Author Archives: Cheryl L. Ware

In the last few days, I’ve had two conferences with social workers, one at dialysis and one at the nursing home.  Both concerned Dad — and brought home the realities we now face.

On Friday the dialysis social worker called.  We talked for a long time.  They’ve been concerned about Dad –he has lost about 8 pounds in two weeks, and we had to talk about some grim possibilities.  Between pain, new teeth, and medicines, he just can’t seem to sit more than a few minutes, at least not comfortably.  At meals, he manages a few bites and then has to lie down. He has yet to get to the dining room to eat; that’s simply beyond him.  He has spent most of his time lying down, though he works at physical therapy as much as he can manage.  He’s motivated; he just has great pain.  He has progressed in many functional ways.  But still the weight loss has been steady.  The nephrologist added an appetite-booster to his meds, and by Sunday he was eating better and seemed to enjoy his food.

I know that with dialysis patients — with end-stage renal failure — there is a time when the dialysis simply no longer really does much more than keep as much fluid as possible from forming, but it can’t really work as efficiently as it once did.  Couple that with congestive heart failure, and you’re looking at a point where dialysis no longer completely removes fluid from the lungs, and we reached that in May when Dad had pneumonia for the first time.  At some point, the body just starts to shut down.

Fortunately, I don’t think we’re at that point yet.  But having the discussion brought home to me that the reality is probably sooner rather than later.  I asked the social worker to let the clinic nephrologist know that when his assessment of Dad was that such was the case, then I wanted to know.

I also discussed the probability of using hospice rather than home health services when we bring Dad home from Southwind, and she concurred that such a move would be a good choice.

Later that day, after talking with my sister about this, I was sitting around talking to my friend Charles about it.  He’s caring for his mother and they made the switch to hospice already.  While the hospice nurse was across the street at their house, he talked to her about it, and she called me to talk about it.  Hospice no longer requires that patients be dying for their services to be used; requirements have changed a lot since we used hospice in December 1995 and early January 1996 during the last couple of weeks of my brother Phil’s life.  Hospice was wonderful then, and I have no qualms about using it.  By Sunday, Kay and I had discussed this and we were in agreement.

I did a lot of thinking over the weekend as a result, sort of running various scenarios through my head.

On Monday morning, I had a call from another social worker, the one at Southwind.  We set up a family conference for this afternoon.  The family conference was me and the social worker and a few of the staff.  We talked about Dad’s progress, its limits given his pain level, and what to do about managing the pain.  We also talked about the way Medicare works, and now we’re at the weekly evaluation stage.  He can stay up to 100 days, but must show progress.  The first thing to do:  address the need for stronger pain medication, see if that worked, and see what impact that has on his physical therapy.  Also, they told me, his primary physician had added two more medications for boosting Dad’s appetite.  The good news:  he’s gained a pound.  That is a major accomplishment, given the steady weight loss he’s had up to now.  A few hours later, I had a phone call from the nurse, who filled me in on the medication changes the doctor made:  a stronger pain medication in the form of a patch that is replaced every 72 hours, with a milder medication available as needed.  Dietary changes also had been ordered.

Kay and I talked about our attitudes about pain medication at this point in Dad’s life:  it is necessary for it to be aggressive.  The pain level is unacceptable.  Dad, who never has  been someone to complain, remains in pain to such an extent that he has greatly diminished quality of life.  He has remarked to me often lately that no one should have to live with such pain, that “no one should have to live like this.”  I don’t worry about addiction.  I am concerned that he be relieved of pain.

He’s had a bedsore from bring reduced to lying down most of the time because of pain.  The bedsore is healing well, but it’s been a heads-up too.  Bedsores are the bane of patients who remain in bed so much.

I’ve learned a lot about medications, about durable medical equipment, about renovations.

It’s no longer simply keeping track of medicines and doctors’ appointments.  No, now I must really be an active participant, an aggressive participant in seeking answers for questions.  Being a visible daily presence at Southwind is key.  If I’m not there, Kay is.  We know the nurses and other staff.  We talk to them.  We ask questions.  We follow up on things.  I get phone calls about things I bring up.  My observations about Dad’s condition a couple of weeks ago meant that he was taken to the hospital emergency room and that he was hospitalized (though in Lafayette) for infection.  Had I not been there, had I not recognized the change in his cognitive functions, I don’t think Dad would still be alive.  Just a few hours, just one night — infection would have led to sepsis.  He was on the verge of it.  Without bombarding him with a cocktail of strong antibiotics, it would have taken over and he wouldn’t be here now.

That’s not being morbid.  It’s being realistic.  It’s not pretty, and it’s certainly not fun.  But it’s what is necessary.  It’s just as necessary as having the house renovated so that he can come home.

There’s a line in Hemingway’s The Sun Also Rises where Brett is talking to Jake about how wonderful things would have been if only he hadn’t been wounded in World War I.  She goes on about the fairytale that would have been.  Jake responds “isn’t it pretty to think so?”

I don’t have the option of wearing rose-colored glasses.  Someone has to be pragmatic, realistic, and face the possibilities without flinching.

I manage.  I bite my lip.  I take a lot of deep breaths.  But this is what Dad needs.

And it’s what he has always modeled for me.  He’s a deeply emotional man, a loving father, but he’s never been afraid of facing the hard realities.  He’s someone who works through difficulties by physically tackling some chore.  I find myself doing the same thing.  Sure, I shed tears, but then I get up and tackle some project.  It helps.  I can survive.

It is what he needs.  It is what I can do to show my love.  Pragmatic, practical — that’s me now.

It’s pretty to think that he’ll live to 104 1/2, as his Aunt Sallie did (she died in 2010).  I’d love to have him around to enjoy.  In my heart, I don’t think that will be the case.

So I face the probabilities, the realities of our future.  He shaped me to be someone who could tough things out, who could think clearly.  My brother expected the same thing out of me — when he told me about his cancer (the first one) and I started to cry, he told me to stop, that I couldn’t, that I had to be the strong one.  So I learned to toughen up.  I cry, but not in front of them.  I let go at times, and talk to friends.  I find solace in talking to friends who’ve been where I am now (and there are a number of them).  Friendship and community support me.  Family support me.

That enables me to do my job.

Now I focus on finishing the renovation — on sorting through the boxes, throwing more stuff out, and organizing what’s left.  I still have painting to do on cabinets in the main bathroom.  I have enough to keep me busy.

Reality may bite, but I bite back.

One of the things I’ve noticed since retiring:  I no longer really distinguish between weekdays and weekends as I used to do.  Then the weekend was the time of respite from the week of teaching, advising, conferencing with students, grading.  Wait.  Not from grading.  That tended to go on all the time.  Yet I became more and more reluctant to grade on the weekend if I could manage not to.  Those precious days were mine.

Weekends were when I had to crowd in time for everything else; sometimes I could run errands during the week, on Fridays particularly since I didn’t teach on Fridays.  But a lot of projects waited until weekends.  I know the term “weekend warriors” originated to describe people in the reserves, but I think a lot of us are weekend warriors of a different sort.  We work on the weekends to complete things that we don’t work on during the week.

Now though, the days are all mine.  Sort of.  Once I’d moved to Egan, my weeks fell into a different pattern:  MWF/TThSaSu.  Dialysis days and not dialysis days.  Dialysis days and doctor days.  And I’m sure that is the way the time will divide itself once more when Dad comes back home.

Since he’s been in Southwind, my time has been spent on renovations and being around while the contractor worked.  Sometimes I’d run errands while he worked; sometimes I’d go away for hours.  But on the whole, my days were spent in the house, doing errands, and visiting Dad.  Nights were when I managed to paint, to try to box up things, to move what I could.

Weekends — most of them— have been Lake Charles time.  My sister Kay and I joke that I have the M-F shift and that she has the weekend shift.  Weekends became the sleeping time, time when I tried to recuperate from exhaustion.  And tried to keep in touch with friends by having coffee.  Many times, sleep won out over going to dinner or having drinks.  I have a 5 on/2 off schedule, mostly — five days on, two off.

This weekend, though, I stayed here in Egan.  The last days that the contractor worked were primarily spent under the house and outside, replacing the plumbing.  So much of the plumbing in the house was ancient — galvanized pipes from the 1940s.  The “new” plumbing (circa 1966) was a jumble of four different types of pipe, from galvanized pipe to oilfield leftovers to pvc.  By Friday, the plumbing was all new, and I didn’t worry anymore about lack of pressure or anything.

Those days I spent indoors, working on painting and cleaning and trying to figure out what I’d packed in what and where I’d moved it.  By Friday, I was physically tired.  As long as I needed to go full steam, I could, but once that need had passed, my body knew it and simply shut down on me when it wanted to.  It didn’t consult me; it just did it.

And that’s what happened this past weekend.  By Friday, I was just exhausted and wondering whether I was coming down with a cold or had caught a bug.  When Tim the contractor left that afternoon, I lay down for what I thought was a nap.  I woke up about 7:30 p.m., realized I wasn’t going anywhere, and called Dad to tell him I really didn’t feel well; he told me just to sleep.  Which is what I did.  I had already missed seeing my friend Mike play guitar at a coffeehouse in Lake Charles.  I decided I was simply crashing and that Lake Charles would wait a few days.  I turned over and went back to sleep without setting an alarm clock.

Saturday morning I woke up about 9 a.m.  I spent my Saturday beginning to catch up on washing clothes, staining the new bed frame I’d bought, and reading and watching television.  I didn’t even dress until I went into town to visit Dad.

My brain had also decided to go on strike, I think.  I’d try to start the blog, only to find that I couldn’t manage more than a few sentences.  Nothing.

I hadn’t had that kind of exhaustion in a long time.  Not since I retired in May 2011.  It was what I used to experience post-finals every semester.  I was always grading like a madwoman at finals, and when I turned my grades in my brain would simply go on strike.  It wanted mind candy, murder mysteries mainly, and a break from any kind of organized thought.  I guess that’s what happened this past weekend.  I gave in to it; I read and watched television and worked around the house.

And I cooked.  Yesterday, hoping to tempt Dad’s appetite, which has flagged so much that he’s lost an alarming amount of weight, I cooked a pot of red beans and sausage.  He’d also requested cornbread, so I baked some, using a cupcake tin to make it easier for him to manage.  I knew my sister and niece were coming for the day so I decided to wait until suppertime to visit.  Two visitors would be sufficient, and since our friend Billie was also likely to visit, I thought it would be easier on Dad if I waited.

So yesterday I puttered around the house here in Egan in my nightshirt.  I didn’t have to dress; no one was coming until Kay and Rachel dropped in after leaving Southwind.  By then, I’d dressed and was washing another load of clothes.

They dropped in for a little while to visit.  Rachel hadn’t seen anything we’d been doing, and this was her first chance to see everything.  Kay and I visited and talked about plans for the house, for when Dad comes home.  After maybe an hour, they headed back to Natchitoches so that they could get home at a reasonable hour.  Kay hasn’t retired, after all, and she had to be at work early this morning.

After they left, I watched more television and folded clothes.  I put up the shower curtain in the back bathroom.  I started sorting through some of the stuff in the new office, making a path through the boxes and chairs so that I could manage to get around.  I bagged some things to throw out.  There’s now a pile of four or five bags waiting to be thrown out.  The dilemma now is where to throw them, since the garbage truck failed to empty the garbage can on Friday.

Probably I’ll take advantage of the fact that Egan has a garbage dump.  That means I’ll load up the truck and head off to the dump.  Probably not today, though.  Those bags will wait.

Today I’m just trying to get my brain to work again, and it seems to be willing.  At least, so far.

