Death – the alternate reality
“Lorazepam.”
That word rattled my brain and took me right back to my Mom’s death in 2021.
I tried to snap back into the present moment, as I was in the middle of a visit with a dying friend. She apologized for her mental fog.
“I hate the meds…they make me so fuzzy…but it helps. Something with an L…”
A family member sitting nearby said, “Lorazepam,” and explained it helped calm my friend’s agitation.
I remembered the drug, and knew the emotional place they were in — the concern about: “Should you give it?” …”How much?”…”How often?”…”Is it too soon?”… “Am I causing harm?”
There’s no question that modern hospice practices are a blessing for the dying and their family. But the dying process itself has its own struggles. After a lifetime of always focusing on healing someone, now you have to wrap your head around helping them die. We spend our lives encouraging our sick family members to eat, take vitamins, and see the doctor. Then at the end, you have to do a rapid reversal and stop giving food, ease off liquids, and stifle every impulse to offer a medical intervention. It’s the right thing to do, but it goes against every instinct we’ve been trained to follow, and it’s even harder if you’ve spent your life as a medical professional trying to heal people.
As I walked back to my car, the word Lorazepam pounded in my brain. Yes. That was the first hospice medication I had to administer to my Mother as she was dying.
It all came back as if it were yesterday. Mom’s discomfort. The meds. Her prayer in her semi-conscious state:
“Help me, Mother Angelica…”
***
Can you hold the pain from a lifetime of emotional distance and hurt, along with your empathy and love for that person, and care for them as they die?
The shit-show
Maybe it was in keeping with the hand that life dealt my Mother that her death process was doomed to be difficult. In terms of getting much assistance from her local hospice, it was a shit-show from the start, even though it wasn’t their fault.
Through it all, anger would fester in the back of my mind — Dad got wonderful care in a peaceful Pennsylvania facility even as he treated the nurse like crap. But for Mom, now living in Virginia, she was yet again getting the short end of the stick.
There was no designated hospice facility in her area — they would just arrange to place you in a small group home or nursing home. On that Friday, there was also no home help or registered nurse available to get any arrangements started for a move. Hospice promised, “Someone…soon,” but that was not to be.
The best we got was the box of medications for us to give her, even as we had no idea of what we were doing. Oh, and a bunch of legal forms to fill out…to prove we weren’t taking her meds?
It wasn’t really any one person’s fault. It was a few days before Christmas, nursing homes and home-health companies were already on reduced staff, and, being winter, some employees were out sick. The back-up staff was from another county — so they were trying to manage two areas at once; they couldn’t make arrangements for anything in Mom’s area, and…Mom’s decline came on rapidly. It was absolutely the worst weekend to die.
Despite all of that, a couple of kind, on-call LPNs responded to us. They heroically did what they could to get care instructions to us from an RN, and to arrange a home-health visit in the next day or so. But almost to the very end, for better or worse, Mom’s care would be mostly in our hands.
Yes, a couple of us had medical backgrounds — but not for this. And yes, we were determined to give her our very best. But it is also a special form of hell to have to rapidly learn how to “birth a good death” for the woman who carried you in her body, and gave birth to you. This wasn’t just anyone…this was “Mommy”…and Mommy was primal. All I could think of was, “For once in her damned life, couldn’t she get a break?”
She spent her life — 60 years of marriage — abused by my Dad — and I have often wondered just how early in their relationship that started. Within 5 years she had 4 pregnancies, and lost her first child, who was stillborn. While she got to carry him within, she never got to hold him, see him, or say goodbye.
She had an alcoholic father, an emotionally absent Mother, lost her beloved older sister in a tragic car accident when Mom was 34, and then outlived her remaining two siblings. She was a lonely child, an adult who never believed in herself — at least not after Dad’s emotional demeaning of her, and she was alone in dealing with her abuse. Given she had no support system in her life, why would I expect her to have a professional support system at the end?
