Tag Archives: hospice

Guilt and Grief–Mates for Life

Uncategorized, , , , , , , , ,

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.

Uncategorized, , , , , , , , , , , , , , ,

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.

And So It Goes…

40s are the new 40s, Aging Parents, cancer, feeling old, generation x, loss of a parent, Reflections, Uncategorized, , , , , , ,

It’s November 5, 2017. My mother died on October 24, 2017, almost two weeks ago. I had the privilege of seeing her last breath. I used to count them—thirteen per minute, twelve per minute, nine per minute, one… That was the one. I stayed up most nights, as my two most recent entries reveal. I doubted myself. I went limp with fear when she woke up one morning at 2:00 a.m. and vomited her green, cancer-corrupted bile all over herself. I’m not a nurse, but I did my best.

The day she went, I went off on my family for acting casual as her corpse rested in the living room in front of the picture window. I stared at her hands before the funeral home director came to get her and put her in the back of a black, Chrysler minivan. I stared at her hands. My dad thought I wanted her to be there forever, so he waited to call the funeral home director; but I was, in truth, ready for her body to leave that house as soon as it could, as soon as we all had had our time, and BEFORE we started looking at pictures, writing obituaries, and getting tanked.

In short, her death marked a new kind of beginning—a week of family and friends and throwing myself into printing posters and making picture collages of her life. I seemed ok. My ex-boyfriend came the viewing and told me how together I seemed to be. I guess that’s how it works. Grief. It’s a tricky emotion. I’ll write an entry some time about those triggers. But first, I want to do something I never do and share the pieces of blog entries that I had started and couldn’t finish throughout this process. My computer notes the date and time of every one. I’m going to post them here, as is, without any editing and only the working title and time that I had written them. Those times were traumatic, but  worth sharing:

“Stuff around the house that Mom left unfinished last week,” October 21, 7:16 p.m.

 

A copy of Mary Alice Monroe’s Swimming Lessons, bookmarked at page 176.

A box of Sea Salt & Turbinado Sugar Dark Chocolate Almonds.

A thousand-piece jigsaw puzzle of a cat on a windowsill.

Three recorded episodes of The Bold and the Beautiful.

A bag of jellybeans.

Half a bottle of Ensure.
“I’m learning a few things on this journey,” October 21, 9:14 p.m.

Everything does and will remind me of Mom.

How to turn a patient in bed. I’m shitty at it.

How to check a patient to make sure he/she is cleanly and has no bed sores. I’m shitty at it.

Nurses and nurses aides are people I live for.

 

“CouldaShouldaWouldas,” October 21, 11:10 p.m.

Coulda, shoulda, wouldas seem to be common themes that travel around with death like barnacles on a rotting ship. They have tried to creep into my already infected consciousness this week, especially after I checked my mother’s Facebook status and noticed that she had reposted quite a few memes on October 17, the day before I decided I needed to tell her what she needed to know via Facebook Messenger. My final thoughts will be forever unopened, as my father and I plan to shut down the account.

That’s sad, sure, but that’s not nearly as sad as, well, everything else—loss, grief, a sense of tragedy, unfinished jigsaw puzzles and a her jacket still hanging off of the back of a chair. I imperfectly folded my parents’ laundry recently and haphazardly shoved it into drawers like I always do when someone puts me in charge of laundry, and I thought, “Man, Mom is gonna have a fit when she opens up these drawers and sees this.” Then I realized that Mom’s would never have the chance to scold me for not intuiting correctly which drawers certain fabrics belonged in and such. She spent a good deal of time during her comparatively lucid state on Wednesday fretting about how well my niece had cleaned the tile floors, “Had she steamed them or just swiffered them?” I told her the floors glistened. She’s never gonna see those floors again, so what’s a little lie?

 

“Every profession has its heroes,” October 23, 12:17 a.m.

Every profession has its heroes, people who were born to do the job. In fields of wellness and education, these heroes can make a significant difference. If I could gauge my performance by student feedback, I might determine that I have hero potential in my branch of education. Where there’s potential, there’s fulfillment. I will stick with teaching. Had I chosen to become a home health aide or a nurse, however, I would not have had hero potential. Nope.

