Sunday, June 26, 2011

Hills and Valleys...Backslides and Rallies

Today is a good day.  It is a beautiful Summer's afternoon outside.  The flowers are blooming; the birds and butterflies are busy.  We even saw a baby cardinal at our window-feeder:  you can tell the baby ones because their bills/beaks haven't changed colors yet...still brownish instead of yellow-goldish.  Life is bubbling all around us.

After breakfast, Mr. T fixed a baggie of ice-cold watermelon chunks for me to take to N/M/E as her special request treat for the day.  "Don't forget my salt," she'd reminded me last night.  The last time I took her watermelon, I'd forgotten that essential item...essential to her, that is.  I, who over-salt everything else I eat, never use salt on my watermelon.  Go figure.

Anyway...

When I arrived around the lunch-tray time, I found Momma had a visitor.  CW, daughter of Mom's BFF AW, had stepped into the early morning visitation rotation slot, pinch-hitting for her ailing mother.  Way to go, C!  AW, who has been so very faithful in being there for coffee with Mom every, single morning, got put on the DL this past week with vertigo...my nemesis. Hoo boy...I felt her pain, as you can imagine.  I also told her that she could keep it...I don't want any part of that.  No. Way.

As Mr. T is preparing to head off to NJ for a week, I could feel the panic rising.  Momma had been having a good deal more break-through pain, especially in her back and under her rib-cage on the left side.  More pain.  Down to just one of us (that would be me!) in the Home Team visitation rotation. Should I hit the panic button?

No!  Not yet at least.  CW is there if/when I need her.  AW will be off the disabled list and back on the Home Team bench soon, as her vertigo is settling down (according to CW).  The All Stars (both brothers and their wives, plus Missy M) will begin gathering for the Holiday Weekend on Thursday, when Mr. T will also return.

And, most importantly, the doctors and nurses at Hospice have recognized that Momma's not feeling as well as she was.  Without my having to ask them, they adjusted her meds (mainly the steroid, I found out) to better-manage the pain.  Go Medical Staff!

This is all so new for me...having the medical folks step in and just do what needs to be done, without my having to make a case for it to anyone. 

So, after a little backslide as Momma called it, she has put her Rally Cap on...yet again.  How can that be anything but a good day?

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P.S. Yes, I do use a few too many sports-related terms:  Rally Cap.  Pinch-hitting.  DL/Disabled List.  Bench.  Rotation.  Team.  Well, if you know my Momma, you know she loves her sports.  So, just run with it...:)

Friday, June 24, 2011

Why I Bother with Mascara is a Mystery

Ethel died today.  And I cried. 

You are probably wondering who Ethel is, and why I care enough to shed tears.  Answer Number One:  I don't know.  Answer Number Two:  Because.

Because "Ethel" was the name on the placard outside of Room 100.  Because that's the room next door to N/M/E's at Hospice Home. And, because I'd never met her, and until yesterday, I had never even seen any of her family.  There were no visitors to that room in the late-morning/lunch/early afternoon hours during the past two weeks, that I knew about. 

Until yesterday.  I noticed a woman and a young girl...possibly Ethel's daughter and grand-daughter?  But, it didn't dawn on me that there might be a reason for their visit, other than that it was just an ordinary visit.

When I arrived this morning for my ordinary visit with Momma, I noticed immediately a new Memorial Card on the entry hall table at 1803 Westchester. The name on the card was Ethel's.  And, even though I was loaded down with take-out from KFC, I had to stop and try to process the information. Ahhh.  The staff had probably called Ethel's family to come yesterday because they knew it was time.  Time to say goodbye.

Later, after Momma had eaten a few nibbles of her special request meal for the day (Extra-Crispy KFC chicken breast, slaw, and mashed potatoes and gravy), the nurse arrived to give her noon-time meds.  Seizing the opportunity, I slipped out of the room and took refuge in the Chapel.

