Archive for the ‘Here and now’ Category

Resolution in memoriam

The most important vote taken today by Ohio State’s Board of Trustees, in my humble opinion, was approval of the resolution in memoriam honoring my dad. I’ve pasted the text in below – the pdf is hard to read.

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Synopsis: The Board of Trustees of The Ohio State University expresses its sorrow regarding the death on June 5, 2019, of James H. Caldwell, MD, Professor Emeritus of Internal Medicine in the College of Medicine.

Professor James Caldwell did his undergraduate and medical school training at The Ohio State University, receiving his MD and acceptance into the Alpha Omega Alpha honor society in 1963. He completed his internship in Medicine at the University of Chicago Hospitals only to return to The Ohio State University College of Medicine to serve as a junior assistant resident in Medicine from 1964-65. His residency training was interrupted by a call to service in the United States Air Force, where he served as a Captain from 1965-67. Dr. Caldwell then completed his residency in Medicine at The Ohio State University Hospitals, as well as a fellowship in Gastroenterology. He joined the Ohio State faculty upon completion of his fellowship in 1970, and rose in the ranks to full professor in 1981.

His numerous accomplishments in medical research and education endeared him to his peers and trainees. During his tenure at Ohio State, Dr. Caldwell served as an investigator with the Office of Research and Sponsored Programs and was the associate director of the Independent Study Program from 1994 to 2001. He was nationally recognized as a leader in the study of intestinal digitalis glycoside transport, as well as eosinophilic gastroenteritis, and was awarded multiple extramural grants in relation to this field of study. He also received numerous honors and awards for his teaching contributions to the College of Medicine. Most notably, he received the Outstanding Teacher Award for the Problem-Based Learning Program in 1992, and participated in both national and local post-graduate courses.

Dr. Caldwell was on staff as a highly respected academician, researcher and clinician for 38 years. He was an outstanding role model for medical students, trainees and his peers, and he brought a humanistic approach to medicine. He received a heart transplant in 1994 and continued to work until his retirement in 2008. During his recovery from his heart transplant, he found solace in gardening. Through the help of OSU Extension, he became a Master Gardner and continued his training in life.

He was a truly wonderful person, physician and scholar, and he was first and foremost dedicated to his family. He is survived by his wife of 46 years, Dr. Patricia Caldwell, a physician in her own right who was also his colleague. She retired from Ohio State’s Division of Cardiology in 2009, and continues to hold an appointment as Professor Emeritus.

On behalf of the university community, the Board of Trustees expresses to the family of Professor James Caldwell its deepest sympathy and sense of understanding of their loss. It is directed that this resolution be inscribed upon the minutes of the Board of Trustees and that a copy be tendered to his family as an expression of the board’s heartfelt sympathy.

Poetry

At Dad’s memorial service, my sister Laura read a poem she had written in February 1994. By this time, Dad had been hospitalized for several months, waiting for a donor heart. And my niece Julia, Laura’s daughter, selected a poem to read for the service. I have been meaning to share them here for some time.

THE WAITING
by Laura Caldwell

Everywhere I look I see your heart.
It’s pulsating on the stove in the meat sauce
marinating with sugar and cumin to fill
my children’s plates and stomachs.
And woven into a wool muffler it
circles my daughter before it shapes
my lips as they kiss the rose on her cheeks.
Imprinted in the gauze of a band-aid
stuck to my skin, it continues to
dress subtle abrasions and inflamed wounds.
So solidly are your arteries built
into the bricks of my mantel, I cannot imagine
that blinking embers could still.
If only I could collect all of these
hearts, graft them into a valentine and
deliver them to your sterilized room,
Maybe then your new heart would come.

Written February 14, 1994. Dad received his heart 10 days later, on Feb. 24, 1994.



