Friday, November 30, 2018

Home Alone

After being off a week with Mom, I returned to work after she'd gone and before the funeral which resulted in some surprised looks and questions.  Mom's last days were very different than I had anticipated and when I'm home, without distraction, I cannot keep from going there.  While on one hand, it is an experience I know I will have to work through, but living it was bad enough, I can't stay too long there.  It was far easier just to show up in room 15, a place I know the best and where everything was familiar, known, safe- a comfort really.
Already I had two scheduled days off this month for  yearly appointments. So today finds me home with my thoughts.
Grief is an interesting beastie.  No matter all the books I've read, and the grief roads I've walked, every one is different and apparently unavoidable and really tiresome.  This round I have mostly felt so very tired except when I'm so mad and anxious.  I know the sadness and missing part are likely waiting for me somewhere, but not yet. My head has hurt all week.
Not only was a job calling, but all that comes with this season.  All of it seemed completely overwhelming to me, but I've just tried to tell myself, just get started, do what you can.  I managed to get this school week done, another set of sub plans for today, and most of the mountain of work to be graded.  I've never missed a week of school so never saw a week's worth of work in one pile.  Wow.  My eyes are tired.

So, on we go.

My holiday loving elves showed up on Saturday to decorate.  Missy Bugg was in charge of the camera on this day.
 Following in her brother's foot steps, the feet.
And aren't upside down pictures fun.

So, now we have a tree, with the beloved faceless angel and all the others.

 And more pictures.

 Mr. Smiley was the entertainment in a multiplicity of ways.

 Aunt Tish came to help with the factory assembly of houses, for the traditional Gingerbread House Party tomorrow.
 Candy Advent calendars were filled and are in my car.  12 pounds of hamburger cooked for tonight's Soup Kitchen in which some of my people will help cook and serve.  And lastly, all seventy five books wrapped for three Advent boxes. Just in time for December 1.

