Author Archives: Cheryl L. Ware

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About Cheryl L. Ware

I grew up in an oil-field family — Dad worked for Sun Oil Company from 1946 until 1982, when he retired. My dad’s family is from East Texas — has been in the same county since before the Texas Revolution. My mother’s family has deep roots in South Louisiana going back to 18th century immigrants from France and Germany, to 19th century Acadians from Nova Scotia, and to 1851 Ireland. I have a Ph.D. in English and taught composition, introduction to literature, and American literature at McNeese State University from 1981 to 2011. I love to read and to travel. I cherish my family, friends, pets, and laughter. So just how did I end up making jewelry? The journey in short: I retired in May 2011 as a Professor of English at McNeese State University in Lake Charles,Louisiana. My father worked for Sun Oil Company, so we moved around, though not as much as many others. We settled in Egan, Louisiana, in 1956. That's where my brother and sister and I grew up, and that's where I found myself as I became a caregiver for my father. I'm teaching again at McNeese, part-time only. Making jewelry was a hobby I'd started a few years prior to this, and over time, the hobby has become an avocation as much as teaching was and is. It is an expression of me, of my love of color and texture and shape and design -- just as teaching is an expression of my loves of writing, of nonfiction and fiction and poetry, of the human experience across time and culture. The hobby grew from one technique or two (wire-wrapping and setting calibrated stones and cabochons in purchased findings) to include working with metal clay (firing with a torch and using a kiln), to traditional metal-smithing. I'm hardly a master of all, but an enthusiastic learning, continuing to read, take workshops, and refine and improve my skills. It's a journey that reflects my many interests -- reading, traveling, teaching, writing, painting, even sewing and crocheting. Creativity in one area feeds others, I've found. My jewelry hobby used to be something I could contain in a few boxes. Now it consumes a room. It's also now a business. I've been selling at area craft shows and fairs. This website is a new venue for my jewelry. It is also a work in progress! Follow me on my journey here on my webpage. I'll be offering jewelry of different types and materials, across a variety of styles and prices. I hope you enjoy learning more about me and my jewelry.

Sunday surprises

Posted on April 22, 2012 by Cheryl L. Ware

I guess that there’s a certain tone of voice that signals an emergency.  Kay’s voice had that tone just about an hour and a half ago.  I was immediately awake and then at Dad’s bedside.  His dialysis graft had been bleeding — for how long, who knows?  It had done so long enough that the blood had puddled underneath his arm and soaked the pull sheet and onto the bed sheet. And the pillow under his arm.

I put on gloves and took off the ace bandage — only to see blood spurt.  Arterial blood, bright red.  It sprayed up and across the bed and pillow.  I asked Kay to give me the towel that was near — and used it to soak blood as I applied hard pressure.  His arm was elevated on a pillow.

Kay called home health, who got the nurse to call.  She called about 3:00 — and Kay told her what had happened and that the bleeding had stopped.  I continued to hold pressure, though, for another 15 minutes or so just to be sure.  By the time the nurse told Kay she’d be here at 8 a.m., I realized my back hurt from standing and leaning over the bed.  Kay got me a chair so I could sit.  Then she got the ace bandage from yesterday, which was still damp.  A few minutes in the dryer, and it was ready — and then I was able to rewrap Dad’s arm.

At that point, of course, we still had to change the bed, and Dad’s t-shirt.  Not wanting to hurt him more than we had to, I helped Dad sit up and Kay started pulling the bottom sheet off the bed.  It took a long time, and Dad’s back was hurting, but we got it done.  The pillow under his arm had been soaked.  The pillow under his head only had a bloody pillowcase, but it was okay.  Once the sheets and pillows were off, and the fresh sheet was on the bed, Kay got another pillow for Dad.  Then we had to put a clean t-shirt on him.  Actually, I asked him if he wanted to sleep without one, or wanted us to put one on him, and he wanted a t-shirt.

Dad is very modest, always has been.  He isn’t one of those guys who walked around without a shirt on.  Ever.  This is one reason that changing his shorts and cleaning him up and putting fresh pull-ups has been difficult.  Or was the first time or two, anyway.  Now I just do it without hesitation, as quickly as I can, and don’t think about it.  Bathing him wasn’t as much of a difficulty, because until last week he could stand up and help change his own shorts and pants.  Now he’s like a baby who has to have it all done for him.

The whole time we were working on him, he worried that we were tired, that we were hurting ourselves.  He was thinking of us.

And what did he say when we’d pulled him up in the bed so that his head was up on the pillow, and after he was covered with a blanket?  “You girls are tough.”  And he meant it in a good way.  “We learned from you, Dad,” we said almost in unison.

And we have.  That toughness is exactly what we learned from Dad — no matter how difficult the task, no matter how unpleasant, you just buckle down, set your mind to it, and do it.

So we do.  It’s what he taught us.  It’s what we can do for him.

The nurse will come at 8 a.m.

It’s only 4:20 in the morning now, and there are a lot of hours left in Sunday.  I hope the rest of the day is without event– but if it isn’t, I’m prepared.

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Saturday night, Week Two

Posted on April 21, 2012 by Cheryl L. Ware

A tiring few days, these last days of the week.  The fall on Sunday, even without anything fractured or broken, has led to a noticeable change for the worse in Dad.  It’s been strenuous, and tough.

Certainly transporting him by ambulance was the first major change after the fall, but not the only major change.  Prior to the fall, he was able to get up at times and walk with the walker and help — but no more.  Now he needs help.  Now he has muscle spasms — even with the muscle relaxers I got on Wednesday.

And his mental state has really shown a decline.  He is more confused, wandering in time and space more.  He calls for his mother, or my mother (Irene), or his sister (Mildred).  He gets more agitated, is more restless.  He’s more like he was in the hospital when he was hallucinating.  He tries to climb out of the bed.

And he succeeds in that, too.  He has gotten out of bed and fallen twice in the last two days.  Yesterday morning about 8:30 I heard a small thump — got up — and found him sitting on the floor, the walker turned over on its side and him sitting with his back to the bed.  I had checked him not 10 minutes before.  I was in the next room.  I was awake.  He insisted he’d called, but he hadn’t, and he managed to get out of the bed.  I got Charles to help me get him off the floor and back into bed.  He had no noticeable injury.

Just after 11, he was off to dialysis.  I went to bed, too tired to do anything else.  I’d been up all Thursday night, basically, checking on him every two hours or so.  By Friday morning, I was just out of any energy at all.

He came home from dialysis — had slept through it — and my sister got here shortly afterwards.  He slept for a while, but then woke up and was highly agitated, despite pain pills and muscle relaxers.  I slept through the night, while Kay stayed up checking every couple of hours.  At 6:30 a.m. this morning, though, I heard another thump and we both got there at the same time.  Once more, he’d managed to get out of bed — without the walker — and fallen, though again, very luckily, not hurting himself. He’d managed to get out of bed despite the side rails.

It reminds me of how he was when he was in the hospital with hallucinations earlier this spring, after the kyphoplasty for the L1 compression fracture.  He was stronger than I’d thought possible, and I stayed awake for 48 hours watching him.  This has been very similar.

Since he fell on Sunday almost a week ago, his downward slide has been noticeable.  Physically, he can no longer walk with the walker for the physical therapists.  Yet he has managed twice to get out of bed and try to walk.  His pain is greater because of muscle spasms, and even with the Flexeril I got on Wednesday for him, he has had problems.  Today, we got the Ambien refilled — maybe that will help him sleep through the night.  It’s not that we want to medicate him into Never-Never Land; it’s that we want him to sleep without disturbance, and we need to as well

I stayed in Egan this weekend after Kay came — just too exhausted to drive even 45 miles.  Yet that was fortuitous.  Certainly the second fall this morning required both of us.  Last night, though, was the time when it took both of us to work.

