Basically Betty

Greetings from Old Northeast, St. Petersburg, Florida.

I've been in St. Pete since my last post to Mom's blog, her funeral was on Saturday the 20th and, honestly and without being biased at all, I can report that it was a huge success and a ton of fun, as funerals go. 

I'd sent an email to friends in St. Pete reminding them of Mom's service and assuring them that both Mom and I would understand if the demands of the holidays made it so they couldn't attend.  Our dear and very old friend Neil wrote back that he and his wife Jojo would never be so busy that they'd miss a Leone funeral!  They'd attended Daddy's wake at the bowling alley and expected just as much happy remembering for Mom as we managed to have for Daddy back in '93.

The formal funeral in the sanctuary was lovely, the pastor gave a lovely Mom message and James played a lovely movie he made of old family pictures set to a lovely song about love and the building of relationships.  James will post his Nana tribute online and we'll let you know the link to that in a future BasicallyBetty.com post.

Here's Mom's prayer card.

After the hour-long funeral in the sanctuary, we moved to the memorial garden out back where the Pastor gave a commitment prayer and I put the small earring box from Burdines (Mom's choosing) containing a 50-50 mix of Daddy's and Mom's ashes into the ground, then covered it with dirt and mulch. 

The earring box topped by the Rays sticker Mom chose for her ashes to be mixed with Daddy's and put into the Memory Garden at her church.  Yes, that's my Starbucks cup in the background - Howard would be so proud!

Me putting the box into the ground.

We all tromped into the social hall where there were long tables full of sandwiches, cookies and a sheet cake.

After everyone got their plates and cups full and took their seats, I gave Mom's eulogy and Neil filmed it.  We'll get the video up on You Tube and I'll give you the link in a future BasicallyBetty.com post.  I can tell you that there was brief but intense pandemonium at the beginning of my eulogy but with the help of Joann we restored order relatively quickly and I proceeded to talk for about 10 minutes, telling stories about Mom. 

I think I'm going to sprinkle some of her ashes down in Straub Park tomorrow night as the fireworks are going on, seeing in the New Year and taking us all into what will hopefully be our best year yet.

Thank you for still coming to Mom's blog, I will be writing weekly now that the holidays are over and I hope you'll let me know how you're doing, what you're thinking and how it's going.  Mom loved you and so do Joann and I.

Love and Prayers From Here to There.

Dear Friends,

Mom made the front page, Sunday edition, of our hometown paper, The St. Petersburg Times.  Here's the link to the article: 

 

http://www.tampabay.com/features/humaninterest/article839313.ece

In the paper the story is on 1A with the picture that's in the online version but the article continues on page 8 and in the continuation on page 8, there's the Mohawk picture.  For those of you with a bent for electronic media, the Times offers a free 14 day digital replica subscription if you want to see it as it appears in print.  We'll have a bunch of copies at her memorial service, I'll buy the rights to link to the full article and will put that up on the PPNW site and I'll get a copy framed for the studio so if you want to, you'll see it, one way or another. 

 

My dear old friend Mark Ferguson owns Ferg's Sports Bar right across the street from Tropicana Field and he and I will talk later today about putting a copy of mom's article up, he's wanted my old cheer leading memorabilia for a while and I'll get that together for him and we'll have a little Leone shrine in Ferg's.  I'll also make plans to have one last party at Ferg's for mom after her church memorial service; she never missed a Ferg's party. 

 

Short Version:

 

But mom's not dead yet.

 

Long Version:

 

I think the best way to describe her current condition is one foot in this world and one foot in the next. 

 

She sleeps almost constantly.  About half the time when she talks she doesn't make any sense.  Mom has always loved eating - anything and everything and lots and often - so my sister and I were shocked when we realized that hell, in fact, had frozen over when mom announced a couple days ago that food no longer tasted good to her.  Her appetite has been slowly diminishing and she's down to a few nibbles a few times a day.  In the night, at one of our bed pan/oxycodon parties, she cast those red rimmed eyes up at me and said "did you think that cake today was dry?"   I confirmed that the cake (Joann and Bill's 34 year anniversary cake) was not dry and she just sunk a little lower emotionally. 

 

On Thursday morning, I awoke to the sound of mom's oxygen tanks blaring their alarm, signaling a power outage.  I called upstairs and woke my sister up and she was down here in a flash.  The bed people said in the event of a power outage we would have about an hour before the bed deflated sufficiently for mom to be laying on springs.  They lied. 

 

There we were, my sister and I, scurrying around in the dark and we must have looked like ants in the farm with me on the phone to the bed supply place while crawling around underneath the bed trying to follow instructions for hand-cranked manual operation while my sister drug a battery operated lift chair over to the hospital bed, then called hospice and asked for help in moving mom.  They were dispatching the volunteer fire rescue truck to help us - my dad is in heaven howling over this, I assure you - when the lights flickered and then came back on.  The bed refilled and mom was refloated.  Disaster averted.

 

That same night, Mom said she wanted to type some emails so I put the keyboard on her lap but she couldn't type.  I put my laptop on her lap and she couldn't type.  We tried the computer keyboard again and she still couldn't type.  She decided she couldn't type because she was sitting up in the bed but if she could sit up in her lift chair, she could type.  Realizing that she just can't type anymore was really hard for her and she got all cranky.  I don't think she'd gotten over that indignity when the next one came along.

 

She got downright surly a couple of days ago when she lost every argument to get out of the bed.  She mounted these arguments with her favorite hospice nurse John here, thinking he'd be her ally and although he tried every way possible to get her to see that we are just out of options, she felt like we were all ganging up on her and she got pissed.  Really pissed. 

 

She weighed 205 before her organs began failing and fluid started building up in her abdomen - I bet there's 20 pounds of fluid in her - so we simply cannot support/lift her safely.  Coming to terms with the fact that she can no longer walk was I think the most difficult aspect of her illness so far.  When that crystallized for her - "I'm not going to spend the rest of my life in this bed!" -  she got huffy, then snotty, then belligerent and finally she went mute.  She's dying and she's pouting - what a combination! That was Friday and she's still moping.  I keep saying "mom, let's pray for acceptance and grace" but so far, it hasn't worked. 

 

We cannot be anything but honest with her so neither my sister nor I wants to give her hope that she'll walk again.  My sister is worried about our backs when we have to lift her - I told her that whatever we do to our backs will heal - but I'm more concerned that we'll actually drop mom and that dropping her would kill her. Mom's low back hurts a lot (because of the distended belly and the weight of the fluids) and her hips have been shot for decades.  She's so weak there's just no way she can support even a fraction of her own weight.

 

We've installed a trapeze above her bed - the whole arrangement looks dangerously like a Cadillac (a piece of Pilates equipment) - so she can work her upper body and she hates it.  I make her to pull ups every other day and her upper body is still pretty strong so she can lift her head and shoulders up off the bed.  She glares at me the whole time but afterward, she tells me how much better she feels and asks when she can do it again.  I've explained that her training for this maneuver will help avoid a catheter since she's less able every time to roll on her side for the bed pan.  If she can pull her self up on the trapeze, we can still get the bed pan under her.  Everything's a strategy, planning ahead for the next step down in her abilities, her condition.

 

About every other day we also do a series of ultra light intensity knee floats and stirs, footwork and arm circles, each set of 15 separated by 5 Fletcher Percussive Breaths.  Joe Pilates theory that even the bedridden sick can and should move is certainly being lived large for mom and I right now.  She always feels better afterward, is much more clear mentally.  Ron's breathwork helps her cough up some of the crap that's in her lungs.  Because there's so much pressure on her diagphragm, her breathing sounds more like a cat hissing.  I wonder if she'll just end up drowning in all this fluid.  

 

Here's pretty much a verbatim recount of a recent exchange:

 

Mom was whimpering, I went to her bedside and said

 

R:  Mom, are you okay?

M:  Yes, why?

R:  You were whimpering.

M:  I was?

R:  Yes.

M:  Well, I'm sick.

R:  You feel sick?

M:  No.

R:  Then why are you whimpering?

M:  Because they told me I'm sick and sick people whimper.

 

She's a riot, my mom.  I gave her an oxycodon and a lymph massage until she drifted back off to sleep.

 

If you're squeamish, just skip this whole next part.

 

Her middle is severely distended, it's filled with toxins that her liver and gall bladder can't process and those fluids occasionally just come out any hole that can carry them.  Hospice warned us her kidneys would eventually shut down and we think that's happening because her urine output is greatly diminished.  Only once has she wet the bed, not able to give us any notice that it was time.  Her whole abdomen is huge and when I say huge, I mean huge like an airplane inner tube, it looks like a giant water balloon, and the skin on her abdomen is red and purple and it's hot to the touch. But right in the middle of the front of the inner tube rises a tumor, like Everest.  It sticks way up, undeniably growing.  Weird. Her skin looks like alligator skin, like it can't hold the line much longer. Her teeth have all broken off, they're nubs now, and they've shifted in her head.  She has no idea this has happened and it doesn't bother her to eat. 

 

Mom's head hospice nurse will be out tomorrow and she and I will, once again, try to strategize about whether I should head back to Seattle on Tuesday as scheduled.  If mom is probably going to die in a few days, I'll stay but if she's probably going to linger for longer than that, I'll head back to Seattle and be on call, day to day, until my next scheduled trip here around 10/14.  It feels like cat-and-mouse.  I find myself praying she'll just be gone when I get up to check her in the night.  I wonder what is served by her suffering through this physical deterioration.  My lessons in being her companion are many and great, but surely it would be more merciful for her to just go on and go.  I pull the night shift so my sister can sleep in her own bed upstairs, we both spend all day with mom and it's pretty weird because 4 days had gone by and I hadn't been outside a single time.  The hours just fly by.  Two days, I didn't even shower yet my hair still looked fantastic.  (new do, picture attached, with me wearing the mom's aurora borealis set that I've been begging for since 8th grade and only now has she let me have.)

 

But yesterday, I got sprung. 

 

My brother-in-law took me to the college track and we ran and ran and ran, he and I did sit ups and push ups every time we passed the 5 yard line and we felt like tough guys.  I breathed hard, sweated like crazy and the weather was gorgeous and it felt pinpoint fabulous. 

 

My sister's been my personal cook and she's been making some of our dad's favorite recipes (daddy was the cook in the family) and it's been amazing to taste those wonderful long-ago flavors again. 

 

She and I work together like a well oiled machine and sharing this time with her has been lovely.  Daddy used to call mom, Joann and I the Big Three, and although our dynamic has changed as we've aged, we're still a pretty strong combination.  I'm not able to get hardly any work done and I'm trying not to worry about it.  I always manage to pull everything together one way or another.  Heidi is keeping the studio running, she's growing and learning and getting a crash course in the more serious aspects of studio ownership - I could not be more proud of her or grateful to her.  Jimmy continues to keep my apartment safe and tended, he calls every other day, he's a friend of 30 years and is such a rock.    

 

Mom just called me over to tell me her middle hurts and she wanted me to rub it.  The pressure on her diaphragm makes her feel like a belt is tightening around her middle and although there's no way to make the fluid come out, a lymph massage and some soothing conversation usually helps.  I told her it's perfectly okay to go ahead and die, that although she's on the front page of the paper today, we can't give that to her again, at least not until she dies (when Jeff will write a follow up).  She seemed happy, content and accepting, then she peed and now she feels better, I gave her another oxy.  And so it goes.

 

Ray's game 3 of the first round is on today at 4, Mom will sleep through it but my sister and I will be screaming, ringing our cowbell and threatening to give each other Mohawks. 

 

With mom like this - so broken in her physical form - I think it will be easy to say goodbye.  A relief.  It was like that for daddy and it's feeling exactly the same with mom.  Nobody dies fast in my family; I hope to change this.

 

But until then, I cannot wait to get outside again to run and breathe and wave my arms around and kick up dust and stare at mushrooms and squint at the sun.  I can't wait to move through the world.

 

On vigil in the Blue Ridge,

Bec 

__________________

And then finally, the day she died, I sent this:

Betty Gean Burns Leone 8/11/22 - 10/28/08  Â

Heaven Welcomes  Baseball Betty!

With my sister having to give mom morphine every 30 minutes around the clock, I called her this morning around 4 am, Seattle time, just to keep her company, and about 90 minutes into one of our marathon "sister talks," mom died with Joann at her side and me on the phone.      It was a Verizon death (my line), giving new meaning to the definition of a cellphone dead zone (my sister's line).   Last Words   Mom could talk a little bit up until Sunday and the last words she said to me were "I love you Becky, I love you."    My last time talking to her was last night during the 5th inning of game 5 when I called and sang Take Me Out to the Ball Game to her and, as I have in so many conversations of late, I told her to go on ahead and go, that her body was done and it was time for her spirit to head north.    Crossing Over   Mom told my sister Sunday night that she saw a group of people but she didn't know who they were, she kept saying "my name is Betty, my name is Betty" as if she were introducing herself to them and she kept trying to lift her arm as if she were waving to a friend.     It's clear to us that she had a whole contingent of escorts (baseball fans?) waiting for her, to help her find her way.    What a Wonderful World   Soon after mom stopped breathing this morning, Joann opened the french doors just above mom's hospital bed and, on their wooded hillside, there was brilliant sunshine illuminating the blaze of fall leaves still clinging to the branches and a light snow had begun to fall.  Joann said "all of creation is celebrating!"  And I think she's right.   We'll certainly be celebrating in the studio tonight.    After I teach 6 o'clock mat we'll bust out the champagne, fire up the 9 x 14 foot big screen and watch our segment on Evening Magazine - we won "best of Western Washington" - thank you world! - and I'll issue a general call to our fabulous clients for their favorite mom stories and I'll learn about so many great moms and it will be a lovely way for me to end this day, this very special day, the day my mom died.   Life Goes On So, Heidi is now my favorite mom, my sister is elevated to Saint status and I'm most happy to report that, contrary to what so many people have told me, upon the loss of my second parent I do not feel orphaned; in fact, quite the opposite.    I've never felt more loved, I've never felt more held dear, I've never felt more special, lucky and happy.  I'm not sure I can explain it but there it is.   So, let's all try to keep perspective and focus on what's truly important.  Try to embody peace.  Try to give yourself and all you have away, every day, every time, to every one.    That's what I think.  That's what I try to do.  That's mom's legacy in me.     And about those Rays   Mom separated from baseball before the World Series began, saying her team could not possibly do any more to earn her love, respect and adoration than they had all year long, that every game they won all season long was like a World Series win as far as she was concerned.    And with that, she was done with baseball.    She never watched another game.  She never asked another question about the team.  She was done.    This morning, Joann sent mom off to the oven freshly bathed and wearing her favorite blue nightie with a Rays bumper sticker in her hands.   It has the Rays name and logo and the words "I live for this."  And she did.  For a really long time.   Go Rays.     Next Time   When you see me, whenever that is, please give me a big hug and lots of kisses.  Suddenly, I miss everyone a whole lot.    Big love,   Rebecca

