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May 3rd, 2023 – Post #76
I’m sitting here with my mom, listening to the rhythmic sound of her oxygen machine as it hums and puffs. She hasn’t wanted it in a long time; but her hands were gray today, so she decided it would be better to wear it.
Yesterday, I moved her wedding band to her middle finger to keep it from falling off. The nurse has begun coming three times a week, rather than once, measuring my mom’s arm muscle each time. It’s shrunk a little more on every visit.
Her Kennedy Ulcer has not worsened dramatically; but there are darkening signs on her skin that indicate it is breaking down.
Her heart has been skipping beats, she’s had chest pains, and has occasionally let out a brief cry due to a sharp pain in her neck. She’s smiled when I’ve said, “What if I have to tell people, ‘She survived Pancreatic Cancer; but died from a ‘pain in the neck’.”? 😉 Overall, I’d say she’s having a harder time staying comfortable. Even when she doesn’t complain, the crease that appears in her forehead when she doesn’t feel well is a tell tale sign.
I think it was just after my last post that her vomiting increased due to being “turned to the West”. Erica suggested that spinning the bed back and forth each time she had to go on her right side would help her not get dizzy, since that way she’d always be going East. We’re just full of good ideas in this family!
My friend was talking about the "Alexander and the Terrible, Horrible, No Good, Very Bad Day" book recently. I guess even if we took our mom "Down Under" between each two-hour turn, she might still get sick, since according to Judith Viorst, people still have bad days, even in Australia...
Anyway, I was already feeling the pressure of having to turn her every two hours to protect her from bed sores; but the fact that doing that made her sick really added to the stress. I’d be laying there in the dark debating with myself about what was worse – damage to her skin, or furthering her dehydration by accidentally inducing vomiting during the turn.
I felt terrible and horrible for her either way.
We’d ordered a motion sickness patch (thanks to Erica’s input). I thought that would be an easy fix; but when I read the long list of side effects that came along with it, was at a loss as to what to do. It sounded like it might actually make things worse. One of her chief complaints through this time has been having a dry mouth.
We had to ask the question, was it worth the risk of further drying out her mouth, which would be a near-constant misery, to save her from feeling sick every two hours? Which would dry her out more – the medicine, or the dehydration induced by the vomiting? Neither sounded ideal.
Worse, was that among the list of side effects from the motion sickness patch was the possibility of seizures. I totally balked at that. Because of her dizzyness, I’ve already been suspecting that my mom’s cancer has probably spread to her brain, and have been holding my breath at times, knowing that one of the symptoms that may come with that is seizures.
These circumstances bring back the still somewhat raw memories in my mind of her brother’s battle with a glioblastoma brain tumor. I remember too well the stress of seeing that big, strong man unable to turn his head even slightly, because it would make him so sick. And worse than that, I remember when the seizures that the doctors said would come, did come.
I remember my mom helplessly describing them, saying, “It was like they were his own personal earthquakes.”
He’d be lying there, flat on his back, with his eyes closed, and a look would come over him, like he knew one was coming. I remember his peaceful face becoming a grimace as he’d open his eyes just in time to find my hand and grasp onto it. Then he would shake. And the bed would shake. And I would shake. All I could do was sit there and hold onto him and say, “It’s almost over. You’re almost through this. It’s almost done.”
It was so hard to watch. I’d hear my voice, and realize I was speaking to both of us. I didn’t know how much more I could bear to watch.
I didn’t want to let him go; but in seeing him suffer, I felt like my insides were being destroyed, and I wanted him to be done with all of it.
The thought of facing seizures with my mom is not something I’ve wanted to think about; but staring at the list of possible side effects from that motion sickness patch made me feel even worse. If she did have seizures, how would I know if the patch I’d put on to help was really the source of the problem, or if I should keep the patch on to keep things from getting worse?
I’ve realized with Hospice, and I guess with all of life, is that sometimes when there don’t seem to be any good options, you just have to pick the thing that seems the least terrible, and hope for the best.
I finally decided to put the patch on her. Thankfully, she hasn’t thrown up since then, though she has had some dizziness.
The Hospice nurse was able to assure me that if she were to have a seizure due to the patch, it probably would have happened immediately after applying it. She also said I should be prepared for my mom to have seizures; but they probably would not be as intense as my uncle’s were. From what I described, she said his sounded like grand mal seizures, while my mom’s would more likely be a matter of her eyes flickering and rolling backwards some.
