I remember the day hospice came to call. It’s that day we keep at bay for as long as possible. Our caseworker was supposed to arrive at 1:00 pm. Mom had asked me to be there for the meeting. It didn’t help that at 2:00 pm she still hadn’t arrived. It might have been better to have tried to reschedule but we all waited—feeling like sitting ducks. I had carelessly kicked my boots off, was lying on the bed beside Mom, trying to be patient and began to feel an ache throughout my muscles. It was hard to be a cheerleader for hospice. This was not what I wanted–what any of us wanted. We only wanted the cancer gone, out of Mom’s body for good. Dad never stopped praying the words at every meal, “…and Lord, if it be your will, we ask that you heal Dolores.” But Mom had suffered enough and was really preparing for it to be over.
When the doorbell finally sounded, Dad buzzed our guest in and joined Mom as she made her way carefully to the dining room table. I greeted the caseworker, all hostess-like, at the door asking if she’d like something to drink but she declined. I probably didn’t fool her or anyone else that I was really pissed off from having to wait for over an hour and that that frustration was further compounded by my deeper resentment that we were in this situation of needing hospice at all. I would never stop trying to understand how any of this was even possible.
My sense was that we were not off to a good start but I led the caseworker into the dining area where Mom and Dad were doing their best to be hospitable.
“We don’t need to check your blood or liver levels today,” Ms. Caseworker said as she settled into a chair next to Mom.
She was talking too fast. Her phone rang and she took the call. Mom, Dad and I sat there waiting for her to finish the call, tension building. I could tell Mom was not doing well. Get off the phone lady! I wanted to scream. What are you doing?! She finally hung up her phone.
“Are you taking any pain meds?” the caseworker asked Mom.
Oh come on. You’ve got to be kidding. What kind of question is that? My mom has fourth stage metastasized cancer. They had tried final rounds of radiation to help with the pain, but it didn’t. They ended her chemo because it wasn’t working and this woman is asking her if she has pain meds? Aren’t they briefed? I sneezed. Oh no, I thought and sneezed again. I’m allergic to the caseworker.
Then the woman’s phone rang again. She answered it. I sneezed again. I’m grabbing that flippin’ phone and smashing it. Take cover Mom and Dad, I’ve got this under control.
“Tell me everything you’re taking.” Ms. Caseworker said as she closed her phone once again.
What? Can’t you get that from her doctor? Don’t make her expound unnecessarily. Save her strength.
“Can’t you get that information from her doctor?” I asked innocently enough but was ignored.
The caseworker kept asking questions in a low mumble so that Mom couldn’t hear her and had to keep asking, “Excuse me, what was that?”
Speak up Nurse Ratchit! I wanted to shout, giving her the name of the nurse she reminded me of from the Jack Nicholson film One Flew over the Cuckoo’s Nest.
Mom explained that the tumor in her skull made things sound like she was in a tunnel and politely asked if the caseworker could please speak up. Then she asked,
“What about my vitamins? Should I keep taking those?”
“No, you can stop taking those.”
I winced. What’s wrong with a few vitamins?
“Eat what you want. Are you eating? Do you have an appetite?” The caseworker next asked.
Not anymore! I wanted to say standing from the top of the table but the look on Mom’s face stopped me from moving. We sat there, Mom, Dad and me, sort of paralyzed by the situation.
Then Mom started going through all her medications for the caseworker, patiently, one by one. I sneezed again and everyone looked at me. Mom continued with the list and schedule of her pills. A debate soon ensued about the Docusate and Perdium she took to ward off any dreaded irregularity caused by the onslaught of all these meds. Mom made it very clear she wanted to take one of each and Miralax at bedtime. It wasn’t something she wanted to change. The caseworker insisted she take two of each and skip the Miralax.
”Let’s keep it simple,” she demanded after a back and forth until Mom finally conceded.
I was trying to like this woman. There was a faint resemblance to a childhood friend there. I was really trying to work with that and trust that this woman who was sent to be a nurse to my mother knew what was best for her and would help her “live” with cancer.
