Tag: caregiving

The Space Between

THE SPACE BETWEEN

sumos quo sumos

-Lake Woebegone Official Motto

LARRY RICHARDSON
They say, (the people who know), 
the universe is mostly space. 
An empty place. 
Furthermore, these people who know 
insist that the same is true 
for me and you. 

We are all, it seems, 
just lots of nothing 
between tiny bits of solid stuff, 
just barely enough 
to hold us all somewhat together and,
to the world, make it appear 
that we are here. 

But this one thing I think I know for sure: 
a person needs a God to know 
and room to grow. 
And one place where there’s God and room,  
from everything I’ve seen, 
is the space between. 

Larry Richardson

Physical Therapists came yesterday to get Mom to stand and transfer to the reclining chair. The goals for her care have been the same for several days now. They are written on the dry erase board.
  1. Keep systolic blood pressure under 180.
  2. Increase awareness.
  3. Decrease oxygen demands.
  4. Out of bed.

The two therapists aimed at Goal #4. When they asked if she wanted to get out of the bed for a while (the orders are for two hours,) Mom said “No.” When coaxed about three times, and asked if she would help them get her up, she said, “Okay.” She helped to swing her legs around off the bed, and the female therapist said, “Well, look at you! And you’ve got a pretty pedicure, too!” When each therapist linked an elbow to each of Mom’s for support, she tried to push herself up with her hands, one of which is laden with IV needles and tubes. She got up, sort of, but she had no strength to turn herself to the near right to sit on the chair.

After the third try, they put her back in bed. She bent her knees on command and helped them scoot her up in the bed. Then they adjusted this fancy bed to simulate a chair.

She fell asleep as soon as they left the room. When her head bent dramatically to her shoulder, I lifted her head and re-positioned her pillow to make a support.

I wondered, What are we doing here? And then I thought, She really needs to be at home.

This morning, two nurses used the fancy lift in the room to move her to a chair. That machine is amazing! She ate five spoonfuls of oatmeal, drank half a cup of milk, and has been sleeping ever since. The breakfast tray sent earlier was not touched. At lunch, she tried to drink V-8 juice, but it didn’t taste right to her.

Getting her to eat is not one of the goals, even though she eats very little. I’m pretty sure I can prepare food that she won’t eat as well as the hospital does. (I threw that little funny in to make sure we see a little humor.)

The plan is to move her upstairs to what I have always called a step-down unit, a section of the hospital for those moving from ICU to regular hospital rooms or skilled nursing facilities. The criteria for that move is when she is medically able. While she is there, the caseworkers might usually plan for her move to a rehabilitation center. That is not going to happen, the move to a rehabilitation center. I’ve put that out there for everyone.

This morning, watching Mom sound asleep, crumpled in the bed, vulnerable to whatever treatment she receives and whatever is going on around her, I know she needs to be at home, in her own familiar bedroom, with Dixie, Dave, and Neil, and normal routines. (Well, “normal” for the Compound residents might not look normal, but it’s our normal.) We can plan for Home Healthcare, and we will provide true care at home.

She is more lucid than she has been, and she understands a lot of what I tell her, but she is still not completely in the real world. Or maybe it’s that she is in her world, and who’s to say that’s not the real world.

Now I wonder if she will ever be medically able to leave the ICU and at what point the doctor says, “Okay, I give up.” A nurse told me, “They don’t do that. They just keep trying different things.” Her awareness has increased. Her oxygen demands have been met and could continue at home. She’s helped out of bed each day. But there’s that first goal: If she did not have the high-powered drugs delivered by the needle in her arm, she would stroke within hours.

Today, three nurses tried twice each to start a new IV. Mom’s veins are fragile. I asked, “Okay, what’s the next step?”

A pretty blonde nurse answered, “We call in the professionals, the IV therapists.”

About thirty minutes later, a tiny woman appeared with gear in hand. She looked experienced. I asked if I could watch. On the first try, she couldn’t get the IV in, but on the second try (in the other arm), she made a perfect deep stick and entry. I learned a bit and was glad she let me watch, but that’s not really what I want to look at. I hope I never see another needle in Mom’s arm.

I like to picture Mama sleeping in a gauzy forest bed of flowers between two white veils. Through one of the semi-sheer curtains, she sees and feels the comfortable life in her apartment in the Compound and the beauty of all the blooms and foliage right now outside her kitchen window. Dixie runs over to lie in her lap every morning. Dave cares for her as he would his own mom. Neil fixes things and makes her laugh. I’m always there for her. She drinks orange Gatorade every morning followed by her favorite homemade mocha, enjoys her lunch from a tray on her lap, and eats sliced strawberries soaked in sweetened milk. Her nightgown is laid out on the bed each evening, along with night underwear and hospital socks.

Behind the other veil, there is a beckoning Bright Light, so bright that the semi-transparent drape almost disappears. At some point, the Love in that Light will become irresistible. The soul will make her choice.

At the end of this day, I watch her sleep soundly in her ICU bed. Today, she has fulfilled the requirement of getting out of bed and proven her awareness has increased by remembering her full name and the month she was born every time someone asks. (1931? She doesn’t come up with that.) She receives the oxygen well and is not struggling to breathe.

Her blood pressure spikes again and a nurse starts the IV drip.

I think, for this moment, Mama is warm and happy in the space between.

-0-

How’s your mama’n’em?

Friends frequently ask me, “How’s your mother?”

What I answer depends on who asks.

For relatives and friends with whom I don’t communicate regularly, it’s tempting to say, “Fine.” I can’t see that more explanation would be helpful, certainly not to me. When close friends ask, I try to gauge the amount of time I have to answer. Sometimes I say, “She’s requiring more help now, but her mind is still sharp.” If they have time to listen, and I have a few free minutes, they might click that button that says “Learn more.” Then we engage each other briefly.

I am completely honest with my writing group, The Five Ladies-in-Writing. I know they genuinely require some details. If I haven’t asked myself the question, I sometimes have trouble formulating an answer. That’s how I learned to talk to myself about Mom; I try to speak to her condition, her care, and even my worries about the future near and far.

So, self and caregiver, how’s she doing?

Things are definitely different than a year ago.

Last year, the first time I saw Mom each morning, she was sitting in her recliner in the den. She’d made her bed and emptied her bedside commode. She’d washed herself (showered on Thursday and Sunday), put on clothes and makeup, and coordinated her jewelry to complement her outfit. She’d taken her morning meds and checked her blood pressure and weight. More often than not, she’d be drinking her morning cup of mocha. I’d found an old recipe for Instant Mocha; non-fat dry milk, powdered creamer, Nestle’s Quik or a store brand of chocolate drink mix, instant decaf, and Truvia. The TV would be on Channel 5 so she could watch Gayle King and the boys.

She’d ask what I was cooking that day, and tell me whether she’d like to have some of it. If not, she would cook for herself. She’d remind me of appointments, mine and hers, for the week, and ask me what I was going to get into that day. She’d tell me what she’d put on the grocery list, so far. Dixie would come flying into the room and demand that Mom give her an animal cracker kept on a shelf in a table by Mom’s chair.

After her treats, Dixie would settle into Mom’s lap to get morning loving.

Nowadays our morning usually goes like this. Mom calls me when she wakes. I give her a few minutes, maybe five, to sit on the side of the bed to get herself acclimated to being up. When I get there, she has part of her clothes on, or none. If she hasn’t been in the bathroom to wash, I bring her hot washcloths and towels. Somedays, we clean more than others. Maybe the bed is wet, maybe the rug beside the bed, maybe just her gown. We finish dressing. Sometimes she wears an outfit that is clean that she wore the day before. Sometimes I choose more clothes–and shoes to match. Sufficiently clothed, Mom begins the twenty steps to her dressing room with her walker.

(On shower days, Tuesdays and Thursdays, our routine varies a little. But this story is about all the other days.)

While Mom is making her way to the dressing room, I go the opposite direction through the house, turn on lights and lamps, check the pad I keep on her lift chair (she doesn’t use the lift!), unplug the new motorized wheelchair that she’s yet to master, and retrace my path to her dressing table. Sometimes she is on the vanity stool, more often just beginning to sit.

We begin her beauty routine. She applies cream to her face. I arrange her hair with a plastic pick, making curls around her face and smoothing the back. She loves hairspray and the curling iron when she’s the stylist, but I find that both make her hair brittle so I spray it with some texturizer and tweak it a little. I’ve found the softest eyeshadow pencil that both holds its color and goes on smoothly. She has blue and hazy purple. She chooses the color for the day. She wants eyebrows. I pencil them in with a charcoal pencil. She would like mascara, but the woman has double fur framing her eyes akin to Liz Taylor’s so I’ve convinced her to skip that step. (Actually, she tells me every once in a while that she wants mascara, but I tell her “Oh no, you’re not going to cover up those furry eyelashes! I’ve seen what happens when she applies mascara and I don’t even want to try it.) Lipstick: She needs dark, bright colors. She chooses from several Maybelline New York 24-hour colors. If she is feeling well, she puts it on. If not, I do it. Either way, we are as likely to miss as hit her still perfect natural lipline. I clean the oops with micellar water. She usually applies the gloss.

“Do I have earrings?” she asks. I turn to her bedroom to find a pair to match her outfit. She clips them on. If one is loose, I re-clip it.

“Okay, am I ready to go?”

I answer, “Looks like it to me. You look beautiful.”

While she walks through her dressing room, Dad’s bedroom, and down a short hall to the den, I place her morning pills into a shot glass and pour a glass of Gatorade. I take both to the den and set them on the table beside her chair. I grab her water bottle from her walker seat to exchange it for a clean one full of ice and water.

In her chair, she finds her bottle of probiotic gummies and eats them with her Gatorade, applying eye drops for her glaucoma. I return to her bedroom, empty and sanitize her bedside potty, turn the lights off, and wash my hands in her bathroom.

I ask if she’s ready for her coffee. She still drinks the mocha mix, just wants to call it coffee.

Sometimes I drink my second cup of coffee for the morning. I ask her what she wants for breakfast. She usually wants a shake, but this morning she ate sausage, half a serving of rice pudding, and toast. She drank a glass of milk.

Dave calls to ask if she wants to see Dixie. She always says she does. After Dixie eats a plate of scrambled eggs, two animal crackers, and a small handful of cashews, the two of them begin their daily love-in.

That never changes.

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