take:  and 3) Just Get Through It.  I don't remember what they are called, and they were delivered to my house probably just after I roared out of the driveway, cellphone tuned to the surgeon's office, prepared to beg.

I didn't have to.  The compassionate man, when he heard her latest symptoms, moved whatever it is you move around and "worked her in."  This was because the day before, she had lost the ability to walk, was in pain which could not be controlled, and had lost control of her bladder.  

She doesn't remember any of this, is mad because "people" made decisions for her without consulting her and if she wanted to die, well that was her business.  

Where do you start?

I started with a long, deep breath, because what I really wanted to do was clobber her.  I was sitting on the side of her bed, propped up with a quadruple Americano and Visine, holding her hand.  This was at the end of the third full day of this customized version of General Hospital.  I had just gotten off the phone after dealing with caregiver politics, had cleaned up some family politics that insulted the doctor, and I was ready for, let's just say, a change of planets.

I looked at her and smiled, which helped me not say what immediately came to mind.  Another deep breath.  She is so dear.  She really is, and I may have still said it a little strongly, but I just reminded her of Sunday and Sunday night and Monday and the trip to the ER for pain, and not being able to use her legs. And it was OK if she didn't remember, and it was OK if she wanted to just ease on out of here.  Understandable.  Sweet sister Laura, on the other side, chimed in with her side of the chorus, that she had had major surgery less than 24 hours before, that this pain was different than the pain she had when terrorist bone growth zeroed in on her spinal cord.  That we needed to just take this a little at a time.  It was OK.  It was really OK.  This was progress.  She was safe.

We all breathed a little more deeply. Laura asked Mom if she wanted a clean gown as her dinner coffee had gone awry.  "We're going to get you dressed up," I told her.  Smiling, she asked if she could have some perfume.  The nurses were able to find a lone bottle of Johnson's Baby Lotion that someone had left, a treasure.  We massaged her hands, her arms, her legs, her shoulders.

We had all come back to a less chaotic orbit.  A good time for us to leave.  Well, there is no good time, let's say opportune time, a time when we would be in marginally less trouble than other times.  Laura and I have done this tag teaming before, and we know one of the first orders of business in whatever town holds the hospital that holds the reason you are there is to search out the good restaurants.  The really good restaurants.  

Over a lovely meal, in a darkened room with white tablecloths and a perky waitress that wants to move to Asheville to pursue her dreams, urgencies receded.  By the time we shared the rosemary caramel truffles and speculated whether the gay date at the next table had gone well, there was a bigger life than Room 6408.  

Thank all of you for being part of that Bigger Life, for sending me news from that Life, for just hearing your voices in all the dear forms in which they have arrived.  Mama is better for it, honestly, and I know I am. . .

Much love. . .

July 25th and Mama. . .

The synopsis:  Mom made it through the surgery, is in a hospital bed about a block from this Hampton Inn, being circled by nurses I'm guessing. The surgeon described two of her vertebrae as being occluded with extra bone, pressing on her spinal cord.  She had been in accelerating pain, and as of Monday morning, all agreed she couldn't wait until the 31st, when her back surgery was originally scheduled.  So all over the place, plans were moved around, suitcases packed, OR's booked and here we are,  Johnson City, Tennessee, about 30 miles from her house.

I won't go into the details of my sweet mama throwing things at the caregivers, or that she asked me who I was when waking up from the surgery.  Or that we are at one of same hospitals, during the same time period when we said goodbye to my father nine years ago.  I won't try to describe the fashion scene, where evidently in Johnson City, Tennessee, it is de rigueur to wear one hospital gown forwards, another backwards and your flip flops as you escape to the parking lot with your cigarettes. My Mama quit some time ago, thank goodness. 

We will know more as time goes by.  Right now, it looks as though she will be in this hospital for another couple of days, then transfer to a rehab facility close by for maybe a couple of weeks.  Not sure when I'll be home, I need to be upfitted with more vegetables already, fewer power bars.  

I would be so grateful for prayers for Mama and notes to me of a part of the world that doesn't revolve simultaneously cherishing and letting go.  Well, maybe it all does, but I'd appreciate notes all the same. 

Love, blessings, and appreciation all around for your sweet caring about this,