OK, enough is enough. dementia and surgery aside? Blah blah blah, I'm getting tired of myself!!!
Me and Rex -- this must be late 80's (apparently when i was a boy)
I've gotta get out of dodge and try to get a clear picture of what/when/how I'll finish MY work.... What better than a little escape to the Montreux Jazz Festival. Some of you may remember my blissful journals about one of my favorite places on earth. I have played there a few times, -- opening for Paul Simon and debuting the songs from "The Works" with Nora Guthrie in the audience a definite high point.
Often I am there as a fan, cheering on my husband's clients who also play there regularly. It is breathtakingly beautiful on Lake Geneva, you look across to the french Alps and Evian, my favorite water source! The festival itself is on a technical and hospitable level no one could ever touch. I treasure my days there, and come hell or high water, I am going.
This year is Tommy Lipuma's 75th birthday. He signed me to my first two record deals, but also has produced some of the most beautiful records of our time. Diana Krall, George Benson, Natalie Cole, Joe Sample and Randy Crawford, Miles Davis.... the list is really ridiculous. My husband has organized an evening in his honor with many of the artists he has worked with along the way. Hell, I think even Dan Hicks and the Hot Licks, and Doctor John are going to be there!! Oughta be quite a party.
I am crossing my i's and dotting my t's (yup, that's how tired I am) I have called in the reinforcements, made back up plan after back up plan. Written out careful instructions, listed every single quirk and precaution and medicine and prayer. Life, I am told, must go on. My mother, if she were still completely there, would have it no other way. She still, when that lucid part of her surfaces will say, "You must have ten thousand things to do, I don't want to be a burden, now GO!" This of course could follow a weepy "Don't ever leave me. Not even for a minute. I need you." (oh my heart)
So here I go. Calling all angels to keep her and hold her safe.
I think that Rabbi really got under my skin!!! I ain't afraid of NO work!!!
I'm not really afraid of that many things. But work that never ends? What the hell does that mean. Don't take a break, don't complain, no fun at all?
I don't think so. After I saw that I went straight to my favorite place... (I had the night off) and had a really nice glass of wine! What the hell. Rabbi Natan, I'm all for nose to the grind stone and no whining, but come on now.
I came back and Julie had concocted a new reminder for mom, who, oh, every minute or so will say: "Now what was your name again?"
Julie just clipped it right into those curly locks. And mom still asked, oh, every minute or so. But we got a wicked good laugh out of it.
Yesterday we couldn't even keep up with the mood changes.
I tried with poetry, silly songs, the Bible. Julie just muscled her through with happiness and joy.
me: "Let's leave yesterday for the good of tomorrow, mom."
She loved that. I wrote it down in big purple letters and set it in front of her.
mom: "That is the most beautiful thing I've ever seen. Can I use that in my next book? Of course I would put your name on it..."
And then, tears. So i made up a little ditty to stop her cycling and cycling over that "ghastly thing that happened."
me: "no more darkness, no more tears, looking forward, no more fear
all is well and all is good, God is in the neighborhood."
mom: "no, it's "God is in YOUR neighborhood."
me: "Ok, perfect."
She is wearing her new slippers from L. L. Bean. Still keeping her red bag close, in case we're going "home." She's got her Roseburg, Oregon apron on!!! She is beginning to eat, although, she will hold out for ice cream just like a three year old. She is walking, (although she would never admit it) with so much less pain already. Steady on.
Your kind kind wishes are such a buoy. Thank you all.
Mom is still super unsteady with her walker. It's a combo of the toxic anesthesia that will still be leaving her system for months, the vicodin that we are giving her to try to keep her comfortable (a more unreliable witness to her own pain I have never encountered) and her particular charming form of ADD. She is so easily distracted that her hands will fly off the walker in mid step to fondle her treasured red bag, or another pile of her scattered poems.
Anyway, she fell yesterday. It was bound to happen. We've all been prepared, dreading, ready. I have told my caregivers that none of us can be perfect, and that we should do our best every moment but she may fall at some point....
I ran in right after it happened; she had just bumped backwards into the table, the conked her head, but all in all gone down straight. She was lying there quietly, pondering. Strange, as her back and forth between giddy and disconsolate has been constant. I swear for a moment I was hoping that a good bump on the head might just magically re-set her to "normal."
She seemed fine. No new pain, no new complaints. Scar intact. I got a pillow under her head and had to keep telling her to stay still for a few minutes. "We can just rest here for a while, mom, let's catch our breath."
Poor Abi was crying and feeling terrible that she hadn't been able to grab her.
Mom looked up, her eyes suddenly very clear, and with a strange authority said, "It's ok, I don't want you to cry. I'm fine."
For days she has been in an existential black hole. "I need to know who I am. And the pain is just unbearable." She cries and clutches my arm, - "Don't ever leave me, I love you." And then, in this truly scary moment, "real" mom surfaced and comforted Abi. Pure motherly instinct intact.
And somehow, she has already parked the "event" in a spot in back, and never mentioned it again.
How does she do it? Like coming up for air and then diving back into the sticky murk.
We mustered through. I troubleshot, wrote letters, called, pushed, pulled this time, to try to get mom a little kinder of a ride through surgical hell.
