Thoughts on Caregiving, Then and Now

One of the most common results of being a caregiver is exhaustion — and I don’t think I was unusual in my depth of exhaustion.  Both while my dad was alive and after he died, I found it nearly impossible to get beyond the exhaustion.  Even now, at times, I find myself succumbing to some form of it. 


For about a year and half, I taught and took care of Dad a lot; I spent a lot of time driving. Though I didn’t commute every day for the entire time, I felt as though I were never sleeping enough.  Certainly the last semester I taught, when I did basically live with Dad and drive to Lake Charles, I never got enough sleep.


But the exhaustion was more than simple sleep deprivation.  I’d have to grade essays when I had no desire to, no energy for.  I’d prepare for classes.  Teaching itself was actually energy-producing; I always found myself on a kind of “high” after classes.  The energy of the classroom itself energized me.  In fact, I usually found it difficult to sleep after a night class.


That energy, though, sustained me temporarily.  When it dissipated, I felt even more tired. There was a kind of rebound effect.


Because Dad was pretty mobile while I was still teaching, I was fortunate that he could self-care more than he was capable of doing later.  That meant I could sleep a bit more.  I did, though, begin to do more of his housework.  I went to all of his appointments with doctors.  I could rely on friends to help get him to dialysis. 


It was as though I were living two different but overlapping lives – as I believe I really was.  Perhaps the energy level and the exhaustion level depleted at twice the rate as a result.  It was fitting the two together that took care and attention.  This also meant that any other life that was mine took third place at best. 


But that last semester I taught, I was driving him to dialysis on some days, or picking him up.  That alone shaped my schedule three days a week.  Weekends weren’t really enough time to rest, either, since they were filled with errands for both of us.  I’d try to keep my own house in Lake Charles going.


At Dad’s, I experienced more than one kind of exhaustion.  One that I hadn’t anticipated was a side effect of Dad’s television-watching habits.  First of all, as with a lot of older people, Dad had hearing issues — but he refused to get hearing aids.  As a result, he’d turn the television’s volume up pretty high.  I couldn’t escape it. And I tried, believe me — I tried. 


Another problem:  I really couldn’t stand some of the shows Dad loved.  Just why he watched “Polka Party,” I couldn’t figure out– but he did.  Every time it was on, he watched it.  I came to hate amateur polka music.  I’d try to drown it out by putting my earphones in and blasting my own iPod, but it was never quite possible to eliminate that annoying sound.


Dad loved sports, too — and while I enjoy some sports, some of the time, he loved any sport, any time.  So if there was a game on, he was watching it.  Loudly. Sometimes, I’d watch with him, but I spent a lot of time trying to ignore the games.


Dad’s love of news was in fact a spur to my own.  However, by this time he narrowed what he watched, and my own taste was not his, especially when it was blaring out at the volume it did.  Diatribes screamed from the television screen in the living room while I cringed in my bedroom, desperate for relief.  Dad slept in his chair, oblivious to it all.


I had a television, but even if I turned it on, it simply added to the cacophony in the house.  Sometimes, I’d watch a portable DVD player with a headset.  At best, these provided momentary alternatives of noises.


When I was still working, just being out of the house was a relief.  But after I retired, the only escape was when I ran errands. 


Sometimes, the cacophony overwhelmed me and I simply wanted to cry.  Sometimes, I did cry, quietly, tears streaming out of my own frustration and exhaustion.  But I’d have to dry the tears, wash my face, and leave my own room and bathroom.


By the time I retired, I was already doing all of the driving.  Once I was retired, I basically moved in with Dad, and my routine shifted again.  Retirement meant full-time work, just at Dad’s.  I did the errands, the shopping, the cooking, the cleaning.  I had to work with his time constraints, of course.  So if he had to be at dialysis at 6:30 a.m., I got up an hour earlier, to get him something to eat.  I admit, though, that I got to the point where I’d get up and throw on clothes maybe 15 minutes before I had to leave.


Living at Dad’s meant living in the bedroom I’d had since I was 16.  It hadn’t grown any larger.  It had been improved, however, when my brother Phil built in lovely closets on the outside wall, flanking the one window.  I managed to find workspace and storage space for myself.  More and more of my clothes and craft materials were now in Egan, and I had to impose some order.  In the corner of the living room, I set up a computer desk and that became my office space.


In truth, though, I was making a life there as best I could.  And it was, I think, a good thing, a reminder that I can adapt relatively easily.  It also served to remind me just how much I loved my own home.  I missed it, but didn’t regret the move.  It was necessary, and I was free to become a full-time caregiver. 


Just as I relinquished long periods of time at my house in Lake Charles, and from my friends and routine there, I also had limited control over my daily time schedule.  My time and my routine resulted from Dad’s.


Dad had dialysis three days a week, Monday/Wednesday/Friday, for three-and-a-half hours. His dialysis shift was the early shift, and I’d need to be there by 10:15.  If everything had worked out, he’d be out about 10:30, but sometimes it might be as late as 11 or 11:15 a.m.  It all depended on when Dad got in his chair, whether anyone (or Dad) had trouble with bleeding, etc.


Some days I’d go home and try to nap.  Other days, I did the shopping and other errands.  But that was my morning, three days a week.  Once Dad was home from dialysis, I’d try to get him to eat something before he fell asleep.  And sleep was just about all Dad did on those days.  I’d read or spend time online.  I’d try to make some jewelry.  On Tuesdays and Thursdays, Dad would be more alert and ready to visit.


Weekends were when I could have some time, if Kay came down, and I’d go to Lake Charles.  That’s when I’d try to have coffee with friends and keep in touch.  Otherwise, I slept.


As Dad became less able to take care of himself, after he fell, I had to dress him.  Once he was in rehab, I was overseeing the renovations of his house.


My time was never really my own.  I no longer determined how my time was spent, not in any major ways, or at least only occasionally.  My life felt as though it had simply disappeared.  As necessary as that was, and as glad as I was to be able to take on the role I did, I still felt the loss of so many things that I had come to take for granted.


The physical exhaustion was primary, and I suspect is for everyone who is a caregiver.  But the emotional exhaustion was not quite something I anticipated.  I had no idea that I’d get to the point where I simply felt numb.


By the time Dad died, I generally hadn’t slept for more than a couple of hours at a time.  Kay spelled me on weekends, which certainly helped.


Even after Dad died, I didn’t recover immediately.  I know it’s different for everyone, but I found myself recovering in stages and in different ways.  Initially, I was busy with legal work.  Then I went to Greece for three months and essentially hibernated.


My return to Louisiana after that respite in Greece was spent with yet more hibernation.  I still slept a lot, but I was able to catch up with friends at leisure. 


Only at the end of 2012 did I seem to return to myself.  My energy came back.  My emotional rollercoaster was over. I no longer felt lost and as though I were losing my self and my life. 


Now I could craft my own life in retirement.  And that’s been wonderful.  On Saturday night at a poetry reading, a friend said that I was glowing.  I don’t know about “glowing,” but I know that I am happier and more content than I’ve been in a long time.


Certainly there are times of stress, times when I want to do nothing more than sleep.  This weekend, I found, was one of those times.  I’ve spent a lot of time cocooning here in the house. 


But on the whole, that state of thorough exhaustion, physical and emotional, has passed.  My down times are short-lived, and I can simply enjoy my alone time.


I woke up this morning and knew I’d spend the day inside again.  But tomorrow?


I’ll be up and out by 8, meeting a friend for early morning catch-up time before he goes to work.  I’ll try to catch up with another friend whose father had a small procedure today.  I’ll have my jewelry stuff with me and work some.


Now I just am caregiver for me.  Finally.

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