Friday, March 30, 2012


Yesterday, Mom slept a lot. She took three solid naps. I chalked it up to a rough night due to bladder spasms and diaper changes. Last night, Mom had a great rest with no spasms or catheter leakage at all. And still today, Mom had a two hour nap in the morning, got up at noon, and was ready to nap again at 1:30. She is still eating and is really enjoying Loren's visit. Her body is just wearing out.

This morning at 10:00, as I was tucking her in for her first nap, Mom cooed a weary sigh. I spread the sheet over an uncovered arm, and said, "I love you, Mama." She smiled and whispered, "Me too." Then after a moment she added, "I can tell."

I am thankful.


This morning, one of the auxiliary tumors was clearly visible again. I pointed it out to Mom and as she felt the two lemon-sized lumps, she said, "It's like a range."

And so now I've named the second lump Mt. Doom. In my mind, of course. I don't share these monikers with Mom.

Wednesday, March 28, 2012

More Mama Mojo

My mom has definite t.v. viewing times. She doesn't sit around watching daytime t.v. or anything, but when Grandma's Programs are on, everyone knows to give a wide berth. Mom is serious about catching her shows and hardly ever misses. Here is the viewing schedule:

Sean Hannity, weeknights, 8:00pm

The Journal Editorial Report, Saturdays, 1:00pm

Fox News Sunday, Sundays, 1:00pm or 5:00pm

Huckabee, Saturdays or Sundays, 7:00pm

Monday, Nurse Christy told Mom that she was attending a banquet that night and the speaker was none other than the highly-revered Mike Huckabee. I asked Mom if she wanted Christy to procure an autograph, and she answered in her pitiful voice, "I'd have to leave it." Translation: I'm dying soon and I can't take an autograph with me. Alrighty then.

This evening, Nurse Christy dropped by. She walked into Mom's room and Mom asked, "What are you grinning about?" Christy handed Mom her banquet ticket with Mike Huckabee's picture on the front. On the back was a handwritten note:

Dear Anna --
God Bless you as you
deal with the illness --
I pray God's peace on you --
Thanks for watching my show!
Mike Huckabee

How about that? I guess the Mama Mojo even works long distance, and on famous people. It really shouldn't surprise me.

Tuesday, March 27, 2012


Mom: [as she climbs into bed for a diaper change] What do you think "the shadow of death" means?

Gwen: [pause, pause, pause, think, think, think] I guess I think of it as the fearsome proximity of death. So close you can see its shadow. Not death itself yet, but it's nearby. What do you think "the shadow of death" means?

Mom: I think it means, you know, a shadow. [Pause. during which I refrained from laughing at the typical Mom obscurity.] That because of God, it's not real. It's just a shadow.

Ah. Interesting.

Mom: [as I'm wheeling her around outside to look at flowers, buds, leaves, etc.] I talked to Ruth. She is coming in April.

Gwen: I don't know. I'm not sure if she should come. Are you going to be nice to her?

Mom: Am I going to be NICE?

Gwen: That's what I'm asking. You were mean to Gayle.

Mom: I know I was.

Gwen: So I'm wondering. You were so hard on Gayle and that would be very hurtful to Ruth. She can't take it like Gayle can. She's our delicate flower.

Mom: What do you mean she can't take it? She's married to Rich!

Oh my. So wrong.

Gwen: [joining Mom as she sits by the front window, watching Mittens] I gave your kitty my old leftover fish and some old leftover chicken from the fridge.

Mom: I think I've had that fish before! It was unforgettable, but I can't remember.

Gwen: [refrains from laughing]

Mom: Where did you get it?

Gwen: Pappasito's. Our anniversary dinner.

Mom: Oh. [sort of sadly] When do I get some?

Gwen: I just gave it to your cat!

Mom: Oh!!! [whimpers]

Gwen: It was old, Ma! And it was just a little piece.

(Later during following diaper change.)

Mom: [whimpers]

Gwen: Are you okay?

Mom: Yes, I'm still getting over the fish.

Gwen: [does not refrain] Hahahahaha! Mom!

Oh man. Food is love.


Yesterday afternoon and evening, Mom grew increasingly cranky. Her catheter leaked constantly. She grimaced so much as I closed up her diaper that I had her do it herself. She denied pain, but said her catheter "stung." And the big clue, Mom called hospice to send a nurse out. After she called, at the next diaper change, I found blood from the catheter. Not good.

When the nurse called back, she asked, "Do you want someone to come out and change the catheter?" I said, "I don't know! I'm calling you with the information I have." So, eventually a nurse came out. She too asked if we wanted the catheter changed. Again I said, "We don't know! We don't have the training to know. That's why we called you." To my everlasting credit, I did not say, "Duh!" Anyway, the nurse decided to change the catheter.

I asked Mom if she would like to take something, since this was obviously going to hurt.


I asked Mom if she would like a stick to bite on.

She did not appreciate the humor. I was lucky enough to get to hold the flashlight for the nurse, so I had a front and center seat for all of Mom's facial contortions of pain. Afterwards, the nurse asked if Mom was on fluid restriction. No. She asked why don't I make Mom drink some cranberry juice everyday. I answered that I don't make Mom do anything. The nurse asked Mom if she would drink a pint of cranberry juice that very night and Mom said she would love to. (What?? Would love to???)

I went to the kitchen, poured a pint jar of cranberry juice, tossed in a few ice cubes.

And added a small dose of morphine. Yes, it's true. I slipped my mother a mickey.

