Home is where …

Home is…where? Home is where your heart is. Home is where you wanna be when you’re not there. Home is where you sleep. Home is where when the wind slams a door shut and it locks…you laugh outloud and know right where to reach for the crochet hook to poke through the hole to unlock the door. 

I’m in the space the Mrs. has called “home” for just about 50 years. Twenty of those years I probably thought of it that way too. The last pair of years, her home has been wherever she could have me in her line of sight – we were here or there – but certainly joined at the hip. 

Last month we came to what I thought was the most “sacred” space with all her familiar stuff in just the right places (unlittered with my stuff) in order to go to a doctor’s appointment and another to get her hair cut and permed. On the first evening back when it was time for bed she said ,”Maybe we should get back home?”  I suddenly realized that that door of her memory had slammed shut behind her. We WERE in her home. 

Little did I know that the next morning’s events would fast forward my well-thought out plan to find her a more adequate care set-up before winter.  A few days in the hospital, lots of tests and zero definitive answers took her to a new place to lay her head. She’s got a full ride scholarship for a 20 day stay at a rehab facility – or in other words- 20 days for me to get a lot of ducks into a lot of rows. 

For some reason this morning I back tracked through years of blog posts to see where I was 8 years ago today. I think I’m in very familiar territory but I’m not sure yet. No one but God has a handle on when someone is home at long last. 

when the cicada sings and the blue moon rises

This is the time of year when the crickets, frogs and cicadas put up such a racket at night that it can be a little annoying. That cacophony buzzed its way deep into the recesses of my brain during the final days of Billy’s life five years ago. I wouldn’t give you a nickel to go back there or to even step back another decade when Best Boy almost died in China at this same time of year. Sure, a month in the hospital here “saved” his life but not without great physical and emotional pain for every single one of us. The incessant whir, click, buzz of the IV pumps became the soundtrack of long nights punctuated by morphine induced night terrors.

Sounds will do that for me – punch holes in the present vortex of life and send me spiraling out of control into a time machine.  On the weekly pilgrimages to the Mrs.’ I will often listen to a channel on SiriusXM that transports me back 40 years and smack dab into high school. I missed the reunion that was celebrated a few weeks back. I had been sick and was headed to an out-of-town family wedding but I wasn’t sure I could have pulled it off anyway due to memory overload.

I never know where I will be or what I will be in the middle of doing when one of my senses will be a gateway to some memory. There’s not a day that goes by that I don’t think of Billy at least once or that I don’t see hints of him in the goofy grin on Littles 10-month old face or in the pale hint of blue of his eyes.

A “worker man” walked by me the other day and if my eyes had been closed, I would have thought it was Billy climbing out from his NIPSCO truck, pockets bulging with booklets, pens, gadgets that had to do with work. A huge key ring jangling its unique jangle. It was the smell that got me. The blend of hot skin from hours of exposure to the sun and a hint of oil, gas and the distinctive sulfur smell added to the odorless natural gas. Fingers that wore their print mazes obvious to the naked eye as the deeply stained grooves could never really get 100 % clean, Billy spent hours a day exposed to the elements as he inspected high pressure meters from one end of the county to another.

But for all ways the dark tunnels of my mind are assaulted by unexpected sights and sounds that scream “something is missing”, I wouldn’t want to re-walk those summer weeks waiting for him to draw his last breath. I’d much rather be here in the journey. I’ve learned so much, laughed so much, cried so many tears, welcomed a new generation, celebrated gorgeous weddings, and weekly rubbed lotion on the parchment covered arms of the Mrs.

It is no surprise to me that life plows ahead. Travel schedules, day care drop off and pick ups, doctors’ appointments…so many calendar pages torn off, crumpled up and thrown away.  Just the stuff of life.  The sun rises and sets.  The moon gets fat and skinny right on schedule.  But once in a Blue Moon,  I get a second reminder,  that some days are special and I need to just stop the crazy and stare into space.  So when the cicadas can’t shut up to save their souls and a big Blue Moon is hanging low in the sky…I’m right back there.

Resting

Does our society have watchers – those who sit and wait? Do we know how to sit Shivah when that moment comes?

Do we know how to be still? Be silent?

Not ask questions. Not look at our watches. Not fidget. Not fret.

Why am I wired to sit in these quiet spaces in the waiting room of life? Not the room where feet are held to the ceiling, a wail heralding the start of the race. What is she called – the opposite of a midwife? She who can so easily walk out of a days events to sit and watch the chest slowly rise and fall?

The last foot falls in the hall-not the pitter-patter but the stilted shuffling of feet too tired to leave the ground save that final jump. Life boils down -simmers down-simples down-quiets down. No feet to the ceiling. Just a soul searching for an open window to make its final flight.

It’s Friday I’m in love

I’d love to think that you’d all be familiar with The Cure and their song about Friday’s, but I know better.   Sure there might be lots of room for interpretation here but I’ll give you my Billy spin. And I’ll even treat you to a great acoustic version on YouTube.  It’ll add to your read time but will be worth the detour.