We’d fed him supper.  We were lying him back in bed — and at the same time Kay and I noticed that his left arm — where the dialysis graft/shunt is — was bleeding.  It was spurting, in fact.  I grabbed a towel and immediately applied pressure.  She called 911.  We got him to the hospital, and the arm had pretty much stopped bleeding by then, but they called his surgeon anyway.  They kept us until the ambulance could return to take us home — and it was nearly 10 before that happened.  His shunt has been problematic, and now it is again.

Today when the home health nurse came to check it, it began to bleed again as she unwrapped the pressure bandage.  A nurse will come tomorrow to check it as well.

In the meantime, he has been quite restless.  He has talked a lot — most of it not understandable.  He has been agitated and restless.  He ate supper though and then slept for a while.  Just now, Kay and I gave him the Ambien and a pain pill and now we’re waiting to see how that works tonight.

Our friend Billie has been shocked today, I think, because she’s seen for the first time how disoriented he is, heard him talk and seen how out of it he is.  For her, Dad is the last friend of the Sun Oil group still with it.  Now he’s slipping away from us.  I know that has to really hurt her.

Kay and I are surprisingly calm about it all.  We have talked a lot today and tonight about what we want and don’t want, about what we will do.  It’s a sad time, certainly, a heart-breaking time, but a time when the two of us are able to be together and on the same page regarding everything.  That’s a comfort, truly.  If we weren’t, that would be a problem.

So here it is, a Saturday night in Egan.  I slept a few hours this afternoon.  I needed that.  I got up while Billie was still here, sat and talked with her and Kay.  Since she’s been gone, Kay and I have shared a bottle of Prosecco and talked.

Now it’s a bit after 10 p.m.  I think I’ll grab a snack and read for a while.

And hope that the Ambien helps Dad to sleep through the night.

My generation was right:  Better living through chemistry.

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Week 2, Day 3: In the Moment: Take Two

Posted on April 18, 2012 by Cheryl L. Ware

Well, it’s now Wednesday evening, just 8 p.m.  Dad has been back home for 3 1/2 hours, and until 15 minutes ago was sleeping.

Then he woke up, called me, and I realized that this time there was no Home Health aide to clean him up.    The odor was unmistakeable.  It was my turn.

I’d gone shopping while he was in dialysis, so I was prepared with adult pull-ups.  But then I realized I’d need the throwaway gloves.  Where had I put them?  A couple of minutes later, I had them.

Once I had them placed where I could get to them easily, I put on a pair.  I got a pan of water.  I got a towel and the throwaway wash cloths.

The towel was to cover Dad, to protect his modesty.  And my embarrassment.  Next I had to get his sweatpants and shorts off, which wasn’t easy, given his painful left leg.  It took more time than I’d like, and hurt him more than I wanted, but I finally had them off.  I threw the underwear away.

Cleaning him was easy.  My stomach handled it all pretty well.  Then I had to put on the pull-up shorts, which wasn’t as easy as getting them off.  But finally they were on.  Then the sweatpants.

Now we’ve both survived my first cleanup experience.  And I anticipate it should get easier.

Now if the new muscle relaxer kicks in, he might get some relief.  I hope he’ll eat first, though.

So I guess I’d better get something for him to eat.

New part of the day, new experience.

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Week 2, Day 3: In the Moment

Posted on April 18, 2012 by Cheryl L. Ware

Dad’s been home now just over a week.  Every day has reinforced my sense of being more in the moment that I usually manage.  Just being in the moment has been a goal of mine since college, when I read the works of Ram Dass, especially Be Here Now.  It’s not something I ever conquered — that need to control my time, to plan my future, to spend so much time in the yet-to-come that I completely (or nearly so) ignored the beauties of the now.

That is one benefit of living with Dad now.  I can spend some time thinking ahead, but not much, really.  And I don’t assume that my plans will come to be.  No, the plans I make now are really more like possible scenarios.  Yes, that’s it — I think about possible scenarios.  But I don’t count on them.  That is only frustrating.  And disappointing.

Now I spend each day in and of itself.  I awaken to the alarm clock, get up and cook breakfast for Dad.  I give him his medicine.  I put laundry on.  I wash dishes.  I spend time with him.  I watch television.  I read.  I putter around the house and porch.  There is no particular order to these things — they just sort of happen as they are needed.

On a beautiful cool morning like today, I spend time on the front porch with my iPad, reading The New York Times and CNN online.

It’s Wednesday, which means that the home health aide comes to help bathe Dad, and today that’s wonderful.  Today has been a turning point, one bound to come, as certainly as what happened on Sunday was bound to happen.

On Sunday I was sleeping in my bed in Lake Charles, and about 8 the phone buzzed with a text from Kay.  Dad had fallen in the bathroom and she’d managed to get him up, in the wheelchair, and into bed.  What to do now, call 911?  No, I told her — call Home Health.  She did, and they said a nurse would be there in an hour.  Within 15 minutes, I’d dressed and packed and was on the road.  I was back in Egan before the nurse arrived.

After determining that the on-call doctor (who was rude and chewed the home health nurse out for calling him, adding that he’d “kill” his wife for giving out his number) would’t help by authorizing the mobile x-ray unit to visit us, the nurse arranged for an ambulance to take Dad to the ER in Crowley.  I rode with him and Kay followed in her Rav 4.  After x-rays and an exam by the ER doctor, Dad was released — luckily, no fractures, no breaks at all.  The trick:  now we couldn’t get him home by ambulance.  Kay and I managed to transport him in the Rav, and at home I got the wheelchair and we got him back to bed.

He hasn’t been able to put weight on the left leg since then.  He’s been in pain, with frequent leg and muscle and back cramps.  He cannot sit up for more than a minute or two.  He cannot use the walker at all now.

Which led to yet another dilemma:  how to transport Dad to dialysis.  On Monday morning, I talked to his primary-care physician’s office, and learned that I needed to talk to Acadian Ambulance on my own.  I did that, and within 15 minutes had arranged for transportation to dialysis.  That day I followed the ambulance to dialysis, went in with Dad, and talked to the nurse and staff about what had happened.
Then I had lunch and went home, falling into bed for a nap.  I got up, put on some laundry, and watched television while I waited for Dad’s return.  That was uneventful, and I signed all the paperwork.  The phone call later from the administrator who’d ridden with Dad was a surprise — certainly, the call was necessary since he was telling me that Dad had been evaluated and approved for such transportation (Medicare requirements), but it was also partly personal, since the administrator wanted to tell me what a treat it had been to have Dad in the ambulance.  He’d enjoyed visiting with Dad, and asked if he really had played baseball; I told him yes, that Dad had in fact played ball at the University of Texas for a short while.  Dad had reminded him of his own grandfather, and he just wanted to let me know how much he had enjoyed the trip with Dad.  Such surprises are joyful for me, because I know Dad is wonderful not just as a father but as a human being, but with such comments I have the pleasure of knowing that others appreciate him.  Even as weak as Dad is, as in pain as he is, he makes conversation warmly and with interest.

How quickly such turns can occur — on Saturday, Dad had been alert and feeling good.  He watched baseball on TV most of the day, visiting with Kay and our friend Billie.  He ate a good supper of spaghetti that Kay had made.  He had a day better than most days had been.

Yet on Sunday morning, in the bathroom after Kay had helped him get there, his legs simply buckled and he fell.  Even with nothing broken, Dad has now become less mobile, less able to assist me (or anyone) in turning or getting up or getting dressed.