TRAIN RIDE
by Ruth Stone

All things come to an end;
small calves in Arkansas,
the bend of the muddy river.
Do all things come to an end?
No, they go on forever.
They go on forever, the swamp,
the vine-choked cypress, the oaks
rattling last year’s leaves,
the thump of the rails, the kite,
the still white stilted heron.
All things come to an end.
The red clay bank, the spread hawk,
the bodies riding this train,
the stalled truck, pale sunlight, the talk;
the talk goes on forever,
the wide dry field of geese,
a man stopped near his porch
to watch. Release, release;
between cold death and a fever,
send what you will, I will listen.
All things come to an end.
No, they go on forever.

from In the Next Galaxy © Copper Canyon Press, 2002 

 

Eulogy: Two hearts

At long last, I am publishing the eulogy Patrick wrote for Dad’s memorial service, which was held on Monday, June 10, 2019.

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On display during calling hours and the celebration of Dad’s life: Pat made the quilt as a gift for Dad’s 75th birthday. The family photo was taken during a Caldwell family vacation at Bald Head Island several summers ago. The piece at right was a gift to Dad upon his retirement from Ohio State’s medical center. The cane lying across the front of the stand was made for Dad by a grateful patient.

We Caldwells didn’t trust ourselves to get through a eulogy, so Patrick was recruited. He labored over it for hours and hours with just a few days to prepare. After the service, a friend asked me if I had written it, because I am a writer. But no, this comes straight from Patrick’s heart and mind and affection for Dad. And we thought it was perfect.

Two Hearts

I’m here to try to tell a story. This is my story.

We are here to remember and honor James Hudson Caldwell, MD. He was born March 27, 1939, in Bellaire, Ohio. His parents were Robert M. and Goldie Caldwell. He has a brother, Bob.

He graduated from Shadyside High School and earned his undergrad and medical degree at THE Ohio State University. He skipped grades between elementary and high school and he completed his undergraduate degree in 3 years. He was a gastroenterologist at The Ohio State University Medical Center.

In Columbus, Ohio, on Dec. 22, 1956, Colo the gorilla became the world’s first gorilla born in a zoo setting…

That’s quite a transition.

In the early 1970s, Colo was having GI issues. A call for help and James Caldwell came to the rescue — imagine a shirt with a colon shaped into an S.

Colo was the first gorilla born in captivity and Dr. James Caldwell was the first physician to perform a GI procedure on a gorilla — in Columbus, Ohio, U.S., North America, the world, etc.

Emily remembers that the procedure occurred in the grass: Colo, Dad, and a zookeeper. As the anesthesia began to wear off, Colo gave a little squeeze of Dad’s arm. OK, I THINK IT IS TIME TO END THIS PROCEDURE.

Although he was accomplished academically and professionally, this man saved the life of a gorilla!

He shared with me that one of his greatest regrets was not making the Ohio State University Marching Band as an undergrad. His gait made it difficult for him to march, so he didn’t make the cut.

I’m somewhat surprised that this incident did not lead him to study orthopedics for a few years, just for the fun of it.

He served in the U.S. Air Force in Grand Forks, North Dakota. He was a longtime model train enthusiast.

I also grew up in a small town that had a rail line running through it. So I grew up, possibly like Dad: Windows open in the summer. I would hear, late at night, the sound of the train, coming from somewhere, but also moving on.

That sound, for me, will always take me to that time. The sounds of trains are evocative for me.

Jim was, however, the practical environmentalist: trains and light rail can be an efficient and carbon-neutral form of mass transportation. But he also dreamt of the Caldwell Memorial Monorail that would connect campus and downtown.

I think trains also took him back…

He was a loving husband, father, grandfather, and father-in-law.

For those of you who did not know me in the 1980s or 1990s, I used to have hair…a lot of hair. In 1988, when I first met Dad — Karl Marx, Albert Einstein, Bozo the Clown. I wanted to be Marx. I knew I would never be Einstein. But I think Jim — Dad — probably thought BOZO. And looking back, I can’t disagree.

After college, Emily and I spent some time apart. Emily went to Maine to work as a journalist. She covered George Bush Sr. in Kennebunkport, Maine. (I think her work on the “recycle-gate” controversy led to Bush Sr. being only a one-term president. Ask her about it.)

I went to Kentucky for grad school to study sociology.  The sociology department once gave me an award for having the hair that was most similar to Bart Simpson’s hair. I was still struggling.

Then in early 1994, two hearts began the process of bringing Emily and me back together. They were not our hearts. Jim had a heart transplant. My dad, a quadruple bypass and valve replacement.

We reconnected over our fathers’ hearts.

Later in 1994, Emily and I  got engaged. I’m certain that I spent time with Dad and Pat before our wedding in 1995, but it was at our wedding that I knew Jim loved me.

While Dad was a conversationalist, in 1995, he could be a bit circumspect when it came to verbally expressing emotion. So he expressed his emotions through his actions.

I was crying a bit during our wedding, and couldn’t get to a tissue or handkerchief. I think this touched Jim.

We were married in a barn, on a little stand in the middle. Families facing each other…the Hatfields and Corleones.

When I came off of the stand, he caught me and held me. I will always remember that hug and the love I felt in that moment.

From then on, I was lucky enough to have a second father in Jim.

I had a dad in Ohio in addition to my dad who ended up living in that state up north (O-H…) [Yes, attendees responded with I-O.]

I think Dad appreciates that response.

My mom still roots for the Bucks.

Dad was a Master Gardener.
Dad enjoyed a good meal.
Fish Fest became a Christmas Eve tradition.

At the end of the Fish Fest, at the end of any meal or any visit, we would say it was time to leave, and never go. Dad would start another story or continue with the story he was telling.

We always had more to say, more stories to share. We just wanted to spend a few extra moments together. Even when it was time to go, we wanted to hear one more story.

Dad was born in a small Ohio town.
He loved trains.
He helped save the life of a gorilla and the lives of actual people.
He loved gardening and the environment.
He was always on the lookout for a new restaurant and a good meal.
He gave a great hug.
He was a loving husband, father, grandfather, friend.

He will always be with us when we tell our stories of him.

 

Dad’s heart

Dad BHIA girl can get greedy, and become disillusioned, when her dad has a heart transplant in 1994 and is still around to celebrate his heart day every Feb. 24 for 25 years. And then celebrates his 80th birthday. I considered 2019 a good year for my dad, James H. Caldwell, MD. His birthday was on a Wednesday in March, so we planned to whoop it up in his honor in July at Bald Head Island, our beloved Caldwell family vacation spot. We will still observe that birthday and celebrate his remarkable life in late July. His seat will be empty, but he will be with us.

Dad died at around 9 p.m. Wednesday, June 5, at Ohio State’s Ross Heart Hospital. He had been hospitalized for 10 days for what began as a GI bleed. Multiple tests failed to identify the source of the bleed, and it eventually stopped after he was taken off his blood thinner. He experienced a slowed heart rate during one test, leading to some electrophysiology testing and procedures. His last procedure, to check for clots in his atrium (no clots found), was successfully completed Wednesday afternoon. He’d be in for observation for two days and home by the weekend. And then, disaster struck, in what we assume was a pulmonary embolism, or perhaps a massive heart attack.

Being in the hospital meant Dad was missing valuable late spring outdoor time. A lover of gardening for as long as I’ve been alive, he became a Master Gardener through OSU Extension over the many months of his recovery after his heart transplant. The house he and his wife Pat have lived in since 1991 has an enormous yard with room for vast perennial beds and a sizable vegetable garden — one of its major selling points. Poor Dad could never convince me to love gardening. I like the cosmetic and culinary results but I hate the work. But he had tomatoes and peppers that were ready for planting, pronto, and I was tasked with getting that done. I took it seriously, following his instructions and the layout he had drawn on a scrap piece of paper. “Lord help me if they don’t thrive,” I joked in a text to my siblings.

I enjoyed sending text updates over the past week to my brothers and sisters, who live in Seattle, Iowa, Grand Rapids, Cleveland and Brooklyn. The news about his health was always pretty good. Dad lost his temper one day with the medical staff because he was frustrated with the poor communication among the various teams working on his care – two different heart services and the GI service. His spirited response conveyed he had energy, an improvement over his weakness from anemia when he entered the hospital. And yet, for a long time he was what I describe as fragile, physically. Immunosuppression drugs take a toll on the human body, and he had osteoporosis, osteoarthritis, stress fractures, muscle detachments, renal failure and I don’t even know what else. He had a bad infection last summer that set him back further, but, as a very compliant physical therapy patient, he rebounded nicely.

With Mom, whose death I anticipated for 10 years, I found myself surprised about how devastatingly sad I was when she died, considering I wanted her suffering to end. Dad has been fragile for many years, but was always fine with minimizing acknowledgment of his physical limits. So all of our conversations at the hospital over the past 10 days were characterized by an expectation that he would go home, take some time to regain strength, get back to the garden and ride in the car with me and Patrick for the trip to Bald Head Island. And so, his death was unexpected. And of course, I am devastatingly sad, while I am also so grateful that he lived as long as he did.

Dad was a master diagnostician, an educator, an intellectual, a conversationalist and storyteller, a lover of classical music, a foodie, an avid consumer of news and information, and, since the early 2000s, a progressive political activist. He and Pat were devoted to each other, and spent very little time apart over the course of their long marriage. And he leaves a legacy in his kids who, along with our families, are smart, talented — musicians, writers, poets, scholars (we all have postsecondary educations) — thoughtful, temperamental, driven by conviction, funny and a little bit (or a lot) cynical, and, like Dad, have a healthy appetite for delicious food and all of the joys, big and small, that life has to offer.

Sibs in the City

And just like that, three years have passed since Mom died. Oct. 27 was the anniversary of her death.

Earlier this month, Laura, Jeff and I spent a weekend together in New York to celebrate Mom. The year she died, we got together shortly after her funeral for a November weekend in New York, where Jeff and Laura lived at the time. We decided then that we would gather each fall for a weekend in memory of Mom. I call it Sibs in the City. And we have kept that promise to ourselves.

Below is a photo of us having drinks at the Whitby Hotel in New York on Oct. 6 after seeing a matinee of a terrific play. Our annual agenda would be roughly the same if Mom were along for the trip: some moderately fine dining, but nothing too fancy; a Broadway show – or two, or three; a little shopping; a museum exhibit if we can fit it in; blocks and blocks of walking; and time for a midday nap.

It is something positive associated with losing our mom.

We texted each other on Saturday (Oct. 27), Jeff first.

Jeff: Happy Mom day. Thinking of you two.
Me: Same to you. Will be writing a blog post. Love you.
Laura: Love to you both. You and Mom have been on my mind today.

Mourning the loss of a parent is an unpredictable experience, and we all grieve in our own way. I’m grateful, though, that the three of us have elected to lean into the shared experience, so at least sometimes, we don’t have to do it alone.

Mom on my mind

I was weary from a 10-hour car ride, my clothes a little disheveled and my arms draped over my backpack and a small cooler to keep them from falling off the tram bench. After 20 minutes on the ferry and now riding in an open-air shuttle to our rental condo, my hair was a wavy, windblown mess. I imagine my face registered the fatigue of the day as well as the satisfaction that comes with arriving at a vacation destination.

“You look a little like Bonnie,” Patrick said.

Mom wasn’t necessarily disheveled on a regular basis before she got sick, but she was typically informal in dress and manner. The same could be said about me, too, I think. I’ve tended to believe all my life that my facial features favor Dad, but there is no question that I share many of Mom’s mannerisms. Slouching my way through a tram ride at the end of a long day would fit that description. My affection for lounging on a couch – any couch – is also a Bonnie trait that I cannot deny. I have a brother-in-law who jokes that Caldwell women have never met a couch they didn’t love to lie on. I spent every evening of this vacation lounging on a couch and I end most days at home that way, too.

It was fitting to be thinking about Mom. This vacation to Bald Head Island, just Patrick and me, was sort of a do-over of our just-us trip to celebrate my 50th birthday 18 months ago, almost exactly, that was interrupted by Mom’s rapid decline and swift transition into an active dying process. We stayed at the same condo and had the same low-key agenda. We had no special occasion to celebrate this time and no need to worry about Mom, either – something that I did during every trip to Bald Head Island from 2005 to 2015. But in my mind, at least, it represented a chance to make up for a vacation gone wrong and also a reason to reflect on what followed that – an intense and meaningful 10-day period spent shepherding Mom through her last days with this most dreaded disease, letting her go and celebrating her life, all the time surrounded by people I love and who love me and loved Mom.

I like to take long walks alone on the island, and I get all mushy about how pretty the maritime forest is and how relaxed I finally am or I dread an upcoming departure and I have a little cry. Last Sunday, I took a long walk and thought about Patrick telling me I looked like Mom and lamented the 10 years of vacation opportunities with Mom that Alzheimer’s stole from me and tried to imagine Mom walking with me on that perfect day. And I had a little cry.

Bereavement leave, one year late

Mom’s death occurred at a difficult time for me – not that it ever would have been a “good” time for her to pass away. But professionally, I was a wreck: Our office had lost four total staff members in the preceding several months, and I was also transitioning from one position to another, which was intended to be a promotion. Unsurprisingly, it took months for the transition to be made official. So I was trying to do my old job as well as the new one, the volume of work was as high as I had ever experienced because we were so short-staffed, and I was trying to prove myself worthy of a promotion without actually knowing exactly what that promotion would be. So let’s just say I was experiencing a tremendous amount of work-related stress.

Some may remember that she also took a very bad turn while Patrick and I were away on a vacation to celebrate my 50th birthday. We arrived at our rental on Bald Head Island, N.C., on Sunday, I got a worrisome call from the Alz center on Monday and on Tuesday, a nurse told me she might not make it through the night. We sped back to Columbus on Wednesday to find Mom stable but showing obvious signs of labored breathing. I spent most of Thursday, my 50th birthday, at Mom’s bedside until about 5 p.m., when I got a massage that Patrick had scheduled for me. That evening, I wrote the first draft of Mom’s obituary.

This year, Patrick and I entertained thoughts of returning to Bald Head Island to try again for a birthday vacation. We thought we would fly instead of drive to save time and have a shorter trip. While I was looking at flight options and finding no good options, I began to cry – not because of the frustrations with scheduling, but because I realized I didn’t really want to go. And not wanting to go to Bald Head is a very unfamiliar feeling. My interpretation of my emotional response is that I anticipated that I would be reliving much of that period of time as I approach the first anniversary of Mom’s death. And the early departure from vacation was disappointing and upsetting and frightening because I thought Mom might die before I got home. So, for now, no October visits to the island. We now have our eye on a spring trip.

I am thinking a lot about that difficult week last year, from the Tuesday (Oct. 20) I realized we needed to get home to the next Tuesday, Oct. 27, when Mom died. I don’t care that it all occurred around my 50th birthday – that created an interesting symmetry to my caregiving life. Mom was diagnosed a couple of weeks after my 40th birthday and died five days after my 50th birthday. Ten years, and 20 percent of my life – for some reason, I find meaning in that timing.

But I do regret how bad I was at taking care of myself. I finished my vacation time watching over Mom and spent two days of the following week by her side and the third just collecting myself on the day after she died. I went back to work two days after her death, at that time thinking that keeping busy would be better than being alone at home. (My brother and sister had the same experience – they missed very little work and had to travel two weekends in a row. And when Patrick’s dad died in 2013 and he struggled with taking time off of work because he would miss an important meeting, I said to him: Nothing is more important than your dad’s death. And your colleagues will understand that.) We had the memorial service on Saturday, and I returned to work on the following Monday. And it was clear to me that day, and for many days after, that I should not be at work, that I needed time to grieve and to rest. But I didn’t. I was so desperately busy – all of us in my office were swamped – and I just felt I would be consumed with guilt if I took more time off. Guilt would be worse than grief, I reasoned.

Today, one year later, we are at full staff and I’m no longer uncertain about my role in the office. That makes taking time off easier, of course. But I also have a different perspective about self-care and don’t intend to deny myself R&R again when I clearly need a break. It’s better for my health and will make me a better worker and colleague. In lieu of traveling, Patrick and I are taking a staycation today through next Tuesday. My birthday falls in the middle, but even better than that is committing to six days of letting our wants and needs dictate how we spend our time. Patrick is studying for a licensing exam and I might do some deep house cleaning. Or, I might not. It has lifted my spirits in a way I didn’t expect to schedule this time off and decline to set any expectations for myself. It’s not really bereavement time, exactly, but it is definitely put-Emily-first time. Better late than never.

Going there

If I were so inclined, I could cry five or six times a day. But I am not inclined. What a mess I’d be. I make this claim, though, because my eyes threaten to generate tears in response to a variety of stimuli: a moving radio story, cute pet photos, news of a tragic death (human or pet, which may seem ridiculous, but it’s the truth), a positive human interaction that gives me a warm feeling, my own rambling thoughts about Mom. Etc. I always stop myself, though. I kind of feel like if I let myself cry, I won’t be able to stop … at least for a long while. So I don’t go there. As my brother Jeff so aptly put it when I threatened to cry when leaving New York City last fall after our sibling visit, I suppress (it’s helpful to visualize here the lowering of hands as if pressing down on something. In this case, emotions).

I think of this as a lasting element of grieving. But I suppose it also could be that I am a middle-aged woman whose hormones are playing tricks on her. I really don’t know.

I do know that thoughts of Mom drift in and out all day, every day. I recently told a friend/co-worker about the emergency department experience we had when Mom fell and needed stitches. (That was five years ago. Seems like yesterday.) We were talking about our experiences with various medical staff – in this case, their shortcomings. I remembered the doctor was confident Mom’s stitched-up wound would heal in a cosmetically satisfying way. And that the automatic blood pressure cuff scared Mom. I can laugh when I tell these stories and she did some funny things on that day. But then I fret about how scared she must have been. And how, that long ago, she could not understand instructions or make sense of the world around her. The doctor asked if her neck hurt and she replied, “Bonnie Caldwell.” That is funny. But I shudder to think about her physical pain that resulted from that fall, and her inability to tell us what hurt.

I began writing this post on Aug. 24. Since then, two anniversaries have passed: Aug. 27, 10 months since Mom died, and Aug. 28, what would have marked seven years since she moved into the Alz center. Facebook memories from Augusts past have been full of reminders of her transition from assisted living to standard nursing home, being kicked out, and her improved mood upon moving to the Alz center. And also last August, when we had a family staycation in Columbus, and we were all together with Mom – including her two granddaughters.

The bumpiness of this post is a good representation of how I feel these days: scatterbrained, fretful, wistful, grateful, sorrowful, joyful, grumpy, peaceful.

Mostly I just wanted to check in. Mom is still a big part of my life.

Failure to launch

I think about this blog every day. I think about Mom every day. But thinking has not translated into action. For days and days, and weeks and weeks, and actually months, I have not written anything about Mom. Similarly, I didn’t do anything about Mom’s death once the memorial service was over and I returned to a new life, no longer a caregiver. I didn’t make a decision to ignore the things I needed to do. I’d call it a very serious case of avoidance: If I didn’t engage in tasks related to when Mom was alive or now that she had died, I wouldn’t have to consider how I felt about her being gone.

The activities director at the Alz center called me a few days after Mom died and asked what she should do with Mom’s belongings. They filled one bin and two garbage bags. She said she could donate them to other residents or to a local charity. I told her I wanted to see her things – mostly clothes, a few pairs of shoes, and miscellaneous trinkets that hadn’t been lifted by other residents in her seven years at the center – and then I’d return everything usable for other residents to have. Mom’s jewelry, some of her shoes, eyeglasses, stuffed animals and a variety of other items had disappeared over the years. Residents went “shopping” in others’ rooms – that’s how staff described it. (This was not theft, of course, but the result of confusion and memory loss.) So we were discouraged from having anything of value in Mom’s room. She had taken to wearing costume jewelry shortly before she moved to the Alz center from assisted living. And she was wearing glasses when she moved in. But those small and portable items went missing fairly quickly. I suspected that a replacement pair of glasses would disappear, too, or, worse, somehow cause Mom an injury. It was safer, really, to just let her go without.

I told the activities director I’d come in to get the items the following week. That would have been early November. On Feb. 8, accompanied by Patrick, I finally returned to the Alz center for the first time since Mom had died in late October. Her belongings were long gone, the staff member there at the time said, and that made perfect sense. And that means I didn’t have to go through them and think about what should go back to the residents and what didn’t merit keeping at all. Mom’s clothes were laundered so frequently that most of them were very worn. Not getting the chance to see her belongings caused me no anxiety, and potentially saved me from performing a sad task. But I did regret putting the center through the trouble. Meanwhile, I have many boxes of Mom’s belongings – mostly of sentimental value – in my basement. I haven’t gone through those, either.

While at the center, Patrick and I went to the skilled nursing section to have a short visit with Bobbi, who had led Mom’s nursing care in her last days. Bobbi put her hand on the counter and I put my hand on top of hers. “I just never came back,” I said. “It’s different for everybody,” she said. I didn’t have to explain a thing.

The same day, a Monday that Patrick and I both took off of work, we went to the funeral home to retrieve the urn containing Mom’s cremains. The director had called to ask me to take them home. After a certain amount of time, the funeral home has concerns about losing track of such things. And it really wasn’t their problem anymore. She didn’t say that, but there was no reason for the urn to stay there.

The urn is heavy. It is marble, a durable enough substance for burial. The plan is to bury the urn in a local cemetery. The funeral director had called the cemetery on behalf of my siblings and me to price out a plot. But I haven’t done anything to secure a burial site. To his credit, my brother Jeff, while in town for a music directing job, suggested we go to the cemetery to look at the possibilities. We found a stretch of a section that is open for the burial of cremated remains and stones flush to the ground. It’s a nice section with some trees. Mom liked trees. We’d like it if her final resting place could be near a tree, so we’ll see what we can do.

And then there was the bank account. I had joined Mom’s checking account about 10 years ago when she started showing signs of misunderstanding her finances. After I wrote a check for funeral costs that ran above the sum I had prepaid in 2009, the account had a balance of about $14. As the months passed and fees for a low balance were assessed, I got notices about the overdrawn account in my email. Finally, in late March, I went through the box of items from the funeral home to find a death certificate and went to the bank to close the account. The banker who helped me decided to waive some of the fees so I had to pay only $3.50 or so for letting the account become overdrawn – a kind gesture considering I had simply been negligent about closing the account. His wife’s grandmother had Alzheimer’s, he said. Maybe he took a little pity on me for that reason.

I’m kind of disgusted with myself for this behavior, this avoidance and neglect of my duties – especially since they were not really that daunting. The excuse I give myself is that I was on the hook for 10 years of caregiving, and the instant that responsibility went away, I shut down. Did things on my own time. Set my own deadlines. Had no Medicaid case worker or nurse or business manager to answer to. The thing is, the only thing that accomplished was punishing myself with more guilt. I guess I’ll never learn.

Being there

I read obituaries with some regularity. Lots of people report that a loved one died “surrounded by family” and sometimes even close friends. I did not include that tidbit in Mom’s obit. But I was there when she died. And so was Patrick. And, in a stroke of bad luck for me, so was the hospice social worker. She appropriately stepped away after giving me a small hug.

I think about Mom’s actual death, and that whole day, frequently. I had mildly complained to a hospice nurse earlier in the day that I hadn’t heard a peep from the social worker, which surprised me since Mom was actively dying. She had assessed me in two long phone conversations, so I just assumed that once the actual death was upon us, I would hear from her again. And I think it had been a kink in the system – she hadn’t been told that Mom was near the end. So she came in late on the afternoon of Oct. 27, shortly after Patrick had arrived after work. I had been there all day, save for my decision to slip away for a haircut. (It was a risk to leave for that, but I needed that haircut. And it worked out.)

It was a lonely day and a somber day, sometimes. I was focused on Mom’s breathing, wondering which inhalation would be her last one. I stared at her for hours. I chatted with people who stopped in – Alz center nurses and aides and hospice nurses, mostly. We were sort of jokey about how Mom was hanging on, doing it her way, maybe even being stubborn. I engaged in a very stupid Facebook discussion about Donald Trump – I have learned not to take the bait, but I was weak that day, and just generally worked up, so I had no tolerance for opinions counter to mine. I brought up Medicaid in the discussion, and Alzheimer’s disease. That is a regret I have about that day, that I bothered to engage someone I don’t know about a subject we will never agree on.

And then it was 5 p.m., and Patrick, the social worker and I were chatting. And Mom’s hand moved, catching my eye because she had been immobile for days. The hand above her blanket just lightly flapped, twice maybe. Her mouth opened just a little bit, and then closed. “Is that it?” I said. It had to be, I thought. We didn’t see any other signs of breathing. I think the social worker left to get a nurse. Patrick and I cried, and hugged. Why am I crying, I thought. I have been waiting for this to happen. It was inevitable. Her struggle was over. My struggle was over. But it was as involuntary as crying has ever been – there was no holding back. Nurse Bobbi, who had overseen Mom’s care, came in to confirm. Another nurse confirmed Bobbi’s confirmation, a requirement. “You stay as long as you want, for as long as you need to,” she said.

I touched Mom’s hand and kissed her face. She looked so terrible. Her skin had mottled – it looked like blood had collected in her hands. The area around her mouth and nose had turned gray. These are things that happen, I had been told. I understood that. But I confess that I am not pleased about my last view of Mom’s physical presence. It is hard to wait for a person to die and witness it. Then again, it was a privilege to be present for that. I’m glad she was not alone, even though she wouldn’t have known she was alone (I assume, anyhow). But it is such a private event in our lives, to die. Do we want people to be looking at us when we are our sickest selves? I know appearance should not, does not, matter at all. But it takes the human body some time to shut down, and what happens to the body is unfortunate, to put it mildly. So I remain torn about whether I was lucky to be there. Patrick and I didn’t feel a need to stay, to keep seeing her that way. We left rather abruptly, and no one judged. It’s just what was right for us. I had to revisit her appearance the next day, to look at a photo taken after her death at the funeral home to confirm that the correct person would be cremated. Of course, a necessary step. All that means that now, more than ever, I enjoy looking at photos of Mom to put that last view of her face out of my mind.

And after all that time, all this blogging (almost 7 years!), her death still felt so sudden. This was it? This was it. It was over. “It” being caregiving, sickness, stress, sadness, but also laughs, smiles, holding hands, hearing her say, “I love you,” taking walks, sharing root beer, her sweet tooth. Her life. After 10 years of her illness and my caregiving, she was gone. Just like that. Somehow, it felt too soon. I hadn’t had time to contemplate what it would mean for her to be gone physically. I had always assumed her final decline would be prolonged, that I would spend hours by her side over the course of weeks or even months, feeding her and trying to be a comfort to her. Instead, that period really last only one week. And, even though I have an odd and lingering sense of loss about that time not spent with her, her rapid decline was a good thing. A very good thing.

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