Monthly Archives: December 2023

Guilt and Grief–Mates for Life

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The winters are warm now.  I felt a tickle across my hand this morning while I was reading on the sofa, one dog under my legs, another dog on top—a tick in late December.  How things have changed.  I put it, alive, in a sandwich bag.  I don’t know why.

I am home now—my adult home.  I’m in my house, and I’m even enjoying myself a little bit.  I like cooking and reading and taking short rides to the store in my new car that I park at the very end of any parking lot so I can avoid little scratches and scuffs for as long as possible.  Yesterday, after a good-morning hug, I looked my husband in the eye and asked, “You didn’t buy that car just because I was sad, did you?”  or something like that.   He said no, said we needed it, and we had the budgeted for it.  My oldest stepson has taken over the stewardship of the big SUV, the one we bought ten years ago for ski trips and road trips with little kids and large dogs.  Now he’s a big kid with his own traveling to do, and that is now his car.  And so the cycle of life continues.

I was in the doldrums, alone in my dad’s apartment, when my husband told me that my stepson had gotten the job, starting this winter break, and that I should distract myself with shopping for another car.  He let me pick it—the make, model, trim, everything.  I won’t say I went directly to the most loaded model available.  I’ll say that, in increments, my husband encouraged the journey.  I’m a car person, and he’s not.  I’m vain, and he’s not.  It didn’t take long to get me into a sport-touring model with black trim and leather seats and a heated steering wheel despite the warm winters ahead.  It has a paint-job that looks flat on a cloudy day, but in the sun, you can see a million little gold sparkles.  Yes, we had talked about getting another car.  We knew that one of the kids would eventually need a car.  But we could have paid cash for a used Civic with 100,000 miles on it and gotten that job done.  No, I suspect this car is also my distraction from grief.

I am fortunate to have such distractions.  I work at a college, so I am “fortunate” to have had the time to spend with my Dad over a winter break.  My husband has the ability to work from anywhere, so we were “privileged” to be able to spend two weeks with Dad who was fighting to stay alive while also fighting to die.  He picked a good time for it, I suppose.    

The subconscious will to survive, I believe, is quite strong.  Dad’s still fighting both battles.  I’m not there, but he still is, in that beige room with the fluorescent light that doesn’t work, and the roommate asking through the curtain divider if we have any snacks on us.  The roommate, apparently, ended up in the skilled nursing cycle of hell because his home care person tried to poison him.  So much drama.  I could write a book about that awful place. It would begin ten years ago, when my old friend’s sister was a floor nurse there.  She drank a bottle of vodka one evening, came to work, shot a patient dead and then shot herself.  She never should have gone into nursing, not with her temperament.  I feel too much, and Dad knew it, and that’s why he never discussed his DNR with me, or his suicide pact with his brother that never came to fruition.  I know why my friend’s sister did what she did.

I’ll get to take advantage of my swell schedule again real soon when I go back up there to help my brother clear out Dad’s apartment.  He told the landlord, an old family friend, yesterday that Dad would not be coming back, and he paid the rent forward two months.  That’s one of the things that really stings about imminent death—walking into someone’s home and seeing their stuff as they left it, knowing they will never return to use it.  I experienced that with Mom, and it hit me hard, looking at her shoes that she would never put on her feet again.  When it was Dad’s turn, I somewhat more prepared for the punch.  I walked into his place two weeks ago after my first visit with him in the hospital, had a little cry, and then dismissed the grief.  You can’t.  You just can’t embrace grief while your loved one is still fighting that primordial battle to stay alive, despite DNRs and suicide pacts. 

Dad’s still alive.  I’m not there.  This isn’t how I wanted things to go. 

Bring on the morphine.

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I’m home now, and I have the privilege of spending this day doing whatever random shit I feel like doing.  I ate some pasta for breakfast. I started to dismantle my garden.  Winter is finally here.  I told my Early Girl that I was proud of it because it still had a little life left in there, in the stem and the roots.  That one was the only tomato that I intentionally planted that survived the season.  I concluded the season cultivating whatever random tomato varieties presented themselves from the compost in the soil.  Nature gifted us with hundreds of sweet little pear tomatoes, sprung from the seeds of some supermarket tomato that didn’t make it onto our plates but did make it into the compost.  I talked to my nearly-dead tomatoes and my dead eggplants and peppers and I cried a little in between.  I think I’m going to need to seek some therapy.  I’ve avoided it for a long time, but this grief has compounded over these past two weeks, and I’m numb.  And I’m acting weird.  Something in there is broken.