“What are in these two boxes?” I asked with forced sweetness, trying to change my approach as I reached for the two mysterious looking boxes she had ignored throughout the meeting. I shuffled through the pack of cards that sat on top of each box. The cards listed the names of the enclosed medications.
“You won’t understand. You don’t need to worry about those.” The caseworker said, preparing to leave. “Keep them in the refrigerator so you’ll know where they are.”
“So, we won’t have to administer any of them?” I asked, hopeful that we wouldn’t.
“Oh no. You will.” She clipped.
“Well then…I’d really like to know what they are for. If there’s an emergency, I might panic. That won’t be the best time for me to decipher what’s what.” I was beginning to feel competent in my approach with this woman. No one was going to push us around. I felt a rush of blood in my cheeks.
“We have given you an entire pack of papers regarding the contents of each of these boxes—they are complete with every side effect known to man,” she said.
I only wanted a little translation of each Latin word–I never took Latin. For example, this one is for nausea and that one is for anxiety or whatever they are for. This woman was really taking me on. Was this a competition?
The caseworker’s voice rose as she proceeded into a lengthy monologue about the various levels of seizures that might lie ahead.
Seizures! No one wanted to hear about seizures.
I couldn’t stop her in time. Mom let out a shudder and then lowered her head to stifle her tears.
The caseworker turned to Mom, “Are you all right?”
“I’m just….It’s just…” then finally, the tears she’d been struggling to hold back since this woman told her she could stop taking her vitamins, flowed.
The caseworker turned to me and said, “See? That’s why I didn’t want to tell you.”
My eyes stung and I too lowered my head feeling responsible for my mom’s tears.
Luckily for Nurse Ratchet, Dad had remained quiet. Not because he was being kind or tolerant of her lack of bedside manner but because Nurse Ratchet had succeeded in confusing and confounding the wits out of him—out of all of us—with her terse instructions. He, as much as any wise soul knows, it’s best to keep quiet when you’re not sure of your position.
I, on the other hand, clearly hadn’t learned this yet.
I just want too say how sorry I am that your family was treated in this cavaleir fashion by a fellow nurse. No appology for her lateness, and why did she not turn her phone to silent? I hope you complained to her boss.The last thing you needed, to trample your feelings, showing no respect for your family.. and what was the deal with the vitamins? Your Mum is allowed to eat whatever, but should not take her vitamins?. If someone has cancer at this stage, they eat/ drink whatever they like. My mother in law has taken to a couple of large scotches at lunch time! The nurse is lucky you did not show her the door,and help her out with a boot in the britches.
I wish you strength and love to help you and your family.
My emotions were so volatile, it was good I stepped back a bit and didn’t pounce…… Sounds like you have a spunky mother-in-law! Your words of understanding and encouragement mean a lot to me. Thanks so much Wendy.
I am sorry that you had a bad experence with hospice. Suzanne and I have only had good relationships. At my age this is happening way to often. I thank you for “Sundays with dad”as it brings back so many good thoughts. You know how great full ia am to have known your father…mpj
Mike! Thank you for sharing that…I worry I go meandering as I wait to get a new story from Dad. That you are sticking with me makes my day! So sorry to hear the “C” visited your home too….you have our prayers. love, Debbie
Why would someone like that be a hospice caseworker?
And you too Tom! I was sure I lost you with all these roundabout stories! Seriously, Dad is getting ready for Doors Open this weekend and is working on his talks for Sat. and Sun. He is not too happy with me these days if I mention the word “blog”! Stop by Central United Methodist at 25th and Wis. at 1:00 pm either day. Honestly, there’s nothing like hearing a story straight from him. I am so fortunate. Anyway, back to your comment, we found out that she was new but that’s another story.
This story is sad because this nurse lacked empathy. So sad for you and Bill. That nurse was disrespectful, unkind. She could have turned her phone off. I am a nurse and I would never treat anyone like that.