Now I simply sit here working on the blog, wondering when the plumbers will show up today to finish the last few things they need to complete. I hesitate to start washing or drying any more clothes.  There are a few dishes to wash, though, and I need to put the bed frame together so that I can take the mattress off the floor.  Hippie style mattress on the floor:  okay for the short run, but at 60 I really prefer not to have to haul myself up off the floor when I need to get up.  The charms of that simplicity have run out already, and I want to be a grownup again.

There’s a paper to proof for a friend. And since I’m heading to Lake Charles for the night, I guess I ought to put my few things in a shoulder bag.  I don’t need a suitcase, after all — I have clothes at both homes.  I just need my medicines and my iPad and my laptop.  And myself.  And a tank of gasoline.

In fact, I hope that the weather is sunnier than it is now.  I have dreamed of driving with the top down, and I’d like to do that if possible.  Of course, that means I have to clean out the car, which looks as though I live in it.  That won’t really take long.

It’s Monday.  The weekend is over and my workweek has begun.  It’s not the work I did for so many years, but it’s work nevertheless.  Some people worry about what they’ll do in retirement; I never really did.  I may not be doing what I’d planned, but I’m learning every day that retirement is truly what I laughingly referred to it as:  I never said I was retiring.  Instead, I said I was graduating.  Again.  And so I have.  I’ve graduated into a new life.

So maybe I do still see time in terms of weekdays/weekends.  It’s just not in the same work context, however.  Weekends still have their uses, apparently.  Mine provides renewal still — just from a different kind of work.

Mondays used to have their own song: “It’s just another manic Monday.” — No, Belinda Carlisle and the GoGos.  It’s not a manic Monday anymore in the same way that it used to be.  It’s Monday, but not so manic.  Kind of slow, in fact, which is a joy.  I can putter around the house,  I can take breaks, and I don’t have to grab books and teach and have office hours and grade.

I’m still a warrior of sorts, but a slower one, battling a new kind of front. Managing two houses, juggling my needs with Dad’s, and trying to find some kind of balance.  I still have goals to achieve — to join Anytime Fitness in Crowley, to make time to exercise, to travel to England and Greece and Italy and wherever I can manage, whenever I can manage.

Time to switch gears now, to take a break and dry some clothes.  It’s Monday, after all. At least the red beans and rice are ready for lunch.

You know the kind of day where you’ve set the alarm, or at least think you have but haven’t, and then don’t get up when you’re supposed to?  That was today.  Last night I just crashed.  This morning I awoke to the phone call from the contractor, laughing because I had overslept.  I managed to drag myself out of  bed, dressed, and opened the door.  Immediately we began to clear the boxes and other things out of the living room.  FInally, when he began ripping out carpet, I left.  A day out while the carpet exchange happened seemed like a good idea.

Taking my purse and laptop bag, I headed out, stopping at the post office before heading in to Crowley. Faxing some papers from the parish library, I headed for breakfast at McDonald’s.  I sat at a booth,  reading the news online, and reading a book kept me busy for a couple of hours.

Before heading to Southwind, I got some shrimp and rice dressing for Dad’s lunch, hoping this would tempt him.  Once in his room, I sat for a while and we talked.  I managed to find out what was going on with his medicines and checked up on the overlay mattress that I’d requested.  Pain was once more the order of the day, though, and Dad managed only a few bites between longer periods lying down.  Most of his time is spent now lying down in bed since his arthritis is most noticeable when he’s sitting up in a chair. He lay there with his eyes closed; I sat and watched him between games of Words With Friends and chapters in a book.

Today I needed to be there for a notary public to drop by and notarize some papers for Dad.  After a few hours there, I found myself pondering just how the residents stand being there sometimes.

Maybe it’s the nature of nursing homes, but lately what I’ve noticed as I walk in are the people just sitting and staring.  To be sure, some aren’t; some are active, playing bingo or visiting with each other.  It’s the ones who are solitary, though, that catch my eye.  Day after day, the just lie in reclining chairs, eyes unfocused, mouths open.  Sometimes there are family members visit, but I don’t always see this.  After all, during the week I don’t manage to spend a lot of time there while the house in being renovated, and Kay is there most weekends.  I’m there for dinner each weeknight, and I pop in at other times.

Today, though, I was there for several hours in the middle of the day.  A busy, typical day, too.  Nurses give medicines and deal with residents’ health issues.  Aides help with other tasks.  Dietary workers bring trays to rooms for residents who don’t go to the dining hall.

At no time was it really quiet.  Dad’s roommate listens to his radio, not with the wireless earphones provided for him, but with the music blaring.  Dad lies there with his eyes closed, probably trying to tune the music out.  Occasionally he opens his eyes and talks, but not always.

The constant noises of staff working formed one layer of today’s soundtrack.  The radio in the room was another.

The most disturbing layer, though, came from a resident down the hall — a woman who wails and screams for an hour.  At no time does she relent.  I’ve seen her at other times, quieter, but rolling herself around the halls and wandering into other people’s rooms.  I’ve heard her a bit agitated at times, but nothing like today.  This is markedly different.  And much more concerning.

Does this happen every day?  What sets her off?  And why doesn’t anyone go down to deal with her?   Not once in that hour did I see any staff head to her room.

I know that nursing homes, even the good ones like Southwind, are often understaffed, especially on weekends.  Nights are also often understaffed.  Day shifts, though, are supposed to be the most fully staffed.  And probably the busiest, too, since all sorts of activities go on.

But today I’m just haunted by the images of those silent women and men, sitting alone though close to each other, wondering just what they hear.  Are they aware of everyone looking at them?  Do they hear the noises I hear?  Are they taking anything in at all?  In their isolation, they sit.  Hour after hour.  I don’t always see attendants with them, and seldom see anyone spending time with them or touching their arms or shoulders.

And by the sounds emanating from the room down Dad’s hall, wails and cries that rise and fall for long periods of time.

I was able to leave the sounds and images behind when I left to run more errands.  i only had to hear the cries for an hour.