We left town yesterday, my hubby and I.  Left my brother to witness the very end.  It was selfish of me to leave, but I wanted to leave so badly that all I could think about to keep me from breaking down all day was how great it was gonna feel to be in my cluttered, dirty house with my dogs and my own stuff.  My own messes in my own home.  Yesterday was a turning point at the “skilled nursing facility.”  The 23 year-old floor manager who’s probably at her first job out of college because she can’t deviate from a script popped into Dad’s cubicle to tell me they wanted to schedule all this shit—put him back on an IV, take him to the hospital to have some “suspicious node” in his lung checked out, bloodwork, etc.  My husband asked her what the end goal of the hospital visit was, and she responded in all seriousness, “to check to make sure the node isn’t cancerous,” like looking for lung cancer is a priority at this stage in his decline.  I reminded her that Dad had a DNR order, and that it stated that he didn’t want IV fluids.  I also told her Dad didn’t need to go to the hospital to look for lung cancer.  I then called my brother because it’s hard to tell a 23 year-old that she cannot give your dehydrated father IV fluids to sustain his now miserable existence. 

My brother was, of course, pissed that these procedures were even suggested because he had discussed the DNR orders days ago with someone else. 

“Tell her we have a POA on file and a DNR with explicit instructions.  And we can scratch the hospital visits.  We can deal with a suspicious node if he ever snaps out of this.  In the meantime, not a priority.”  

So the befuddled floor manager came back with the beautiful nurse practitioner who I am pretty certain my brother has a giant crush on, and she started asking ME the heavy questions—do I authorize no hospital visits, no trips to the ER, no fluids, no tubes, no CPR?  What the actual fuck is this place?  I didn’t have power-of-attorney.  Legally, I was just a visitor.  I could have authorized any invasive and unnecessary procedure that they threw at me by virtue of being a person in the room.   I’ll bet that my Dad’s friend Jimmy who was in town visiting from Iowa could have authorized it if he happened to be there when the floor manager came by.  

Luckily, my sister-in-law walked in the door at that moment and explained Dad’s predicament very clearly—IVs are only a short-term fix; he doesn’t WANT to get better.  He stopped eating weeks ago when he was much more cognizant of his surroundings.  Basically, he WANTS to die, and we’re going to grant him his wish.  No emergency trips to the ER, no scheduled hospital visits or MRIs, no IV, no resuscitation.  This was HIS decision.

The DNR was Dad’s decision that he put in writing in 1997, long before he had experienced the nursing home circle of hell with my grandmother.  After that, he set up his power of attorney.  He even had a pseudo pact with my uncle that one would kill the other before either one of them ended up in a nursing home.  His biggest nightmare is happening RIGHT NOW, and he just wants out.  Bring on the morphine.  Helping him die comfortably on heavy drugs to numb the pain is the only positive thing that this shithole of a care facility can do for him.  These people can’t even find his pants in his closet.  They put him out in the hall, pantsless, with pneumonia.  This den of incompetence is NEVER going to rehabilitate him, so instead of hurling him into the insurance wood-chipper—transporting him around to useless doctors’ appointments and putting him on an IV every other day just to keep him alive until Medicare can drain all of his assets—it’s going to give him his dying wish.  Enforcing his DNR is all the power we have, and it’s going to this end this nightmare for all of us.

On my way out the door yesterday, while Dad was once again talking the air and trying to get his legs over the side of the bed in a weak attempt to escape, I said, “I love you,” and he replied, “Love you.”  Those are some fine last words, I think.  I, of course, have a lot of regrets about how I handled this ordeal.  I’ll discuss them another time.  I’m fine concluding today’s thoughts with the best last words you can hear from someone—I love you.

The Industry of Dying

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It’s my second-to-last night in town.  I’ve been dreaming of getting out of Dodge.  Tomorrow, my husband returns.  We straighten out the Christmas gift situation (I had left most of the stuff I bought for people back at our house) and get it all wrapped to leave behind for the nieces and nephews and brothers and sisters-in-law who will be in town or coming through town before I’m back again.  I don’t know why the middle brother is planning to show up the last week in December.  He’s delusional if he thinks Dad will be alive by then.  Personally, I think he’s just comfortable letting our oldest brother handle the situation.  If Dad dies before December 27th or whenever he plans to show up, middle brother can be sad and nostalgic about it, but he won’t have to have witnessed the very last, ugly days.  He will have been spared the pain of watching his father slowly die, and in a most undignified manner, surrounded by burned-out strangers who won’t even bother to clean him or provide him with the most basic of services—cleaning the infected area around his catheter, wiping the gunk out of his red, swollen eyes, brushing the old food out of his mustache, checking his diaper.  If that brother-who-gets-off-easy thinks trips to Dad’s private room in the hospital three weeks ago were taxing, he’ll be able to sleep well having missed out on this travesty.

And I think I kinda hate him for that, even though I probably won’t be around to see Dad’s very last, ugly days myself—when you don’t live in town, you can’t always stay in town.  But I wanted to be with him when he took his last breath, like I had been with Mom.  Mom got to die at home with me and Dad and a few hospice nurses to help her along.  Her death took five days and nights of stress and grief and hell, but it was intimate.  Dad’s death will not be.  Two weeks ago, before Dad was shipped off to this penitentiary that we can’t bust him out to put him in the living room if we wanted to, I watched him sleeping, and I was reminded of Mom, and I thought, “You can go now. Why don’t you go now?”  Come to find out, death is not that easy. And come to find out, I am not that tough. I’ve spent two weeks here, sleeping in his apartment, looking at his things, and visiting him every day in a place that puts my stomach in knots to even think about going into. Yes, my husband is coming for me tomorrow, and I selfishly want to get out of Dodge. But what does that mean? Does that mean that tomorrow, or the next morning, when I look at Dad is his bed, and listen to him speak, no matter what he is saying, that will be the last time I see him and hear him alive? That gives me pause. I think there are going to be some very very difficult months ahead for my mental health. These aren’t easy decisions.

Middle brother didn’t get away entirely free.  Apparently, Dad laid into him, and only him, about the betrayal that he felt when he realized he was stuck there in that hospital.  Dad yelled at him, “You betrayed me.”  He literally said that.  Middle brother must have made him some big promises, bigger than our conservative older brother would be willing to make in good conscience.   Cuz he ain’t telling us we betrayed him, and we’re witnesses to the biggest indignities of his life.  Both brothers made Dad promises that I was unaware of—Dad was worried I wouldn’t have the guts to pull the plug.  I would have been the first if I’d been given that option over seeing his rapid decline in the past two weeks.  But Dad is now in “the system.”  Big brother has power of attorney and DNR that we all discussed last night, Middle B on speaker.  It says that he wants no IV hydration or tube-feeding should be in a place of no-return.  The big question was, IS he in place of no return?  His neurologist says that with proper nutrition, hydration, he could possibly get his mind back in a couple of months… and THEN what?  He’ll be cognizant of the nursing home that’s bleeding him dry?  No.  We three, unanimously, decided that if Dad doesn’t want to eat, and Dad doesn’t want artificial hydration, then we should honor that.  It’s the only power we have left.  We can’t make his care get better.  We tried that.  But we can make it end faster. 

In a better health-care situation—where problems, when identified, are addressed immediately, and where patients are surrounded by well-paid advocates who can make decisions for them that aren’t influenced by middle-men or bureaucratic roadblocks—in that situation we’d keep going.  In THIS situation, it’s better to die as soon as possible.

Coping Mechanisms for the Middle-Aged.

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My husband and I are staying at my Dad’s place during this marathon of unpleasant experiences.  It’s not the most romantical of settings.  I had insisted to my husband to just stay home and that I was just fine being here at Dad’s by myself, but he ignored me and came anyway.  Good thing.  I can allow this man’s eccentricities to entertain me, and I can feel at home in his presence.  On his way back to Dad’s place a few days ago, he went into record-hunting mode—that’s his latest obsession since his dad bought him a turntable for Father’s Day—and found a store that sells vinyl in some small town en route to my childhood home and distracted himself there for awhile, reliving his own particular childhood.  Today, he found another record store, and we both went, and I got some used Donna Summers and some Pink Floyd.  I think he got an Ozzy record.  He chastised himself several hours later, when I told him to grab Loretta Lynn if he ever sees her records, because he had been looking at a copy of Coal Miner’s Daughter and didn’t buy it.  He was getting real hard on himself, and that made me laugh—the absurdity of it all.  The very least of either of our worries is why my husband didn’t grab the Loretta Lynn record before I had even told him I wanted one.  He has a handful of oddities and work-arounds.  Those are the some of his most fascinating features.  And he’s HERE, supporting me through another parent crisis.  No one voluntary spends time in a nursing home unless it’s absolutely necessary, and I believe he thinks it is, which means that he thinks family is worthy of any sacrifice.  And if he believes that, then he is really on to something.  Why deprive ourselves, then, of some small pleasures along Misery Road, like buying an Ozzy record?  Seems a decent way to stay sane, right? 

I, myself, took advantage of a discount warehouse and refreshed my active workout gear.  Bargains are intoxicating.  A Donna Summers record for $3 and a North Face sweatshirt  for ten?  I’d call that a good day in the realm of disbelief and avoidance.  I forget what my husband asked me, but it had something to do with my holding up or self-care or something.  Without a second thought, I declared that I was simply on auto-pilot.  I realize that I am not allowing all of my emotions to reveal themselves right now.  I can shut some down when I need to, and I don’t want anyone who can’t do that invading my space or coming to visit Dad.  We are the adults now, in this situation.  We are the parents.  We can’t afford to break down and lose our shit in public.   Sometimes I think the sanest and sharpest I’ve even been has been during times of crisis.

Approaching your end without the prospect of assisted suicide.

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My brother and my husband and I have told each other more than once, more than twice these past few days, that we just want Dad to die.  It sounds so cold to put it in writing, but we are faced with some serious odds, not only for Dad’s survival, but for his quality of life should he survive.  Let me rephrase that thought—we just want Dad to die with dignity, before all of it is stripped from him.  He has a gaping wound above his anus (from sitting in a hospital bed for three weeks) that is infected.  He has fluid in his brain that is making him incoherent and crazy.  He talks to people who aren’t there.  He curses.   He fusses with his sheets and his blankets and bares his skinny legs and sometimes a lot more than that.  He refuses to eat. 

We’re waiting on an appointment with the neurologist next week to determine if he is fit for a shunt in his brain, a surgery that will allow the fluids to drain to his abdomen.  He might be more clear-headed after that.  He might not be.  All of these things we are waiting on are not things that should be waited on.  They are things that must be dealt with NOW.  But how to do that when insurance and hospital and health care protocol take time.  Dad is cycling through a bureaucracy within an already strained rural health care system.  The odds are against him.  His family doctor is two doors down from his house, but his family doctor didn’t seem up to speed on the devastating effects of UTIs in the elderly.  Weeks and tests went by.  Finally, my brother took him to the ER, the only 24/7 ER within miles and miles these days (Our nearby country hospital had been bought out and shut down a few years ago).  He spent three days in that ER before they could get him to a room and dedicated doctor.  Three more days with a UTI that he probably had for a month.  Days and days of doing nothing brought him down.  Days and days of waiting for help brought him even lower.  And now we’re waiting on a neurologist who isn’t available for another week, while fluid continues to press on his brain and give him epic headaches and make him talk to people who aren’t there.  His wound specialist, who inspected his wound today, will send directives tomorrow.  We must wait another 24 hours.  We ring the buzzer in his room and no one comes.  The nurses and the CNAs look exhausted and defensive.  Might as well be waiting on Santa Claus. 

