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In my last post, I shared the dilemma I’ve faced in knowing how much to say about my mom’s dementia. I wonder how many people noticed that when I first published this page, I accidentally had the date as April 29th, 2013 – and got the post number wrong – so maybe it is my mind we should be worried about. 🙂
April 29th, 2023 – Post #75
If I had a quarter for every time I said to someone, or heard someone say to me, “You’ve got to take care of the caregiver,” my pockets would be pretty full, and I could have some real fun with the carts at Aldi’s.
I have to laugh that sometimes my best laid plans for “putting on my own oxygen mask first,” leave me in quite a tangle.
Case in point: After another long night of turning my mom like a log, and not really “sawing logs” myself, I decided I was going to take my breakfast to a park to enjoy the weather. Trying to “make good choices” to curb my ulcerative colitis, I’d loaded my bowl with rice I’d cooked and frozen into smaller portions months ago (along with cinnamon and walnuts), then topped it with yogurt, berries and a banana.
I was somewhat encouraged to be getting a good start to my personal daily agenda – even if it was delayed by multitudinous other things to do that morning (we’d just wrapped up a meeting with my mom’s nurse, and it was nearly eleven A.M.).
After about a mile of driving, I glanced down to see what people keep touting to me as “the most important meal of the day” scattered all over my seat and planner. It seemed pretty poignant that yogurt was smeared all over my planner.
Knowing the clean-up would be a slow process, I was pretty sure I would have rather fasted for that meal; but I know there's no use crying over spilled milk - or any other dairy product dumped on my planner. So, I decided to make a new plan, pull over, and just eat my breakfast alongside the curb, instead of at the park.
I happened to stop alongside the preschool I attended long, long ago. Sitting there, a memory of a costume parade my class had, came back to mind. My mom had dressed me like a scarecrow, with a moppy wig, striped denim jacket, and paint on my nose. The piece de resistance’ (is that the right term?) was the stick she stuck through my sleeves to extend my arms out straight.
This was long before any “Karen’s” took up the cause of costume safety – I can’t quite imagine sending a four year old out the door with no chance to break their fall with anything but their face; but I guess we were made of tougher stuff back then – or our mom’s thought we were.
Thankfully, I kept my teeth pretty much in tact for a few more years; but I guess the pole through my sleeves proved to be a problem, because my mom said I kept accidentally bopping other kids in the head every time I turned around…
Instead of scaring "crows", I was making the other kids "duck".
Thinking back to my short stent as a scarecrow made me muse over the words from the Wizard of Oz, “If I only had a brain.” I looked down at my planner again, which is basically my brain at times, and tried to salvage what I could of my breakfast from off the cover, then tried to take a few more bites from the bowl; but the wind kept whipping my hair directly into my mouth.
It felt so typical for me.
I’d tried to make good plans, and wished I hadn’t attempted anything at all.
Just then, across the street, a man passed by on the sidewalk, with a backpack on. He paused, then turned, stopped by the sight of a simple dandelion, still white with seeds. By his profile, I could see he had a child-like mind, in the body of an adult. Bending over, he plucked the flower from the grass, then leaned way out, as if he didn’t want to scatter any remnants on the sidewalk.
With one puff, the fluffy globe of seeds floated away with the wind, leaving an empty stem.
Seeming satisfied by his accomplishment, he continued his trek toward town.
Whether it was the simplicity of his motion, or the irony that made his action seem to represent my carefully crafted plans, something about it made me smile. As humans, our plans seem to get puffed away so often, yet we are so prone to keep plotting them out. You’d think we’d grow more discouraged than we do.
I remember a few months ago my mom saying, “Oh, what am I gonna do with my life!?”
I couldn’t help but laugh out loud. She’d been on Hospice for nearly a year and had a terminal diagnosis for a year and a half. Most everyone seemed amazed she was still living; but she was still sitting there trying to figure out what to do with the time she had.
I guess that predisposition to make plans stays in us for our entire lives.
Even still, she’s continuing to plan. A few nights ago, I was lying on a mattress next to my mom’s hospital bed. My body reminded me that it was probably time to turn her, though my eyes didn’t want to open. I checked the clock, and it was nearly midnight. Hearing motion above me, I looked up at my mom’s silhouette. I was surprised, considering her weakened state, to see her hands reaching out, as if greeting good friends in a receiving line.
I watched for a moment with wonder, then asked, “What are you doing mom?”
The whispered reply came back quite clearly. “I’m planning my funeral.”
From what I’d observed, she wasn’t just planning her funeral. She was acting it out.
I remembered one of my great aunts doing something similar in her last days. In her mind, she was thanking people I couldn’t see for coming to say goodbye, hoping they wouldn’t be sad, laughing to keep from crying.
Both with my aunt and with my mom, there was something sacred and other-worldly about witnessing these mock funerals. I didn’t want to interrupt; but I wanted to know more, so I asked some questions; but didn’t want to encroach too much upon something that seemed so tender.