Truly the only thing different from last November was my being prepared for each excruciating deja vu.
You can't explain. You just can't explain. Even though this person, my mother was fully on board, begging for medical help with her pain, once there, waiting for the "doctor to fix her leg," there was no way to explain what was going to happen, how, why. Each tiny step that you or I might not blink at? Torture. Simply taking her blood pressure? A terrifying ordeal each and every time.... and in a hospital that can be 10 to twelve times a day. "No, mom, it's ok, it's just the squeezy thing they put on your arm; it gets tight just for one minute and then lets go." EVERY TIME.
That being the case for the blood pressure cuff, imagine explaining the daily blood draws, especially to someone whose veins have gone into hiding. One day it took five RN's and two aides an hour to find a vein to draw blood to check her INR level.
When both of her IV's went bad in one evening and she needed a little something? You get the picture.
But she continues to surprise me. The third day, out of the blue, (she hasn't read a newspaper in years) she said, "I was reading the paper this morning and there apparently have been some very serious and unpleasant things going on in the cities around the world. It's not surprising really, but it's discouraging for sure." Then she plotted her escape route on a napkin. Every time a nurse or aide would come in she would put on a good show, do her best. Then glare at me, hissing "we have to get out of here, this is a dangerous and illegal place. And we are smarter than these people."
The PT's in rehab were my saving grace. They were so lovely and patient. Melissa and Susan, THANK YOU
Mom and Melissa
Mom and Susan
And then, all last Friday, unsettled air. All day I wished and wished for a rainbow, some magical respite from our reality. Late afternoon, there it was; we could see it out of mom's window. We danced around the room making wishes, trying to get her interested. She was the one to notice a tiny trace of the second rainbow above the first. We sang "somewhere over the rainbow" and clicked our heels.
And she got through. She is so strong. She is home, still disoriented and still plotting to "go home." Still not quite sure what happened, reeling from a new kind of pain that she doesn't understand will get better. Belligerent about having to exercise, no idea that it's in her/our best desperate interest to keep her mobile so we can hope to continue to care for her the way we have. - Not surprising really, but discouraging for sure.
It was HOT yesterday. We ventured out, but any excuse to go into a store was good enough for me. There was this brilliant installation of hand painted coffee cups in one window. And more were being painted as we watched and oggled the beauty.
Her name is Gwyneth Leech, Her blog is "Gwyneth's Full Brew! The installation was called Hypergraphia. I believe it was just a four hour event yesterday. But wowee. While we were there she got another idea...
We only made it another two stores down before the heat overwhelmed us. (Me and my 'step-daughter' Lily. Step-anything sounds so icky, so she just calls me "Dad's main squeeze." And I call her...Lily)
Anyway, we decided to stop in to a nail place and got some funky toe nails. Baby Blue for me, Lily's are more like a metallic midnight blue/turquoise you'd see on a fancy car. Perfect.
(Ysolda was at Squam Arts Workshops and was pretty damn awesome!)
We persevered but by the time we hit 73rd we were feeling pitiful and weak, so we had to stop for the perfect mochachino.
Via Quadronno, hands down!
Stay cool, and in case anyone is following the New York kooky news cycle. Just remember not to twitter pix of your privates ok? Is that really so much to ask?
Without Julie I would be sunk. She is tireless, beyond loving, patient, and very funny. She has weathered as many arduous stretches as I in this journey with my mother. Yesterday we were consulting with doctors, stocking up on meds, and getting our ducks in a row for the surgery scheduled for next week.
We went to "Total Joint Class" (I know, sounds like a course at Hampshire College!) at the hospital, just so we could pepper the team with questions, and try to push them to understand something of the reality of getting someone with dementia through something they do not understand. Of course, we encountered the usual passing of the buck. No one wants to commit to helping, they will always put the onus on the next department. Even armed with the fresh experience of last November, we were expertly blown off:
PA: No, orthopedic anesthesia doesn't consult with geriatric anesthesia.
me: why not.
PA: they just don't. we get whoever we get that day.
me: don't you think it might be good for everyone to share knowledge in this case? what about helping with anxiety before anesthesia, we had a disaster last time. no one listened to me. no one helped on the way in or out.
PA: that's up to the hospital, you'll just have to see what you can do on the day of surgery.
me: Really? Dr ____ is the head of the entire orthopedic department and he can't arrange for family to be with mom before and after.
PA: that's up to the hospital
me: wow. So I guess it will be just like last time. Are you ready for the terror, screaming, disorientation. really?
PA: she got through it right?
me: you are fucking kidding me right?
And so it goes. So we stocked up on silly pictures to diffuse the frustration.
Not sure what "Henna 'n' Placenta" is but I'm sure we need some.
green? not as good as....
rock and roll Julie.
Julie is going to Minneapolis for the weekend to re-charge and attend the 100th birthday party of her partner Jim's mom's boyfriend ED!!!
Happy Birthday Ed! And we love you Jules.
We did it. got away, took four days for ourselves. Courage, sacrifice, faith, hope, pixie dust, trust. And it was, as ever, magic.
we made picasso tool boxes...
we found new friends
see you in September.