Posts Tagged With: caregiving

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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Baby Boomer Caregiving

My friend Charles and I are not alone. We were the primary caregivers for our respective parents. I had sibling help — my sister Kay was my much-valued tag-team caregiver. Charles, though, is an only child.

Charles is six months older than I; we’ve been friends since his sixth birthday in January 1957, when my family moved to the Sun Oil camp in Egan, Louisiana. We started school together; we graduated high school together. Our parents ended up buying land and moving houses, living across the street from each other. My mother died in July 1993; his dad died in December that year. He became a full-time caregiver for his mother in 2009 or so. I was part-time caregiver for my dad at that point, but became full-time by 2010.

My point? We were born in 1951. We’re baby boomers. Between 1946-1964 nearly 74 million of us were born. In 2011, the first baby boomers turned 65. We’re living longer. We’re redefining retirement.

We’re also increasingly part-time or full-time caregivers for our parents (or other relatives). According to the MetLife Study of Caregiving (, almost 10 million adult children over 50 are now caregivers for aging parents, and the number grows daily.

It’s an interesting study, one well worth spending time with. Lots of statistics there might surprise a reader. Certainly an eye-opener is the financial cost for caregivers: nearly thee trillion dollars in estimated lost wages, pension and Social Security benefits. That’s startling. I was more fortunate than many: I was close enough to live with Dad and commute to work for a number of months before I retired and moved in full-time. I had a flexible job (teaching at university). I had the support system available in the small town I grew up in. My sister lives 3 hours away and was (and is) still working. She was my tag-team partner.

We had no long-term care insurance, but Dad had Medicare and Social Security and no mortgage. Charles’s mother had long-term care insurance that had been beneficial but was eventually not renewable (she had purchased it when it was a new product, and terms have since changed). Her savings and Social Security and Medicare then filled in.

By the time Charles retired, he needed to live with his mother to help defray hired caregivers. As he puts it, he had “the night shift.”

I never got to the point of having to look for hired caregivers — Dad was still mobile, still driving, for quite a while. When he was no longer able to drive to dialysis, I had help from a friend. I was lucky — the caregivers I knew were actually already working, for Charles.

Having friends so close was wonderful. We were (and continue to be) each other’s support system, or at least part of it. We shared stories, suggestions, talked about Home Health care and hospice. We shared mowing equipment. We shared laughter.

In addition, I spent a lot of time on the internet while Dad was sleeping or in dialysis. I read for pleasure, certainly. I played word games like Scrabble or Words with Friends. However, I also searched out what I could find from other caregivers’ stories online.

Many baby boomer children don’t live as close in proximity to their aging parents, and thus have to arrange many things long-distance, relying on others, hired and otherwise. They must take time off from work and travel to their parents’ homes. And if, as is the case, many of them are also caring for their children, they are what are known as “the sandwich generation.” That would be where my sister fits in. I lived 45 minutes away from Dad. While he was working, Charles lived in Houston, several hours away from Egan. Between us, we fit a lot of different descriptions for baby-boomer caregivers.

I still look at websites about caregiving; I still read about it. While I am no longer a caregiver, I still have residual interests and issues that are directly related to it.

Once you’ve been a caregiver, I think, you’re changed, for better or worse. For both, if I’m honest. Certainly there are difficult times, physically, financially, and emotionally. If parents don’t have adequate secondary health insurance in addition to Medicare, their children often pick up financial responsibilities. Second mortgages on homes may result. Savings get tapped into. Searching for various agencies that provide assistance can be frustrating.

Becoming a caregiver is often gradual. Certainly that was my case. My dad was fiercely independent. Even in his 80s, on dialysis, he drove himself three times a week for the three-plus hours that kept him alive. He had stents. He had triple-bypass surgery. And three months after that triple-bypass surgery, he was in a ground deer-blind, with his gun, ready to hunt. He didn’t get anything, but that wasn’t the point. He was determined to keep as much of his life in control as possible.

He knew he was slowing down. His attitude was frankly amazing, though — good-hearted, with humor, and a no-bullshit approach to reality. He didn’t have to like it, and he’d express frustration. As he weakened, he was more vocal about being “useless” when he couldn’t help out with yardwork, or climbing a ladder, or doing something he was used to doing.

He was more forgetful — I began going to doctor’s appointments with him. I had power of attorney. I kept track of medicine. I managed more and more. By the time he was on oxygen and had to carry his tank with him everywhere, I was the driver. I’d drive us to the family farm in East Texas. As I’d drive, we’d talk and laugh if he didn’t nap. It was nice, he admitted, to be the passenger for a change — he got to enjoy the scenery. He’d grin and chuckle – – telling me he had a pretty good chauffeur.

I am only one of millions of baby boomer caregivers. Yet I wonder about what will happen when it’s my turn: I have no children. Some of my friends and I laugh about needing to set up our own commune (yes, you can tell we’re baby boomers!), complete with an on-site nurse. Yet it’s a serious concern, one worth planning for. I don’t have long-term care insurance. I’ve got a defined pension. I’ll have Medicare and my state insurance will become secondary. I’ll have a tiny bit of Social Security (because I worked for Louisiana, which doesn’t contribute to Social Security, I will have my minimum Social Security benefits that I qualify for docked at least 40%). I have a house with no mortgage, and other real estate that I could, if necessary, liquidate. I have an IRA. I’ve bought an annuity. Somehow, I hope, I’ll be able to piece together enough for my own care. And I would be willing to live in a retirement center, if necessary.

That’s long-term, I hope. Dad was not quite 90 when he died. His older sister is 92 now, and still lives alone. Their last aunt died in 2010, nearly 105 years old. She lived by herself until her 99th year.

I hope that I can approach my life (and my death) with the fortitude, honesty, and attitude that my dad did. With the patience and lack of complaint that my mother did. That would be honoring them and their examples.

And I hope I can continue to laugh, as they did, almost to the end. Oh, and dance around the house (even if it’s more like shuffling after awhile) while I clean house or cook — listening to music and singing — as my grandmother did.

Pretty amazing examples, when I think of it.

Time for some music, I think.

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Photographs and Memories

Recently, I’ve decided that there’s a club no one invites you to join, but that you join without realizing:  the caregiver’s club.  Even though you intuit that one exists, there’s no real way to anticipate how it operates, not exactly, nor how it changes your life.

Most of my life, I think, I knew that I would end up being the primary caregiver.  I was, after all, the eldest.  I wasn’t married.  My career teaching at university meant that I lived closest to our parents.  My brother lived in Florida.  My sister lived in Natchitoches, in north Louisiana.  I also had the most flexible job.  I didn’t feel trapped.  I didn’t question it.  I was happy to fill that role.

Mother was ill for a long time; Dad retired early, at 60, and took care of her.  They had some good years before she became an invalid, with a wheelchair, and on dialysis.  For her, I was the fill-in, for the times when Dad and Phil went hunting out in West Texas.  Of course, I was also there many other times, and by the 90s it felt as though I began every semester with Mother in the hospital in Lafayette.  I learned how to read her blood sugar, how to get her into and out of the wheelchair, how to tell when she was probably having a small stroke, etc.  My knowledge of medicine grew around her.  Now I realize that her health really became problematic when she was only in her 40s, while I was teaching at Lamar University in Beaumont.  First was the blood pressure, then the brittle diabetes, then the congestive heart failure, then dialysis.  After a while, her medicines cost about $1500 a month — in the early 90s.  Yes, I learned a lot, especially to be grateful for solid insurance. I was the helper, the one who asked questions and took more notes.

But I knew I was only second-best; that was clear.  It was Dad she wanted, and he wanted to be there with her.  I don’t think I really knew just how close they were until then.  Somehow you don’t see your parents as anything other than, say, your parents.  Yet there was that one time in the hospital in Lafayette when I saw them look at each other and realized that they were still the young couple who’d fallen in love despite the odds of different religions and married in 1948.  I could help Dad out, and did.  But the job was his, and not mine, other than temporarily.  When Mother died on July 30, 1993, Dad and Phil were with her at the hospital, and I was in Egan; Phil had come in from Florida only the day before, and I remain convinced that Mother waited for him.  She hadn’t talked in several days at that point, but she was aware of us with her, and she wouldn’t leave without Phil being there.

I watched Mother and Dad take care of Phil, my brother, when he had cancer the first time, at 26.  He recovered, eventually moved to Florida, and was later diagnosed with a melanoma on his arm; that traveled to his brain, and then his spine.  By the time he was terminal, Mother had died.  Dad was once more the primary caregiver while Phil was in M.D. Anderson Hospital in Houston in fall 1995.  I was there every weekend, from Friday afternoon to Sunday evening, and on every holiday.  My sister, Kay, was there when she could be.  Again, I was closer and when my last class was over, I was on the road every Friday.  Dad slept in the pull-out chair; I slept on the floor.  If I could convince Dad to take a weekend off and go to Egan, I got the chair.  Occasionally I stayed in my cousin Jim’s condo; that was a real treat at Thanksgiving and Christmas.  Phil was released two days after Christmas and came home to Egan, where we had hospice.  He died on January 4, 1996, with Dad and me and Phil’s fiancé, Darcie, at his side.

While he was at M.D. Anderson, I became familiar with yet more medical jargon and helped daily when I was there as nurses and Phil’s primary oncologist cared for him through one procedure after another.  For the first time since he was a little boy, he called me “Cheryl Lynn,” and I had to be there right at the bedside holding his hand most of the time.  Together, Dad and I helped take care of him, but during those weekdays while I was teaching, it was Dad who bore the heaviest load, because he had to be there alone.

Dad was such a vital person, independent and stubborn (I get my stubbornness honestly).  He went on dialysis when he was 80 or 81, and drove himself there 3 days a week. Well into his 80s he drove to East Texas almost every other week to meet his sister, Mildred (she’s 18 months older) so that they could mow the large yard and part of the pasture at the family farm.  I worried, but there wasn’t much I could do, frankly.

