Tag Archives: Caregiving

Good Bye

It’s been a month since my last post.  I was going to get back into regular writing about travel—specifically my upcoming month in Japan—but life intervened.

Two nights ago I felt my aunt’s wrist and neck for a pulse while she took her last breaths.

She chose to start hospice services after a year of chemo, radiation, and immunotherapy didn’t cure her cancer but only stripped everything out of her life that made it worthwhile—she stopped reading, attending ladies lunches, knitting, and over-posting on Facebook.

And so a month ago a nurse and an aide started coming to her home once a week, then twice, then 3-4 times, and in the end it was every day plus a private carer.

My cousin Molly, who lives nearby, was there almost 24/7; her brother came from Madison and stayed for the last 10 days. My sister and I made the one-hour drive every other day and alternated overnights.

After two weeks, a hospital bed was installed in the livingroom.  She gradually stopped eating and drinking.  As the pain advanced she receded.  Tylenol and oxycodone were bolstered with morphine and fentanyl.  I know there’s an opioid epidemic, but believe me if you are dying and in pain they are miracle drugs.  She had said she preferred to be lucid over being drugged-up, but that’s easy to say in the beginning.

As her conscious moments became fewer, I admired her practicality and acceptance.  There was no drama, philosophizing, or protesting.  I think I might be a quivering mass, crying and pissed off and asking, “Why! Why?”

She suffered anxiety as death neared—who wouldn’t?  But it was manifested in physical restlessness, and for that there was another drug, and yet another drug for nausea.  She would have hated that other people were performing functions for her that she could not—like applying balm to her lips and swabbing the inside of her mouth.

One of the hardest things was hearing other people cry, like my aunt’s 80-year-old cousin, a former cop.

Molly, on whom the lion’s share of the care had fallen, found inner resources to do things she had sworn she would never do.  We all did.  It takes a village to help someone leave this life.

When our anguish over her suffering peaked, we would consult a brochure provided by the hospice team.   Turns out, dying is a predictable process—except for the timeline.

At the last moment, I had turned off the oxygen pump that had been producing a steady kah-khoosh … kah-koosh soundtrack.  My cousins and I were standing in the kitchen talking about who would want such-and-such household items: the memorabilia from my aunt and uncle’s long careers at a private college, the cut-glass pickle boat, the bisque statuette of a shepardess who had stood on the mantel for decades.  We managed to laugh a bit, probably from sheer exhaustion.

Suddenly we realized she wasn’t breathing.  We watched, frozen, as seconds ticked by.  She gasped and inhaled.  We moved to her bedside and I took her wrist, then felt her neck for a pulse.  She took a few more breaths, then stopped.  I wanted to cry out, “Don’t go!” but my boy cousin was saying, “It’s okay mom, you can go now.”  And of course he was right.

These thoughts run through my head: “She was 89, she lived a good life.  She was your aunt, not your mother.  This shouldn’t hit you so hard.”

But our families grew up three houses apart.  My aunt and mother shared a job for a while and alternated child care. We ran in and out of each other’s houses and went to the same schools. As an adult, I drove up to spend a night or two with my aunt and uncle and cousin on a regular basis.

During her “wave of energy” (see booklet), I told her I had always appreciated how I was able to just be myself around them.  She said, “You’ve been like a second daughter to me.”  I didn’t’ say it but I thought, You haven’t been like a mother to me.  You’ve been a great aunt. 

Never underestimate your value as an aunt or uncle or cousin.

Taking Care

I missed a writing day because I invited a dozen friends over for a “Caring for the Caregivers” brunch. It’s not like I don’t have enough to do, what with work and blogging and care giving for my mother.  But for the past couple of years I’ve heard story after story from friends, relatives, and coworkers of how they are caring for their parents, partners, kids, or siblings.  Or all of those.

There’s the friend whose in-laws have been dying, in India, where if you don’t have someone at the patient’s bedside 24/7 to feed and bath and otherwise tend to them, they will be discharged.  So my friend and her husband and his sister and her husband are taking turns flying to India—to a city that is not easy to get to—and sitting vigil by the bedside as the father died, and now as the mother dies.  This is not cheap or easy.

There is the friend whose mother took her life savings—literally bags of cash—to a car dealership. Reports of an 80-year-old woman weaving down the street in a shiny new $90,000 Acura to the food shelf to get her commodities got back to my friend.  Her mother was diagnosed with dementia.  The car went back to the dealership and the mother entered a memory care unit, where she is happily making new friends.  But none of that happened easily, or overnight.

There was the friend whose mother collected things.  Anything.  Everything.  Beanie babies, empty coffee cans, popsicle sticks, travel sized toiletries, balls of yarn, cans of tuna, artificial Christmas trees, washcloths.  Her mother died, and I went with her out to the tiny farm town to clean out the house.  Actually, a dumpster had to be filled before any cleaning could take place.  When I took down the lace curtains in the bedroom, clouds of dust enveloped my head and the curtains practically disintegrated.  The most interesting thing we found was an old Playboy magazine under the shelf paper in her mother’s dresser drawer.