Monday she was barely whispering; but fixated on fixing people – silently pointing out stains on shirts, straightening collars, taking a hold of our hair. The look on her face was often that of a child, fascinated by the features of an adult. She’d poke my nose, or reach for my teeth, and at one point tried to get a grip on my forehead.
Humored, I asked her, “Mom, what are you trying to do?” she replied with a smile, “I’m scalping you.” I had to laugh at that – she said it with such an innocent frankness.
Later that evening, the few words that she was saying, seemed to be spiraling into a form of gibberish that reminded me of the episode she had in December, which I think turned into a stroke. Sure enough, her blood pressure had gotten high again. Thankfully, she was compliant in taking it the liquid medicine I’m supposed to give her for that, though she hates the taste.
Yesterday, she was much more active. It eventually became difficult to get her to hold still. She was trying to catch balloons, reaching for butterflies, puffing at what I think was an imaginary dandelion on my arm.
All these things were invisible to my eyes; but very real to her. She was seeing people, too.
A few years ago, I had no idea that it is a common occurrence to come to the end stages of life and see people who have died before us, or other spiritual beings. I remember one of my aunts telling me, in the days before she died, “I keep seeing your grandma coming through the room, wearing a long white robe.” I remember my grandma, in one of the days that she seemed near death, saying, “I see birds up there on the ceiling. I know you can’t see them; but they’re there.” I witnessed another aunt, who seemed to see two women who she said had come to weep for the journey she was about to take. She also indicated that there was a dog by her side, which at first she thought was her dog; but then realized it was a different one. They seemed to be making some sort of an ascent together, from what she was saying out loud, though she wasn’t talking to anyone in the room that could be seen.
These are things I have sat and listened too, and observed, trusting that there is something to the similarities that so many experience at the end of their days.
This week, my mom kept naming people she was seeing, so I asked if she’d seen her brother, Danny.
She told me, “I think I did.”
“What was he doing?”
“It seems like he was working on something in a garage.”
I smiled, thinking about how I used to watch him work on things and asked, “Was he fuss-in’, or whistle-in’?”
She thought for a second, and then said, “I think he was fuss-el-in’.”
That cracked me up. (I always liked when he did either one – because the former reminded me of my grandma, so it would make me laugh when he’d get flustered; and the latter made me smile, because I loved to hear him whistle, though I never once recognized the tune).
At some point in the day, seemingly out of nowhere, my mom put her fingers up to her mouth, like a little megaphone, and called up to the ceiling something along the lines of, “Okay, call me when you’re ready for me, and I’ll come.” I wish I had a video of moments like that – there have been so many times when her innocent actions bring astonishment and delight.
The other night, when I was pretty much dead-tired, I’d heard her use that same melodious voice. Well, first it was preceded by a hurried command in the dark, as she unexpectedly insisted, “Jody, quick – get some ice water!” I was flat on my face on the mattress on the floor, when the urgency in her tone made me start up out of my sleep, astonished that she’d need a drink that fast, when she’d barely been sipping anything for days. Stumbling over toward the table to get her cup, I started asking, “Are you thirsty?”, but she shushed me loudly, then pointed toward the ceiling, whispering, “It’s for him!”
I looked up at the shadowed plaster, “For who?”
“It’s for him,” like I should have known. “It’s for Nathaniel!”
Fascinated by what she might be seeing, I asked, “What does he look like?”
She responded like that was a very stupid thing for me to have asked, saying, “I don’t know.“
“Well, how do you know his name is Nathaniel?”
“Well, how do you know he needs ice water?”
“Because he looks like he’s thirsty.”
It was the middle of the night, and I was standing there in the dark, shaking my head, confused and humored by my unexpected circumstances, when I saw the silhouette of her hand go up to her mouth in that same imaginary bull-horn position.
She turned her head straight up, and then announced in the sweetest sing-song voice, “OH, Nathan-iel, Come – get – your ice water!”
It cracked me up. I’ve gotten used to giving her drinks throughout the night; but had no idea she’d start expecting me to entertain unseen guests in the dark; but before I made too much light of it, a verse from scripture crossed my mind:
Whether my mom saw an angel, or not, I don’t know; but her desire to make sure she took care of whoever Nathaniel was, touched me. She was totally solicitous about his care. Since then, she has seen and named various people that have appeared to her, indicating to me that she is getting closer and closer to the end of this life, and the start of the next.
There are other symptoms that make me believe she doesn’t have much time here. I’d asked the nurse about seizures on Monday. Tuesday, my mom’s eyes did exactly what the nurse described. I was thankful for the preparation that Hospice had provided – both to recognize the symptoms, and talk my mom through the seizures, which hopefully helped her not be as distressed.