He was determined not to give up driving, and that was difficult for him.  Yet his family practitioner took that chore out of my hands, and when she put Dad on oxygen, that effectively ended his driving.  While I was still working, I relied on a close family friend to drive him to dialysis.  I spent a lot of weekends there, and eventually did more commuting to work than commuting to Dad’s.  Kay came in too on weekends, and spent time helping out.

We were fortunate, really, that we enjoyed each other.  We really liked each other.  Spending time together wasn’t a chore. And I needed to remember that, because there were still times when I was so tired and exhausted that I was snappy and bitchy.  (Just ask Kay!  We were each other’s “safe place,” and could unload with each other, then apologize, and it was all okay.)

So as Dad’s ability to live alone ended, I “lived” with him much of the time and commuted to Lake Charles, spending weekends at my own home when Kay came down.  She and I laugh about tag-teaming, but that’s exactly what we did.  My last semester and a half of teaching was spent doing a lot of driving, but it was no hardship.  I got tired at times, and learned to treasure sleep, but was so grateful that I was able to work out the responsibilities that way.

When I retired in May 2011, I spent most of the time in Egan.  Dad was still pretty mobile and relatively stable.  He was losing weight.  He was more unsteady on his feet.  While I was gone on a trip in December 2011, he got tangled in his oxygen cord and fell, and that was truly, I think, the beginning of the final slide.  By the end of December, he couldn’t really walk without a walker AND someone helping, but that was only for a few steps.

I bought all new clothes for him so that I could dress him — sweatpants and pullover sweaters.  I fed him too.  By the time we finally got a diagnosis for his problem — an L1 compression fracture — he was dependent.  His surgery seemed to help, but he went to a nursing home for rehabilitation care.  In the two months he was there, I got the house renovated for him.

He came home and had a good first week.  The second week?  Not very good, and he died at home just about two weeks after he’d returned.

He had been such a role model for Phil and Kay and me all of our lives, and was such a generous, loving man.  His own role as caregiver for Mother and Phil was unstinting and without complaint.  He gave joyfully of himself.  I think that by the time it was my turn for that full-time role, I had the way made easy.  I only hope that I lived up to my role model’s example.

Caregiving requires attention.  It demands much.  I don’t know when I’ve ever been so tired and exhausted.  Yet it can also be a blessing.  Time together, laughter, talks about so many things.  I would do it all again, even knowing the outcome.  While I was living with Dad, I spent time online looking for stories by other caregivers, looking for articles about others like myself.  There are a lot of us out there, and not everyone has the flexibility I had in my teaching.  Not everyone has the support group.  The club is huge, my friends.  Some of you are in it too, and we’ve talked about it.  Just as caregiving became my life, it continues to be part of me even though Dad has died.  It remains part of the way I live, defines how I see things.  How I appreciate things — family, friends, home, pets.  Even — maybe especially — time.

It’s been over a year since Dad died.  For the rest of the year afterwards till 2013 began, I think I hibernated.  Sometime in December 2012 I seemed to wake up.  The next six months have been a gradual recovery of my own life — or maybe a rediscovery, a re-invention, even.

At times, I’ve felt absolutely lost, without purpose.  So much of my life had been focused on teaching, a career I cherished and loved.  And then my life centered on taking care of Dad.  The second focus overlapped so much with the last months of teaching that I didn’t really have a transition period.  I simply moved into caregiving full-time. But after?  Neither focus was there; I was cut adrift and felt it.

I am slowly finding myself again, learning to make a life again.  Rediscovering my own home and finding the pleasures of it once more.  I’ve realized that I have never simply lived in this house without working.  Now I live here in a way that I never did before.  Schedule?  No, I don’t have one, but I’m setting one for myself.  Defined not by someone else (not most of the time) but by me and my interests.

In January 2013 I began (finally) the renovations on my home in Lake Charles.  For far too long I’d not been able to do what needed to be done.  But suddenly, it seemed, it was my time — and the kitchen project took off.  Progress there made me feel as though I hadn’t simply abandoned it to fall apart. I got the porch and brickwork repaired.  The kitchen’s not complete yet, but will be before too long.  And I don’t need to feel frustrated when it doesn’t happen immediately.

When I left for Greece in late April, I took a break.  Friends came to visit there.  I spent a lot of time reading and simply taking care of my apartment. I went to London for a long weekend.  I went to Istanbul for a few days with a friend. I visited with friends in Greece, had coffee, went to the movies, did the shopping.  And the last three weeks I was there I participated in a poetry workshop.  The companionship, the daily writing — what a treat.  The last dam of the writer’s block that has characterized my life for a year has (fingers crossed) been broken.

I know I’ve written about this before, but I am reminded of it all at the oddest times.  My cousin Mike sent Kay and me some photos he and his wife had of a few days of a trip to Lake Sam Rayburn; I’m not in either photo.  But what a treat to see Mother and Dad and Phil and Kay (and Mike and Sis) enjoying themselves.  Even now, I get a bit teary thinking of the photos.  Mother is there sitting with Dad; they’re laughing.  Phil is clearly telling a story in the photo of him in the boat — he’s grinning and has his arms stretched out as though to say “it was THIS big!”

To see them healthy and happy and laughing is to remind me that the caregiving has only been a blessing, truly.

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