When I called Dad later, halfway thinking I’d take a nap and maybe just stay home, I asked him what he was doing.  “Just lying here,” he told me.  “Just lying there? Doing what?” I asked.

“Waiting for my daughter.”

i’d be there in a bit, I told him.  No skipping.  My desire for sleep was not important.  Dad’s loneliness was.

I got up.  I got in the car.  I got a diet Coke and went to Southwind.  I walked in, sat down, and he held his hand out to me.

I got up, leaned over and kissed him, and held his hand.

For a long time, I just sat there, letting him have the comfort I could offer him.  My hands.  My love.  My time.

I hope other residents get the same time with their family members.  No one should be without companionship, without the simple gift of time.

Tomorrow, I’ll go back.  And the next day.  And the next.

A day out can be for r&r.  It can be to run errands.  It can be instructive, too, if we pay attention.

Last night the thunderstorms and lightning kept me up for a while.  Knowing that there was a tornado watch near us kept me listening for the weather news.  Luckily, no tornadoes touched down here.  Instead of allowing me to sleep easily, the weather last night made me a bit uneasy.  At last, I finally got to sleep after setting the alarm and then reading for a while.

Rain bookended my sleep and my waking. Early waking and a slow morning meant that I just lounged around and watched television, waiting for the rain to pass and wondering when/if any work would get done.   A quick mail run was the only time I got out of the house for hours.  It was wonderful.  I haven’t had such an absolutely lazy day in weeks.  Charles came over with cinnamon bun bites and we enjoyed a morning visit.  He left just before the rain started to pour again, making it across the street just in time.

Most of the day, though, I was alone and quiet.

What a treat to be able to sit and watch television, though I’ll admit that periodically I moved another box or basket from the living room back to my bedroom.  I moved a library table in and placed it behind the bed and really like the effect.  Moving Dad’s stereo in and placing it on the cabinet that now houses the albums and DVDs took a good 30 minutes.  Moving the albums into the cabinet meant that I now can throw out the metal contraption that collected dust and served no real purpose other than to provide a surface on which to stack no-longer-used electronic devices.  Those will go to Goodwill, along with two boxes of dishes and glasses.  The metal thingy can go to the trash.

Hours passed, and I watched HGTV shows about renovation, then about buying houses in international locales.  At some point I switched to the history channel to watch Pawn Stars.  Sipping DDP and lounging — what a lovely, lazy day.

Only after lunch did Tim show up, and that wasn’t really for long.  About 3, the plumbers came to install the toilet and pedestal sink in the back half-bath.  It was just not a day that allowed for much more.

Late in the afternoon, FedEx delivered the package I’d been waiting for.  That meant I was free to head to Southwind.

I visited with Dad for a couple of hours; I made an appointment for a notary.  I shopped at Walmart.  It was nearly 9 p.m. before I finally got home.

Lots more remains to do, but I’ve just not done much more tonight.

At this point, we’ll be lucky if Tim and his dad can put in the carpet tomorrow.  The plumbers need the ground to dry up a bit more before they can work.  Tim tried using a pump to help dry out underneath the house more quickly, but that really didn’t work well since more water kept coming.  So for now, their projects are slow in progressing.  I can indulge myself a bit.

This morning I’d have given anything to crawl back into bed; my eyes were heavy and allergies made me sleepier.  But  I needed to be awake and waiting, though I could curl up in the recliner and enjoy a marathon HGTV morning.  Tonight, I’d love to be sleepy, but somehow I’m just not.  Oh well.

The list of things I need to do will wait until tomorrow morning.  The alarm will go off far too early — and it’ll still be dark when it does.  But that means I can rise and begin those projects I didn’t get to today.

After the last few weeks of hectic work, a change of pace is refreshing.  Tomorrow, I’ll have lunch with Dad, treating him to some Popeye’s shrimp and some rice dressing; he’s not that pleased with the food at Southwind, and now that his new dentures are in, he’s eager to try for “real” food. But that’s tomorrow.

Mondays begin the week, and if today was any indication of what my week will be like, it will be slow.  And wet.

If I’m lucky, I get to spend weekends in Lake Charles and enjoy my house.  Driving up to it, unpacking, and going into the house after 5 or 6 days away from it feels great, especially when the dogs recognize it’s me, even before I’ve put the key in the lock, and they start barking because I’m home.  That is welcoming.

I bought the house in 1986, and for years I had lots of parties.  Christmas parties to put up my tree.  Back-to-school parties.  Mardi Gras parties.  At times I know I had upwards of 80 people in the house at one time.  Entertaining was fun and welcoming friends to my house was a joy.

Gradually, though, my joy diminished and for too long the house was simply somewhere to sleep.  That begin in the early 1990s as my mother’s health deteriorated.  She died in 1993, in July.  Two and a half years later, my younger brother Phil died when a fourth round of cancer didn’t respond fully to chemo.  For those years, as I recall, I spent time teaching, helping out with Mother and then Phil, and then sleeping occasionally.  I didn’t take care of the house.  I didn’t care.  Other things were more important.  Frankly, I was too exhausted to deal with it.

That changed, though, over time, and I began to work at clearing out what I’d simply let pile up.  Between Hurricanes Rita and Ike, I worked on internal clearing of boxes and books.  Not very successfully, I might add.  After Hurricane Rita, I added on a big room, 20×26, and established a huge office/den.  I still had way too many boxes, though.  Way too many.  I rented a storage unit that year too, because I had to move out of my office at school and decided to pare down that collection of books.  I gave a lot away, but still had hundreds of books.  Some went to storage; some came to the house.

After Hurricane Ike, I did major renovations — I replaced all the windows with energy-efficient insulated windows.  The galvanized pipes went away and the new PEKS system replaced them.  I had the wood siding taken down, insulation put up, and then Hardie board siding.  The money ran out, and I have only recently begun again.  This time, I finally had the knob-and-tube wiring replaced.  There are still projects left — sheetrocking the living room walls, putting up a new ceiling in my bathroom, patching a small area of my bedroom ceiling, and tackling the kitchen.  I started that project, but didn’t get very far before Dad got sick.

