Caregiving 101: Things I wish we’d known…

As some of you know…In 1996, my mother required emergency surgery for a brain aneurysm. She was sixty-nine. Three days later, my seventy-seven year old father had a massive stroke. As a family, our lives changed overnight and we began a fifteen-year journey on a path with very few road signs and an inside-out map.

As the only daughter in a family full of boys, I had the role of primary caregiver for much of this time. We all pitched in (including spouses), but in those first several years, there were so many things I wish we’d known!!

Our family had no experience with this type of situation, nor were we expecting it. To make matters more difficult, it quickly became apparent that there was no one place to get the information needed – not within the medical profession, the health insurance industry or even within our own network of relatives and friends.

Having been through it, there is some critical information that, as a family, is easily put together prior to a situation where it becomes needed. It might be a rather uncomfortable half hour or so with your parents, but at a minimum you should have:

  • A list of doctors
    • Phone number, address, date of last visit
    • Prescribed medications, preferred pharmacy
    • Known allergies
    • Past surgeries
    • HIPPA access to health information
      • Without HIPPA access, someone once refused to tell me whether my mother’s doctor appointment was at 10am or 10:15am…even though I made the appointment, always brought her to her appointments and paid the bills for said appointments!
  • Social Security number
  • Medical insurance information and copies of the cards
  • Bill paying information
  • Living will – includes advance directives that clarify what medical actions someone wants or doesn’t want taken to be kept alive, along with their wishes in regard to management of pain and donation of organs
  • Legal will – states what a person wants done with his or her belongings and assets after death
  • Final wishes
  • Favorite recipes
    • I might kill for my mother’s ricotta cheese cake recipe and so wish she was here to show me (one more time) how to make homemade ravioli!

Anything else readers can think of???

Granted, with our family it was both parents at the same time. If it were just Dad, Mom would have some (but probably not all, since he handled the bill paying and legal stuff) of this information. If it were just Mom, we would be in the same situation, since Dad didn’t have to know anything about doctors or surgeries (unless they were his) or the like. To him, that was what wives were for.

All this begin said, maybe you should put this information together for your own children so someday, they will be prepared.

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I’m back…

Almost ready to launch this book!  Well, ‘almost’ is probably a bit of a fib, but I’m getting closer.  Will keep you posted…

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Moving on…

Writer’s write…but for me lately, not so much.  When I teach, students often ask how to work through writer’s block (or writer’s blah, since most of what is written when blocked is blah).  When asked, I pour through plenty of creative ideas to help break through the fog and prod their pens forward.

These days though, I’m more apt to write my grocery list than write a poem.  Or I convince myself it’s as creative to smash stuff and redesign into mosaic art, as it is to ponder and produce a new blog entry.  Again though, writers write!

I did not plan it this way, but it is 2 years ago today my mother died (a bit more than that for my father).  Not long after Mom died I wrote about a dream I had – .  In the dream, I am trying to protect her from broken glass, which can be interpreted to represent transformation.

The other night I had a similar dream.  This time though, my mother was young and beautiful and smiling, my father quite dapper.  Again, the broken glass…again, transformation?

As much as I’ve enjoyed writing this blog, it is time for a change, time to get unstuck.  Giving it some amount of thought, maybe I allowed this ‘topic’ to block or blah me from moving on to other writing.  There is probably even some guilt associated with moving on.  You know…don’t want them to feel forgotten.

But writers write!  Next week, I’ll start a new blog (weekly’ish).  Still working out its direction – inevitably various and random, including eldercare when appropriate.  I’m feeling good about it, and hope you are too.

Just before waking from that last dream, I heard my father’s deep voice say, “Get off your ass and write!”  And he seldom cursed…so I’m paying attention!

PS…Most of us feel besieged at times with technology overload.  I’ll be going through my blog e-blast list to tidy it up a bit.  If you want to be removed, please just let me know (I won’t feel hurt…well, maybe a little).  Chocolate helps…

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Precious gifts…

No lollygagging in bed this morning.  Wanted to get my sauce and meat-a-balls started, readying for a Christmas get-together I’m hosting this weekend (hopefully the weather will cooperate, since most people do not like my driveway on a good day).  Right now, I am watching the wind blow white from gray tree limbs and am content to be in a house that smells like woodstove and home.