I don’t care if Monday’s blue
Tuesday’s grey and Wednesday too
Thursday I don’t care about you
It’s Friday, I’m in love

Monday you can fall apart
Tuesday, Wednesday break my heart
Thursday doesn’t even start
It’s Friday I’m in love

Saturday, wait
And Sunday always comes too late
But Friday, never hesitate…

I don’t care if Mondays black
Tuesday, Wednesday – heart attack
Thursday, never looking back
It’s Friday, I’m in love

Monday, you can hold your head
Tuesday, Wednesday stay in bed
Or Thursday – watch the walls instead
It’s Friday, I’m in love

Saturday, wait
And Sunday always comes too late
But Friday, never hesitate…

Dressed up to the eyes
It’s a wonderful surprise
To see your shoes and your spirits rise
Throwing out your frown
And just smiling at the sound
And as sleek as a shriek
Spinning round and round
Always take a big bite
It’s such a gorgeous sight
To see you eat in the middle of the night
You can never get enough
Enough of this stuff
It’s Friday, I’m in love

I don’t care if Monday’s blue
Tuesday’s grey and Wednesday too
Thursday I don’t care about you
It’s Friday, I’m in love

Monday you can fall apart
Tuesday, Wednesday break my heart
Thursday doesn’t even start
It’s Friday I’m in love.

 

Here’s how Billy’s perfect Friday played out.  He’d come out to the kitchen, sit down on that chair and get his shoes on.  Go out to the drive way before 5 a.m. to get the paper, then take that orange bag and stuff it under the chair cushion until he needed it for garbage collection. There would be an early snack of “pbuzzes” (Honey Nut Cheerios).  It’d be a long wait but somewhere around 10 a.m. after patiently pacing for a good long time, I’d take him to Kosmo’s for a second breakfast of biscuits and gravy.  There’d be more waiting but the time could be passed going to the Dollar Store to buy more “1000 flushes” than a toilet could use in a life time – but you can never have enough blue water.  Or we could wander around the grocery store to buy more things to add to the never ending food pantry he has going.  

Sometime in the early afternoon, we’d get “the call”.  That’s what Friday’s were all about.  A highlight of his week.  Back before we took his keys away (still rue the day but I have to revisit alot of things here as time goes on), the routine would be more to his liking.  He’d go down to the church gym…do 100 laps the length of the basketball court (I’m not quite sure if that was 100 steps or one length would count as one), and that work out would be topped off by grabbing a ball and shooting four baskets.  If he didn’t make all four in a row, he’d start shooting again until he made them all.  Just 52 weeks ago – he could still pull this off.  Then he’d be warmed up for his “job”.

His was the business of stuffing the church bulletins.  I don’t know how many years he’s been doing this – but a few at least. Never particularly time efficient but certainly careful.  And what it really was all about was his way of serving his church family.  Something that has always marked his life – quietly, behind the scenes, not calling attention to himself.

If I wasn’t around on Friday’s the routine was even more modified as my mom would take him down to pick them up, they’d take them home and return them later in the afternoon and maybe stop for a hamburger on the way home around 4p.m. before they’d call it a day.  

About two months ago things really got dicey.  As they were leaving the house with a wicker tray basket that conveniently transported the few hundred folded missives…he stumbled on the steps out of the kitchen – tried catching the basket and got into a bloody mess as a result.  It was so traumatizing to both he and mom that he “retired” himself.  But I knew we weren’t going to give up that easily.  So I’d make it a point that Friday’s were on my schedule to be with him.

His first time back on the job after the tumble toss was on the 25th of July and it was a whopper of a job.  Three inserts!!  What were they trying to do…stress this guy out!  Force another retirement?  We set everything up in one of the Sunday School classrooms.  His breathing was so labored that he’d have to stop every short stack and take a break.  I worked out a system that I’d stuff, he make sure that they were carefully placed and forcefully creased – ‘coz that was essential.

The next week I decided to just pick them up and take them home so he didn’t have to leave.  We got them done in no time at all and I returned them with no mishaps.  But seven more days and things were different.  We’d been out to the doctor all morning and that was the day they’d ordered him on oxygen and we were at home waiting for it to be delivered.  The church called when he was sleeping…I went to get them and brought them home. He didn’t wake up when I came home and I left it at that.  Fifteen minutes later – I was done stuffing, the bulletins returned to the office just in time to be back to the house for the influx of equipment from Walgreen’s Home Care.

So here we are – another Friday.  From here on out everyday will be Friday for Billy.

what do you do with a drunken sailor?

It’s like a handful of trading cards…he can move around “freely” but he can’t breathe…or he’s comfortable but stays put? What’s a mother to do??? Over and over again in my mind these questions without one answer whirl. One thing has become more and more clear…once you start making Billy comfortable I suddenly have a drunken sailor on my hands. The first night we had hospice meds he was konked out in his chair soon after the 6 p.m. and he looked comfy there but I have worked in a health care facility long enough to know leaving him there might not work. Ha!