Now when I go, I never have time for that house, not really.  I think about it, and I mean to do something each week, but usually just catch up with friends.  And sleep.

From Friday afternoon to Sunday morning really isn’t long enough for most things I want to do.  Even clearing out the boxes that are already packed to give away seems to take a back seat to everything else.  All of it will still be there next week. I’ll get back to renovations and projects there at some point.  Patience, patience.

Now my time is spent taking care of renovating Dad’s house, in Egan.

Driving back to Egan this morning, I realized that though I moved to Egan in 1957, Egan was waiting for me,  in a way.

My Dad might have been transferred here, but my mother had roots here, deep ones.  Her mother had been born in Evangeline when my great-grandfather Horn worked in the oilfield there.  But her mother’s mother was from here, and her grandparents lived here.  I had relatives here.  My mother’s grandparents moved to Beaumont in the 20s, I think.  My mother was born in Orangefield, near Orange, Texas, but grew up in Beaumont.

After we moved here, my maternal grandmother visited often, taking me with her when she visited her great aunts who were still around here, and often visiting when others from out of the area came in.  Her mother was one of the oldest children, and her youngest uncle was only three years older than she was.  In fact, his youngest child was in my class.  We graduated high school together.

I can look at one picture of my great-grandmother and her sisters and brother and recognize all of them.  Unlike a lot of people, I remember my great grandmother and her husband; she died when I was 9 and he died when I was in college.  My older cousin remembers our great-great-grandmother, but she was already dead by the time I came along.  No five-generation photos with me in them!

My great-grandmother’s father’s father and mother immigrated from Ireland during the potato famine.  They came in through New Orleans in 1851 and settled there, living for a while on Poet Street.  As my grandmother recounted, he held some stereotypically Irish jobs — a bartender, a cop.  He was even in the Civil War in the Louisiana / Confederate Navy.  Sometime after the Civil War, though I’m not exactly sure when, he moved his family to Egan.  Again, my grandmother told me that he worked on the railroad and homesteaded land here.

The old man wandered off at some point in his old age, and no one is certain where he went.  Some family members think he ended up in Ohio (I think) with a brother.  Other stories have him going back to Ireland.  But he wandered off one day and never returned.

His sons, though, married here and my great-great grandfather brought his family up here.  The ruins of their house were still around when we moved here in 1957, and we were close enough to it that my cousin and some others of us wandered over there a few times, but Hurricane Audrey took what was left of it.

When I drove home to Egan this morning, I was listening to the new Chieftans CD, The Voice of Ages, and it occurred to me that maybe some of this music would have been familiar to my immigrant ancestor and his wife.  Perhaps my love of Celtic music and design might be some kind of atavism.  My collection of Irish music bears out my love of the kind of music some friends of mine have had enough of after three or four songs.  Some of it makes me want to get up and dance; other songs make me want to cry in my drink.  But the melancholy strain of minor-key music just strikes some part of me as little else does.

Tonight, listening to the rain and thunder and watching the lightning flash, I wonder about those ancestors and what it was like for them to leave Ireland knowing they’d probably never see it –or family — again.  Yet here they stayed, and flourished.

I guess in some ways, Egan was always my home, even if I didn’t want it to be.  It was waiting for me in 1957, and it was waiting for me last year, too.

Maybe I’ll put on the Chieftans again.  The weather and the mood suit it tonight.

I awoke this morning to realize that the skies had opened sometime while I was slumbering away.  As I stumbled through boxes to the bathroom, I could see lightening and just then the crack of thunder that rumbled for what seemed like minutes.  It may have been.  It was, after all, 6:00 a.m. and caffeine had yet to hit my system.

Somehow I thought that the rains were coming later today or even tomorrow, but here they were.  Beyond the bathroom window, all I could see was heavy, sheeting rain.  Once I opened the front door and looked out, I could see just how hard it had rained, and how fast.  Our ditch out front was nearly full.  Ditches everywhere around us, in fact, were nearly flowing over.  Huge puddles of water dotted our yard and neighbors’ yards.

Arming myself with the first diet Coke of the day (I had weaned myself away from living on this, at least until recently), I wandered to the new area I have claimed as an office.  My desktop was already in place on a real desk (not a plastic Walmart semblance of one), plugged in and online.  I sat down on a chair (once I’d cleared off the pile of clothes that were stored on it), took a deep sip to jolt my consciousness, and started my day.

The lightening show, complete with sound effects, raged on outside.  Since there are no curtains or shades up yet in this room, the view was unobstructed.  When I was a kid in the camp, weather like this always meant that Dad would get called out to the field.  Of course mechanics did too, but somehow I always hated that the electrician had to be out in pouring rain.

Otherwise, the sound of rain usually calms me.  If I can stay indoors, and especially if I can stay in bed and sleep or curl up with a book, this kind of day is wonderful.  I can make a pot of tea and cocoon.

Not today, though.  I knew there were errands to run, business to take care of.  Whether Tim and his dad would be able to work was uncertain.  Yet by 8, Tim was here and we were clearing my bedroom.  By the time I left for Crowley, we’d moved one of the bookcases from my room.  I also managed to rip a toe with it, but a bit of blood didn’t kill me.  And the bookcase didn’t feel it at all.  Within 15 minutes, I was filling its shelves with books as Tim brought in boxes of those.

By 9, I left.  First came a post-office stop to pick up mail and send a book to one friend and some farm stuff to my cousin.  Then it was on to the bank, after which I sat in the truck and figured out Plan B.  Then a stop at the dialysis clinic to visit with Dad a bit.

There I stayed a bit longer than planned.  With the storms had come a power outage in Crowley, thus everyone was still waiting for the 11 a.m. shift to begin.  It was 11:30.  My father was sitting in his wheelchair, moaning with arthritis pain.  This has become commonplace, but never fails to wrench me.  Here is a man who for most of his 89 years has been a tough man who never complains.  I mean, never complains.  Yet in the last 10 months his pain level has escalated sharply as crippling arthritis has taken over his hip and shoulder joints.  Now, in the last few months, he not only says when he hurts, but moans.  That’s something I remember from other hospital rooms, but not from his room, or from his mouth.  Yet there it is.

So today when I found him like that, I stayed and rubbed his hip joint when he needed me to, or his shoulders, or just stood behind the wheelchair bent over with my arms surrounding him.  If I couldn’t make the pain go away, I could at least try to give him some comfort.  The power of touch is immeasurable.  It might not take the pain away, but it does offer love and reassurance.  When he calls my name over and over, or when he’s in such pain that he gets angry, I just keep my hands on his shoulders and upper arms, rather like comforting an infant or small child.  FInally some of the dialysis patients came out, and Dad was the first person the nurse took in.  I left, hoping that he’d soon be more comfortable.

We went through something similar yesterday at the dentist’s office.  At one point he was in such pain simply from the position of sitting in the wheelchair that we let him lie down on the dentist’s chair, reclining him to a prone position, to relieve the pain.  After perhaps five minutes, he could bear being in the chair again, and I got him back to Southwind and put him back in the bed.

Sitting is something I take for granted.  I haven’t really thought about it much, frankly, until recently.  I sit at the computer, or sit in the truck or car, or on a recliner watching television.  Sometimes I’m a little stiff when I get up, but that passes pretty quickly.  Changes in weather — colder weather, or rainy weather — can make my left hand ache, the hand I had surgery on in 1977.  But that pain passes too.

For Dad, though, sitting is no longer comfortable.  It must position his hips just at an angle that triggers the arthritis pain.  So far, nothing helps.  His pain medication works for a while, but is most effective when he’s lying down.  Consequently, he spends most of his time in bed now.

Which has led to the newest problem, one familiar to anyone caring for someone who is spends most waking time in bed.  Dad’s had a red area that the nurses have been watching, one near his tailbone.  Today the nurse called me to tell me it had opened, that now Dad has his first bedsore.  Only yesterday I’d been asking for one of the mattress pads that is made specifically for this purpose, one that has air channels in which the air pressure alternates as a pump constantly changes the pressure patterns.  One was to be delivered today, the day the first bedsore actually became a reality.  Perhaps, though, the mattress pad will prevent any future bedsores.

Such changes for someone who has been as active as Dad has been are difficult enough for me or for Kay to handle.  What they must be like for him is something I can’t really wrap my mind around.  Only last summer Dad was using his walker and putting in a garden in barrel-halves in the back yard.

Physical therapy continues, and he progresses, despite the issues with sitting.  He walks every day, pain or not, down the hall and back, and to the front door and back.  Steady progress, though slow.

After I left Dad, I grabbed lunch at a drive-through window, ate it as I drove home to Egan, and then went back to work at the house.  I moved a few boxes, unloaded some more stuff and began to make some order from the chaos in the office room.  Tim and his dad finished early today, so after they left, I worked.  I read some.  I continued writing this blog.

By mid-afternoon, Kay had arrived, and we sat and talked for a while.  Then I loaded my car with my weekend bag and laptop bag and drove to Lake Charles.  First stop:  Starbucks and a large, a very large mocha.  I visited with a friend.  We went to dinner with another friend.

And the rain began again.  After dinner, I drove home in the rain.  I parked in the driveway and unloaded my bags in the rain.  I came in, put on my nightshirt, fed the dogs and cats, and went to work, finishing the blog.

So as I sit tonight in Lake Charles typing, listening to the rain and watching the water pool in the yard, for the first time I really appreciate that I can sit for long periods of time without such pain, and that the weather changes irk me when my left hand hurts a bit.  I don’t take for granted anymore the fact that I can sit so long, or that the pain I have in my hand bothers me.  Nothing I experience can compare to what Dad goes through, or what other people like him endure every day.

I distracted Dad as I could, telling him about the house, about moving books and bookshelves and refilling bookshelves, and that the mice continue to challenge me.  He responded for spurts of time, talked to me, asked questions, and then always halted as he bent over in pain.  And moaned.

It’s colder tonight.  My hand hurts a bit.  I can get comfortable with an aspirin, though.

I hope his night is better than his morning and afternoon were.  I’m glad he’s lying down and hope that has eased his pain.

The kind of pain I’m really feeling isn’t physical tonight.  It’s the pain of frustration that I can’t make his pain disappear.  It’s the pain of watching the father who was always so strong become so helpless.  It’s the pain of hearing someone who never complained, who was always dignified in his pain, moan audibly.

I can find comfort in the presence of my pets tonight.  Their touch comforts me.

Rain can calm at times.  It can also disturb.  Tonight I’m left a bit melancholy.

I’m tired of the rain.

As I sit here tonight, looking at the amount of work that has been accomplished in such a short amount of time, I am amazed.  Even though there is still work to be done, knowing that by mid-week next week it will be completed and that I will have begun the process of putting Humpty Dumpty back together again, I think about just how this has come to pass.

First of all, the push to action came only with Dad’s last illness, leaving him so weak that he couldn’t walk for more than a few steps at all, even with assistance, needing me or Kay to bathe him, dress him, feed him.  The long-needed updates just never would have happened otherwise.  That’s a hell of a reason for renovating, but it’s true.  Without Dad’s illness, he never would have allowed all of this work.  Now, he just says (partly joking, but not completely), “it’s only money.”  I’ll go to the bank tomorrow to transfer some more money to the checking account so that I can pay for what’s left and have the cushion he likes to have.

Next, he actually had to be out of the house before work of this magnitude could be done.  I joke that I’m living in a construction zone but the truth is that I really am living in one. Most people don’t have to, I think, but I’ve needed to be here.  Just how chaotic could it be, just how crammed could it be, you might wonder.

At times, I have had to go across the street to Charles’s house so that I could use a toilet while the contractor and his dad and the plumbers were here, working in the bathrooms.  At one point I had a toilet in one bath that worked, and a shower in the other.  Now one is fully functional and the other will be soon.  There’s no point in trying to dust anything.  That would be pointless given the daily opening and closing of doors and the wind blowing in dust from the gravel drives.  Dust seems to appear hourly.  I no longer really care.  I could write in it — something multi-volume, I suspect.

And every room is simply a holding area as I pack and move boxes or bags out of one room to another.  Dad’s old bedroom contains both of his dressers, Mother’s cedar chest, a rocker, several dining room chairs (each holding other items, usually bagged), a desk, and the headboard of a bed (I’m going to repurpose it somehow).  And of course, the boxes of books and things.  Tomorrow the two big bookcases from my bedroom will end up there.  The living room has boxes and baskets, my chest of drawers, two small bookcases and a larger metal one, a library table, a folding table, the stereo cabinet, and the computer.

Kay’s room has stuff piled on her bed, and more boxes.  The one closet in her bedroom is now shallower, having been used for depth in the newly remodeled bathroom — and the new, walk-in shower with a bench. When Tim finishes with it, it will have shelves, giving us usable storage that can be organized and convenient.  And labeled properly.

My room has the only usable bed in the entire house, in fact, at least at this point.  That means that Kay and I really are tag-teaming it: only one of us can stay here at a time.  That bed has to be dismantled tomorrow, at least temporarily, for the new flooring to be put in place.  The old bedframe will go to the trashbin; I’m getting a new one that I’ll have to assemble and stain (thanks to Amazon and its offering of an Ikea double-bed frame).  So tomorrow night, I think the mattress will lie on the floor and I’ll think I’m back in the days of hippie chic.

At times, I sit here and stay out of the way while work goes on around me.  Sometimes I sit at the computer and read and surf the net.  But always I think about how short a period has actually passed since this began, and what an evolutionary process renovation really is.  Some of the work we planned for, but not all of it.

The first actual project, building a porch and ramp, went so quickly and beautifully that I was spoiled.  The second project, new flooring in three rooms plus the bathrooms, went pretty smoothly.  It was the unexpected need to rewire the entire house that has been frustrating to Tim and his dad.

They have battled for three days in the attic and with four (yes, four) separate breaker boxes, with 1946 wiring and with newer wiring.  They have sweated and crawled and discovered that even the newer wiring presented major conundrums and problems.  Wiring that was hot, that was jumped from another room, that led to nowhere, that wasn’t working. . . you name it, they found it.  Firewalls so dense that they broke drill bits.  Today they completed the rewiring.  Tim told me that they’d used “25 feet short of 1000 feet” of wire in the house.  His dad chimed in “And probably pulled 2000.”  I think he was joking, but I’m not sure!

Three days ago, a gas odor led to the discovery that the ancient gas dryer had to be replaced.  How old?  Well, it has an actual pilot light.  That’s what has rusted and that’s the source of the leak. The new dryer will be delivered on Saturday, but the deliveryman can’t hook it up.  It’s a gas dryer.  That means I have to call the gas company to hook it up and approve it with a little red tag.

We knew some of the plumbing was a problem.  We are replacing all of it. The plumbers already shut off and eliminated old gas lines to capped off gas hookups in bedrooms; the wall heater over the old bathtub was also gas, and it has been removed.  The gas line will be rerouted so that it doesn’t go under the slab; that line will be cut off and a new one run instead.

This house is, I have come to believe, the proverbial house that Jack built.  But Jack didn’t know jack, I have also come to believe.  I am amazed at the discoveries I’m making — the person who wired the addition was an electrician who worked with Dad.  He should never have been near electrical wires.  The plumbing in the addition had four different kinds of pipes, much of it salvaged from oil field surplus.

Everywhere we looked, something that had been pieced together no longer worked.  Galvanized pipes had holes in them.  Wires hooked at breaker boxes just ended in the walls, tied to nothing, doing nothing.  I could be frustrated at this, but I’m not.  After all, this house wasn’t a recent construction.

In the few weeks of this project, I have relied on the contractors (new acquaintances, Egan residents, and now I think to be categorized as friends), on long-time neighbors and friends, on family.  The two closest friends are people I’ve known most of my life, both also part of the Sun Oil family, as I think of it, who lived in the Egan camp.  One is a widow whose late husband worked for the company. In fact, when I think about it, she has yet other ties to our family, because her aunt lived next door to my grandmother in Beaumont many years ago, and the two women were friends; indeed, they even shared the same name, as I remember.  The other is someone whose late father also worked for it; he and I are 6 months apart in age,  went to school from first grade through high school graduation together, and he is also now retired, living again in Egan and caring for a parent.  They are family too, a family bound together by shared experiences that go back decades.

We know so much about each other, share so much, and provide support for each other in so many ways.  When blood relatives might be willing to help but can’t because they live elsewhere, the Sun family I am still part of can and does help out.

We laugh a lot; we tease each other without mercy.  Our comfort level is clear in the ways we can and do tease each other.  There’s a shorthand of sorts that comes with such long-term friendships, as there is in any family.  Shared memories and experiences tie us together in wonderful ways.

So without Charles and Billie, I simply don’t know what I would have done.  I can whine or worry.  And I can laugh, always.

Other long-term friends offer verbal support and drop by to check in or call to see how Dad is and how I am.  They are also part of the network here that is so strong and so comforting.

My sister and I text constantly and talk nightly.  My cousins call or email every few days.

Tonight’s blog is perhaps a bit shorter than usual, but then I’ve got to work some more tonight before Tim and his dad come back tomorrow to put in vinyl flooring in my bedroom and carpeting in the old living room that will be Dad’s bedroom as well as in Kay’s room.  Yet more books have to be boxed and stashed somewhere.  And I’ve got to move the printers and computer to the new computer area in the office, somehow making room among the various pieces of furniture and boxes of things that are parked there for now, during the renovation.  Already there are plans on the docket — one more room in the house to clear out and to recarpet, window air conditioners to be replaced by a new central air system (and for the 1946 metal ductwork to be replaced also).

Tonight I am alone, but can hear and see the other visitors I’m still dealing with, ones that I don’t want.  When you live in the country (even in a small town like Egan that is really a village), there are fields.  And where there are fields, there are mice.  And when the weather has been as cool as it has here, those mice don’t want to be in the fields.  No, they want to be in the house, where it’s warmer.  Now I can hear them and if I turn around, see them scamper across floors, around boxes.  Nothing can be left on the counter that isn’t in a plastic, boxed container — the mice haven’t figured out how to nibble through anything like that.  Yet.

Which is why, when all this is completed, I will bring in another resident — one of my cats, possibly two.  Maybe they’ll discourage those particular, unwanted visitors.

Damn.  There goes another one, jumping off the counter onto the floor.  I think I have a mouse circus.  At least for now.

Firewalls add protection not only in computers and software but also in homes.  Quite simply, the purpose of a firewall is to provide some kind of protection from getting in.  It provides a kind of blockade.

Today while they were working, Tim and his dad kept running into firewalls in the house, which meant that re-wiring didn’t go as smoothly as they’d planned.  Sometimes the old pine even broke drill bits.  Tough and resilient, it resisted change and updating.  All day, they fought the 1946 construction in the original part of the house.  What should have taken a matter of hours, perhaps the morning, took all day instead.  Tomorrow they’ll finish the back part of the house, the addition, and its wiring.

How that resonates with me today, on a lot of levels, personal and otherwise.  We put up firewalls to protect ourselves all the time, and that’s fine.  Until we realize that we forgot to take them down — or find that we can’t.  Protection from feelings, usually from deep pain or anger, keeps us going.  Yet at some point, those feelings come back up and blow the firewall away if possible.  We can be deluged by feelings we’ve barricaded ourselves from for far too long.

I know that I often deal with a difficult situation by compartmentalizing it somehow so that I can manage to deal with the immediate, the necessary.  When that’s over, when there’s time, I’ll collapse.  Physically, I just run out of steam.  Emotionally, I am drained and empty for a while.  Often all I feel is depressed or negative for a while.  If I’m fortunate, soon that will pass and I can face the emotions I had to put aside for awhile.  Sort of like those firewalls.

Lately, though, it’s almost the exact opposite: instead of emotions being blocked behind those firewalls, they seem to be right at the surface, ready to be agitated into action.  At times, it’s as though I’m an emotion waiting to be set off.  Today I simply had to walk off, take deep breaths, and drive around for a while — before I could go back and be polite.  Exhaustion doesn’t help me keep the temper under control, even though I want to.

The other thing those firewalls reminded me of today is writer’s block.  The frustration of needing to write, of wanting to create, but running up against block after block after block.  Nothing comes to fruition.  Nothing on paper is right.  Sometimes all I end up with is blank paper.

For a while now, almost a year, I’ve wanted to write.  Manuscripts wait to be revised, but when I pull them up, I am dry and empty.  At best, I can manage to work on a page or two.

Yet two weeks ago my firewall burst apart, and this blog came as a result.  Lots of emotions about retiring, about “losing my life,” about being a caregiver full-time — some recognized and others not so much.  Finally I found the words flowing with the very topic that had been my firewall:  my life here in Egan, my new life post-retirement.

Today, I didn’t do much while Tim and his dad worked.  Not much physical, that is.  I’ve packed a few boxes of books.  I’ve answered some email and read a lot, online and otherwise.  I’ve visited with friends, one I grew up with who lives in Lake Charles now, who stopped by on her way back from Lafayette.  The other is my friend who lives across the street; he ran an errand for me while he was in Crowley and I was just sitting here.  Having the time — taking the time — to spend with them is a real treat.  When I was still working, it was difficult to take the time for visiting with friends.  Now I have a lot of time for friends. So while Tim and his dad worked, I visited.

Mostly, I just tried to stay out of the way.  As the day passed and the firewalls frustrated them hour after hour, I thought a lot about why those firewalls had been put in, and why they were where they were.  I couldn’t tell you why the original design called for them, or why the builders put them where they did.  I just know that they’re there, and that they’ve both served one purpose and nearly halted another.

And in addition to the firewalls:  the wiring itself.  The original wiring, in the attic, is from 1946.  I have a piece of it to show my dad, the retired electrician, who will shudder when he sees it:  frayed, broken, and often bare, it was a fire hazard waiting for an event that (luckily) never happened. Sometimes we’re lucky and the broken places don’t lead to fires.

But the surprising problem wasn’t just that wiring but the more recent wiring, too.  Lines of it started, connected properly to the box, but led nowhere, and simply ended in walls without being connected to anything.  Some of the wiring, I think, came when my brother Phil did some work in the 1980s and early 1990s.  It’s good wiring, but not all of it was being used.  Maybe he was preparing for future projects, but those never came to be.  What did he have in mind?  I wondered; I asked Dad, but he didn’t know.  There were no notes telling us, just the mysteries of the unused wires.

Most houses have a central box (a breaker box, as they used to be known).  Ours has four.  Nothing was labeled, either, so Tim and his dad have puzzled out what led where, and what controlled what.

Extra wires to nowhere; four breaker boxes with unlabeled circuits and lines.

So it came down to this:  identify what to keep, what could be used, and what to eliminate and cut away.

Once the front part of the house, the original part of the house, was done and the receptacles covered, Tim and his dad called it a day.  They’ll finish the rest tomorrow.

I can’t wait to show Dad the wiring exhibit and tell him about those wires to nowhere.

I don’t need for fires to break out from the bared emotions but I’m glad my firewalls have been broken through for now, too.