Gifts and wrapping paper are strewn across the dining room and a tree, no larger or fuller than Charlie Brown’s sits in the front window.  Today is my day to get into the ‘holiday spirit’.  And, I will.   I will think about Christmas’ past and the year Santa brought me a sparkly pink bicycle with a banana seat and butterfly handlebars, no training wheels!  Or how we’d visit my Nonie on Christmas Eve – climb the dark, narrow stairs to her apartment, smelling stinky fish fried in dough (my father’s favorite) and plain fried dough topped with sugar (my favorite).  Much later we’d drive home searching the sky for reindeer.

I will remember the very first Christmas in my own apartment.  My son and I determined to have a real tree.  And we did…but who knew you needed a tree-stand to set it in, so it leaned in our bathtub for days and we showered around it.

I will think about my brother, Joey.  How for several years, we used to wake each other (way early) on Christmas morning, open all our presents and start playing with them before anyone else was even up.  And I will realize these were the years my oldest brothers were in the military – in Vietnam, in Okinawa, in Germany.  Several Christmas’ without one or the other or both.  How difficult it must have been for our Mom and Dad.  How bottomless, their grief.

I recall one Christmas (late 60’s probably) when Joey and I set the tree up ourselves.  A few days before school let out and it was still in a box in the cellar.  Neither older brother would be home for the holidays that year and the house was empty of spirit.  Joey and I pulled out the tree, a box of random ornaments and silver garland leftover from the year before.  We postured that we weren’t decorating for us.  We were doing it for our parents and our little brother, Chris.

Yet, when we called them into the room, it was one of the only times I ever saw my mother cry.  And I remember thinking how small, how shrunken my father looked.  And still, at the time, I felt disappointed in them both.  Not understanding where their hearts were (I was only maybe 9 or 10).  I was just a little girl who wanted to hold onto the merry and the magic of Christmas…a little bit longer.

So, when you feel like you are getting too caught up in the stress and strain of the season, step back and breathe.  Instead of standing in line for that ugly sweater, remember those who cannot be here for the holidays.  Take the time to send them your love, your thanks, your prayers.  Embrace their families, their friends.

And hold tight to those you love.  They are your most precious gifts…

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On kitchen tables…

Yesterday’s Poets & Writers prompt was to muse about our kitchen tables – the food, voices and thoughts they have experienced.  Odd, since most of us do not have a kitchen table anymore.  Generally, we have ‘dining room’ tables.

The prompt though, took me back to my mother’s table (in the kitchen, of course).  I have written about it more than once already and since her death, I’ve sat there often in my dreams.

Her table filled most of the kitchen floor space.  It was typically sprinkled with flour, scarred and scratched, spattered with finger paints or spilled milk.  Not a chair matched, nor did the extension leaf made by one of my brothers in shop class.  And always, in the middle of the table rested a crusted sugar bowl shaped like a red apple.

In her cramped, cozy kitchen the table was as much counter as eating area – a place to roll out ravioli dough or decorate butter cookies.  With no desk in the house, it was also where we did our homework (my book reports often stained with sauce or grease) and played Slap Jack or Chinese Checkers.  And once a month, it was where my father would set down the mysterious green lock-box and pay the family bills.  A cigarette dangling from his lips, it was one of the few times we would ever hear him curse, “Jumpin’ Jehasaphat and all his little disciples!”

I go back to that kitchen table often (didn’t really need the prompt), but now when I envision it, I sit there with my mother and we are both grown women.  We drink coffee and share recipes, books we’re reading, family gossip while eating banana nut bread topped with her famous pineapple cream cheese spread.

From the plump red apple, Mom stirs three heaping spoonfuls of sugar into her mug.  She lights a Pall Mall, spits out a fleck of tobacco, blows smoke rings toward the ceiling and says, “Stay…have another cup of coffee.”

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On Reading…

While driving yesterday, I listened to Anna Quindlen reading her memoir, ‘Lots of Candles, Plenty of Cake’.  I slapped the steering wheel in agreement when she spoke of how reading connects us with a larger world, yet also brings us back to the familiar.  She says, “Books are the plane, and the train, and the road. They are the destination, and the journey. They are home.” Author, William Nicholson says, “We read to know that we are not alone.”