And…us? We wanted to be able to focus on her emotional needs and let someone more skilled give her the medical care she needed and deserved. Not to mention, we could use some emotional support as we watched our Mother die. But…
It’s been said you die as you lived. Maybe that’s true, at least for some. I do think it was true for him. But for her? I am still processing what I witnessed of her that last week of her life. And while on some level, her difficult end mirrored her life, I don’t think that line fits how she faced her death. Frankly, by the end of it all, I was in awe of her…
The final week, and recliner hell
Sunday 12/12
Mom just signed papers after picking out a room at a local assisted-living facility. In another month, Mom would turn 91. She’d done an amazing job living independently all this time. But she was getting more unsteady. Case in point, recently she casually mentioned that, during one of her middle-of-the-night bathroom trips, she had passed out, woke up on the floor, and then just got up and went back to bed!
Add in cognitive decline from mini-strokes, heart failure kept in check only by her meds, and her overall anguish that she was still here, and it was time for more assistance. Though she didn’t really want to go through another move in her life, she agreed it was time for more help. So they would be ready for her in about a week.
She did seem fine with the decision and even noted, “They make good coffee.”
Thursday 12/16
Today, her health suddenly did an about-face. The doctor said she needed hospice care.
Friday 12/17
Coughing and with a 101-degree fever, she sat in her recliner, semi-conscious.
Her recliner. It was a place she would not ever again leave under her own power. We didn’t know it then, but that recliner would be her “cradle” for the next 84 hours.
The social worker from the local hospice informed us they still had no staff available to help with any care. We all agreed Mom should be moved to a more comfortable situation in a group home or convalescent home. Her apartment was not well set up for home care, and no one wanted that for her. But it would be Saturday or Sunday before anyone might even be available to talk to us about it. So all we could do was wait.
We spent the rest of the day trying to cool her fever, administer fluids — she had stopped eating the day before — and helping her to the bathroom. It was agreed that one of us would stay the night with her.
In fact, from that moment on, she would never be alone again.
Saturday 12/18
This morning, we realized that it would now require two of us at night. She was only half-conscious, and mostly dead weight at this point, so getting her to the bathroom was too much for any one person to manage safely. Fortunately, the recliner was motorized, so we could use it to lift her up and into a wheelchair. Then we could use it to lower her back down to rest.
The only problem with the recliner was that she kept sliding down. At one point, she just looked so uncomfortable, all slumped over. So we gently tried to move her up and rearrange everything. She had been unresponsive…until we moved her.
“Tell me what you’re doing!”
Her sudden outburst caught us all off guard. It wasn’t so much anger in her voice, but probably more shock at us suddenly moving her. It was a lesson learned about the dying process — unresponsive doesn’t mean “unaware.”
She went back to sleep, but restlessly. So I gently massaged her feet and hands to relax her.
A bit later, she woke again. “What’s happening to me?”
I looked her in the eye and softly answered, “You’re dying, Mom.”
She was quiet for a moment, then asked, “Why are you doing that?”
“Because it seems to calm you.”
She took that in, then without another word, closed her eyes and went back to sleep.
By later in the day, she stopped taking any fluids and made her last bathroom trip.
“Oh God,” she moaned, as we tried to ease her into the wheelchair.
“I’m sorry,” she mumbled, as we maneuvered her into the bathroom. She seemed to be upset that her kids had to assist her with a process that she’d done for herself her whole life.
We reassured her we had no problem helping her, and it was at that moment that I spotted the reason for her pain — she had an open wound at the base of her spine. No doubt that was the result of pressure on her back from sitting so long.
Desperate to improve her comfort, I headed out to a pharmacy in search of diapers, bandages, antibiotic ointment, and sponge-sticks to keep her lips moist. You would think diapers would be a no-brainer, but nobody had any. So I returned with the other items and tried my best to dress her wound and pad the area.
Mom was moaning more now, so I put on her favorite channel – Catholic TV. A priest was just finishing Mass, and then the nun, Mother Angelica, came on.
Mom may have seemed unconscious, but I am convinced she was aware of Mother Angelica, because as the nun prayed, Mom moved her hands like she was trying to fold them in prayer. Mom mumbled something unintelligible, and I assumed she was praying along with the nun. Several quiet minutes went by, then Mom suddenly said loudly,
“Mother Angelica, help me.”
It crossed my mind that Mother Angelica was probably the perfect person to do just that. Even though her program was still on TV, she had died a few years ago. So who knows, maybe Mother Angelica was in the room with us.
Sunday 12/19
After a restless night, Mom woke up very confused. She tried to get up and dress for breakfast and Sunday church – old habits die hard – but we encouraged her to stay put. She went back to sleep.
A bit later, she suddenly came to, sat up, and reached for her crossword puzzle book and pencil. Mom was a crossword puzzle fanatic. She sat there, book open, pencil poised above the page, but not really focusing on it. She remained that way for a few minutes, then closed the book and went back to sleep.
An RN was finally able to come by. She, too, had no diapers, but did bring lemon sponge sticks and put a much better dressing on Mom’s wound. She also helped us place Mom onto a sheet so we could use that to more easily move Mom around in her chair and keep pressure off her back.
Again, we learned there was no staff available to help us, and no one would be able to discuss with us, where to move Mom, until Monday…at the earliest. I cringed at the thought of Mom having to remain in that recliner another night, but there was little we could do. And it was still better than her bed.
The nurse did arrange, though, for meds to be delivered that evening. We’d get three meds to dose Mom with — lorazepam for anxiety, haloperidol for nausea, and morphine for pain. The RN delivering them would show us how to give them with a syringe, when, how much, and what paperwork to keep.
While listening to Mom’s Catholic TV channel, I pondered the irony of three hospice meds. It seemed somehow congruent with both her faith — The Holy Trinity — and now, her medications…the Hospice Trinity.”
Later that day, in fact, for the rest of the time we would care for her, Mom would be groaning, and her breathing very loud and labored. The only time she would quiet down was right after the meds were given, and then at the very end of all of this.
Monday 12/20
4:00 a.m.
She had been moaning all night, and it was almost time for more meds. I had been trying to stick to the dosing schedule we were given, but her moaning was getting worse, and she seemed to be in more pain. As I gave her the morphine, I reflected on what it means to watch someone…especially your Mother, die.
So often over this last year, Mom had asked with sheer agony in her voice: “Why can’t I just go to sleep and not wake up?”
Why indeed.
The doctor had told her that her heart pills were keeping her alive, and if she stopped — which was her choice — her heart wouldn’t last long. Even as she wanted to die, she had been unwilling to stop the heart meds. But yesterday, underneath a stack of papers on the counter, we found a pile of her pills, untaken.
After years of waiting for God to act, and faced with having to make another move to the assisted-living facility, maybe Mom made her choice?
5:00 a.m.
We needed food…and coffee, so I ran out to pick up breakfast. I was sad, though, because while I was gone, Mom woke up and said thank you for taking care of her. By the time I got back, she was asleep again.
As I ate, I thought about her life, its evolution from that happy, hopeful young woman to the battered, disillusioned, sometimes harsh older one.
Mom’s groaning sounds increased. I looked at the medicine log and stressed. What to do? It had only been an hour since her last dose of medication, yet she was obviously in pain. One of us said what we were both thinking — “Does the timing really matter?”
Suddenly, it got quiet.
“Since when did you become a doctor?”
I whipped around to see Mom lying there, smiling. She was wide awake and seemed relaxed and pleased with her joke.
My jaw just dropped. I mean, normally, Mom couldn’t see without her glasses, and she didn’t have them on, yet she saw us. And Mom was what they termed “profoundly deaf,” which meant that even WITH her hearing aids, you had to yell. Yet here she was, lying there smiling, and having a conversation with us like she did when she was decades younger…all without any hearing aids.
I had the eerie feeling this was one of those “Divine Moments” in life that doesn’t make logical sense, but happens anyway. I thought of the line from Shakespeare’s Hamlet: “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.”
I managed to pull myself together enough to laugh.
Mom spoke again: “You are such good people. Thank you for all you are doing for me. I love you.” It was heartfelt. Her face radiated joy.
I told her I loved her and asked how she was, and if she wanted to pray. I offered to say the Act of Contrition — that prayer from Catholic school that the nuns taught us to say for when you want God to forgive your sins. Her response was strong.
“Yes!”
So we started…”Oh my God, I am heartily sorry for having offended you…..”
She spoke strongly, with no faltering or forgetting words. After we finished, I asked if she wanted to say a Rosary, and again, she heard me clearly and responded strongly: “Yes, I would.”
So we began, “Our Father Who art in Heaven…” We made it through that prayer and a few Hail Marys, too, before she drifted back to sleep. She would never wake up again.
Almost immediately, the room rattled with the noise of labored breathing and moaning.
I gave her the meds.
Late morning
An LPN finally came by and took Mom’s vital signs. We were hoping for news of when we could move Mom to a better setup.
Instead, she turned to us and said, “We can’t move her now — she’s in transition. We’re going to have to get a hospital bed in here.”
You could have heard a pin drop. The one outcome none of us wanted was now coming to pass.
I spoke up. “They were supposed to move her to a rest home!”
She explained that it was too late. Mom’s temperature was very low, her blood pressure and oxygen levels had dropped, and her extremities were cold and blue. She was actively dying.
Then she said, “Why isn’t she on her oxygen? She’d be more comfortable.”
At that moment, I snapped. I wasn’t unkind because this woman was our best and only hope. But I was at the end of my rope.
“We don’t HAVE any oxygen! Nobody gave us any or told us we needed it!”
The LPN looked shocked.
I said, “Look. Since this started, we’ve had almost no help! We haven’t gotten anything but meds, and we’re almost out of those!”
That did it. That LPN got on the phone and started lighting fires under several people. She demanded they get us a bed NOW, as well as oxygen, diapers, more meds…and help. She was wonderful.
Because she was filling in, she couldn’t stay, but assured us these things would come soon.
4:00 p.m.
Well, it wasn’t “soon,” but finally, the hospital bed, diapers, and oxygen arrived, along with another RN. Once the bed was set up in the other room, she instructed the seven of us as to how we would move Mom to it.
Gently, ever so carefully, and with death grips on the sheet under Mom, we lifted her up off the recliner. Step by deliberate step, moving as slowly as pallbearers, we carried her into the bedroom and set her down on the hospital bed. Then we changed her, raised the head of the bed so she could breathe easier, and started the oxygen tank.
After almost 84 hours, her recliner hell was finally over.
By this point, I was administering her the maximum amount of all three medications, frequently. The sounds of her loud, dead-rattle breathing filled the apartment.
5:00 p.m.
Someone had the inspired idea to play music on their cell phone. Mom seemed to relax a bit.
We played classical, some big band since Mom would have grown up with that, the soundtrack from the Sound of Music, and Mom’s favorite — Pavarotti singing Ave Maria. It was a rare moment of serenity for all of us.
Then — and only God knows how — the cell phone station shifted, and suddenly, out blared the strains of “Gonna Fly Now!” — the song from the first Rocky movie when he runs triumphantly up the stairs in Philadelphia and waves his arms jubilantly. We were too stunned to react, and frankly…it was so apropos….
Soon after, another RN arrived with more meds and assurances that a night nurse would arrive shortly.
6:30 p.m.
Mom was now very calm. For the first time since Friday, she was silent and serene. Her chest was still…barely any breath movements at all. She was cold and had a bluish hue. I had the sense her battle was almost over.
7:00 p.m.
FINALLY, for the first time since all of this began, we had help — the RN from the nursing service arrived to stay the night. By this point, we’d had little sleep for almost four days. We were beyond exhausted, and could barely function. In fact, our son was going to drive us back to the hotel because we weren’t sure we could.
Knowing she might not last the night, each of us in turn said our goodnights…and goodbyes. Waiting until everyone else had left the room, I approached her.
I took one long last look at her, then leaned close. I thought back to that time in my childhood, when she asked me, “Why don’t you love me?” — which broke my heart because I always loved her more than him. So, I chose my words very deliberately.