He was in such pain that he wouldn’t let me change his clothes, even though I tried.  He let Billie and me help him to the bedside toilet yesterday only because I refused to let him get to the actual bathroom.  It was, in fact, a difficult task for the two of us to get him out of bed and on the bedside toilet.  He was frustrated after all of the effort, too, because nothing happened.

Pain pills help him for a time, but not long, and not enough.  By last night, I knew that I’d be calling Dad’s doctor this morning to request something more — a muscle relaxer, something, maybe stronger pain medicine.  But I knew that having him lie there and moan and yelp with pain just because he lifted his left leg (or tried to) just wasn’t acceptable.

Yet he was hungry enough to request chicken-fried steak for supper — and I had some ready to put in the oven (thanks, Walmart, for frozen chicken-fried steak patties).  With green beans and mashed potatoes and peppered milk gravy, that chicken-fried steak satisfied Dad and I was happy to see him eat almost all of his supper.  I joined him in the meal, enjoying mine too.  I cleared off the bedside table, cleaned the dishes, and sat with him for a while.  He warned me that he might have to go to the bathroom in the night — and would probably just “go right here, in the bed.”  I told him that was fine, not to worry.  Yet he was, because that was so unpleasant for him.  Dignity often goes out the door with illness, with debilitating pain.  He was embarrassed for saying this to me. I tried to reassure him that it would be okay.

By 8:30 last night, he was in more pain, so I gave him another pill as well as his night sleeping pill.  I tucked him in, kissed him goodnight, locked the door, and went to my room.  I crawled into bed, read a while, and was out by 9 pm.  I slept until 8 a.m. this morning, knowing I could.

Yet by then, Dad was awake.  I fussed because he didn’t call me earlier. Sure enough, he had indeed had to simply go to the bathroom — in his own underwear.

I quickly fed him breakfast and knew that the home health aide was coming, so I didn’t start moving him around yet.  The less of that done, the better.  She arrived, and I told her what had happened.

She cleaned him up and then bathed him and dressed him in clean clothes.  Before she left, she gave me some good tips for taking care of similar problems.  I had put out diapers, but Dad refused them.  Instead, she suggested that I look for adult pull-ups — much more like underwear, and thus more dignified while still helping me out.

Another new surprise twist in caring for Dad — and I just have to learn to deal with it.  The aide only comes once a week, and both Dad and I will have to work together now in dealing with similar incidents.  It’s an invasion of his privacy and a reduction of his dignity, I know, for his daughter to change his underwear and clean him up like a baby.  Yet there’s no one else to do it.  I’m not sure how I feel about it — I used to clean Mother up, certainly, but we were the same gender.  This is different.  I’ll make it happen, despite my own embarrassment, and Dad’s.  I’ll try to make light of it.  I want to allow him his dignity as much as possible.

And yet another unpleasant surprise came today when I called to arrange ambulance transportation to Dad’s follow-up visit to his cardiologist tomorrow (test results from the recent nuclear stress test came back with abnormal results).  Medicare and supplement insurance do not pay for ambulance transportation to a doctor’s visit!  Even a reduced-rate cost would be just over $500.  I am now waiting for a return call from the cardiologist’s nurse to see whether I can leave Dad at home and come in for a consultation without Dad.  The ambulance is tentatively scheduled in the meantime.

Unless the muscle spasms disappear, and unless Dad regains the ability to sit without such pain and use the wheelchair, I don’t know whether I can actually manage to get him into a wheelchair, into the truck, and to the office and back home again.

Not that I wouldn’t willingly use the ambulance for such an office visit, but at that cost, I know I need to be judicious in using it.

All of this makes me wonder just how our elderly manage without family.  I know that nursing homes and assisted living facilities are choices for many. They are, however, expensive, more than mere Social Security payments can cover.  Moreover, I know that for Dad, this would truly be awful — he endured the two months or so at Southwind because it was necessary, but he always knew he was coming home.

Now that he is home, I know that he’s secure in a known environment.  I’m there 24/7 during the week.  He has friends drop in for visits.  He doesn’t have a roommate who is less than thoughtful in so many ways.

He has privacy.  He has his own home around him.  He knows he is loved and cared for by his daughters, that friends are there to help.

So much happens in such short periods of time.

I take my life day by day — I hope for weekends in Lake Charles, I hope for a week in Greece this June, but those will be gifts for me, treats.

Certainly I live my life a day at a time.  More properly, perhaps, I live it hour by hour, even minute by minute.

Even a minute brings such profound changes.  One minute, Dad was able to help us get him up and dress him and he could sit in a wheelchair.  One minute more and he’s on the floor of the front bathroom because his legs have given out.

From Friday to Monday, he went from transportation via wheelchair and truck — with me — to transportation via gurney and ambulance.

It’s only Wednesday.  It’s his tenth day back at home.

Living in the moment isn’t a theory any more for me; it’s reality.  I only have the moments, and I cherish them.

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Happy Hour

Posted on April 14, 2012 by Cheryl L. Ware

When I worked, it was pretty common for a long time for a lot of us to meet on Fridays for happy hour somewhere.  Since retirement, though, I’m out of that loop.  My life has its own loops, but that one isn’t in it.  It’s been replaced by occasional adult beverage nights at my house.  Charles will come over and one of us will supply the drinks.

Yesterday, though, the adult beverage night happened on a Friday, and Kay was there, and so it was our own happy hour.

And after yesterday’s long list of tasks, it was welcome.  Not for the one tall drink (or at least not just for that) but for the company and the laughter.  I had a giggle fit the likes of which I haven’t had in months.

By the time I dropped Dad at dialysis, I’d already been up for 6 hours.  I’d made breakfast for him, let him sleep some more, worked on my taxes, washed dishes, put some laundry on to wash, and then awakened Dad so I could shave him and help him change clothes.  Once I left the dialysis center at 11:35, I had 25 minutes to get to Iota to get Dad’s taxes finished.  I made it with 5 minutes to spare — signed the paperwork, paid the bill, picked up the folder, and then headed to Egan.  I tried to start mowing the yard, but didn’t get far.  The riding mower stopped; I wasn’t sure what was wrong — out of gas, or a slipped belt — but I just left it.  Got back in the truck.  Drove to Walmart in Crowley, calling Charles to see if he could check to see if the belt had slipped.  In Walmart while I was shopping, Charles started texting me.  Playing Marco Polo to find me in the store wasn’t easy with texting — no “pinging” sound to guide by!  He had a good laugh because the mower was simply out of gas.  He filled it up for me and then came in to shop too.

I filled the cart with many many items.  Headed home, unloaded the lot, and realized that as much as I’d gotten, I’d managed to forget a few things.  I met Kay at McDonald’s for a few minutes before we headed to dialysis.  We loaded Dad in the truck and then I was on the road, back to Egan, with Kay not far behind.  Once I got him settled, and she was there to be with him, I headed back for a second Walmart run.

And ended up with far more than I’d planned.  While I was there, Dad started talking about getting out some frozen vegetable soup and adding to it — so I had to pick up some potatoes and some canned corn.  He had frozen tomatoes.  Once more I unloaded the lot to the truck only to realize I’d again forgotten one item, something Kay needed.  I grabbed my wallet and went back in for round 3.  The lines were long, and I was gone a couple of hours for the whole of the second trip.  Finally I got to Egan and unloaded.  Again.

One thing our family loves to eat  is pimento cheese.  My late brother Phil’s fiancee was amazed at how much we loved it.  Dad usually settles for the store-made pimento cheese, but not me.  I start from scratch and make it.  It’s real.  And yesterday Kay and I had the same idea.  I had already put the ingredients on my shopping list when she suggested that I make some.  We chuckled at that one.  It’s a given in our list of comfort foods.