I'm reflecting on the situation, that last week.  I think about some things that were so meaningful to me.  I bring them here because I never want to forget to do for others what was done for me.  I want to know and remember how to show up for others.
So very many people said, "Do you need anything?"  some even said, "What can I do?"  I know some people say that because that is what you are supposed to say. I know some people said it because they meant it.  The problem- when you are in the situation, new, scary, pitiful, and on and on, you have no idea what you need or want.  The immediate need was for people to sit with Mom and give us a break and so the grandkids and grandkid-in-laws did that until it had to be just the core group.
A nephew who worked at the hospital and stopped in to walk me to my car when the hour grew late. 
Though we all made heroic efforts, with texts flying and lots of notes in the room, communication was still hard.  The facility where she was located was not well versed in hospice care and our hospice service was in error placing my Mom and us in that situation.  The right hand never knew what the left was doing and Mom paid the price, and the watching of her suffering was awful. As I mentioned before, I had three shifts of nurses that offered hospice care and those were resting uneventful days.  
I appreciated an e-mail from Aunt Tish, reminding me that we were in this together and we'd see it through.  By this time, we were becoming frayed for sure. 
All that to say, I had texted Aunt Tish that Friday morning and said that someone who knew the drill had to be close till the end.  So, Rae, knowing I couldn't leave came and sat  bedside with her Granny right after we'd gotten Mom comfortable, while I took the boys for a tromp around the pond and woods outback.  You forget how much you just forget to breathe and how tightly your jaw is clenched until you get out of the situation . 
When we returned, she stayed until we got Mom comfortable again and Uncle Jimi came.  He brought his Bible and told me he was going to read her the Christmas Story.  Of course,  I knew it would be her last earthly hearing of it, and next she'd be living it. Meeting  that sweet Baby face to face.  I went out with Rae awhile to give him some time .  When I returned,  Mom became very agitated.   By this point, my anxiety was through the roof.  I got the nurse. The one who did not know about hospice care, and did the do.  Jimi and I sat on either side and squeezed her hand  and sang her songs until she settled.  Andrea came by to give me a squeeze and a chai latte.  Again, I wasn't thinking that I wanted one, or wanted anything at point, but the sweetness of it, knowing it came with love and fervent prayers so touched me.
When you only have so many people for the caretaking, I didn't really get to spend many of those hours with a sibling.  It couldn't be helped, but it all seemed easier if someone was with me.  I've always blamed it on being the sixth of seven, never being alone, never having lived by myself.  I was thankful for the time Jimi and I had with her.   Later that evening, Jordan came.  Mom was still relatively settled.  I asked Handy Man if he wanted to come over and pick me up and get something to eat.  I don't know how you know these things, but I just wasn't thinking I would be able to go home.  I thought if he could drive by, pick me up, get some supper, drop me off, I wouldn't be gone long.  I told Jordan if she as much as twitched to get the nurse and I knew he would.
While waiting, I sent another big e-mail to Teresa saying that I finally was able to think through what was needed and I wanted Mom's allowed medications to be administered each time she could have them, not "per patient request."   We just had our food sat down in front of us when Jordan called to say the nurse wanted to speak to me on my return.  My stomach was in turmoil and I couldn't eat so I asked the waiter to bring a container and the check.  The manager obviously noticed this and scurried over to ask if everything was okay and I assured him the waiter was not encouraging our leave taking, but I needed to leave as soon as Handy Man finished. It was at shift change and the non-hospice nurse that I had sadly dealt with for four days of that week was no where to be found and Mom was again in some sort of agitation. At this point I was overwrought and I guess it showed.  Teresa came and the charge nurse asked what she could do and so I recanted the day and just said this was not how I was told hospice would be and she was not comfortable and this was awful and somebody needed to do something.  She was very attentive and did everything we asked, including trying to move Mom back to a private room. We didn't make it.  We literally had her bed pulled out into the middle of the floor, when the nurse called us to her side.  Aunt Tish on one side, me on the other, Jordan close by while we sang until she drew her last breath.  And that sweet nurse and nurse's aid cried. Land's what a day for us all.
We went ahead and moved her into a private room. That sweet nurse brought food and drinks and we started making calls. I texted my friend, who's doctor husband had so kindly advised me through this ordeal.  He called me. I'm sorry, I'm so old school. I like voices and it meant a great deal that he would take the time to call and to remind me that this was hard, but I had been a faithful daughter.  For whatever reason, I needed to hear it.  More kind messages came via text.
Handy Man and Rae were there.  Though I've experienced this many times, it still is so strange.  Sort of surreal.  In that moment my heart was more broken for my niece, who had now lost her own mom, her husband, now her Granny and in the middle of a hellish medical ordeal of her own.  Watching her heart break was heartbreaking to me. 
Handy Man is never quite sure what to do with me in my distress, but he sure stands by to do any thing big or small that I ask. 
Saturday I visited the florist and did the busy work assigned to me.  That evening, Aunt Tish came to go through pictures and CD's and make decisions, texts still flying at this point. 
I got an idea for tree of life and a teacher friend met me to take care of the names on the spur of the moment.
Drummer Boy took us to lunch and it was a good distraction. 

Ol' Mother Hubbard came on Sunday and brought shrimp, biscuits and butter, a tribute to  my Mom that I understood immediately.  I wanted to make a funeral favor.  Well, why not?  I am my mother's child.   So she sat and listened whilst I relived those last days and tied up little chocolate spoons as I dished them out.
Ms. Glitzy came in my room with a Big Red on Monday morning.  She knows Big Red is my grieving drink of choice.  She also knows to bring just one.
Ms. Bran brought a gift bag with salsa and chips and another favorite drink.  So Handy Man and I had shrimp and salsa and chips for supper.  
My principal stopped in to be sure if I wanted to be at school and let me know I could go at anytime.
And then the funeral, already recounted here. I loved each kind thing someone said about the service. 
I couldn't help but reflect on the difference in Mom's funeral and my Dad's 18 years ago.  It is hard to believe how we've changed as a society. 
It was a hard day in some ways first off, and it was only a few hours on one day, as compared to an afternoon, whole day and morning funeral for Daddy.   Also, the day before Thanksgiving.  I surely knew many could not come, but somehow the desire is still there for those you know and love to get a glimpse of the life of one so very dear.  I very much appreciate each person who came by, or came and stayed for the services.  
Flowers and remembrances have become so expensive and my practical mind is actually glad that we've come away from doing so much of that.  A lot of money for a very few hours. Still, I loved that Ceece sent the most beautiful pink and lavender rose bouquet that nestled perfectly in the corner. My mom would have loved it. I loved it.
The Captain came back in the evening to visit and to help us eat some soup and rolls that a friend brought to the service, before heading out of town to her own family's Thanksgiving hours away. Again, glad for the distraction, glad I had something to feed them 
A call from a sister just saying, "How you doing?"
A card from friends to purchase something living to plant in my yard.
Another friend talking back and forth with me about a good choice of a tree.
Sweet cards from my school kids and garden stones. Cards that have trickled in every day.  It is funny, I love every card and sweet sentiment.  I have friend who's husband didn't like getting cards.  Ah life.
Yesterday, Gwen sent me some cutest pictures of our Pixie because she remembered it was my usual bath day with Mom.
And all the folks who listen when I need to still talk about her, and don't act like it is an imposition. Thank you.
Okay, enough time setting these memories down. Things to do.
Advent is here, ready or not.