He asked for his pistol yesterday.  He has asked my brothers and I to shoot him.  “One bullet,” he keeps saying.  He grabs my hand and points it at his temple.  This should be his right.  If assisted suicide were legal in this country, places like this shithole where twenty-somethings change his diaper would not exist.  At least they wouldn’t exist in the state they are in—fluorescent lights, cheap furniture, cheerless “game rooms” where the elderly sit like baby birds in their wheelchairs, waiting for their meals to be placed in front of them at 4:30 in the afternoon.  People asking for help and being ignored.  You can have all this if you’ve got the right insurance.  Dad gets a narrow bed by the wall, and his roommate gets a window.  If Dad doesn’t start showing progress in his rehab, which—at this pace—how can he, the insurance will stop paying, and it will be on us.  $8000 a month—a mortgage on a million-dollar home—for the privilege of a dreary bed by the wall and a roommate who leaves his TV on all night and exhausted CNAs who ignore the buzzer.

My brother and I discuss how short life is now, how we could be in this state in a few, short decades.  A decade goes by so fast.  I can see that his tending to my father for over a month, day and night, is taking its toll.  He’s a changed man now, a different man from the one he was last month.  I can already see those lifelong protective layers of caution and indecision and moderation slipping off of him.  Who knows who he will be in a year.  Perhaps we’ll all go skydiving.   

I’ve Said Goodbye to the Forties. Now what?

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I’m 52.  The forties are now in my past, and this blog still exists.  I suppose I’ll have to change the title of it and its intent because I don’t really want to shut it down.  This blog was an outlet for me when my mom was dying, and at other times.  I think it can be an outlet again as I face another epic ending, this time my of father.  No, he’s not gone yet, but people don’t live forever, and he’s 84 and breaking our hearts slowly.

But before I get to Dad.  Let’s recap the forties, or what I remember of it sitting here with a case of COVID for the first time since that pandemic came and went, unable to visit my father in the hospital because I might be contagious, wondering how many others out there unknowingly and knowingly just ignore the virus as a common cold and get on with their lives.  Quarantining feels soooo 2021.

Anyway, my forties.  Let’s see… 

I spent an entire decade of my life with one man.  That was a first. 

I spent an entire decade NOT utterly miserable—I found a job I could enjoy, I got on meds, I even went dry for a period.  The forties might have started out a little precarious, as unmedicated me was always precarious, but the majority of those years were spent in a manageable mood thanks to 10- 60 daily mgs of Fluoxetine. 

I spent almost the entirety of my forties in one house.  I guess I settled down.  The kids grew up.  We took vacations.  We remodeled a few times.  Our income and our savings slowly grew.

I lost a mother.

I lost a dog.

I got another dog.

I took two cruises.  I swam with sea turtles. I traveled abroad alone.

I feel like I should have more to say here, but I guess I’m just not interested in my forties at the moment.  What’s behind me is a tool for perspective and growth when I need it to be.  I will not dwell; I will not spend an inordinate amount of time feeling regret.  I’m too aware of the world and how things work now.  I know shit gets messy.  I know shit is unfair. 

That said, my fifties are shaping up to be something quite different from my forties.  I never had a plan or a vision for any decade over 40.  Thus far, this one has been marked by the legalization of cannabis and the regular consumption of it.  It’s also been characterized by lots and lots of alone time—my husband travels nearly every week for his job.  I still haven’t figured out what to do with myself during these alone times.  Too often, I spend them drinking (Yes, that old friend is still around.) and then regretting time wasted of an already too short life.  It’s my pattern—I waste time, and then I lament wasting time over and over again.  That MIGHT be the only consistency in my life, come to think of it.

But my fifties are also marked by a certain comfort in my skin based on the fact that I only have a few, short decades left on this earth.  IF I am lucky.  My brother and I, killing time as we watch our father die and cynically wait for answers, discuss how quickly ten or twenty years can pass. Maybe thirty, if we’re lucky.  I don’t expect to live past my eighties.  My liver is already eighty.  But I will welcome every day of cognizance that I have until the day I no longer have it.  Hopefully, by then, assisted suicide will be legal it the U.S., and our loved ones and ourselves won’t have to suffer the indignities of NOT BEING ALLOWED TO DIE.  More on that later.