So once I was back in Egan and we’d put everything away, I made a huge batch of it.  I also divided the remaining shrimp étouffée into smaller containers and put them in the freezer.  It joined the chill I made two weeks ago for me.  It’s handy to have some things ready to thaw and eat — and homemade, too, not pre-packaged stuff.

One of the things I’d picked up was some limes, so I texted Charles that the Ware bar was open for business.  He came over and while Dad rested after eating some vegetable soup, Kay and Charles and I enjoyed our adult beverages, ate some chips and guacamole, and talked.

And laughed.  It’s fun to reminisce, and between the three of us, we covered a lot of ground.  I started giggling so hard that I couldn’t talk — I don’t even think anything in particular set me off, but the release was wonderful.

One drink, lots of entertaining conversation and memories.  Lots of laughter.  Friendship and family and love.  Dad in the front room that is now his living room.  My dogs in my bedroom, waiting for me.

I went to bed comfortable, happy, and ready to head to Lake Charles this morning to face the flea infestation at my own home.

Which is exactly what I’ve already done by 10 a.m. — gotten the three cats into their respective carriers, put them in the truck, set off flea bombs, closed the house, gone to the vet and dropped off the cats to board until Tuesday and have their annual shots and be de-flead.  Now I’m at Starbucks, enjoying the time and leisure with a venti mocha.  I’ve already seen one friend this morning here — and another’s one the way.  Afterwards, I’ll hit the craft store, pick up meds at Albertson’s, and go to visit another friend.  There’s a poetry reading here at McNeese tonight, an old friend and former professor here — part of the 30th anniversary of the MFA program at McNeese; he was the long-time director of the program.  I hope to see more old friends and former students.  It’s going to be fun.

It was happy hour yesterday, for sure.  And I think there’s an all-day happy hour going on for me now, even if the beverage of choice is a mocha.

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Homecoming Week

Posted on April 13, 2012 by Cheryl L. Ware

It’s Friday morning, and Dad came home on Monday.  It’s been a week for homecoming, for adjusting, and for many discoveries.  A long week, but one worth it all.

From last week until Monday I worked to get the house cleaned, organized, and ready for Dad.  My friend Patty came from Moss Bluff a couple of times, and the two of us managed to get a lot done.  By Easter weekend, when I needed to see Dad, I was working still, and exhausted.  Kay came in on Saturday, and I just stayed in my bed and slept.  No visit to Lake Charles.

By Monday morning, things were ready.  By 11, Dad’s hospital bed had been delivered and set up and I put fresh new linens on it, with a blue comforter.  The bed is in what was the living room and is now his bedroom.  I angled it with the head toward the kitchen and the feet toward the front of the house so that he could see the television and look out the front door if he wanted.  I drove to Crowley, signed the discharge papers, loaded his clothes in the truck, then wheeled Dad (holding more stuff on his lap) to the truck and left.  A few minutes down the road, I pulled in at the dialysis clinic and reversed the procedure, getting the wheelchair out of the truck bed, unfolded, and getting Dad out of the truck into the chair.  I sat with him in the waiting room until the dialysis tech came to get him, and talked with her briefly.  Then it was off to run errands.  Medicine first, then a couple of other stops, and then back to Egan.

I unloaded a few things, leaving the rest until later.  I set up Dad’s medicines in his pill box and put some clothes away.  Most were dirty, though, and I left those near the laundry room for later.  Back to Crowley, a quick stop for celery and other things, and then to dialysis.  By the time I picked Dad up and got him home, I was truly tired.  Getting him out of the truck and into the house wasn’t too hard, but learning to get his wheelchair up the ramp and in the house was a bit tricky.  He was really tired, so I put him to bed.  While he slept, I made shrimp etouffee and cooked rice.

He ate some etouffee, enjoyed it, and then after taking his medicine, slept.  I tried to sleep, but gave up — he was restless, I was anxious, and didn’t really sleep steadily. At 3:30 a.m. I looked for him and he wasn’t in bed; he’d managed to get out of bed and into the kitchen– without a walker!  I have no idea how long he’d been there, but his skinny legs were pretty shaky, and I managed to get him back to bed.  He was confused, thought it was suppertime, and had been ready to get something to cook.

Needless to say, I did not sleep any more that night.  Luckily, the recliners in the room are very comfortable.  My iPad kept me company as I watched and worried.

Tuesday morning was a busy one.  Physical therapy came to evaluate and assess his condition; a physical therapist will come twice a week to work with Dad.  While the PT was still there, the home health nurse came to evaluate and assess Dad as well.  Dad was pretty alert by this time, which was good to see.  He interacted with the PT and nurse and held conversations.

He slept; we had visitors on and off that afternoon.  Tuesday night was better — I gave Dad his bedtime meds a bit later, to assure that he slept through the night.  Or I hoped so.  I slept, on and off.

Wednesday morning was pretty uneventful.  I cooked breakfast again; he ate.  He always wants his coffee, though I notice he doesn’t drink as much as he used to do.  Still, it’s something he wants. The home health aide came to help Dad shower. By 11:30, I’d delivered him to dialysis again and headed back to Egan.  My friend Patty had come again to help; she was catching up on Dad’s laundry while I took him to Crowley.  I came back and we worked some more.  Charles came over and visited some; I love friends who bring chocolate cake with them!  That was a perfect snack.

Errands, errands:  this time to Jennings, to find a bed alarm (the home health nurse had told me I could get one at the medical supply pharmacy there), a new shower bench (adjustable, because the one in the shower is too low).  I then headed through Egan to Crowley, stopping for another couple of errands.

Dad had been clear all morning.Wednesday afternoon, though, when I picked Dad up at dialysis, the tech told me he’d become a bit disoriented.  He still was so — and stayed that way through yesterday.  Every day at dialysis seems to tax him a bit harder.  He slept on Wednesday night and wouldn’t eat supper, though he did take his medicine.

Yesterday, I puttered around the plants on the front porch.  Carmichael’s delivered the portable oxygen concentrator that’s been in repair for nearly two months.  Physical therapy and home health came again.  Billie sat with Dad so that I could take Dad’s tax information to his CPA in Iota.  I quickly picked up mail and came home.  After Billie left, I warmed up some lunch and he ate, slowly; he finished his small bowl of etouffee.  Later in the afternoon, he wanted cake, and ate the whole piece. That was good.  He was still a bit confused, though less.  His back has been giving him a good bit of pain, and the pain meds help.  He does sleep a lot, though.  But I have to pay attention: last night while I was working on my taxes on the computer here in the office, I heard him — he’d gotten out of bed and was using the walker to head to the back bathroom, which has always been his.  Only when his walker wouldn’t fit in did he believe that he had to use the front bathroom.  By the time he’d turned around and gotten back to the living room, he was too tired to do anything but go back to bed.

Even confused, he manages to do things that surprise me.  Yesterday he kept talking about cooking peas.  He was dreaming, I kept telling him.  I wasn’t cooking peas, and neither was he.  He kept insisting, though.  It was about 5 when I finally noticed a plastic container out on the kitchen counter.  You guessed it — frozen peas. Just when he got them out, I have no idea.  But believe me, I’m learning that he manages to do things whether he should or no.

By this morning when I got up at 6:45, I’d been awake for awhile.  Dad was awake too, and I started breakfast while I gave him his meds.  In between, I finally started writing this blog again.  It’s 7:45 now.  In the last hour, he has gotten out of bed and used the walker to go to the bathroom by himself. He’s eaten part of his sausage and most of his biscuit and jelly.   He’s resting again now, after taking a pain pill.  I told him I’d let him sleep for a while.  I need to shave him and help him change clothes before I take him to dialysis.  While he’s there, I will run errands.  I also need to put the bed alarm on the bed — it’s a pad that fits under the sheet, wired to an alarm.  When Dad is off the pad completely, the alarm sounds.  I’m sure it will startle both of us if it goes off.  But I don’t want any more 3 a.m. surprise visits to the kitchen.  Nor do I want to find any more containers of frozen peas (or whatever) on the counter and wonder when he got those out of the freezer. I’ll unload the groceries and the shower bench.  I probably ought to load the extra garbage bags and boxes and take them to the dump as well.  By 3:30, I’ll be at the clinic waiting for Dad, and wondering what to expect.  Will he be confused again?

