Lost and Found and The Saving Grace of Humor

Posted on February 25, 2012 by Cheryl L. Ware

Dad has been in Southwind Nursing Home for just over two weeks now for rehabilitation — and he’s getting stronger every day, which is wonderful to see.  He’s also getting cranky, another measure by which I gauge his recovery.  For weeks he’d been too weak even to be cranky, just lying around helpless and in pain, sleeping a lot.  Cranky is good:  he’s thinking, he’s judging, and he’s got opinions again.  I like that.

His sense of humor has never left, another bright spot.  It’s a sly sense of humor, usually presaged by a cut of those sharply blue eyes and a slight twinkling in them that warns us something is coming.  Combined with his crankiness, the humor now emerges as he makes cracks to me about whether I’m leaving any money, whether he’ll recognize his own house — and just when someone might think he’s serious, he grins.

Our relationship has always been a close one.  I was and am that very Southern thing, a Daddy’s girl.  But our relationship also been one marked by humor.  My choices for his birthday cards and Father’s Day cards always are funny ones, not the sentimental ones that mark my sister’s (or indeed our late brother’s) sensibility.  And even through these months as his health has declined, it’s been important for me to keep that humor going, trying to balance the role-shifting we’re experiencing.  The humor marks our large comfort zone, our closeness, and our normality.

Even as I was driving him to Crowley to admit him to Southwind, as weak and in pain as he was, Dad managed to surprise me with humor.  Out of nowhere, he announced, “They’re going to auction us off.”  Totally lost, I asked (so eloquently), “Huh?” And he answered, “At that place.  Us old people. They’re going to auction us off.”  As I glanced over to look at him (briefly, because I was, after all, driving), I knew he wasn’t serious — he cut those eyes at me.  So I cracked back, “And what do you think they’re going to get?” He quickly responded “Not much,” and we both laughed.

Even in the pain, he was able to laugh.  Such reassurance and comfort for me with that joke and that laughter, at that moment.  After all, I was driving my father to put him in a nursing home.  All the guilt about abandoning him and the fears that he would believe that we were abandoning him lightened — we still had that known territory of humor.

Daily when I visit him, I hear him and observe his interactions with others, as well as with me and Kay and our friends who visit.  Some days he’s exhausted from dialysis and PT, in pain from the arthritis that pains him now nearly constantly.  If he’s too tired to joke, I take that as a cue.  I sit quietly and talk when he wants, or sit and read while he naps.  Right now, while the house is undergoing renovations, I don’t manage to spend as much time with him as I’d like.  I’m too busy at the house.  But I always make it there for dinnertime — “supper” as we downhome Southerners call it.  Right now they still bring him a tray to his room.  He’s not quite up to going to the dining room — that’s a goal we’re working toward. We talk about the food, and we talk about his teeth.  Why,  you wonder, might we talk about his teeth?

Another complicating factor in his recovery (and there would be one, wouldn’t there?) is that Dad managed to lose his bottom dentures at some point. We only realized in when he was being prepped for the kyphoplasty, when I was putting his dentures in the cup provided.  I put in the top plate, asked for the bottom dentures, and realized he didn’t have them in. At first, I figured that he’d taken them out. They are relatively new, and they haven’t really fit comfortably.  Consequently, Dad developed the habit of taking them out when they bothered him.  He might put them in a shirt pocket.  Or leave them in the bed.  Or put them on his nightstand.  Sometimes, I found them on the floor.

So at first, I didn’t worry.  When we got home from that two-day stay in the hospital, I looked for them.  They were nowhere to be found. Our friend Billie helped me look; she couldn’t find them either.  So besides having to get him ready for the nursing home, I had to take him to our dentist to get fitted for a new bottom plate.  He had two visits in a few days, the first one on the very day he entered Southwind.

All this is to explain one of the problems of his two weeks at Southwind so far.  He can’t eat much.  He eats better some days, but always asks me when his teeth are coming.  Yesterday I could tell him that they’d come in and that I had an appointment for next Tuesday morning.  Soon, he’d have a full set of dentures.  He looks forward to that.  It’s not fun, he tells me, to gum your food to death.  (Humor again, even in adversity, marks both of us.)  When the nurses weighed him one day last week while I was there, he weighed 150 pounds.  I knew he’d lost weight, but that surprised me — and concerned me.  I mean, food is important in Southern (and Cajun) life; we like our food.  It’s part of our lives, our social interactions.  We talk about food a lot.  We trade recipes.  So when Dad doesn’t enjoy food, it’s a problem.  And he is a Texan, too — a real carnivore who likes meat.  It’s hard enough to eat steak or a pork chop or even chicken when your dentures don’t fit right; even chopping food finely doesn’t always help.  But it’s nearly impossible to eat meat when you only have your top dentures.  Defaulting to mashed potatoes, soup, and soft food really reduces your choices.  It also reduces (if not nearly destroys) one of your pleasures in life.

But when I think about it, he hadn’t been eating much other than soft food for a while.  When we talked about it, neither of us could really remember just when he’d last had his bottom teeth.  And maybe it also explained something else I’d noticed for a couple of weeks — his speech had changed a bit, thickened at times.  I attributed it to aging, perhaps even to a small stroke.

It’s too easy, and perhaps too convenient, to attribute changes in aging parents to strokes, small or large.  Perhaps in some cases, the changes result from medications.

In our case, it had a very different reason:  lost dentures.

Now I tell him I’m going to glue the damned new dentures into his mouth if they don’t fit right.  He laughs.  We have that relief once more, the comfort of humor.  And plan for new dietary choices after next Tuesday when he gets the new bottom dentures at last.

Oh, and one of the discoveries as the contractor moved furniture two days ago out of Dad’s room?  The lost dentures — from underneath his chest of drawers.  Just how they got there, we can’t figure out.  The dentures would have to first get behind the chest of drawers and then get pushed under from there.

I tell him our little friends the mice that have decided to co-habit with us this winter, coming in from the field near our house, must have moved them.

Maybe I’ll take them with me today when I go to see him. Tied with a red ribbon, so he can’t lose these.

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Tag Team Sisters

Posted on February 24, 2012 by Cheryl L. Ware

Yes, I live in Egan now.  Again.  After not living here since , oh, 1969 (when I went away to college), and only visiting, it’s an adjustment in many ways.  Living with someone after all this time has probably been the most challenging adjustment.  But not the only one.  So many changes occurred over the years.  Until 1993, we were a family of five: Dad, Mother, me, Phil and Kay. In the 1980s, though. . . that’s when major changes happened.

Mother’s multiple health issues really emerged in the 1980s, leading to a gradual decline and her death in July 1993.  Phil was diagnosed with colon cancer at the age of 26 in 1983, and fought through that, three subsequent rounds of melanoma, and finally died in January 1996.  For both of them, Dad was the primary caregiver, and Kay and I pitched in and helped when possible and as he would let us.

But after Phil died, and Dad was living alone, there was yet one change, another shift to be negotiated, one in family dynamics.  Dozens of books and essays can be found on birth order of siblings and sibling relationships.  In our family, Mother and Dad had lost a son the year before I was born, so in birth order I was both number two and number one.  Phil was born in 1956 and Kay in 1958.  Typically as we were growing up,  I asserted my “#1” status; I even remember writing that on letters to my parents that I wrote from college.  My brother and sister were enough younger that I really got to know them as teenagers and then adults only years after I’d gone away to college and set out on my own.  By nature I am, I admit, bossy and assertive and too often impatient.  And rather hot-tempered, though I’ve had to learn to control that temper over time. That’s within the family, of course.  In the work-world, and with my friends, my demeanor is strikingly different.  Perhaps being with family means you don’t edit yourself, that you let yourself go — and that’s not always a good or desirable thing.

Phil, as the only son, always seemed to escape any birth-order problems of being the middle child.  Kay, though, was always the baby, no matter how you looked at the equation.

Without Phil sandwiched between us, Kay and I were left as a duo, separated by seven years and very different personalities.  I’m snarky and too often rude to her, in the way sisters can be.  We weren’t close growing up; she was always the little sister.  As adults, though, we have a different relationship, and I’m the one who has had to re-learn how to be a sister, not a little mother or a bossy older sister.  It’s a work in progress, and I backslide, but I work on it.  I can be rude to Kay, and often am — I yell at her as I can yell at no one else.  I know I hurt her at times.  But I’m learning to apologize.

A great deal of this learning has forced itself upon me in the last couple of years, as Dad’s health has declined and as he has needed more and more help.  I may have been the one 45 miles away, but I haven’t been the only one here helping out.  She has been there too.  That I was closer and had the kind of schedule that goes with teaching at university meant that I was the one who could commute, or be at Dad’s in an hour.  She works at a university but doesn’t have the freedom of my former teaching schedule, and she lives about 135 miles away in North Louisiana.  Kay was here, though, all the way, physically when and as she could manage, but also in support and by phone and email and text.

Just before Dad had heart surgery in 2004, he signed power of attorney to me and made a living will; she wasn’t left out — it was just that as the oldest, I got to do the heavy stuff.  That power of attorney is still in force, luckily, and it allows me to assume bill-paying and to make decisions.  But Kay and I work as a team now — a team that tangles and disagrees, as teams do, but a team that comes to agreement and that gets necessary jobs done.

Especially in the last two months, Kay has really made what I do possible.  Being a full-time caregiver for an aging parent who isn’t able to even dress himself, or who needs someone to bring him something for pain, or needs assistance to get to the bathroom means that you sleep with a baby monitor and almost never sleep through the night without interruptions.  Some nights, in fact, I never slept more than an hour at a time.  Add to the mixture getting Dad to dialysis three times a week — for the 6 a.m. shift. (By the way, I am NOT an early morning person by nature, but that 4 a.m. alarm clock rang and I was up and working.) And of course there were also the days I had to get Dad to a doctor’s appointment. My own life in Lake Charles and my friends there, my house and pets?  I became a drop-in visitor in that life.

Kay and I have developed tag-team caregiving.  Maybe it’s more accurate to say that we are developing it, because it’s a work in progress, and one that changes as necessary.   She takes the weekend shift, giving me time to head to Lake Charles and my own house.  I get to visit friends, have coffee, get the mail.  I usually head over on Friday so that I have time for business if necessary.

Even during the week, though, we are in touch daily — usually texting, since it’s not a good thing for her to use the phone for personal reasons unless absolutely necessary during office hours.  Texting is a lovely technology.  I think I text on my phone more than I talk on it.

I make a lot of decisions on my own, but mainly little ones.  Never the big ones.  She and I may not always agree — and I often fall into the exasperated tone of the older sister putting up with a younger baby sister, but I am trying to get over that.  She is an adult, and I am grateful that I don’t have to make these decisions alone, and that she is willing to take part.  I’ve heard so many sad stories about families where only one child does all of the work, and others just abandon all responsibility.  That’s not the case here.  It’s just that I’m always battling that older-sister mentality to recognize my baby sister as an adult who is my partner in caring for our father.  And to accept that we handle things differently.  Very differently.

Years ago, Kay and I watched a movie with Bette Davis and Lillian Gish, “The Whales of August” (1987).  Two elderly widowed sisters live together; one is blind and really kind of bitchy and the other is gentler and a little ditzy.  We immediately laughed and saw ourselves:  I would be the Bette Davis sister — blind (I had horrible vision until cataracts and lens replacement) and bitchy.  She would be the gentler kind of ditzy Lillian Gish sister.  Well, I’m not blind, and we’re not really living together, but we are having to co-parent our father and share the same house.  And share the responsibilities of decisions.  “The Whales of August” pops up from time to time in my head, reminding me that Kay and I can and have laughed together.  Reminding me to enjoy our relationship and differences, not fight them all the time.

Oh, we argue lately about where to move what piece of furniture, and I get angry and snarky and then apologize.  I act as though I expect her to be here all the time, which she can’t be.  I act as though I expect her to work in the same way I do.  She doesn’t.  Daily I am learning to apologize and to be grateful daily for the sister I have.  She has gifts I don’t:  she is gentler and softer.  I have edges.  She has the financial/business skills honed by years of financial statements she produced at various car dealerships and now at a university.  I handle my finances with ease, yet find it challenging (if honest, near-impossible) to balance my checkbook.  And now I have to handle Dad’s finances too — but not alone.  I may sign off on things, but she has the knowledge and skills that our mother did and I have never managed, or wanted to learn.