There, I cried.  For Ethel.  For Ethel's family. For myself.  For the moment in the future when the staff will call me. The tears left no trace of my mascara...except in trails down my cheeks and on the torn tissue in my hand.

Then, a few solitary minutes later, I splashed some cold water on my face, put my smile back in its place, and headed back to Momma's room.  We had a new Southern Living to look at, after all. 

No more time to waste on tears.

Tuesday, June 21, 2011

Let Her Eat Cake...and Ice Cream!

I have a question for you:  if you knew your time on this earth was drawing to a close, and someone asked you if there was anything special you'd like to eat, anything at all...what would your answer be?  Think about it for a moment.

While you're thinking, I'll keep writing.  And, before you say "Patricia, aren't you being just a wee bit morbid today?" please remember that I spend every day from 10:00 to 2:00 in the Hospice Home with Nana/Momma/Edith.  Death...and the talk of death and dying...is ever-present.  And, thankfully, death is no longer a four-letter word for us...if you follow my drift there.  We have, quite frankly, begun to live with death...laugh about it...and lose some of our fear of it.

I can't remember if I've told you (I say that phrase quite often these days...:), but N/M/E stopped eating and drinking about 10 days ago while still here at home.  It was one of the darkest periods in this whole chapter.  When she got to Hospice Home and her medications were being administered through the port (instead of by mouth), she started to ask for sips of water occasionally, and then one day she wanted a milkshake.  It was music to our ears!

We have learned from the staff that it's OK if she doesn't want to eat...not to force it.  We've been told that as a body starts the dying process, it no longer needs food or fluids like it once did. Just follow her lead on this.

We started to notice that she rarely touched the soups, sandwiches, or other dishes on her tray...but she almost always ate anything sweet that arrived at meal time:  cakes, pies, cobblers, Krispy Kreme donuts, ice cream, etc.  Interesting.  Part of the explanation is that one of the medications she is getting (a steroid) causes a craving for sweets.  And, part of it is that this is perfectly normal behavior.  One staff member told me that her mother hated chocolate all of her life...until the very end, when all she wanted was chocolate cake!

You have to see the humor in the irony of this.  N/M/E dieted off-and-on for most of her life, battling a weight problem, and "sweets" were often on the taboo list.  Now?  Bring 'em on...line 'em up...and let me at 'em!  Diabetes be damned!!

So, today, after N/M/E had asked for a second dish of orange sherbet...and turned her nose up at the soup-and-sandwich combo...I asked if there was anything I could bring her that she would enjoy eating.  Anything at all.

She thought for a moment and gave me her answer with a big smile:  a pimiento cheese sandwich, a homemade sweet pickle, and an ice cold slice of watermelon. 

Oh, and a Butterfinger candy bar.

Guess what's on the menu for tomorrow at lunch?

Monday, June 13, 2011

Changes

Today's post is about the changes we are experiencing.  First of all, the weather has changed...for the better, if you want my opinion.  The temps have moderated...well, if you call dropping from the mid-90's to the mid-80's as "moderating."  I do.  As if in solidarity with the degrees, the humidity has also dropped.  No longer does it feel like a wet blanket thrown over your head when you walk outside.  Breathing is easier.

Hospice Home of High Point

More importantly, we have seen some positive changes for Nana/Momma/Edith.  As of last Thursday morning, she moved to Room 101 at Hospice Home of High Point.  Since then, she has adjusted to the medications that are now being delivered through a "port" instead of by mouth, her pain is being well-managed, and she is comfortable in her new surroundings. She expresses love for all the people who are caring for her...and they love her, too.  She is calm and rests easily. The changes for her are more than we could have imagined, given our experience of last Tuesday and Wednesday.

[I think I said in my last post that Mom was going to Respite Care on Thursday, but we realized that was no longer appropriate for her, following a swift decline since her falls on the previous Monday.  One call to her Hospice at Home nurse paved the way for the move to the Hospice Home.  I cannot say enough good things about this organization...they are wrapping our whole family in their tender, loving care, and giving us all what we need at this time.]

It truly has been a family affair.  Brother T (who has been with us since last week) organized our family schedule so that we could have someone in Mom's room around the clock, until she stabilized and adjusted to her new location.  When Brother J and SIL J arrived on Thursday, they were able to pull a double-shift to fill in for my absence while Mr. T had his surgery on Friday (he's recovering here at home, fighting a touch of fever, but otherwise doing well).  And, what would we do without our dear friend (Mom's BFF...:) AW?  She stays all night...she comes early in the morning...she's there for us when we need her.

I had a chance to speak to the MD/Director this morning, and he was pleased with Mom's responses.  He says that the next 7-10 days are important ones, and that they will maintain Mom on the present course unless things start to move in a different direction.

A friend recently recommended that I read the Hospice books.  I didn't know what she meant at the time, but I have since been introduced to the excellent "Gone From My Sight" booklet, inspired by the poem of the same name.  There are signs along the way, and we search for them at every opportunity. 

But, I did notice something about myself this morning.  Even though I asked Dr. P. where he thought we were (in the journey), I really am gradually relinquishing the over-reaching need I have to know. It's becoming more a desire just to be.

Talk about your changes...

Thursday, June 9, 2011

Five O'Clock in the Morning

I haven't posted for a while, mainly because I've been too busy to even think about writing.  Well, busy...and just unable to translate thoughts to text.  Simply put, caring for Mom these past couple of weeks has been one of the hardest things I have done in my life. She is moving toward the end of her journey more rapidly than we'd imagined possible, and it keeps me physically, mentally, and emotionally drained. Sigh. Really big sigh.

Still, I committed to keeping kith and kin informed here on my blog, so I'll jot a few sentences.  No pretty pictures this time.  Just words.

As I posted last, Hospice of the Piedmont is providing at-home assistance for Mom.  That means that we have advisers available 24/7; it does not mean "they" are here, on-site round-the-clock.  Hospice is wonderful, don't misunderstand; it does have limitations, though.

While Mom's pain is being managed by the meds (and for that, we are eternally grateful)...some of which must be given every 2 hours, she is no longer able to participate in her own care.  She fell twice on Monday within 12 hours, hurting her right knee pretty badly.  Is now confined to bed with a catheter; disoriented just doesn't seem to describe it adequately.  She "sleeps" the majority of the time, although she has a great deal of restlessness and agitation...and she's often in another place, mentally.  We are told that is perfectly normal behavior, but it rarely "feels" normal.  Someone must be available for her at all times, and the Home Team is a bit shy on bench strength, shall we say?  It's just me and Mr. T...and he's about to be sidelined on the DL for a couple of weeks.

Oh, we are not entirely alone in this.  Missy M is making sure we are eating well by sending us meals from near and far; we had Honey Baked Ham's turkey dinner last night, and Corky's BBQ arrived for tonight.  Hooray!  Also, Brother T has arrived from KY to help out for a few days, and Brother and SIL J&J are scheduled to come spell us on Friday.  Mom will be in Hospice Respite Care over the weekend, so that I can turn my attention to caring for my dear husband of 35 years.

You see, Mr. T is scheduled for surgery on Friday and will need 2-3 weeks to recover.  No heavy lifting.  Just think "hernia," and you will be close.  Anyway, if you are wondering whether I'll still be standing...and sane...after all of this, well, you aren't the only one. 

Here's what I'm telling everyone:  when this is all over, I am going to have a nervous breakdown.  I've worked for it...I've earned it...and NO ONE is going to deprive me of it.  I remember reading that somewhere and thought it appropriate.

Anyway.

Think positive thoughts...and, if you have any to spare, send some our way.  Muito obrigado! Muita obrigada!...which is about the extent of the Portuguese I remember...and, I'm not sure about the feminine version...:)

OK.  I hear Mom calling.  I'd better close this for now.  One foot in front of the other....

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