All the love in the world can’t seem to guide me in my awkward attempts to turn my mother from her side to her back, and again to her side. The nurses and the aides tell me this is crucial. My pained mother who will spend her last moments in a hospital bed also indicates to me that this is crucial. Bedsores are the enemy. Discomfort and itchiness are major enemies as well. But I can’t do it. I’m a health care flunky when it comes to rolling that pad thing and shimmying it under the body and crossing the legs and then rolling it out and again, and I don’t what else. I feel like a failure. Tonight, I smoked a butt from the ashtray (ran out of smokes), woke my mom to give her some morphine oil, which she hates, and cried up a storm while I waited for the morphine to kick in. All so I could get up the courage to turn her on her side.

I wasn’t successful. I lowered the bed like her aide had showed me. I flattened her out and crossed her arms and rolled that stupid pad thing.   Then I wondered if I was rolling it from the correct side. Then I determined I wouldn’t roll, but I would just shift her body sideways with the pad thing. I don’t need to go any further. I caused my mom unnecessary discomfort in the last hours of her life on earth.

 

 

 

Death on a Budget

40s are the new 40s, Addiction, Aging Parents, Uncategorized, , , , , , , , , , , , ,

Despite my well-intended delusions of gallantry, staying awake for two nights in a row just made me a useless, hot mess. And taking a nip or two from the bottle of bourbon in the kitchen during these sleepless marathons made me even more useless. So tonight I eschewed the alcohol, bought a pack of cigarettes, and let Dad propose taking half-night shifts. For four hours, I slept well, even with strange dreams of hiding myself and a bunch of children in secret compartments under furniture in order to escape some kind of unearthly menace in female form with an army of fugitive-sniffing cats. That’s a new one. I should be keeping a dream log as well as a death log.

When I left the warm bed to take my 2:00 a.m. shift, I found Dad sleeping on the couch. Just dozing, he said. Just dozing under a comfy quilt. Let’s face it, we’re not RNs or home health aides. We’re tired family members who crave our beds, with or without apocalyptic nightmares.

Mom asked my sister-in-law what happened to the local hospice facility where my grandmother had died twenty years ago. I think she had envisioned herself staying there when the time came and not in the middle of her living room being cared for, largely, by tired family members. Apparently, our local hospice facility had been shut down because it wasn’t “feasible,” its staff of PAs, RNs, and aides turned into traveling pill peddlers instead.   It’s a sinisterly brilliant way to cut corners. The professional caregivers get to keep their jobs, and the operating costs disappear. Now we have a solution that’s “feasible” because the dying can still receive their care twenty-four-seven, but in the comfort of their own homes. Oh joy.

Here’s where the plan gets more brilliant: our loved-ones definitely can receive care twenty-four-seven. Whenever we make the phone call to the emergency number on the whiteboard magnetted to our refrigerators, our questions and concerns are relayed to a nurse on call, who will call us back and answer our questions. Sometimes, if we sound sad enough, she’ll even offer to come out to the house for an hour or two—even more if we want. If we don’t call, however, we get a daily visit from a nurse (on weekdays), and a daily visit from an aide who will do the yucky stuff like bathe and change catheter bags. In a rural area like this one, where people spend their wholes lives NOT asking questions, removing the whole hospice facility from the equation is most certainly a feasible plan.

I decided that I prefer the 2:00 a.m. to whenever-Dad-wakes-up-again shift because it’s a perfect time to call that hotline and ask questions without Dad knowing I’m calling the hotline and asking questions. The very first hospice nurse I met this week stayed at our house for six hours so Dad and I could go out to dinner for his birthday. We were only gone for three, but she stuck around long after and helped Mom and counseled me. Dad, being Dad, just wanted her to leave. Me, being me, wanted the help and guidance. Why not? If a hospice is going to close down its facility and leave all the dirty work to us, we should accept as much of that help as it will provide.  We should not accept the death-on-a-budget excuse.

The nurses know this. The whiteboard on the fridge says “for emergencies call,” leaving it up the caller to determine the scope of an emergency. Luckily, I was counseled by a hospice nurse before I had even seen this semantic deterrent. Call any time, she said. No question is a stupid question, she said. That’s what we’re here for, she said. So I do, and I will, just not when Dad knows I’m doing it.