Homecoming Week in high school and college is usually about football games and parades and celebrations.  It’s been Homecoming Week here, just without the football game or parade.  Celebrations?  They’ve gone on all week, every day.  I celebrate that he’s home and asks questions about the house occasionally.  I celebrate when he wants to look outside and I coax him to sit on the front porch bench for a few minutes.  I celebrate when friends drop by and he engages in conversations.

Those celebrations are important — he’s home.  He knows it and is comfortable.  He’s glad to see friends.  Even with the confusion and the weakness, Dad knows he’s home again, and I think he’s relaxed more.  He smiles more than I saw him smile while he was in Southwind.  Sometimes, I think, he wasn’t sure he was going to come home.  Now he’s secure in his home of nearly 46 years.

It’s been a week of adjustments — for both of us.  By today, I know the schedule to expect from home health:  Tuesdays and Thursdays, physical therapy; Wednesdays, aide to bathe Dad; twice a week, home health nurse.  I’ve figured out that my free time to run errands will be on Mondays, Wednesdays and Fridays while Dad is at dialysis.  If I need to make an appointment for me in Lake Charles, it needs to be on Tuesday and Thursday morning, when Billie can sit with Dad; I need to be back by 1 because she works at the library in Crowley on Tuesdays and Thursdays from 2 p.m. to 5 p.m.   Friday afternoons by the time I get Dad back from dialysis, Kay will be here, and I can have until Sunday afternoon to head to Lake Charles to my house.  I know I’ll have a week to 10 days in June; I’m trying to figure out how to have a longer break — I want to go to Greece to a friend’s niece’s wedding, and to see my apartment in Athens, and to hang out with friends there.  That’s my goal, anyway.

I can tell that every day I will start Dad’s breakfast by 7 — a biscuit, one patty of sausage, and some coffee.  He doesn’t want an egg right now.  I’ll cook.  We eat supper together every night, which is good for both of us.

He sleeps.  While he does that, I do laundry.  I watch television.  I wash dishes and I cook.  I check on him frequently, sometimes talking with him if he’s awake.  Reassuring him if he’s confused.  Today he told me about a trip to town, seeing someone he used to work with.  I guess his dreams take him places he can’t go anymore. I don’t fuss at this; I just accept it and nod and talk.  Frequently, he tries to get out of bed because we “have to go . . .” somewhere; I reassure him that no, we don’t, that he’s at home and we don’t have to go anywhere yet, that he can go back to sleep.  Keeping calm is easy, I find, and if I’m calm, it sets the tone for him.

Now I also I putter around the front porch plants.  They’re all looking healthy and green.  The agapanthus are beautiful and blue; I have some other smaller blue flowers as well.  My friend Carolyn gave me some lovely yellow flowers in a blue pot.  I have two kinds of ivy in hanging baskets.  I’ve planted a lot of herbs.  I have a hibiscus tree in a big pot.  The windchime reminds me often just to close my eyes and listen, to sit and enjoy the moments.  The hummingbird feeder and bird feeder haven’t gotten any action yet, but I’m hopeful — and they’re cute, anyway.  The yellow bench with the blue and tan floral cushion is comfortable and inviting.  It’s lovely to have the small space so handy, so available — and so welcoming to all.

As the week winds up, I now find time to write as well — finally.  It’s as though I’ve been racing for days to get ready to get Dad home, and then to get Dad settled and to figure out what’s going on.  Now, I think I have a handle on the general scheme of things.  I’ve still got chores to do and appointments to set up; I need to set up a follow-up visit with Dad’s primary physician.  Today while he’s in dialysis I’ve got to buy groceries and some cleaning supplies.

Charles reminded me yesterday that I need to spend time here in the office space, too.  I’ll need my own space, he says, and he’s right.  So I’ll start working on clearing up the boxes that are still stacked here.  I’ll figure out where my own craft supplies really are so that next week I can begin working on jewelry again.

In the meantime, I have discovered that when I go to Lake Charles, I have to crate my three cats and set them on the front porch there while I flea-bomb the house.  Yes, that house now has fleas.  Oh well, at least I can bring the laptop and iPad and some cold drinks and sit on the porch there in my rocker.  I don’t have any plants in pots on that porch, but I do have lovely roses that are in bloom.

Two porches to enjoy — and my pets.  Dogs here in Egan, cats in Lake Charles.  Friends in both places.  Dad at home, comfortable and feeling secure.  Kay to relieve me on weekends.

And time to enjoy, to write, to read, to create.

Who needs a parade?  I’ve got porches!

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Travels with Dad

Posted on April 4, 2012 by Cheryl L. Ware

This latest journey with Dad is certainly different from any we’ve taken before.  It’s about to take a new twist on Monday, when he returns home from Southwind.

He’s made all the progress he can, and it’s time to get him home to the renovated house.  Most of the cleanup work in the living room and kitchen is done.  I’m working on the office space now, wondering where I’ll put all the boxes of books — not my books, mind you, but his.  He loves to read, and now I’ve got to box up another bookcase in the small room off the garage. I’ll haul them to Lake Charles to my storage unit there, those that are not staying, anyway.  I’ve gotten rid of a lot of stuff, but every time I turn around it seems as though there’s even more that has appeared overnight.

His return on Monday — “homecoming,” as he’s referring to it — will be to a hospital bed and a wheelchair ramp and a new sit-in shower with a bench.  His dresser and chest of drawers are now in the living room, along with the two Bambi heads, three prize bass, and lots of photographs of family.  The photos are actually in two of the boxes for now.  I’ve got a scanner and a digital photo frame to load as many family photos as I can manage.  Less room, easier to manage.  His medical equipment and supplies must also fit in the living room.  For the first time in the nearly 46 years we’ve been in the house, he won’t be in the bedroom he and Mother shared.  It just wasn’t practical — too difficult to get around from there to anywhere else.  So the upheaval in his living space awaits him; he’s certainly been aware of it, having followed the changes around the house with great interest.  It will be a dramatic change, though, I know.  Most people don’t keep mounted deer heads in their bedroom, but since they have occupied wall space in the living room for years, they’ll fit in with Dad’s new bedroom.  The recliners are still there, as they have been for years.  So is the stereo unit.  The carpet is new (at last) and the wall-mounted flat-screen television is as well.  And the front door and new glass storm door also are new.  He’ll be able to lie in bed and look out the door at the road and the yard, and if he feels like it, we can sit on the front porch for a change.  I’ve recently put in lots of planted herbs, a hanging basket (with a few more to come) and a wonderful wind chime that my friend Carolyn gave me.

Our journey over the last year or so has been headed this way, but it’s certainly arrived more quickly than I thought it would.  For months, I stayed here and commuted, since all I really needed to do was drive him to dialysis and to doctors’ appointments.  He has weakened, though, and the fall in December really was the turning point.  Since then I have done full-time duty — cooking, shopping, cleaning (sort of), feeding him when necessary, and dressing him.  And shaving him — which has brought back lots of memories from childhood.  I remember “helping” Dad shave when I was 3 or so — what a treat that was.  Now I help him with shaving — I’ve cut his hair at times — and I give him pedicures to pamper his feet (he was in the Battle of the Bulge and survived, just experiencing frost-bite).

Finding that balance between daughter and caregiver hasn’t been easy at times, but that role-reversal certainly is a real one.  I keep the books, I have the power of attorney, and so on — but always consulting him.  Despite a few bouts of hallucinations and delusions, he’s absolutely sharp enough to engage in conversations, though perhaps less often than a few months ago.  He tires much more quickly.  Dignity is crucial for geriatric parents and my father deserves to live with dignity.  He and I spar at times verbally, but with love and laughter.  Still, there are times when the tasks overwhelm me, as does the sadness that deluges me as it did last Friday.  I drove to Baton Rouge and cried for the first 20 minutes or so — probably the first really good cry-fest I’ve had in a while.  Then it was over, and Canned Heat kept me up all the way to the hotel.

Dad always wanted to travel in retirement, and he and Mother managed to travel in a motorhome around various wildlife refuges in Louisiana and East Texas. But he never really got to see the Civil War battlegrounds as he’d dreamed of doing.  I hoped that once I retired, we’d be able to do that together, but that hasn’t worked out either.  I did manage to get him to my timeshare in Lake Tahoe two years ago, and he was like a curious kid, sitting at the window on the plane, fascinated by the landscapes visible below.  He was perfectly content to stay in our room, observing the snowplows at work below the building.  I’d hoped to get him back there, too, but that won’t happen either.

After my brother died in 1996 and his fiancee moved to Germany to work for a few years, Dad announced one fall that he’d like to visit Darcy and see Germany.  I blinked, got his passport application, and made reservations after talking to Darcy.  A couple of days after fall term ended, he and I headed for Frankfurt.  He joked that at least this time he wouldn’t have to sleep in snowy fields. We traveled by train from Frankfurt north to where Darcy was living, visited a Christmas fair in Bonn, and enjoyed visiting with Darcy.  While she worked, he and I would sit and look at the hills behind her house, where people walked every day.  I’d go out for snacks, bringing home yummy German goodies for tea.  His curiosity never ceased to astound me.  He could spend hours on the balcony, just looking at the landscape, taking in how people farmed and what methods they used.

One day the three of us took the train down to Weinheim, where Dad spent the last part of World War II and stayed for part of the Occupation.  With Darcy’s German and my photographs and maps, we managed to find the very street where Dad and his buds were billeted.  What a treat to watch him try to figure out where everything had been.  The town was never bombed, and the small town of about 4800 grew with refugees after the war was over.  At the time we visited, the population wasn’t quite 50,000.  On the trip back up to Darcy’s town, Dad narrated his experiences in the war as our travels took us parallel to the river.  I found myself thinking that this was a trip that Phil would have cherished, so I think I had a double responsibility — and a double reward — for our two weeks.  We slept in the attic room where one set of roommates was gone, one twin bed for Dad and a cot for me.  Houses so different from our own, narrow roads that didn’t look as though buses could navigate them — everything interested Dad.

As I was planning the trip, I figured that I’d never again have the opportunity to get Dad to Greece, so I simply told him that’s where we were spending the long Christmas weekend.  I booked a room in Plaka, near Syntagma, and managed to get Dad to Cape Sounion and up the Acropolis.  One of my most cherished photograph is of the two of us in front of the Parthenon.  We ate at Platanos Taverna in Plaka — and he loved the okra and vegetables, just as he does here.  Again, his curiosity kept him observing and asking questions.  We had coffee with my friends Jane and Nick and Nick’s mother, another wonderful memory.

And I took him to see the apartment I was considering buying.  Another adventure (peripetia) — two realtors who spoke very little English, me (with my little Greek) and Dad (who just sat there listening and wondering whether we’d arrive anywhere safely).  The apartment wasn’t very impressive — lots of dirt, nothing remodeled, one light fixture that I carried from room to room.  But it caught my eye — and my imagination.  By the time I was back in Greece that May,  the owner and I had agreed on a price and I bought an apartment.  In Greece.  In millions of drachmes.  I spent a few weeks cleaning, painting, finding a carpenter and an electrician, and buying furniture — and getting it delivered.  After I returned, Dad was fascinated by the photographs and the improvements (especially the electrical ones — Dad was an electrician, and he had been particularly attentive to the naked wires extruding from the breaker box).

He’s never been out of Texas and Louisiana since (except for the week at Lake Tahoe).  But we’ve traveled to the farm many times, to my sister’s home in North Louisiana, and to friends’ homes here in Egan.  Until a year ago, he drove to my house regularly. He felt it necessary to mow my yard for me, though he knew I could do it myself.  As he aged, he kept apologizing that he couldn’t do more.  Even in the last month, he’s made the same comments, apologizing that I have to do it all.  As I told him, I can do it because he taught me how to do these things.

Yesterday my friend Charles asked me if it had hit me yet that after Dad returned on Monday, my freedom would be gone.  I nodded and said yes, that I had realized that.  The days of lots of alone time will be gone, but they’ll be shared.  I hope we can travel in conversation and watching television shows.

He has always teased me that I came out of the womb ready to hit the road.  This time we’re hitting the road together — the next stage of the journey awaits us.

It’s Easter Week, and I think I’ll buy some lilies tomorrow when I’m in town.

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“On the Road Again”

Posted on April 3, 2012 by Cheryl L. Ware

Last Friday as I was driving to Baton Rouge for a few days, I turned on my iPod and just for grins clicked on “The Best of Canned Heat.”  The first song, appropriately:  “On the Road Again.”  Maybe it was something about the ride to Baton Rouge, but Canned Heat just brought back lots of memories.  When I was an undergrad at McNeese, Canned Heat played in what now is the area of the Rec Complex but was then known as “The Cow Palace,” the arena where all sorts of events happened.  I saw them then, and by the middle of song 1 I was just singing along, bopping as I drove (safely, of course).

The drive also brought back memories of my days at LSU, from January 1973-December 1974, when I was studying for my MA in English.  I drove that road many times — or at least part of that road.  Those were the days before the entire I-10 corridor from Lafayette to Baton Rouge was completed, so we’d drive part of the way, turn off at Grosse Tete (I think) and go to Krotz Springs (where Diesi’s Little Capitol originally was), then hit 190 to Baton Rouge.  Even in the 1980s to the late 90s, I drove that road every month for a meeting.  My little Mini might be a newbie on the drive, but I knew just where I was going.

Driving usually energizes me, and so by the time I hit Baton Rouge, I was pumped up.  A few days away — my own little spring break of sorts.  A friend was there for a conference, and on Sunday and Monday we traveled the River Road to see some plantation homes.  I’ve lived here most of my life, yet had never been on the River Road before.  It was long overdue.

Two plantations a day — four total — and that was a good pace.  We could enjoy ourselves without rushing.  On Sunday we saw San Francisco, a clear example of Steamboat Gothic style.  The tour there was okay — not great, but okay.  Then it was on to Houmas House, much different in style — Greek Revival.  Much larger than San Francisco, Houmas House had the best tour — our guide, dressed in the highest male fashion of the day, led us through room after room with humor and ease, not with a canned spiel. Houmas House also was the site of the indoor scenes for the movie “Hush, Hush, Sweet Charlotte,” and the beautiful circular staircase where the head rolls down is there for all to see (though without a head, needless to say).  Bette Davis slept in one of the bedrooms.  The external scenes were shot at another plantation.

We’d hoped to see Bocage Plantation, but that didn’t pan out.  The tour at Houmas House kept us there until nearly 4, and there wasn’t time for Bocage.  Another day.

Yesterday we set out for the other side of River Road, heading down I-10 to Gramercy and then taking the highway west across the river, turning right on Highway 18.  Our first stop was Laura Plantation, billed as “A Creole Plantation.”  Very different from any other home we saw, Laura had both business and living quarters in the home.  Once more our tour was entertaining and thorough.  This was a house I could imagine living in — not so huge that I’d feel out of place.

The final plantation we visited was Oak Alley.  Once we parked, we decided to eat at the restaurant first.  Yummy shrimp po-boy!  Then it was on to the tour,  The grounds at Oak Alley are impressive — especially the long alley of live oaks that lead from the River Road to the entrance of the house.  We entered from the front door, but walked from the back entrance around to it.  Oak Alley is where the external scenes of “Hush, Hush, Sweet Charlotte” were filmed — the owner refused to have the film crew indoors, which is why the inside scenes were done at Houmas House.

By the time we completed that tour and took a walk down the alley toward the road for the classic view of the home, it was beginning to sprinkle.  The rain meant we skipped a third house, Nottoway.  We did stop to see it from the road, though — and saw a bride having her photographs made there.

The opportunity for a few days away, visiting with a friend from Greece and California, gave me a breather I needed.  I won’t say I didn’t think about Dad and getting him home — that would simply be a lie.  I did manage, though, to relax.  I slept a lot.  I visited and talked a lot.  I drove a lot.

And those homes gave me views into lives long past, into ways of live long gone.  Photographs of the homes before the 1927 flood showed what land and trees were lost when the Corps of Engineers built the current levee.  Only in imagination could I see the Mississippi as previous owners did — with a small levee and private boat docks for each plantation.  And lots of lawns leading to the river.

Now the protective levee blocks actual views of the Mississippi, and the River Road itself divides what once were expanses of plantation lawns going right to the river.

Inside the homes, furnishings original to the houses as well as simply to the period allowed us to step into other worlds, other lives.

Today I rode I-10 back to Crowley, to Egan, and then to Lake Charles and back again to Crowley and Egan.  I traveled from the world of plantations that none of my ancestors ever knew first-hand back to my own world(s).

As simple as a road leading toward something and away from it — that is what takes me from one of my worlds to another.  My Lake Charles world seems to dim more every week — not out of my lack of interest, but out of lack of time.  Today I was there for a total of 3 hours — long enough to grab lunch, see my doctor for allergy problems, pick up my new medicines, pick up two pairs of shoes, and hit the road.

Two visits today with Dad — once on my way in from Baton Rouge.  We visited, and I left after he’d eaten lunch.  I drove to LC, did my errands, and went back to Southwind, with a stop at Walmart first.

Dad is scheduled to come home the day after Easter.  As of this morning, no phone calls had been made to the home health care agency we use, nor had one been made to Dad’s doctor.  I’ll have to talk again to Southwind tomorrow — this is cutting the whole thing a bit too close for me.  Dad’s doctor isn’t in on Thursdays.  Friday is Good Friday and lots of businesses will be closed.  I have no idea when his hospital bed and other equipment will be delivered, nor do I know what to do about his medicines. Perhaps the early phone call will clarify things — and I will ask to be called back with definite orders and arrangements.   I found out he was being released when Dad said something last week — one of his PTs told him.  Only after I called and talked to a nurse — who also didn’t know — did she get someone to call me.  And that person reassured me that phone calls would be made on Monday (yesterday).  Clearly, they weren’t.  Tomorrow I’ll find out if she bothered to call yesterday, and if not, I’m prepared to get tough.  Somehow I am not really impressed at this particular facet of care there.

So I’m doing what I can — working my way through frustration once more.  I’ve concentrated tonight on the office area.  I’ll work on Dad’s clothes before I go to bed — clear out his dresser drawers and chest of drawers once more and arrange clothes in one and supplies in the other.  There’s a metal bookcase as well for books and probably supplies.

I bought three sets of twin sheets for his bed, along with a new pillow.  I’ve got a blanket and an electric blanket already.

The time nears — and it truly feels as though I’m on the road again, the road to a new level of caregiving.

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Small Steps

Posted on March 28, 2012 by Cheryl L. Ware

Tuesday sunshine streams through the front door glass and through the windows.  As I sit here in the new office space, the sunshine through the window lets me see that the yard needs mowing again, so that’s another chore to add to the never-ending list.

Yesterday was a good day, all in all.  I talked to Dad’s primary-care physician finally — and we’re waiting to see a few things before decisions about hospice are appropriate, she advises.  First, does his mental state improve once he’s off the Duragesic patch?  Second, can we get his pain under control?  And third, what does his nephrologist say?

By last night, with the patch off for 24 hours, he was clear and himself.  We had a good conversation, and he recognized my cousin Carolyn immediately, which was great.  They had a chance to talk, and that was good for both of them.  He was tired, but clear-headed.  He hadn’t had any pain meds since 11 a.m, but it was also not a dialysis day; this meant that he’d had PT in the morning, taken the pain pill, and been in bed all day.  We’ll see what the pain is like today, when he has PT, then dialysis.

Today will give us a better sense of how the pain is.  Dad’s doctor is waiting to have her call returned from the nephrologist, so we’ll see what happens then.  She doesn’t want any decisions made based on his mental state on Monday, when he started pulling needles and tubes out at dialysis.She and I talked for a while, agreeing that Dad’s pain level was our key here, and his quality of life our guide, coupled with information from his nephrologist.  So we’re on hold, sort of, waiting to see what happens.

But she knows I’m under no illusions about the future, too.  I’ve talked to cousins and aunts now, and they’re aware of the changes, the talks with doctors, and the decisions.  I texted everyone on Monday, after talking with Kay and making decisions about actions.  By yesterday, I’d talked to everyone.  Decisions will be made, but not necessarily in the next few days, which is a great relief to me, at least temporarily.  Those decisions will get here soon enough.  I have space to breathe, to work, and to think now.  And — fingers crossed — to enjoy Dad, clear-headed and conversational.

Yesterday I made progress here at home, with my friend Patty helping me.  I worked in the kitchen, clearing more cabinets, wiping them out and cleaning them, and sorting through food, spices, dishes, and everything else that was crammed together indiscriminately.  Now the food items are all together in the new little pie safe I bought in Lake Charles at an antique store/flea market.  Spices are in one covered container.  Only the cooking oils and salt and pepper and chili powder are in the cabinet near the stove.  In the narrow cabinet space between the refrigerator and the stove, where all sorts of things were shoved and way out of date, more cleaning was necessary — lots of mouse evidence from gnawed bags, loose beans and cornmeal, and so on.  Now that’s where the boxes of storage bags, plastic wrap, aluminum foil and garbage bags now get to stay.  They’re organized, easy to get to, and centralized; they’re no longer scattered in three places.

We’d stop and talk.  It’s the first time she has ever been here to Egan, so she was interested in everything.  She got to experience my day, with people simply walking in the house and chatting.  She met my good friends here and got to talk to them.  She and my cousin Carolyn talked.  After she left, I turned to Carolyn and said “Bessie Cobb.”  Carolyn smiled and said “I’d already thought that!”  Bessie was one of our grandmother’s oldest and dearest friends, a short little round woman from New Jersey who was just as straight-talking and direct as they come.  Bessie was just another one of our family, and Patty has always reminded me of Bessie.  Now I have confirmation of my impression.  Shared memories and experiences with Carolyn anchor so much for me.

We’d talk and visit.  Then it was back to work.

Typically, I was hoping for more, but then I always do.  Patty got the clothes washed, dried, and folded and worked on Kay’s room while I worked in the kitchen.  She’ll come back on Friday, and by then I hope to have other progress evident.  Now I’m washing Dad’s clothes.  I’ll do a bit of work here in the office area while the clothes are washing and then drying.  Maybe, only maybe will I get back to the kitchen area.