Please, don’t collect things.

Then there is my friend who had to cancel her trip to England.  She wound up having a 12-hour surgery to fuse her spine.  Her partner cared for her, and then she cared for him when he donated a kidney to save her cousin’s life. A kidney!  He and the cousin are both doing well.

It’s not that people are constantly complaining.  But the strain is evident in the stories, even when they’re told dispassionately.  So I felt a desire to gather people to share some stories and maybe some laughs.

It’s not exclusively women who are caregivers.  I am proud that my son has stepped up to care for his grandparents in a big way.  If I had included care giving men in my invitation, I would have had to rent a room in a restaurant to fit everyone.

I keep thinking back to a day, three years ago.  I took a day off of work and left the house at 8am.  I drove to a far southern suburb to a medical supply store and picked up a walker (Zimmer Frame) for my mother.  She had been in two car accidents which caused hairline fractures in her spine and hips.  I drove to her house, in a northern suburb, where I adjusted the walker for her, then did a few loads of wash. I then drove to St. Cloud, a city two hours away, and visited my son in prison.  After my one-hour visit, I drove back to an eastern suburb to my sister’s house.  She was on chemo and I think I folded kids’ socks for an hour and did some other chores.  Then I drove to my brother’s house in another suburb and watched his kids for a few hours.

I got home around 8pm. I was exhausted but the day had also made me realize what I was really made of.

Then I did some variation of this every week for the next two years.  Now everyone is doing well, and I just want to feed people who are in the same boat.

I’m also beginning to plan my next escape ….

Fallen Leaves

Another report from real time.  I apologize in advance that this post is longer than most.

A friend invited me to an five-hour writing and meditation retreat.  My first reaction was, Who’s got time for that!?  My second reaction was, If that was my first reaction, it must mean I need it.  So I signed up.

On Sunday I got up early and schlepped over to Theodore Wirth Park in Minneapolis, which is slightly smaller than New York’s Central Park.  I didn’t get lost because last winter I got “pre-lost” on a walk there.  I had to call this same friend to come and rescue me in the dark snowy woods.

The retreat was in the pavilion, which I would guess was built in the 20s based on its deco-era light fixtures.  It has a high vaulted ceiling, screen porches that run the length of it on both sides, and a gigantic hearth. The pavilion is set on a hill with oaks whose leaves were in their autumn finest colors of russet, pumpkin, and gold.

The retreat was led by a woman named Jeannine who runs something called Elephant Rock.  Their retreats “harness the transformative power of writing in breathtaking natural settings.” The first thing I noticed was the vocal fry.  I was going to be here for five hours, so I “set an intention,” as they say, to not let this get on my nerves.

Jeannine was paired with a guy named Tyler who is a Buddhist monk and the director of a temple in Chicago.  There were a dozen or so participants, all women.  White women with scarves, we call them where I work.  Upper middle class, white, professional women.  Oh well.  That was me, too, so for the second time that day I pledged not to be distracted by my observations.

The pattern of the day was that Tyler led a short meditation, then Jeannine gave us a writing prompt to inspire us in 10 minutes of scribbling, followed by a brief discussion.  The first prompt was an excerpt from The Painted Drum by Louise Erdrich:

“Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.”

I wrote:

In my new backyard, I sit on the bench we threw out here because we didn’t know where else to put it and the U-Haul had to be returned by 7:00.

I smoke a Swisher Sweet and drink a Blue Moon and look up at the leaves of an enormous oak tree.  It’s the end of September and the leaves are just turning.

Once a week or so I repeat this ritual and if I’m able to actually notice the leaves—if I don’t pass the entire time in my head—I notice they are now gold, now brown, now gone, fallen in heaps in the driveway, now slimy after a rain.

I moved, my mother had a stroke, then we moved her, all in a month.  My minimalist pride was blown because I had taken home piles of her shit that I just couldn’t throw away, like the giant, heavy-duty cookie sheet she used to bake chocolate chip cookies for the four of us.

My mother is recovering in her new $6,000-a-month “continuum of care” digs.  The same apartment can be independent living, assisted living, or memory care (they put a lock on the outside of your door when you get to that stage).  There’s a cemetery next door.

Just kidding.

But no one moves out of there alive unless they’ve run out of money.

We’re all moving along a conveyor belt.  My mom will never spend the winter in Phoenix again.  Never ride a bike again.  Now she’ll never drive a car again.  No more baths now.  She’ll never go for a walk in the woods alone again.  Now, no more showers without an aide nearby.  Her daily glass of wine is forbidden.

My mother is blessed with a mind that never worries, never obsesses, never ruminates.  Yesterday I found her in the party room at a Bloody Mary party.  When she saw me she put down her plastic cup and said with a foxy grin, “I forgot I’m not supposed to drink!”

I do worry, obsess, and ruminate, which is why I need to write and meditate and sometimes, have a beer and a cigar out in the backyard.  But not now, not until spring, because it’s too cold and dark outside.