The day continued with more reaching toward invisible things and restlessness, though she didn’t seem that distressed. The problem was that she couldn’t seem to hold still, which was increasing the risk that she could fall out of bed. I wasn’t giving her nearly the amount of medication the doctor said she could take, mainly because she’s wanted to stay as lucid as possible; but in times like those, when I know she probably won’t sleep without it, there is always the tossing back and forth about what’s best. She did agree to take a dose, even though she says it tastes terrible. I was thankful she seemed to sleep soundly. I know she’s tired – I can’t imagine being awoken every two hours to be turned over.
Today, she had a very regular, irregular heartbeat. She had a surge of strength at one point, insisting that she be able to get out of bed, and even getting pretty heated when we wouldn’t heed her demands at first, which is pretty uncharacteristic. As she got more upset, I figured it wasn’t worth the battle, so we pivoted her onto a seat, where she sat for a few minutes. Some would say that display of energy indicates she still has some fight in her; but I don’t think she has much more.
To me, the most tell-tale sign that she is nearing the finish line is that she went nearly forty-eight hours with absolutely no urine output. This afternoon and evening, she did have some; but it was tea-colored. For a while, it had been orangish. From what I understand, these abnormal colors indicate that her liver and kidneys aren’t doing well.
She has told me herself that she feels like her body is shutting down.
I don’t think it’s just her body, though.
I have watched her withdraw more and more. So many times, when she is speaking, it is to someone who isn’t in the room. Things she would normally enjoy overstimulate her now. The squirrels and birds racing back and forth outside her window seem to sometimes overwhelm her. The other day, she said dryly, “The next thing you know, we’re gonna have kangaroos climbing in our trees.”
Even her little stuffed animal puppy dog, which has been by her side throughout this whole ordeal has become something of a nuisance. Whenever she’d see it before, she’d announce with a childlike delight, “Oh, isn’t he sweet!” and dote on him; but now she claims, “He’s just a lot to take care of,” and sometimes drops him on the floor to go away for awhile. She always takes him back eventually; but more from a sense of responsibility than pleasure.
She’s having a hard time keeping up with conversations, and gets easily confused by simple instructions. It’s been easier for her to drink through a straw while she’s been in bed; but now she needs a lot of instruction – reminders not to bite the straw; to purse her lips around it; to inhale instead of blowing out; and sometimes, even doing all those things correctly, she just plain lacks the strength to get the liquid to the top of the straw.
A friend reminded me that a sheep skin can help relieve pressure points (thank you, Melinda). That seems to have helped.
Right now she is sleeping comfortably; but it took a lot to get her to that point. Thinking it would help her rest, I gave her more medicine. To help her get rid of the taste, I helped her brush her teeth; but then, while swishing water in her mouth to clean it out, she seemed to get confused about what to do and choked, which scared us both.
It’s not a fun feeling when the things I do to help, like giving her medicine, or brushing her teeth wind up making her miserable.
Eventually, she recovered, then there was a long back and forth about whether she wanted to try and swish one more time. She said, “No,” so I said I was going to go dump the cup.
She said, “Okay, but bring it back, so I can swish again.”
I dumped and rinsed it, then brought it back, saying, “Okay, I’ll get you the water cup, so you can swish again.” She wanted to hold the spit cup while she waited, so I let her; but then she kept trying to drink out of it, even though it was empty.
I’d say, “Mom, that’s the spit cup. Here’s the cup for you to drink out of,” and she’d nod, but try again to drink from the empty cup.
Interactions like these aren’t really sad to me; but there is a strange sweetness, and I know they will be over with soon. For some reason I feel compelled to record them. Whether anyone reads them, or not, I’d like to remember.
And so, we’re between a rock and a hard place in so many small daily decisions.
The songs that come to mind are “On Christ, the Solid Rock I Stand,” and “Rock of Ages, Cleft for Me”. I was looking those up, and came across this version by Randy Travis, recorded in Carlsbad Caverns, which I remember visiting with my parents when they came to see me in El Paso. I’ve been thinking of some of those New Mexico excursions, and how my mom would wind up in an embarrassing situation and inevitably say, “Are you gonna tell this story at my funeral!?” Maybe that’s why she’s still here…
But that will have to be for another post – there are so many stories that I could share about our Beth-E, who is truly one of the funniest people I know, and the best part is that she never even tries.
For now, I hope you enjoy these songs and find courage, hope and comfort in the words.
*To read more on my mom’s cancer journey from the beginning, or share it, please click below: