Things I’ve Been Doing Lately.

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Gentle Reader,

By now, most of you know, but I wanted to share that Daddy died a week ago Saturday.  It was kind of unexpected-but I think maybe we think it was so because we weren’t ready.  Hospice made his last week a good deal more comfortable, and for that I am extraordinarily grateful.  I just wanted more time.

Now, I am wearing this:

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And the enormity of that is finally starting to hit me.  I did a good job of being kinda perky and “EVERYTHING IS FINE, JUST FINE, WE’RE AWESOME AND GRATEFUL AND SEE HOW MUCH I’M SMILING?  SMILING’S MY FAVORITE.”  for a whole week, which was awesome.  And then today I sat down at his/my desk, and started going through drawers so I could put my stuff in his/my desk.  I was going through old notes of his-the man threw NOTHING AWAY, ever-and had put some out to the side to ask him whether he wanted them saved or not…

And that’s all I have to say about that.

So people, I have got to get back into my normal life.  I want it back.  People have been SO, SO excellent about loving on us, feeding us, coming over to check on us, and I am so very thankful for all of it.  But I kind of feel like a two-year old on Christmas with all the Different and Unusual.  I’ve tolerated it, it’s been good, but now I need a dark and quiet room and to lay down for an hour or two.

So in the spirit of me decompressing and trying mightily to return to the land of denial, I present to you, “Things I have been doing this week to pretend all is fine.”  In list form.

1.  Binge-watched season one of, “Arrested Development”.  And fell in love with every.  Single.  Character.  And Jason Bateman.  Amen.

2.  Shopped.  A lot.

3.  But some of it was for Mama so that is okay.

4.  And some of it was wine ordering and contacting our various wineries to switch their contacts to me which is health food plus future planning.  And both of those are necessary.  For life.

5.  Cultivated a new appreciation for spaghetti squash.  Seriously, when the low-carb, glutens-are-the-devil thing first happened, I heard about it.  But I had never had it until one of the lovely families in our neighborhood brought them over for dinner one night this week.  Delightful!  I will be visiting that gourd again.

6.  Ate my body weight in pickles.

7.  And pork and lotus root potstickers.

8.  Then took some of Daddy’s Lasix.

9.  Became weirdly fascinated with my new Nike Fuel Band.  (See #s 2 and 3, above.) I’m obsessed with getting into the green dots for the day…I hate those blinky red dots.  They mock me.  And I know you don’t really “win” anything, but the Hours Won category?  Small children and the elderly couldn’t get in my way in order to get to another one of those if I’m close.

10.  Loved on Cody.

11.  Decided that while Mama and I are definitely giving Christmas a pass this year, WE ARE HAVING AND CELEBRATING THANKSGIVING.  It’s Our Thing.  My favorite.  Joy will be unconfined, even if I have to beat people into happiness.  It will be different, but it will be epic.  Menu planning has commenced.

12.  Rewatched all of Z. Frank’s True Facts Youtube videos.  Morgan Freeman’s my favorite, but they’re all hilarious.

13.  Edited to add:  I just made a pan of biscuits because it had been so long since I used my cast iron that I heard it crying in the cabinet the other day.  I sincerely hope we’re not about to have okra and tomatoes and hockey pucks for dinner.

Have a great weekend!

Goodnight,

Wordie

 

Bewilderment and Awe On Aisle 12

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Gentle Reader,

So our neighborhood has flat covered us UP in food.  It shows up when we’re not at home, it shows up when we are at home, it shows up when we are still in our pajamas at 1:30 in the afternoon watching “Ellen” on the YouTube (erm).  And it has been epic.  Ham, chicken wings, sandwiches, casseroles, soups, baked treats, bread, chicken salad, and paper goods.

(Seriously, if you are ever wanting to bring something in to people who are facing a Big Life Event, and are pressed for time or doubtful of your culinary talent, PAPER GOODS.  I cried when a bag full of paper plates and bowls and napkins showed up.  Cody also enjoys it because he gets to lick things off before we throw them away so the trash doesn’t get funky.)

(Also, never doubt your culinary skills.  You’re just fine with it.  Trust me.  It’ll be delicious.  And if it isn’t?  We’ll all survive, I swear.)