Thursday, November 22, 2018

Love Lives On

Love lives on; love lives on
Even when the heartbeat's gone
It won't rust or turn to stone
Life may end but love lives on.  Paul Overstreet

Today is Thanksgiving 2018. I am behind and all my to do's of the day had me up at 4 this morning.
While I have to say I have many thankful thoughts running through my mind, they just aren't about the holiday and the work still to do.  I'm reflecting on yesterday, my Mom's homegoing celebration and I suppose wanting to hold onto it a bit longer.
Likely it was a bit unconventional  by today's somewhat button-downed standards, but it was purely and sweetly Granny Wandy.
So much she would have loved.
 Lots of pastor friends there, singing, praying, playing, speaking and taking care of business.
Lots of folks saying kind things about her.
All those kids and their kids and their kids.
Friends and more friends.
Food and plenty of it, kindly provided by the church, on a day when most folks are already under the gun on Thanksgiving Eve.
Songs galore, to the accompaniment of piano, guitar and a fiddle.  Recorded songs so even those gone on, her Daddy, my Papaw and Glenda were even there.
Beautiful flowers she would love.
And some beautiful sunshine, which just lifts the darkness that can dampen the spirit of the day.

Many hands make light work, but many hands can also cause lots of misunderstandings and confusion.  I am so thankful the siblings made it through, bringing our hopes for the day being all about our Mom to fruition.

It is rather nerve wracking on one hand to wonder if all the effort we put in would look and feel like we hoped.  My Mom so loved old hymns that I asked my long time friend Pastor Dave if he would just play and sing for us during that early time.  It really turned out to be a huge comfort to me and added a peace we all needed.
We had beautiful flowers from the seven of us, but I wanted something that included all of her line.  I found this tree and a teacher friend from school put all bazillion names of Mom and Daddy's offspring on it.  It was so neat.

 Everybody has their thing and mine is flowers. I wanted them to be stunning and they were.
 My boy Bean was in charge of snaps for the day and he caught some great moments.

 When I did Daddy's eulogy, Pete shared the reading with me and it was a comfort  to have someone close.  Grief does strange and unexpected things to us sometimes and I didn't know how it would be to get through it.  When it was time for Kaye's, Handy Man took over that spot, then again for Glenda. Sadly, I am a lot more familiar with this process and felt I could handle it, I just wanted him where he's always been- holding me up.

Several years back, Uncle Tim wrote a song about Daddy and Mom meeting up.  So cute.  When I reached the part  about that, Tim sang Mom's song. 

My theme was spoons -spoons to serve and spoons to dig and spoons to eat, spoons to join the band, all about things Mom loved. At this point, some of our littles passed out a little chocolate spoon with a card that said-
Granny Wandy would say
Love the Lord,
Say your prayers,
Dig in the dirt,
Share a meal, 
And serve up love,
With a big spoon.

Teresa, using the words from Ruth, paid tribute to the woman who has helped us care for Mom these last three and a half years. 

 Throughout the service, the lunch and the internment John and Mary Francis played Mom's favorite songs and we all sang along.  The Captain said, "I thought to myself, this isn't a funeral, it is a church service."  Indeed.  Just like Mom would have wanted.
 Time for food and the kind team at New Beginnings Church did an awesome job feeding this group.

 Time for more singing.  One by one the kids made their way over and joined in on the songs.
From my earliest childhood memories, the times with friends and singing that happened as often as my Mom could make it, were amongst my favorites.  That went on most of my life.  As the family grew bigger, it became harder to orchestrate these events.  They don't happen so often now, so seeing my own grandkids gathering up, clapping, smiling and singing their heart out just for the joy of it, was a complete delight.

 Bean has a real talent for capturing Rae with some interesting expression, at every get together.

 I asked Drummer Boy to remember his Granny by playing the spoons in her stead.
 Stephen is not one to want to be up in front, but when the music gets going, he can't help himself and sings his heart out. So you sit close so you can hear his beautiful voice.  The acoustics in the chapel later were so perfect, and though I love Amazing Grace, and love to sing, I could only listen to him.

I so appreciated the sunshine and all her big boys assisting her on her last earthly  move.

 Just like with David, we all hung around to see this through.  Each kidlet that wanted one made a bouquet from her flowers.  They asked lots of questions about what was happening and were so good after such a long day.  Rae sidled up beside me softly singing one last old oft sung favorite, Just Inside the Eastern Gate.
I'll see you there Mama.

Friday, November 16, 2018

In the Sweet Bye and Bye

There's a land that is fairer than day. I by faith I can see it afar,
For the Father waits over the way, to prepare us a dwelling place there.
In the sweet bye and bye, we shall meet on that beautiful shore.

I'm so very glad you've arrived at last.

How do I measure your life,
by years- all ninety of them, or tears -a river full, or strife?
Should I measure it by prayers?
ever willing to lift heavenward another's cares.
What about by song,
the ones you've heard and the ones you've sang for so long?
By the width of your table?
feeding so many as long as you were able.
Your big love for a celebration,
a time to party of your own creation.
By the joy you found in things that grow?
Loving to find what a seed had to show?
The weight of work, the willingness to labor,
desiring in all things to be in God's favor.
There aren't enough yardsticks or measuring spoons,
not enough space, not enough tunes.
No way under the sun,
to ever get such a measurement done.

Well done thou good and faithful servant.

I'm so heartbroken that the going was so hard.

Juanita Hollins  October 1, 1928 to November 16, 2018

Wednesday, November 14, 2018

All it Takes

Today, for the first time, a new nurse Ashley and her aid, who's name has slipped my mind were really on board with comfort care as I thought it could be, both to Mom and me.   
This is ever so much easier to bear when you are not in constant conflict with the medical team.
Someone stopped in from Hospice and I told her to please be sure to tell the powers that be what a great job this nursing team has done today.
A most compassionate man, Dr. Schuster came in today for wound care, thank God.  He was so kind and so reassuring as to how we should proceed.  After feeling like our every action has been called into question, it was as much for my wounds as for hers, his visit.  You would have thought he hadn't a thing better to do then to talk and listen. I wish he could be everyone's doctor.
I'm off to nap.  Since Mom was moved to a shared room, our menfolk help can't do the night shift.  A prayer that we can all get where we are going safely in this upcoming ice situation please.

Tuesday, November 13, 2018

This Place

I had hoped to never come
To this place.
I didn't want you to come either,
Here we are.

This place,
of hard questions
with no good answers.

This place
of confusion,
Where the light is on
Darkness fills the edge spaces,
and seeps in,
staring, mocking.

This place
of dying,
yet not,
of longing unrequited.

This place
I want to run from.
To pretend it is not what it seems,
hard, painful, unrelenting.

I hoped to never come to this place.
I didn't want you to come either,
Here we are.

Saturday, November 10, 2018

Life at the Mercy of Medicare

Throughout many of our family upheavals I've kept sort of a diary here.  I don't know how many times since I started this blog that I've come back here to look for some information I needed or wanted and couldn't quite place.  For whatever reason, I haven't really wanted to write about the place we're in. Just living it is taking up all the air in the room. One day though, I might feel differently.

We've been here in this awfulness so many times now between Kaye, Glenda , Jimi and Daddy, if you want to go way on back, you would think I couldn't be surprised or traumatized by bureaucracy with our healthcare system any more than I already have been, but hope springs eternal doesn't it?
So, I'm sure I have some of this whirlwind wrong, but I'll lay it down as best I can with my sore from sitting back and weary mind and broken heart.

Mom has been in a decline for years.  At the time of Glenda's departure she was mostly sitting in her comfy chair for the most part of the day.  She might wander into the kitchen now and again, but that was about it.  On a good day, we could talk her into going out for something she loved- lobster, or coming to our house for a special occasion, but she wasn't content out of that chair for long.
The one thing my mom could not abide was to be alone, or to give up her cigarettes.

So, since we still work all day, it became an issue of there simply not being enough money or warm bodies to go around. Aunt Tish looked under every rock. So the first trauma for her was moving her into an assisted living apartment. We set it up as near to being a replica of comfy chair environment in a sunny window, with her favorite television evangelist crooning or preaching and all things favorite to enjoy as possible. A boost was being literally being steps from the nurse's station with endless opportunities for socializing. There was not a single day these three plus years that someone additional hasn't been there. I was her bath lady and pedicurist and only one two week vacation and the flu kept me away. She sadly, more firmly planted her self in that chair.  While as you might guess, there is a no smoking policy, we had the technology of e-cigs, so the staff turned their head, and her number one job was to smoke the paint off of them.

I tell you people these are trying times.  In my Mom's day, cigarettes were actually prescribed by doctors as a tonic for "nerves" and my mother bought that hook, line and sinker.  She held onto the belief that them causing all sorts of diabolical health issues was baloney.  Well, she is 90 after all. Still, her kidneys were in decline and she had COPD.  So UTI's and pneumonia were constant.
Still, always blessings big and small, like finding a lady, Terri, who was willing to come whenever we called these past three and a half years.

Which brings us to six weeks ago when Mom started acting strange, the first indicator of a UTI.  The primary health person sent an antibiotic, but this was round two of Klebsillia, which I knew from Kaye is hard to treat the second time around and it was completely ineffective.  That was around her big birthday bash.  Every time the primary treats it once, we are required to go to the specialist who prescribed an antibiotic that I knew from past experience would not work.  It didn't.  This all sounds simple, doesn't it?  It isn't. Just this, two antibiotics, was endless phone calls for Aunt Tish.  So, she wound up in the hospital with two more antibiotics, then sent home with still another one, so we're on number five now.  UTI's in the elderly result in confusion and disorientation and she slipped out of her bed a couple of times. Not allowed, even if you are sick.  Perhaps I'm wrong, but it seems to me that they are watching for any opportunity at assisted living to find a reason for their clients to be shipped to the nursing home, skilled care facility.  These changes were directly related to her infection, but in order to keep her in her apartment, we again started twenty four hour watch.  In addition to the UTI running rampant, pneumonia was back, as well now as a very painful bedsore due to her inactivity.  So last Friday, when breathing was becoming labored, she asked to go to the hospital that she hates about more than anything in her current world.  We had decided that we would let her call the shots, so when she did, Aunt Tish took her.
Things went down hill all day until they called us in and said she was in a downhill spiral to the end.  Ahem, they don't know my mother very well. After several hours of her begging Jesus to come and get her, prayers and all her favorite hymns, she turned the corner, well, her stats became stable.
We reached out to all our sources- a nurse friend of Aunt Tish, a doctor friend of mine and a compassionate heart specialist who all told us to advise the powers that be to comfort her in all respects and otherwise leave her alone.
It would take me all day to write the kind of craziness, heartache, miscommunication, questioning, and fearing that has been in our hearts and heads this past week as we've stood over her, 24/7 trying to make sense of the nonsense of healthcare.  My sister's job of many years has been management, so she knows what she is doing and she does it tenaciously. This current system is not manageable. Even when you've said no to their precious dollars being used to continue to treat her, it doesn't make any difference. So for days Aunt Tish called, demanded, pleaded, okay begged for some grace.
We were told on Thursday, the words we longed to hear, that they would keep her at the hospital till the end. The person said she promised.
Meanwhile, they mostly had her comfortable, at least until the angina attacks, which by all accounts were horrible for her and those watching.

I took next week off work because I am at the point that I do not believe one thing they say and decided if they kicked her out, I would bring her home.
From Thursday morning till Friday, they did a complete about face and said she had to go.  Of course, we couldn't take her back to her apartment because she'd been given her exit papers.  I was advised that only God knew when she'd be getting her flight plan and it may be way longer than we were originally told.  I had been busy trying to find some affordable and reliable help for my work hours when I needed to go back to work and had failed.  So, we go to the only place open to us.  A room at the end of long hall where there are no other patients and my mother unable to even press a call button.
My mother worked like a dog all her life and had a decent retirement, in addition to Veteran's benefits.  A skilled nursing facility- interesting term- absorbs all but $90 a month of her income.
So, that's where we are.  The seventh circle of Hell, and that is where I'll be spending my days this next week. After that, I do not know.  Hope still exists in some very tiny place, hope that this facility will surprise me with attentive care.  I guess we're about to find out. Lord help.