“We’re going to go get some rest now, Mom….I just want you to know that I love you…and that I ALWAYS loved you.”
I took another breath and wondered if I should say the next words. But I sensed it was now or never, and that if I didn’t speak them…I might regret it for the rest of my life. I so wanted her to hear this, and to send her into eternity, free of any guilt.
Leaning very close to her ear, I spoke quietly, slowly, clearly:
“Mom… I just want you to know…that for the things I didn’t do so well with you in life, I am sorry…and for the things you didn’t do so well with me…I forgive you.”
She immediately and visibly stirred.
I don’t know if she actually heard me…and actually understood my meaning. There was a world of things unresolved between us, and they would remain that way. But I hoped she heard me and grasped my exact meaning. I wasn’t trying to take advantage of the situation to say something she didn’t want to hear. But before she died, I wanted her to know the truth of my love for her and set her free for eternity. I hoped I did the right thing.
We headed back to the hotel. About an hour later, the call came…Mom was gone.
8:30 p.m.
Returning to her apartment, I walked over and took in the sight of Mom…or more correctly, her empty shell, on her bed. Sitting down next to her I just stared at her in amazement and wonder and wanting to …congratulate her…I felt such an overwhelming sense of ….joy, respect, awe.
I kept saying to her, “Mom…you did it. You were amazing. Catherine Phillip, you are one hell of a Badass.”
I couldn’t tell you then why I felt that, but I was just amazed at, and overjoyed by her…achievement. It felt like she’d won some huge victory or run a hellish marathon and hit that tape at the finish line first. Even now, as I write this several years later, I feel the same way, and maybe even more intensely.
The funeral home staff arrived and added to that sense of honor and ceremony. They carried out a beautiful ritual to robe her and cover her with a special blanket, then, solemnly escorted her out.
I watched from the balcony outside her apartment as they wheeled her down through the facility one last time, cementing that image in my brain. They stopped long enough for the facility manager to say her good-bye, then disappeared through the doors into the night. I watched until they were out of sight…my last view of her. After that, she would be dust.
***
The victor, the new question, and the rebirth
Catherine Patricia Tomala Phillip was finally at peace. She had died painfully, actively, heroically. But she died on her terms, and now, she was free. Nobody was ever going to boss her around anymore, demean her, or hit her again. This was HER victory, totally.
Yes, death took her. It takes all of us. But HE never won out. She outlived him. She not only endured and survived the worst he could throw at her, but she also continued on and thrived. In the end, that spirit in her — the one she seemed to shine with early in life — returned. She triumphed, her way.
In fact, a few months later, at the very end of her cemetery service, black clouds suddenly rolled in and dumped a torrential downpour that left us all trapped under the tarp. I couldn’t help but laugh and wonder if that wasn’t Mom’s last “Fuck you” to life.
But as to her death that night and that question — “Could I care for her as she died, even with so many unresolved emotions? — I had my answer. I was so immensely proud of how she navigated it all. And if there was one other overwhelming emotion I felt at that moment, and still do, it was gratitude.
Despite the ordeal of the last four days, I couldn’t help but feel things played out exactly as they were supposed to, and that we’d been given the gift of walking with her to the end.
As to all the emotions still buried in me, and the questions left unfinished between her and I, all of those things would come back for me soon enough, even as I didn’t know it that night.
One new question did surface that night, though, and that is the one that would start to “crack open my wall of emotional dissociation” — the wall that held back a lifetime of emotions I wasn’t even aware of yet:
Though both of my parents had their part in my 28 years of trauma and never apologized, why could I forgive her, but not him?
Beginnings come from endings. It was the end of an era — they were now both gone. And I no longer had to keep a lifetime of emotions in check to concentrate on their care in the present. That night, her death birthed a new beginning for me — releasing unrealized traumas and catalyzing my need to find answers through this book.
Tags: adminster medication, death, dying process, haloperidol, Holy Trinity, hospice, lorazepam, morphine, Mothers, Mothers' deaths, sexual abuse
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