From there, my mom and I talked about Heaven.
I reminded her of the verse from God’s Word in John 12:24 “Verily, verily, I say unto you, Except a corn of wheat fall into the ground and die, it abideth alone: but if it die, it bringeth forth much fruit.“
We talked about the flower bulbs that had been buried in her garden and how they brought forth beautiful tulips in Spring that looked nothing like the brown balls planted during the Fall – picture of how our new bodies in Heaven will differ from what we are accustomed to on Earth. We don’t yet know what they will be; but the end of this life is just the beginning of the next for those who put their trust in Jesus.
My mom and I talked about her brother Danny. She said, “When I see him, I’m gonna give him a big hug!”
That made me smile and think about Heaven being described as a feast, and our love for sitting around the table with Danny, hearing his stories. I told her to save a seat for me, reminding her of how he’d laugh and slap his knee, or the table, when something was particularly funny to him.
“Oh, won’t that be fun!?” she smiled, seeming to exchange looking forward to eternity, for longing to go back in time to those she had lost.
Sometimes, it seems she’s held to life so tightly for fear of missing out on any fun. I heard her laugh last night, confiding to her cousin, “I just can’t seem to die.” She knows she’s getting closer, though, and her heart seems more and more prepared to be done with the breaking seed of this earthly body.
Yesterday, the nurse described the spot on her skin we’d been watching as a “Kennedy Ulcer“, also known as a Kennedy Terminal Ulcer.
When we asked her, “What’s a Kennedy Ulcer?”, she said it’s different than a bed sore or pressure sore. It’s a sign that the skin, as an organ, is beginning to fail. These ulcers can grow rapidly, and can become very painful. We are to keep turning her every two hours to keep her comfortable; but it sounds like even doing that won’t keep it from growing. It is understood to be a telling sign that her body is shutting down.
Her motion sickness is increasing, and she is feeling sick and dizzy each time she gets turned. She says, “It’s worse when I have to go West.” Even if she isn’t always certain of where she is, she’s kept her directional bearings, and “going West” means facing the dining room at the rear of the house, rather than the front window.
Today, one of her turns toward the backyard brought on vomiting. We were giving her a bed bath at the time, and I felt so bad for her getting sick like that, especially in her weakened state. I do think it says a lot about her character that within a few minutes, instead of feeling sorry for herself, she was laughing, singing, “Splish, Splash, I Was Takin’ a Bath“. Erica turned the song on for her, and my mom tried to dance along by kicking her feet to the tune. She’s given us so much to smile about lately, despite her circumstances.
Last night, we were having what I thought was a very tender moment, holding hands in the dark just before bed, exchanging I love you’s, etc… I knew she’d had a rough day, and so I said, “Are you ready to be done with all of this?”
She said yes, she’s ready to die.
Then, remembering that it’s sometimes necessary for people to feel like they have permission from their loved ones to leave this Earth, I said to her, “It’s okay for you to go, if you need to, mom.”
She got a funny look on her face, then admitted sheepishly, “I already did.”
I cracked up. I could tell by her face we were talking about two completely different things.
“I meant it’s okay for you to go to Heaven, mom. I wasn’t talking about going to the bathroom!”
She keeps us laughing for sure and has a childlike sweetness about her that is beyond description.
The night before she’d asked me, “Do you want to sleep in the hospital bed with me?”
When I asked, “Do you want me to?”
She said, “Sure,” with such a delighted voice that I couldn’t turn her down, especially when she did her best to make room for me, even though she’s nearly completely immobile.
*If I had this to do all over again, I probably would have ordered an over-sized hospital bed to make these sleep-overs a little more comfortable.
Precious moments like that make me know I am going to miss her, and yet, I’m still very ready to let her go.
It’s been hard to know how to move forward and make plans. So many times I have felt like “The Flaky Friend” to anyone who has invited me to do anything. I’m pretty much totally non-comital at this point, because I never know from one day to the next what to expect. Her condition has been so up and down. Planning for the future has pretty much become just putting one foot in front of the other most days.
Most of the plans I have tried to make seem to get scattered; but this week I’ve tried to remember what happens to dandelions when they are dealt a puff to their entire being – that’s how more flowers pop up other places.
Besides that, I need to look at the bright side – at least now my planner has probiotics on it – maybe that’s part of “taking care of the caregiver” and will over-ride any germs on the cover and help keep me from getting sick. 🙂
For more on the subject of new bodies, I’d recommend reading: 1 CORINTHIANS CHAPTER 15 KJV (kingjamesbibleonline.org)
The deterioration of my mom’s earthly body is becoming increasingly obvious – in my next post, I talk about how we’re between a rock and a hard place in so many ways.
*To read more on my mom’s cancer journey from the beginning, or share it, please click below: