Tag Archives: medicaid

Really, Truly, Looking at Death

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Some reps for a solar company came to our house two nights ago and presented us with a breakdown of the benefits of going solar.  I had so many questions that these guys couldn’t answer.  Solar is so new.  When the main guy told us that our system would be guaranteed for twenty-five years, and that each system tended to break down after thirty, I asked him about the game plan for replacing a system:  would it be cheaper, since there was already a system in place?  He did not know the answer because there is very little data out there for thirty-year-old solar systems.  Then my husband interjected, “We’ll be in our eighties when that happens, so…” So we’ll be close to cashing out on our lifetimes by then–I believe he was implying with the unfinished sentence.  Shit.

I have fewer years left than what I’ve already lived.  There’s a thought that I didn’t dwell on in my glorious forties.  When you’re in your forties, you think you’re about halfway there. Even when you are forty-nine, you still think you’re at the halfway mark.  When the number rolls over into fifty, you KNOW, you FUCKING KNOW, that you aren’t making it to 100.  Well, I know I’m not making to 100, and neither is my husband.  I’m not aware of any heavy smokers or heavy drinkers who have passed that threshold; but hey, if you can reverse diabetes through diet and lifestyle, perhaps you can reverse liver disease and lung corruption. 

And then there’s that woman in the trance years ago who told me how long I would live, but I will not commit that number to print.  I’ve been fooled by that sorcery before– when I was twelve or thirteen, my sister-in-law asked some deadbeat to give me a reading.  NONE of the shit this woman predicted happened, not even close.  I just spent the next ten years of my life wondering.  She looked at me, and she knew I was smart, so she gave me a future that she envisioned for a smart kid with the prospect of going to college.  It was ridiculous—public speaking, a lab coat, several children.  This woman clearly had no idea how the white-collar world conducted its affairs or who I was.  So no.  I will not commit to a number thrown out there by a clairvoyant.  But, realistically, I’m not making it to 100.

What am I getting at with this, exactly?  I believe that with the passing of my father—an event that I have still not acknowledged on many levels—I have crossed the threshold into their world.  I am now among the oldies; and us oldies handle this shit in very, very different ways.  I am fortunate to have friends of the same age who deal with aging very differently—some were mentally in their fifties before they graduated college.  Some, like me, burned through a few relationships and careers before they found themselves.  Others have had vaginal rejuvenations, boob lifts, and Botox shots.  I’m in some category for women who didn’t expect to ever be fifty, and then one day, there we were.  Intuitively, I knew I would have to face the deaths of my parents one day.  Intuitively, I knew I would be an “oldie” someday—I see the grays coming in—but mentally, I’m not ready for this. 

I’m not ready to make a decision about going solar that will live on past my existence on this earth.  I like the idea of setting this house up for future residents.  Isn’t that nice?  Thinking forward into the future of our kids’ generation and our grandkids’ generation sure is nice.  But, unfortunately, we oldies have to live for the now and the immediate.  We have to secure our long-term care insurance and save for our retirements and make sure we don’t end up where our parents and our grandparents did in those last, demoralizing days.  I say this with all the bravado of a woman who has just witnessed the indignities of “skilled nursing” facilities.  Dad probably had a similar reckoning back when Grandma was carrying around a child’s baby doll and crying at reminders of her real self.  This will not be my future, but this just might be my future.  

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.

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.