Anyway, I find myself wistful for NORMAL stuff.  Grocery shopping, cooking, the daily routine.  Because this might actually go on awhile.  After a weekend that was full of Awful, on Monday, Mama and The Grandmother and Cody and I walked into his room to find him dressed, showered, shaved, hair did, smelling fancy, and sitting up in his chair.   You could have knocked at least two of us over with a feather.  And The Grandmother weighs 73 pounds soaking wet, so I’m betting her, too.  (She and I share zero genetic material, OBVIOUSLY.)

I got a “Hi Bear!” and some sustained eye contact (provided I got in really close and looked up into his eyes, but whatever…), Cody got some good lovin’ in, The Grandmother got a “Mom!”, Mama got a “Special Mom” and a kiss.  Unprompted.  So he still recognizes folks.

Daddy was objectively, measurably excited when he saw Cody, and made motions to pet him, so I helped him, and we all got a lot out of that.

Tuesday was a repeat.  Today, he was sleeping the entire visit, but he had fallen last night (the first time in a couple of days) and had various medicines onboard due to that.  I am much more at peace with things right now, and I’m hoping it’s not just because my Daddy recognized me.  I’m hoping that this is real acceptance in my soul–I think hospice has done amazing things for us so far.  He is clean, he is MARKEDLY more comfortable (and not just drugged out, as we are really trying to minimize his meds, but perhaps a more targeted approach to comfort rather than general sedation) and restful.  I think we are regaining some dignity and quality.

I know where this train is going, and we’re not Pollyannas.  The current state will likely not hold, but as we move to different stages (different “normals”), we need to figure out how to have dignity and quality in those, too.  I think that’s what the whole point of hospice is.

Anyway, that was a long warmup to what I really wanted to talk about.  My recent trip to Brookshire’s.  (I told you, I NEED to get back into routine.  So that you never, ever have to read what you are about to read, EVER AGAIN.)

So I went in to pick up a few things.  And since our brains are addled right now, I am easily distracted.

I went to the meat counter to get some lunchmeat, and I saw this:

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Yes.  On the front row there, in the middle, for $4.00 per pound, we have a pork chop, stuffed with a sausage, wrapped in bacon.

Setting aside entirely the fact that cooking that thing properly requires a degree in some kind of theoretical physics (all three meats in the thing cook very differently, to different temperatures, at different rates, via different methods, so vaya con dios, there, partner…) I think we have now conclusively found the epicenter of “What is wrong with the American Diet”.  Everything else merely points back to the Pork Bomb up there.

And then I went to pick up some milk.  In the refrigerated dairy case.  Where I saw this:

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I don’t even KNOW where to start with this.  1.  I didn’t know that pepper needed to BE refrigerated…  2.  Let’s assume I have been barking mad all these years and have been doing it wrong.  It’s PRE-GROUND BLACK PEPPER.  Attempts at prolonging the freshness of that sadness are a lot like rearranging deck chairs on the Titanic.  3.  More likely, let’s assume I’m right, and this is one of those impulse-driven, “suggested pairings” that stores seem to do (like how you always find a few bottles of NyQuil with the kleenex and whatnot) rather than a reflection of proper food safety.  How do eggs suggest a need for accompanying pre-ground black pepper????  Have I been doing eggs wrong all these years?????  I always dash some salt in my eggs to relax the proteins and improve the tenderness, but what magic lies in the pre-ground pepper????

And that, good people, is why I need to get back to some kind of normal, because I got a little bit chilly as I stood there and pondered these mysteries while staring at store-brand ground pepper.  In the refrigerated dairy case.  And took pictures of it.

Goodnight,

Wordie

 

Similarity

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Gentle Reader,

Daddy continues to decline.  He has fallen several times now, and they are becoming more frequent.  Fortunately, we are able to attempt to control his pain.  Though since he is largely non-communicative, I can only hope that it is controlled.

This weekend, two branches of my gigantic family came in to see him.  Though he does much better with fewer visitors, it did make mama and me feel better.  My cousin, A, and her husband, O, drove up to the ranch and brought their puppy, Gizmo.  Gizmo went with us to see daddy.  O put Gizmo on the bed, and kept explaining to Daddy who it was.  And then he took Daddy’s hand and helped him pet Gizmo over and over.  It was so gentle and tender, it may just be the best thing that has happened since February 5, when all this started.  It was about the first time I smiled and felt sunshine in my soul since then, anyway.  I plan on taking Cody to see him tomorrow.  Though I sincerely doubt Cody can fit on the bed with him…

Daddy was able to acknowledge all of the out-of-town folk, and respond with usually one word answers of varying clarity.  He looked at Mama, told her he loved her.  And honestly, if I can’t get everything I want in this situation (And I can’t.) this was more important.  But to me, his only response was to look at me and seemingly deliberately close his eyes and turn his head.  I’m trying very hard to not take anything from that.  My heart is simply not ready to think that I will never hear his greeting (“Hey!  Bear!” or “Miss Bear!” or “It’s The Bear!”) again.  We are so close, so very much alike, it feels like a part of my soul is withering away, dissolving.

And so I sat down tonight and looked at the newsfeed, and see that we are not the only family who has a loved one on hospice tonight.  I am not going to fuel things by naming the family, I’m pretty sure you can look at the headlines and figure it out.  This family has a values system and a theology (“theology”, rather) with which I do NOT agree.  They have done things in the name of their ideas that I find utterly repugnant, that visibly anger me.  But over time, my thoughts have become nuanced.  I feel no hate for them.  I feel anger at their actions.  I feel enormous pity.  Their faith is a faith in anger and hate.  I have faith in a God that is loving, graceful, and hopeful.  We have Hope.  We have Love.  Their faith seems unwilling to let that Grace and Hope in.  Their ideas of God’s “hate” crowd out all Light.  I cannot imagine how joyless their world must be.  Otherwise they would mention life, birth, growth in their message.  They mention only death and hopelessness.

You might imagine that their continual message of death would have prepared them to lose someone central to them, someone they may love.  But I doubt it.  Because 16 years ago, we learned in a very big way that our family was on borrowed time.  That one day, and probably sooner than usual, we would be in this place.  We watched those who transplanted before us and those after us be called Home.  We should have known.  Maybe I think that we should have been more prepared.  I don’t know what I think right now.  But we did not know, really, and we are not ready.

We are exhausted.  I bet they are exhausted.  Even under hospice care, the watch does not end.  The phone still rings, and in turn our hearts race and stomachs knot.  Sleep comes and then flits away.  We cannot risk taking anything to help us rest, because the phone might ring.

We see Daddy shrinking before us.  Not the same man.  We want desperately to protect him from…I’m not sure of the word…but we also want people to see him if they wish, for him to see people if he can.  That’s a razor’s edge to walk, folks.  We don’t want Daddy to be a spectacle, but we want him to be remembered.  I am absolutely certain that there is at least a tiny spot in one of their souls that wants to shelter and protect their loved one.  That will want to be able to grieve in peace.  That will wish this would all JUST GO AWAY.  (I have the JUST GO AWAY thought approximately every thirty-seven seconds, FYI.)  I cannot blame them.

So maybe we leave them be.  Let them have the quiet.  Call it “ignoring them”, if you want.  Call it “let the dead bury their dead” if you want.  Call it “payback” if you want.  Feel superior, if you want.  But knowing what they are going through, I’m just going to let them alone.  And not care what it’s called.

Goodnight,

Wordie

PS-Obviously, I cannot tell you and will not tell you what to think or believe.  Your feelings may be different.  That’s okay.

 

As Ellen Told Kathie Lee

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Gentle Reader,

Let me be frank with you.

(That little gem comes courtesy of Daddy’s cardiologist, sitting down with him after doing the clinical evaluation for transplant, in 1997.  It has been a family favorite in times of trouble ever since.)

(Everybody should have the awesome physicians we have.  God gave us the last 16 years through them.  The skill, the trust, the humor.)

So today was Daddy’s regularly scheduled transplant clinic visit.  He was unable to make the trip, it would not have been fair to him to drag him all over north Texas.  Mama and I had some things we needed to address with his (main) doctor so we kept the appointment.

We have come to the point where it is as important, in fact more, to think of Daddy’s comfort and quality and meaning of life than it is to try to prolong or cure things.  And so that’s how it came to be that I went to the transplant center, a place I associate only with life and hope and…FORWARD, to talk to my Daddy’s doctor about hospice care.

This is a whole new world for me, because now the focus shifts from everything I have spent the last 16 years worrying about, the heart, to comfort.  His transplant doc won’t be his treating physician anymore.  THIS TERRIFIES ME.  I understand it, I “get” it, but my internal script was not ready.  I have verified with nearly everybody who will stand still long enough that the hospice care team will continue to medically support his transplant, via the same anti-rejection medicines that have kept the heart functioning beautifully since 1997.  The heart continues to function beautifully–the thing that we have established over and over is that this is NOT rejection.  It is important to me that the heart be the very thing we continue to actively manage.

Because it is not ours.

16 years ago, it was entrusted to us by a family facing something I can only imagine is quite similar to what we are facing now.  I will do anything on this earth to protect that heart so long as it is beating.

But the rest of him?  I will honor him by comforting him in the best way I know how.  By bringing in professional comforters.

Goodnight,

Wordie

 

The Parent-Child Inversion

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(Or, “I’ll Take Proud Moments In Daughterhood For $5000, Alex.”)

Gentle Reader,

So it’s really no secret that this process has not been an easy one for any of us.  Not me, not Mama, and most certainly not Daddy.

And I’m not telling any of this story on the blog here to elicit sympathy (I love you all, and your words and prayers mean everything to me, but really, if we’re discussing preferences, I want booze right now…)-my goal is to be honest.  To tell other people what we’re going through.  Because I find myself so utterly unprepared for this process.  And my Papa Jack was a funeral director.  The end of life was a more tangible concept for me than for so many.  If one of you reads this and should you find yourselves in this situation at some point, if my experience can help you?  ACES.  All of this will be worth something.

In our fast, shiny, happy world, old age and the ancillary issues are so…removed.  Grandma gets a bit dotty, we check her into an assisted living place and go see her on the holidays!  Or, the day before the holidays so we don’t have to take time on the actual day.  Or, we have the other extreme, and we go see her every single day, twice a day, and we have no life outside of taking care of her.  And then the end of life has become so “medicalized”…what will eventually happen to us all has become a strangely foreign concept.

So when it comes close, we find ourselves unsure, strange.  We spend SO MUCH TIME teaching our young how to live.  AS WE SHOULD.  But then we spend absolutely zero time preparing us how to leave this mortal coil.  To be around people who are.  And I get that-nobody wants to be the one to teach a “How to Die” class.  But maybe there’s some kind of way we can do this better.

And I am NOT trying to discuss the advisability of placing your loved ones in assisted living.  I’m not here to second-guess.  The decision is not an easy one, and everybody has their own “right decision”.  No guilt or second-guessing from me.  I’m just observing on a larger-scale, here.  It used to be that Grandma moved in with one of her kids.  There are serious disadvantages and hardships imposed by that decision, too.  But one of the benefits to having things happen that way was that we spent time around the elderly.  We saw life in all stages.  And there is very much life in all stages.

It is sooooo NOT “God’s waiting room.”

Anyway, this morning I was in town anyway, and I got a call from Mama asking if I could go try and convince Daddy to do something.

At this point, I should tell you that since 1997, my family Does.  Not. Yell.   It’s not what we do.  And we always end with, “I love you.”  AND WE MEAN IT.  We learned so very quickly that horrible day that there are so much better ways of expressing what we are really feeling, we just don’t yell.

So I went in to Daddy’s room, and found a very obstinate Daddy, who needed help to do an activity of daily living, and who needed to do said activity of daily living (nonnegotiable), who was absolutely refusing to do it.  (It’s unimportant the actual, specific activity.  For story’s sake, let’s say it was “reading a book”.)

I tried sweetness.

I tried humor.  (Well, what passes for humor these days.)

And then, I yelled.

Me: DADDY YOU HAVE TO READ THIS BOOK!!!!!!!!!!!!!!!!!

Daddy: [unintelligible]

Me:  WHAT??????