A few days ago I found myself yelling over the phone about something, something I can’t even remember now.  I pulled back almost immediately and told her I was just panicking and that I was working under a (self-imposed) 20-day schedule.  At a minimum, Dad is in Southwind Nursing Home for rehab for 20 days; then Medicare requires that staff re-evaluate whether he’s making progress.  He is allowed to stay as long as 100 days as long as he makes progress and cooperates with physical therapy, but Medicare requires constant evaluation.  Consequently, we don’t really know how long Dad is going to be there.

Thus my sense of having to get the house ready in 20 days.  Yesterday was Day 14.  Amazing progress so far — the wheelchair ramp and porch were done in two days. I fully expect the bathrooms to be done by the end of next week and the new vinyl flooring down.  I will have thrown out the detritus of years and moved furniture back in place (I hope).  We’ve decided to put Dad’s bedroom in the living room, and use his bedroom as a sitting room/office with a daybed.  What furniture and where the furniture goes in his new bedroom — that’s been what we disagree about.  Take-charge do-it-myself Cheryl:  I don’t want to run around three rooms getting everything I need; I want it there.  Equal-partner Kay:  leave certain pieces that I was determined to move.  Final decision: I compromised; so did she.  I will put Dad’s chest of drawers in the living room.  I will leave the library table with photos.  I will leave the handmade chest from Sweden.  I will move my computer and bookcase.

If Day 21 comes and Southwind and Medicare decide to send Dad home, then the house will be ready.  If on the other hand Dad stays on in Southwind for more rehab (which Kay reminds me is likely), then the house will be done and we can relax.  In the meantime, I am more hyper and frantic at times as I look at the chores/tasks yet to do — and often feel absolutely hopeless.  But that feeling generally passes, and I simply pick out one task to focus on and manage — rather than fall into the trap of paralysis.

No one “loses” in this — that’s not the point of renovating and reorganizing.  The point is that Dad’s needs are met, in a way that is functional for us to be caregivers but that also leaves him a sense of familiarity, as well as a sense of dignity and independence. He’s already remarked that he wants to recognize the house he comes home to! Of course, once he is home, we have to re-assess what works and what needs changing.  My friend Charles, who lives across the street and cares for his mother, has done this longer than we have and he is our touchstone here:  he reminds us to be flexible and to expect to change things as needed.

And that’s why I am schlepping bags of trash to the dumpster and organizing the construction work, living in a house that looks like an episode of “Hoarders” is about to be filmed.   When Kay comes in on Saturday, she will have other tasks that I’ve neglected.  Having to juggle two bank accounts in the midst of all the medical issues and doctor’s visits and hospital stays and caregiving . . .  somehow not all bills got paid on time, and I recorded checks but haven’t subtracted anything.  I must learn to record all the monthly bills, not just the checks.  I manage it with my own checking account, though not in the business fashion that Mother did and Kay does.  I didn’t get that bookkeeping gene, and Kay has it super-strength. That’s why she will come in on Saturday and take the checkbook that I’ve faithfully recorded all checks in, use the bank statements, and reconcile Dad’s account.

My journey here has humbled me often, and learning to share has not been easy.  It is, however, richly rewarding. My baby sister is an adult.  I’m learning to share and to apologize.  I’m learning I don’t have to do it all alone, and that’s comforting.  I have Kay and my dear friends and neighbors here in Egan who make daily life possible when I have to juggle things and be two places and once, and I have friends and relatives elsewhere who are incredibly generous with their hearts and willingly put up with me.

Tag-team sisters may bicker and fight, but love makes it all possible.

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Brave New World!

Posted on February 23, 2012 by Cheryl L. Ware

I retired from university teaching in May 2011.  For years, my plans geared me to being able to retire at 60 and then be free to travel any time I wanted to travel, not just at semester breaks.  I could teach part-time, take students abroad if possible, even teach on-line.  And of course, there would be ample time now for writing all those half-started essays and books.

Nope.  Not quite.