Small steps and progress — I can see this, though there are moments when I look at all that is left and get discouraged at that.  I forget just how much has been done in a short four weeks.  That’s me — I typically expect more to get done than is truly possible in a given amount of time.  I’m learning, though, to keep focused on the progress.

So . . . today:  clothes for Dad, more organizing of boxes in here, more garbage bags of “toss” and more boxes of “donate” — and then maybe the yard.  If the riding mower is working properly.  We’re supposed to get more rain on Saturday, and I want to get the yard done before another deluge.  The ground is soft, but it isn’t too boggy for mowing.  Not yet.  The clover is attractive, but we don’t live in a wild meadow, after all.

Sometimes I feel as though I’m one of those kid’s toys, the Weebles.  I get knocked around, knocked down, but keep popping back up after a little while, back in place.  Now, though, I think I’m a Weeble on a roller coaster.  The roller coaster ride differs every day now, with one day bringing me to the very depths of things when Dad is in great pain and moaning that no one should have to live like that, and the next taking me to the top for a little while — for a moment of respite when he’s pain-free and clear and talkative — before the track plunges down again.  I know the roller coaster won’t last forever and that at some point it will even out and glide home and stop.  Until then, I’ll breathe, and like the Weeble I’ll roll around, bounce around, and stabilize.  Repeat.  Repeat. Repeat.

Visits like the one yesterday from my cousin mean so much. She’s always been more like my older sister; we’ve always been very close.  I talk about needing a “Carolyn fix” at times, and those are always good for me.  We talk about all sorts of things.  Our mothers were sisters; they’re both dead now.  Our grandmother is dead.  Our aunts are gone too.  Her sister Terry has been gone for few years.  My sister is 7 years younger.  Carolyn and I talk about being the family memory now — and her children and Terry’s look to us.  It’s a sobering thought when you realize that you are now one of the family elders.  In our rather matriarchal family that’s a big responsibility.  A joy at times, but a responsibility.  As much as we talked to our mothers and our grandmother, there are still questions we’d love to ask, mysteries we’d love to get solved.

I’m energized today.  Tired and allergy-eyed, but energized and mobilized.

Progress yesterday.  Progress today.  Small steps.  Big gains.

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Off the Grid

Posted on March 26, 2012 by Cheryl L. Ware

This last week was a really difficult one. Coming to grips with the hard realities of Dad’s condition, of  trying to find something to relieve his pain, of conversations with social workers and doctors that I really don’t want to have –as mentally prepared as I am, I have been knocked out by the emotional turmoil all of this has led to. Why, I’m not exactly sure, but that’s what happened.

I couldn’t manage to do more than work around the house a bit, trying to catch up with laundry, and visiting Dad and having some of those conversations. The one with my Dad’s sister was a killer–she initiated the conversation, and I honored her straightforward questions.  By the end of that conversation we were both choked up and holding back tears.

I read a lot. I watched television. I cuddled with my dogs that I’d finally brought back from Lake Charles.

But no matter what, I couldn’t write.  I just managed to get along from day to day. By Friday, when I got to Lake Charles, it was a weekend for simply closing the door and being alone. A few errands, getting my medicines refilled, and getting a long massage on Saturday–that’s what I could manage.  It was Sunday before I found energy to get out and visit friends.  Many times, my Lake Charles days are more social, but lately they are hibernation time for me to recharge.

This time, it really was more like the end of a hibernation. By the time I got out on Sunday, I felt lighter and realized that the world wasn’t weighing me down as much.  The sun was brighter.  I enjoyed long visits with friends yesterday. Some corner was turned, I think; something simply changed.

Today, I am in Orange, getting Dad’s truck inspected. How he has managed to have it registered in Texas is beyond me, but I now sit in a waiting room while it gets its inspection a month early. And I turned the radio on as I drove over, finding music I loved–Stevie Nicks, Tom Petty. I sang along as I drove, even chair dancing a bit.

And once I opened the blog, I found the words that have evaded me for a week. Sunshine, light, and flow have returned to me.

One of my worries has been my own sense of separation from friends as I have been more and more involved in Egan over the last 10 months.  One dear friend told me yesterday that she had only recently told her father I had moved–and that only then did she realize the truth of that. I’d realized it and vocalized it months ago.  In the intervening months, I’ve felt more and more disconnected from that “other life,” and recently even wondered why I bothered to go to Lake Charles, except to pick up mail and see the pets.  But now I’ve got the dogs at least, if not the cats.

The disconnect will be temporary, I’m sure.  My friends remain my friends.  Picking up the pieces will happen.  Certainly my life will change, but it’s not that I’ve lost myself, though that is really what I fear at times.  No, I think I’m really discovering myself on this journey.

I now start to think about what comes next–and what comes after.  Kay and I talk about that. We don’t have any illusions about what’s coming.

From time to time I am sure I will “go to ground,” as the British say–hibernating for rest and rehabilitation. That will recharge me as the weekends do.

My cousin Mike laughingly asked me yesterdayif I’d “gone off the grid”– and that was the perfect term for me this past week. Off the grid.

But I am back on now, and ready to hit the road, just as soon as the truck inspection is done.

From Louisiana to Texas and back in one day. Lake Charles to Egan. My bifurcated life continues, and at least I can drive from part to part, even if those discrete parts don’t seem to overlap much anymore.

Today when I get back, there are more questions to ask, more changes to follow up on regarding the Duragesic pain patches that didn’t work for Dad.  I hope we find something that a) doesn’t make him itch and b) doesn’t leave him confused and c) relieves the pain.

A friend lost his brother to cancer last week, and we’ve talked often in the days before and since.  That also saddened me, for him and because it brought back my loss of my brother in 1996.  Phil was 39 when he died. Yesterday was his birthday–he would have been 56.  I’m sure that’s been one of the facets of my week of darkness.

Loss has come close to overwhelming me this week, but it didn’t.

I went off the grid, finding and creating my own energy, the energy that cannot come from outside sources. Not at all–only from inside does the energy generate.  The love from family and friends gives the support I need to explore the hard realities and to do what must be done, but only when I can have some deep alone time, off the grid, does the energy come.

I am back on the grid, waiting now for the truck to be returned to me with the appropriate sticker. Someone has to do the ordinary chores, the daily or monthly or yearly ones.

I am ready for the road.

Later on Monday, about 7:22 p.m.:

Back in Egan, after the road trip.  One of the last songs I sang along with as I exited Interstate 10 heading to Southwind was “Here Comes the Sun.”  The Beatles sang to me at just the right moment, reminding me of the sunshine and the light I’ve found again.  I needed that boost, too.

I visited Dad for a few hours, but it was difficult.  He’s apparently allergic to the Duragesic patch, and though we’ve taken the patch off, it will take a while for the narcotic to work out of his system.  He’s on a new painkiller, by mouth.  He’s more confused, not really sure of where he is, though he knows me.  He’s miserable.  The word he used with Kay this weekend is “torture”:  that’s what the pain is like, he says.

No answers today from doctors, though the hard question has been posed to both the nephrologist and Dad’s primary care physician:  is it time to stop dialysis and to take him home?

Maybe tomorrow I’ll know more.  What I can do now and tomorrow is try to get the house in better shape.  Tomorrow my friend Pattie is coming to help.  My cousin Carolyn is coming to spend the night tomorrow and see Dad.  I suspect others will come soon too.  So I’ll wash more clothes, move some boxes, and cook something to eat.  I’ll talk to cousins and aunts more today and tomorrow, keeping them all in the loop that is our family connection.  It’s tight and real and wonderful.  Friends and family give me everything they can.  It is so comforting to know they’re there.

Our loss looms closer than before.  But more important is Dad’s comfort, Dad’s ease, and Dad’s dignity.  He’s earned all of those things.

Back on the grid.  Back with power.  Back with resolve. Back with love.

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