It isn’t that Dad doesn’t care. He cares a whole lot. His love is infinite. This morning, the RN assigned to our case watched him interact with her and said, “They clearly love each other. It’s adorable.” It was adorable, five weeks ago, now it’s very heartbreaking. The man needs two shoulder operations. He has a bad back. He carries around his own, permanent, catheter bag. And he just lost his brother. This is too much for him. He isn’t healthy enough, physically, mentally, or emotionally to be caring for a wife of fifty-five years round-the-clock. He needs a place where he can go that’s away from his grief, like his home. Oh wait, his home is now a makeshift hospice.

If I can do anything around here besides be in the way, and I often feel like I’m in the way, I can call in the professionals to help Mom instead of leaving Dad to do all the guesswork. I’m confused, and I’m younger, healthier, and more alert. I can’t imagine how he manages to do anything, let alone almost everything. I’m gonna keep calling that number because it helps and because I refuse the let “feasibility” and bottom-line win here.

Tiny Windows of Time

40s are the new 40s, Aging Parents, Uncategorized, , , , , , ,

I’m on Mom watch tonight. My dad thinks I’m going to wake him up at 3:00 a.m. so we can split the shift, but I’m not. I’ve determined that he is more handy during the day, while I sleep in my mother’s king-sized bed with all the windows open, sunlight and the sounds and smells of a rural fall day streaming in. I’m a good day sleeper. Dad, I have determined since I arrived home yesterday, needs a full night’s sleep more than I do.

He’s brilliant with her. I don’t know how he does it. Love, I suppose. My poor brother showed up this evening around six o’clock to catch her waking up from a four-hour doze, and she told him to stay away from her blinds. There had been talk of my brother’s changing out the blinds for more functional ones. Since her hospital bed sits in front of the big bay window in my parents’ living room, my father, at one point in the many stages of helplessness family members experience in the face of terminal illness, thought new blinds would do the trick, and he recruited my brother to do the job. After learning of this plan, the blinds became my mother’s point of reference any time she saw my brother’s face. Then Mom thought we were all sitting around her bedside in the morning, rather than at dinnertime, so she asked my brother why he had showed up in the early morning. It came out like this:

“Why are you here so early in the morning? Are you here to watch me croak or something?”

She never minced words in reality; she doesn’t mince them in terminal illness, either. Dad eventually convinced her it was evening, but she continued to press my brother about his presence in the room until Dad quipped, “We’re all here to give you a bath, all three of us.” Until she realized he was busting her ass, just like he always does, Mom didn’t give my poor brother a break.

My brother doesn’t know what to do any more than any of us. Dad has the most experience caring for Mom, but her symptoms change rapidly, hourly, in hospice. Nurses who know the most about what is happening come around once in a while and take charge and sometimes provide useful advice, but then one hour lapses into the other, and Dad and I begin to bicker about how we’ve interpreted that advice. Dad often won’t accept my interpretation.

I feel like I’m in the way. Mom wakes up from time-to-time, and I try to give her medicine (ahem, morphine), and she tells me to go back to bed, that I’m making her nervous. She’s not used to 24-hour vigilance. She just wants to die.

My friend who recently lost her mother in at-home hospice told me to tell Mom what I wanted to tell her and do it as soon as possible. Turns out that the best time was any day prior to yesterday, when I arrived here. I wasn’t expecting to see what I saw. Dad had never said the word “hospice” when I’d called him. Two weeks ago, she’d been a different woman, reading and checking out Facebook and fretting about the state of the sheets in the spare bedroom or the laundry, basically being a sicker version of her usual self. She still hadn’t tried chemo, and we all still had a little hope. My father hadn’t been forthright about how rapidly she was declining, I think because he was too busy caring for her in ways that his own frail body couldn’t sustain.

She was still tinkering around a little with her tablet early yesterday, before I arrived, which means she was tinkering around on Facebook. Last night, when I cried to the hospice nurse about how difficult it would be to tell her what I wanted to tell her because of her hearing loss, she said, “Write it. Make the font really big and say it on her tablet.” So, as I sat around on Mom duty in the wee early morning hours of yesterday, and I opened up Facebook messenger, and I said what I wanted to say. Too bad she hasn’t picked up her tablet since yesterday, and she probably never will again. That tiny window of time, while I was dragging my feet to get out the door because I didn’t want to face what I had to face, had closed quietly.