Some background: My mother died in 1993, and since then Dad has lived on his own.  He managed his own house in Egan, Louisiana, and worked with his sister to maintain the family farm in East Texas.  I always joked that my dad actually clocked more road time than I did.  Well into his 80s, Dad still maintained the schedule of a trip to the farm every two weeks.  Even after going on dialysis and having cardiac bypass surgery in 2004, he kept going.  He drove himself to dialysis.  He shopped and kept the house up and drove to the farm and worked there –just a little slower as time passed.  For the last few years, my sister and I had talked about things we noticed:  he was a little more unsteady on his feet, for example.  And the house wasn’t kept as clean as it had been.  But Dad just kept going.

Then infections with the dialysis graft in his arm began to occur — the first one serious enough that we worried whether we’d lose him or he’d lose his arm. I taught online for a week and stayed in the hospital with him.  This became the pattern that marked my life for the last years of my career.  Dad went into hospital for a few days; I slept on the couch or chair or whatever and taught online and commuted.

My sister helped as she could — but she lives almost three hours away and I live only 45 miles away from Dad.

The last two semesters that I taught, though, things changed.  He was in the hospital more frequently, and came out weaker than before.  I stayed with him more and more.  I commuted a lot.  More than I wanted.  I love driving, but learned that I hate daily commuting. I kept some clothes and necessities at Dad’s, but still considered that I was “visiting” him.  In February or March last year (over Mardi Gras break, I know), Dad drove himself to the hospital emergency room in Crowley with pain and amazing constipation; the hospital admitted him and failed to notify either my sister or me, though I am listed to be contacted.  In fact, he was there several days before we knew where he was, and though he was still confused and disoriented, were ready to release him when my sister and I managed to get there. The confusion was new, and disturbing, but sadly not uncommon with geriatric patients. He recovered, but was weaker than before.

Then in May, just before I retired, he developed pneumonia and ended up in the hospital.  I uploaded my final grades from his room. He was released from the hospital and hasn’t driven since. He came home on oxygen.  I began retirement with a new job.  Daddy’s Little Helper.

Even then, though, I managed to spend a few days a week in Lake Charles, at my own home, with my pets and my life.  Neighbors helped me out.  Dad was using a walker (most of the time, anyway).  He cooked meals (though I suspect he ate a lot of sandwiches) and washed clothes.  He wasn’t driving, and he didn’t like it.  I even managed to spend six weeks in Greece in the summer.  In September, I spent a week in London with friends.

However, I could see that Dad was weakening.  He tripped more.  He fell, but luckily didn’t break anything.  In late October, we traveled to the farm for a family work weekend.

That was when some little voice told me to travel while I could:  and I did.  The day after Thanksgiving, I left for three weeks — most of it in Athens, and then four days in London on the return.

The little voice was right: four days before I returned, Dad tripped on his oxygen tubing.  From then through the end of December, his pain increased daily and so did his ability to ambulate.  By the end of December, he moaned in pain and needed help dressing because he could barely lift his legs.  After three weeks and three tests, the diagnosis came in:  he had an L1 compression fracture.   By the time he had kyphoplasty to stabilize the compression fracture, he needed me to dress him and feed him and bathe him.  The kyphoplasty went well on a Tuesday; we came home on Wednesday.  By Monday, it was clear that something was going on — Dad was increasingly confused.  On Monday I picked him up from dialysis, got him to his doctor, and she put him in the hospital.  By that night, he was delusional.  Even when he was briefly asleep, he was active — climbing poles and pulling wire, from years of work as an electrician. When awake, he talked incessantly.  To his late brother and cousins.  To me, warning me about not running over the dogs in the road.  He pointed to the ceiling; he saw turkeys in fields.  He tried to climb out of the hospital bed more times than I could keep track of. By Wednesday the doctor ordered something to relieve the anxiety, and it worked.  He slept on Wednesday night and so did I. Finally.  He came home on Friday, the lingering confusion cleared over the next few days, and on the following Thursday I admitted him to a nursing home for rehabilitation.

While he’s there, I’m having the house made wheelchair accessible.  As I type this blog, contractors are ripping out bathtubs and old linoleum.

I am no longer under the illusion that I live in Lake Charles, not really.  I live here in Egan, with Dad, and I visit my old home in Lake Charles.  For now.

And so this blog:  it’s a brave new world, and I’m discovering myself daily, re-inventing myself, and cherishing the gift of time with Dad.

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