I have always loved to read.  My early memories conjure images of being curled up on one end of the couch (my father on the other end) with a book, snugged into a pillow, a cup of hot chocolate or lemonade leaving wet rings on the scarred end table beside me.  I recall the table lamp, etched with cows and a stream of leaping fish (or maybe that was the picture on the wall above the couch).  I could sit there for hours at a time, unmoving except for my eyes and the turning of each page…losing myself in the lives and stories of others, appreciating a world beyond.

Recently, I bought a bag of used children’s books from the local library.  My son’s oldest daughter reminds me of myself when I was young.  Last time they visited, she saw all the books, slid down to the floor in the dining room and sat right there, reading passages out loud, sharing fun facts, enjoying herself.  It was a very sweet moment for Nonie!!

Listening to Ms Quindlen talk about reading, I tried to recall the title of the first book to make me feel less alone, to help me feel I had a friend beyond the living room couch.

I am so much older now and cannot remember the name of that book or the author or even much the story itself, but at the time, I was the new kid starting at a new school in the middle of 3rd grade.  The title escapes me, like so much else these days, but the girl in the story could have been me.  She too, was the mousy-haired new kid.  She too, felt misunderstood by her family.  She wanted to disappear, go back to where she came from.

I must have read that book 100 times (you’d think I could at least recall the title), hoping the words would imprint on the inside of my eyelids so I could call them to mind when sitting alone in the cafeteria or riding my bike by myself.  The author’s words tethered me, made me feel less solitary.  They reached beyond the pages, pulled me back and into an embrace.  This is what stories do!

There is an article at about memory and the passing of time.  It states how we are most likely to vividly recall experiences and information from when we are teens (or younger) on into our twenties.  It is known as the ‘reminiscence bump’.  Not only do we tend to evoke events more fully from that time of our lives, we are also able to more readily quote movies, song lyrics and books we read…or not 😉

And here is a good article from the Hartford Courant about the importance of support groups for caregivers …

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On Dunkin Donuts and aging…

“You look better now than you will ever look again,” says a female author in an NPR interview with Terry Gross.  I’m in the car, listening to an audio book on writing.  Leaning into the rear-view mirror, I consider the lines on either side of my mouth, the dark circles under my eyes, the way my hair has its own say and think, “This does not bode well.”

I get it though.  Most of us look at last year’s photos and unless they were taken while we were falling out of bed, hung-over…we can appreciate how ‘good’ we used to look.

This reflection began earlier in the evening while at the local Dunkin Donut drive-thru.  The barista is getting my change.  He’s barely sixteen and is cute in a way he will never be cute again.  I say, “May I have my receipt please?”  He lifts his head out of the register and turns toward me.  His face is a deep shade of red and his eyes bulge like balloons about to pop.

“Did you just ask me if I was single?” he stutters as I reach for my change.  Our fingers brush and we both jump back as if splashed with cooties.  The coins fall to the pavement.  “Receipt, receipt,” I say.  Then, “Just keep it!”

All the way to my appointment, between spits of laughter, I try to imagine what he was thinking … what he is probably telling his friends.  My face colors, but it is as much from attacks of the giggles as from any embarrassment.

At sixteen, I too worked at Dunkin Donuts.  Back then, the uniforms were not comfortable t-shirts and jeans.  Girls wore hairnets and uniforms – short, pink dresses.  Many an older man would order donuts from the top tray of the window case, enjoying the necessary stretch of the waitress, as much as any jelly stick or glazed.  We girls scoffed at their behavior, these men gross and ancient, though they were probably younger than I am now.

Like most sixteen year olds, I yearned for the future, couldn’t wait to grow up.  I tried to imagine being forty-three years old when the world spun into the 2000’s.  My friends and I figured it would be like the Jetson’s – life in outer space, phones with viewing windows, robots to pour our wine.  We couldn’t envision it except through cartoons or Stanley Kubrick.

Now, the year 2000 has come and gone.  I will be fifty-six in a few months.  I eat well, exercise and most days, feel pretty good.  I suppose I am “grown up”.  Forty-three sounds young to me now.

And most days, I do not mind my aging.  Yet when I think of that young barista, how he thought I was hoping he was single … I start to laugh all over again, and I laugh so hard, I cry.

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