Daddy: [unintelligible]

Me:  DADDY IN THIS FAMILY WE LOOK AT EACH OTHER WHEN WE TALK TO EACH OTHER.  I WANT YOU TO LOOK AT ME RIGHT NOW!!!!!!!!!!!!!

Daddy:  [looks at me]  I already read this book.

Me:  I PROMISE YOU DADDY, YOU HAVE NOT.  I CAN TELL.  YOU NEED TO READ THIS BOOK!!!!!!!

Daddy: [not looking at me again, but it wasn’t worth the battle]  I did read it this afternoon.

Me:  [A lot more yelling, all in the same vein as above.]

Me:  [Still yelling.]

Daddy: …

ME:  OKAY, I’M TELLING MOM.  SHE’S GOING TO COME OUT HERE AND SHE IS NOT GOING TO BE HAPPY ABOUT THAT.  IF SHE HAS TO COME OUT HERE NOW, THEN WE WON’T BE ABLE TO BRING CODY TO SEE YOU LATER!!!!!!!!!!!

Me:  [Goes out and brings in staff reinforcements.]  DADDY MISS [staff member who is definitely underpaid] SAYS YOU HAVEN’T READ THIS BOOK.  YOU HAVE TO READ THIS BOOK!!!!!!!!!!!!!!!!

Daddy:  [Finally relents.]

So, to sum….I yelled.  At my Daddy.  A LOT.  And then I threatened to tell on him.  And then I tried to bribe him.  And finally ganged up on him.  I am clearly the poster child for that whole “honoring thy mother and father” bit.

And here’s where I have to confess that the yelling?  It certainly helped ME feel better…

People, I got nothin’…

Goodnight,

Wordie

The Lighter Side of Memory Care

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Gentle Reader,

I had to get that sadness off the top of my page…I do hope you’ll understand.  🙂

While things aren’t entirely bright and cheery around here right now, I did want to share two things (eh-two and a half things) that bring me an absurd amount of delight each time I go see Daddy.  (I mean, other than the actual “seeing my Daddy” part…which I always love, and is always miraculous, but sometimes not at all delightful.)

First-the fresh lemonade.  Apparently Memory Care residents (I’m gonna go with that gentle phrase…it works for me.) forget to drink sometimes.  (Which-TOTALLY MAKES SENSE, RIGHT?)  So this place takes special care to remind folks to drink plenty, and y’all, they have options!  Tea, cranberry juice (no vodka without doctor’s orders, I checked…), and this lemonade.  It’s fresh made, with actual lemons, not too sweet, but not too lemon-y, just the right amount of tart.  It’s everything that the lemonade at a certain chicken sandwich place should be, only more expensive and without the quasi-“religious” angle.  I help myself to a glass each time I go.

And then-the television selections.  Of course I noticed the television…  Most residents have small-ish televisions in their rooms, and then there is a big screen out in the day room.  It is usually tuned to golf (because????) or “Bonanza” and the volume vacillates between super loud and super quiet.  Never in between.  But the last few times I’ve gone, the ladies have been gathered around the television, watching it.  Like, INTENTLY.  Like I watch Reddington.  And truthfully, I didn’t pay attention at first because I assumed it was golf and-YAWN.  But a few days ago, I noticed that the show was actually an exercise video.  Straight from 1986.  Starring a lady who isn’t just decades younger than the Memory Care residents.  Who does aerobics in a chair.  The video is priceless, the lady’s leotard and eye shadow are priceless, the sweet ladies WATCHING the CHAIR EXERCISE VIDEO are priceless, and this has quickly become the highlight of my trips.  I love it.  I may or may not do a happy squirm and clap when I see it.  It’s darlin’.

Finally, they have Bluebell Ice Cream Snacks in the freezer.  Just-there.  In the freezer.  A few different varieties.  For the residents to enjoy.  Now, I can’t give this factor full credit (thus the “two and a half”) because I haven’t tried it out myself.  While I will drink somebody’s grandmother’s lemonade, I do have enough ethics not to eat somebody’s grandmother’s ice cream snacks.  (And yes, I know, it’s not like I’m taking the lemonade out of Grandma Edith’s hands, or her ice cream for that matter, because-they make more.  But still.  There’s a distinction there, even if I can’t quite enunciate it.)  But there is something very, VERY right about a freezer perpetually stocked (and restocked) with ice cream snacks…

These things make me know Daddy’s in a really nice place, which is good.  And I think it’s helpful to look for the bright spots…and we’ll start with Exercise Lady’s frosted blue eyeshadow.  🙂

Goodnight,

Wordie

Dust

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Gentle Reader,

Today, I did not go get my ashes.  I somehow needed no reminders of the temporary nature of this existence, of the finite-ness to my life, right now.  The dust to which I will one day return blends right in with the ashes and rubble of the rest of my life right now.  If my absence causes alarm in Rome, I am glad to discuss this with Pope Francis, but somehow I think he’ll understand, and I hope he’ll show some grace here.  I also ate chicken nuggets, and a delicious beef manicotti today.  And to be perfectly honest large sections of this post are made possible by a generous grant/pour from a Crocker Starr Malbec.  So maybe I’m in need of a lot of grace here.

A month ago, I was living in a new country, at the start of a new adventure.  My life was NORMAL.  I mean, other than walking down Tverskaya Street at night.  The weird?   Was good weird.

I had an awesome (young, HEALTHY) Labrador, a plan for the next few years, and a Daddy who was, more or less, in possession of most of his marbles.  (And, you know, fun and interesting things to talk about here on the blog, as opposed to…whatever this nonsense is.)

Now, I have moved back home, I have no job, no Labbie, and I’m watching my Daddy withdraw and curl in around himself in a Memory Care Unit (which has GOT to win awards for Most Benignly Bucolic Euphemism EVER, if you ask me…).  I’ve described the speed of his progression as “breathtaking”, but that’s not really accurate.  It’s breathsucking.  It actively seeks me out and sucks my breath with new developments that terrify me.   Like those creepy things from “Harry Potter”.  Only less cheerful.

God has stripped away so much from my existence, so much of my ability to hide, or deny, pretend.  So much of my comfort.  The impurities of life seem to be burning away, leaving rawer thoughts.  Mama and I have had some awfully frank and to-the-point discussions about things for which nothing in my upbringing prepared me.

Except, that’s not true.  In my upbringing, I knew nothing but love.  I was taught nothing but love.  I was treasured, I was sought, I was protected.  In huge measure by the man that has been the core of my every thought since February 5th.  And so it is with love that we treat him now.  That we make decisions regarding him and his care.

Part of the job of a family is to provide shelter, protection, safe harbor from this world.  And as his family, there are things that I will never talk about here on the blog, to protect him.  But things aren’t looking great.  And part of this process for Mama and me is learning to accept that things will progress, and that we are extremely blessed to have had him come back to us–AT ALL–through the miracle of transplant 16 years ago.  But we want more.  I want him back.  I want 17 years.  18.  27.  And moreover, I want him to enjoy it, to live, to thrive, while he’s doing it.  I want him to be HIM.

I’ve never felt so detached from my faith.  I’ve had to wait upon God before (it says so in the Bible!  Look it up!) for answers, for solutions.  We waited for 40 days for a heart for Daddy.  I’m good with waiting.  (And by “good” I mean, “not really good and pretty dang impatient especially considering all of the blessings that have been heaped upon me”.)  But He seems so…STILL…right now.  And that is unsettling.  And I don’t know what to do.  Don’t know what to ask for, to try, to research.

My faith has been so worn, and right now, honestly, I’m trusting that it’s there.  I can’t think about it, I can’t examine it.  One day, I will be able to again.  But right now, all I can do is trust that it’s there, at the core of me.  Because right now?

I am angry.

And then I feel so awful for feeling angry.  For being so selfish.  For being so human.

And then I want the funny to come back.  Desperately.  I would cling to it and nurture it and never take it for granted again.

And then my head hurts.  And then I pour some more Malbec.

Goodnight,

Wordie

(PS-I honestly think this probably wins awards for most maudlin post, EVER.  Tomorrow’s topic?  The breezy humor of Edgar Allan Poe.)

(PPS-We have AWESOME friends and family.  For realz, yo.  Lest it be thought I have become so focused on the sad that I forget the miracle, I am exceedingly thankful for each of you.  Mama and Cody and I love y’all more than you can know.)