As if I were reliving the first night home with my first born…I kept looking every few minutes for a status check and by 9ish more and more of his feet were hanging off the end of the chair. I also knew that he’d not be as aware of any need to get up to go to the bathroom a million times tonight so we’d have to “depend” it. It was no small deal to get him to focus enough to let him know what I’d be doing by lowering his chair, standing him up, walking to his room, dropping his drawers…you get the picture. When I started to lower the footrest – suddenly the whole chair tipped forward. He says in a drug stupored voice “I’m flying!” (gotta love morphine). And I gotta love three years in that rehab hospital where I learned a trick or two about being a people mover. Good thing this guy’s all of 142 lbs. coz he was a weeble.

I remember him telling the story of his days in the Navy when a few fellow sailors got wind of the fact that this 125 lb. whisp of a guy had never had a drop of alcohol. They backed him into a corner and tried pouring some down his throat. Oh no you didn’t… End of story. I always got the impression that it was probably one of the few times in his life he got physical.

Anyway – my point is this…his wishes have been stated LOUD and clear that he wants to die at home. That is all fine and good as long as it doesn’t kill my mom in the mean time. At this point we are going to be making decisions based on what is best for the whole, over-arching good. If this means we move him to the hospice center so she can be with him all day long there – come home to a house where there isn’t so much tension in the walls – so be it. We did the best we could for as long as it was best for him. When he was able to enjoy this house – he was here. Now he’s enjoying something else and I really know that he doesn’t much care…

He was never one to take aspirin for a headache…remember 34 years with no sick days. Who does that? It was a little strange to hear the doctor tell me to stop all his meds. I dumped them on the table and put them back in their bottles. They really aren’t doing any more good. “Good” now is easing out – hopefully sooner than later.

the “H” word

Talk about a roller coast of emotions. Yikes…we are in the big leagues here folks. With each step in this journey there has been an overwhelming sense of peace and “rightness” about each decision. I felt that again today but not without some fleeting moments of panic that set in right on its heels.

On Saturday I decided to call Hospice to begin a more comprehensive information gathering. Of course we needed the doctor’s order to start the process and even though we’ve danced around the subject over the last months I knew I needed to know HOW to start this thing for real. When I found out that our doctor was on call for his practice this weekend – that made a huge difference to me. I could have waited till business hours on Monday but these days are NOT just 24 hours long.

The increased amount of oxygen was a help. Things were very quiet today – like step down quiet…not much food (banana for breakfast, 4 bites of mashed potatoes for lunch, a couple of cups of tea, a muffin), not as moving from room to room to try to get comfortable. He was outside for a bit, maybe a half hour sitting in the sun with Mom, but decidedly weaker and less talkative. He’s even given up his favorite hobby of the trash collecting. Well I take that back a bit – when he went outside – he had three “orange” mini-bags and an empty pepsi can to smash (which he did with a good deal of force I might add) to put in their proper places.

It was 3 p.m. when the nurse came for the assessment process. RIght away she was quick to let me know that he could be much more comfortable than he’s been…she judged what she saw as labored breathing. I thought his breathing was almost as calm as I’ve seen it! Now who doesn’t know jack? She was forthright in letting me know that we’d not been hasty in our judgement as when was the right time to get started. She ordered the meds – they’d be delivered later – changed the oxygen machine to one with higher output (it got deliver within an hour or so) and lickitysplit we were rolling.

My immediate sense was relief – that I had meds in hand that gives me the power to make him more comfortable. But let me tell you – the first time I filled the eyedropper (with like 2 drops) I felt very strange…but I must remember – this is the power to comfort. So I go from being terrified that he wanders all night to terrified that he’s resting comfortably? The deal is that these meds can be given on an HOURLY basis. HOURLY.

Now tomorrow when the regular hospice nurse comes for the first time (3x a week plus people to help with bathing and shaving – who’d a thunk it?) I’ll figure out more…is this like not waking a sleeping baby to feed it? Is it really hungry if it’s asleep? If a tree falls in the forest…

The entire hour or so that she was here – Billy was in and out – snoozing, almost fell off the little settle bench he likes to sit on, startling then sleeping again. When it was time for her to go he roused and we were all saying good-byes and he said to her, “Yeah, I need to get up and move around. Think I’ll go play some basketball…” and he proceeded to tell her how when we used to “LET HIM DRIVE” (ouch) he’d go to the church gym every morning – walk 100 paces or something then shoot 4 hoops in a row and if he’d miss – he’d start again. That was just a little over a year ago.

It’s really good for me to remember those 365 days. And when my breathing gets a tad fast, I’ll need to remember that this is best. This is hard but this is good. I read today in one of the miriad of pamphlets thrown my way by hospice – that this is like the birthing process in reverse. Both involve alot of pain – both end with joy and relief…and after a very little while, we forget the pain and are left with the joy. And no one knows how long a labor we will be having…