B – The Night Before Room 15

July 13. 2015

11:00 p.m. (Monday night, July 13th)

We just sit.

Staring at each other.

Mama, struggling to make her lungs behave.

Me, struggling to make sense of the moment.

Both of us, frustrated.

How can it be that the roles of mother and daughter could easily be overwritten by those of patient and caregiver? Mama wants to “take care of herself”. I want to “take care of her”.

Mama, on the edge of her bed.

Me, on the edge of the bench across from her.

We’re at a stand still.

We wait.

And wait.

What are we waiting for?

“God, please, there has to be some sort of answer. Some sort of reprieve.”

Mama gives in and assures me she loves me.

I reiterate, patting her on the leg as she finally is able to lie down.

It’s been a long, long day.

______

Mama’s entire hospice team came to the house earlier.
First, her nurse, Lisa.
Followed by her nurse assistant, Chaniqua.
Then, her social worker, Michael.
This is the first time that has happened!
Lisa was working diligently to find a biliary drain stopcock.
So she left after consulting on the phone with the med supply person.
Then mama told Chaniqua she didn’t feel up to getting out of bed.
So, Chaniqua left.
And finally, mama told Michael she didn’t feel up to conversation.

This didn’t surprise me. We were coming off of a bad weekend. Mama was bound and determined to “take care of herself”.

Over the weekend, she continued to take apart her biliary drain bandages,
mocking up “new ones” out of hospital tape and a maxi pad. Let me tell you, the woman can rig just about anything. Has her whole life. It’s part of that independent streak she wears so boldly. And now was no different.

I noticed over the weekend that her biliary drain site was leaking. A lot.

Mama snapped, “It is not leaking! The stopper is missing.”

This “stopper” is a stopcock. It’s located between the drain tube and the plug. Right in the middle. So I couldn’t understand how it could just go missing without some help. But mama demanded she had not taken it off. “IT’S JUST MISSING!”

I called the hospice on-call nurse, since it was the weekend, only to be told that no one would be able to get that part for mama until Monday. My mama was so mad I called, but I felt I had no choice.

“Mama! You’re leaking stuff from inside your body. That’s not cool.”

Oh, that made my mama mad. As did my complaining about her storing her biliary drain bag
in her bedside table drawer, still filled with the stuff that comes out of, well, her. And needless-to-say, sick or not sick, mama and I had a weekend filled with “I’ll take care of myself’s” and “Fine, but you need to let us help you’s”. It was a stressful weekend.

Her the patient. Me the supposed-to-be caregiver. I like to say that mama was just well enough to be a bad patient. Truth be told, I was just ill enough to be a bad caregiver.

Mama’s social worker, Michael, left mama’s room when she dismissed him earlier today. But he didn’t leave. He stayed with me in the den as I asked him questions about mama’s current state of well being.

Mama had asked me the week before if I knew what she could expect to happen, at the end, when this disease takes over. I had wondered the same thing myself, and just like I know my mama had done her own internet search from her iPad, I had done from my computer. Still, this wasn’t something we talked about out loud, or with each other before. I told mama I would talk with her hospice team and see if they could talk to her about it. I did reassure her that most of what I had researched had most people with pancreatic cancer slipping into a coma anywhere from 2 weeks to just a few hours before death. Mama was so afraid of suffering.

With Michael staying to talk with me, I was able to ask him that very question, and he was able to give me a pamphlet about end of life and what to expect. But I also was able to share with him what a very frustrating weekend mama and I had. And, as mama had told Michael before, and as she had told me, her preference was to stay in our home, in her room, until death, if at all possible. Being a lifelong nurse, the last thing mama ever would want is to be put in a “home” at the end of her life. She seemed to say the words, “hospice” and “hospice house” as if they were bitter coming off of her tongue. Honestly, I didn’t know anything about hospice care, let alone the Hospice House, at all. But I did want to honor my mama’s wishes, so that meant putting a big x over the idea of The House.

___________

12:30 a.m. (Tuesday morning, July 14th)

Still sitting across from her, I say, as lovingly as possible, with a marked note of exhaustion, “Mama, you know that we want what you want. We know you want to be home with us, and we want you to be here, too. But the fastest way to get a ticket to the Hospice House is to not let us help you. I’m not fussing. And I’m not yelling. But you need to let us help you, mama.”  Mama understands. She concedes. She agrees that she will let us help her. She agrees to letting us put a hospital bed in her room tomorrow. She agrees to letting me track her medications. At mama’s request, I write 1:00 a.m. on a little pill cup next to her bed. I drop in the next dose of pain medication. That way she will know when to take it. She’s getting so confused. I set my alarm for 1:00am anyway, so I can be sure to check on her. “I love you, mama”, I say from her bedroom doorway. “I love you, too. Now if I’m sleeping good at 1:00 a.m, don’t wake me up to take my medicine”, she says. It’s 12:30 a.m. For half an hour, I lay in bed with my husband, recounting the day’s trials. I pray. When my alarm goes off at 1:00 a.m., I’m not asleep. I rise, and go to check on mama. She is sleeping. Soundly. Though she’s laying sort of on her back with her mouth agape, I see that she is resting well and her color is good. I don’t wake her. Returning to bed, I am asleep before my head hits the pillow.

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