__________________________

So now, in looking ahead to when a lot of us gather in St. Pete to honor mom, we'll have a bit more of a common base to appreciate her grace, to admire her strength and to marvel at her spirit.  She sure was something.

Love and prayers from here to there.

Mom's St. Pete memorial service is December 20 at her church, Lake Seminole Presbyterian.  I've been working on her eulogy and I've also been in heavy rehearsal for my performance in leading the gang in a rousing rendition of Take Me Out to the Ball Game. 

Mom, proper and always concerned with appearances, specifically and sternly forbid any such frivolity in the church but once in the social hall, all bets are off.

Mom specifically set these ground rules to try and keep Pooge and I from misbehaving while in the church.  She essentially negotiated away the social hall, knowing that was the best deal she could strike.  Pooge and I, without fail, seem to devolve into some sort of twisted Mary Tyler Moore Chuckles the Clown thing, and mom was helpless to stop it.

At daddy's mass at Jesse and Ida's catholic church, Pooge started laughing, she made me start laughing too (yes, it was entirely her fault), and when it became an issue mom pursed those lips and hissed a warning that we needed to immediately get control of ourselves. Then she started laughing too.

It was the incense that got us going.  Daddy hated strong smells and, with emphysema and lung cancer, being around any smoke, even from a candle, would trigger big big breathing trouble.  Had he been at his own service, daddy would have died from respiratory failure.

Once the service was over, the priest approached and we though for sure we were going to get tossed but he was lovely.  He confessed that he didn't remember exactly who daddy was and we had to tell him that daddy never actually came into the church.  He was a catholic on a technicality.  We asked if the priest recalled frequently seeing a small brown man who sat in a Ford Taurus under the tree in the parking lot on the 16th Street side?  Bingo!  That's our dad!

And it turns out, it counted.  I think those catholics are just happy you're on the property.

Back to mom.

She not only told Pastor Bob exactly what she wanted her formal service to consist of, she also sent a follow up email to him listing everything, outline form, just the way she wanted it. 

I've been working on her eulogy and I've got 7 short stories that illustrate her capacity to love, her playful spirit, her sense of humor that was part innocent/part devious and her suspect problem solving skills. 

When I think of how funny mom was, it's almost tragic because there's no way I can really make vivid just how hilarious she was.  She'd crack me up, we'd both lose it, not be able to catch our breath, both be snorting and gasping and wheezing, and I'd say something like "mom, how will I ever remember this? How did it start?" and she'd say something like "don't try, I've already forgotten." 

How's that for being in the moment?

Those laughing fits, and they were very frequent, became more about her giving to you, bringing you to the point of such joy and when she'd join you there, laughing just as hard, it became about the release of it all, the freedom in that release and the resetting, recalibration of all of life that stacks up and presses down on that freedom. 

And I think that's the overarching theme of mom's life.  She was in the moment.  She was really right there on the edge of her seat for you, with you, because of you.

I'm heading to Madrid on Wednesday to work with some wonderful teachers, none of whom know my loss, none of whom know the extent of my mom's passion, wisdom, strength or capacity to love.  None of whom know, as Pooge puts it, the enormity of love that surrounded mom as she lived, as she died and surely as she rests in heaven. 

All of us, everyone you see at the store, on the road, at work, at school, we all have stories, feelings, loss and gain, heartache as well as joy.  I can never make mom known to everyone who should know her, who should be loved by her, who should have had just a little of her light shine their way. 

They'll never know how proud I am of her or how proud she was of me.  I can never do mom justice but on December 20th, I'm sure going to try.

Love and prayers from here to there.