I had seen enough stupid pain for the day. I popped a straw in the glass and delivered Mom her happy juice. She dutifully drank half, then went to sleep and slept all night long. In the morning, even though the catheter had leaked some into her diaper, Mom was rested and happy. She reveled in the fact that she had indeed had no pain, evidenced by her peaceful night's sleep. And I just couldn't resist. I listened to her gloat about her lack of pain til I could listen no more, then I dropped the bomb. "Mom, I put morphine in your cranberry juice."

She was shocked. Maybe appalled. When I brought her water later in the day, she asked if it was "laced" and eyed me suspiciously. I said no, then told her that was the last time I would answer that question. I'm not going to lie to her, I'm just not going to answer. Mom asked, "What if I stop drinking?" I told her that was up to her.

I hope I haven't started a war. I probably should have said nothing. Too late now.

Sunday, March 25, 2012

Oh Boy

Today started off with a bang. I set my alarm for 7:00 in order to get a bathroom slot before my kids got ready for church. In the time it took for me to wash my face and brush my teeth, Mom rang. She was soaked from a leaky catheter night. When I peeled back Mom's soggy diaper, I saw the Big Evil had been joined by two more about half its size. The two newcomers were below, single file, angled a little toward Mom's midline. Sort of a chain of Evil. I felt them and they were hard like the Big Evil, pushing up the beautiful, delicate skin of Mom's abdomen. When Mom rolled back over after the cleaning, the two had sunk below the surface. But now we know they are there.

Oh boy.

On the positive side of this situation, the early ring got Gayle up and going. And go she did! I may have heard something that sounded like, "Wheeeeee! Wheeeeeee!" as she pulled out of the driveway and headed down the street. I'll have to ask my brother-in-law if he heard anything of that sort when she pulled into St. Louis around 9:00 tonight.

After getting Mom changed, and bringing her some hot water for a morning face wash, I scurried to the kitchen to brew some coffee. After half a cup and another change, I wheeled Mom out to her place at the front window. I asked if she wanted her standard breakfast, and the following conversation ensued.

Mom: Maybe just toast and an egg.

Gwen: No bacon?

Mom: Well, they say meat is the first thing to go when you lose your appetite. But I've hung onto my bacon and I eat chicken.

Gwen: So bacon doesn't sound good to you?

Mom: Oh yes! It does sound good!

Gwen: Then let's have bacon!

Mom: Okay.

Oh boy.

As Mom sat by the window, Dave came to pick up the kids for church. Mom said good-bye to them all. Shortly after eating breakfast, she was ready for another change and a nap. I napped too. When Mom woke up after an hour or so, I wheeled her back out to the window. She listened to her radio briefly, had me play an old voicemail for her, then asked a question.

Mom: Gwen, why does my phone say it is still Sunday?

Gwen: [thinking maybe there was an incongruent time stamp on the voicemail message] What do you mean? On your message? Or here on your phone?

Mom: Here on my phone.

Gwen: Uh, because it is Sunday.

Mom: Oh. [pause] That explains a lot.

Gwen: What do you mean?

Mom: Well, for one thing, Rush wasn't on. And I wondered if he was playing a trick, because sometimes he does that. But I watched the kids go off to church, didn't I? It just shows I'm really losing it!

Gwen: [after gathering self] Hey, Mom, that's a very common thing, to lose track of days. But when I told you what day it was, you remembered. Now, if you had insisted it was Monday, then I would know you were losing it!

Oh boy.

Mom didn't eat much for lunch, then had another good nap. Although she had numerous changes thoughout the day, they weren't very productive. She sat outside for the afternoon, had a very light dinner, and went to bed right after Hucakbee. Mom wanted her blue bucket on her bedside table because she was feeling a little nauseous.

Oh boy.

A few years ago when we got hit head on in the suburban, the little neighbor girls riding with us told me later that's what they heard me say just before impact:

Oh boy.

Saturday, March 24, 2012

Respite Day Seven

Today I:

*Scrubbed and bleached the shower
*Cheered for Nate at his select team football game
*Had a celebratory dinner with the fam at Five Guys
*Shopped at Old Navy with Meg and Ev
*Did a quick grocery store run to HEB
*Started dreading tomorrow when my sister leaves and I'm back on duty

I am so thankful for my seven days of respite! I am so not looking forward to watching my sister's little tan prius disappear around the corner at the end of the street, then going back into the house to shoulder the responsibility of Mom's care again. I cannot see the end from here.

To be truthful, I am like this every time I come back from a vacation. I don't like to work. I like to be on holiday. Why can't I always be on vacation? Whyyyy?


Of course I will put on my big girl panties and do what God has given me to do. I will, really I will. I know He will make me able. And there is a bright spot ahead. Tuesday night, my brother Loren will fly in for a week. He won't do diaper changes, but he does dishes and cleaning and yardwork and take-out. And he makes Mama very, very happy. He is her favorite drug.

So as my week of respite ends, huge huge huge thanks to my sister Gayle for her mission of mercy. You were my very own Visiting Angel. Be safe on your way home!

Respite Day Six

On this fine day I:

*Took Ev to school
*Worked with students
*Met Karis and Meg at the movies to watch the long-awaited and much-anticipated Hunger Games
*Picked Ev up from school
*Went out with Dave to celebrate our 23rd anniversary

I was hardly home, but Gayle said our plan was a success and the day more pleasant for all.

Thursday, March 22, 2012

Respite Day Five

Today I:

*Took Ev to school early so she could set up her science fair project
*Worked with students
*Said "It was so nice to see you this week. I don't know when I'll see you again," to two of my students.
*Met with the Brighter Vistas bosses about Independent Study program
*Ate Catherine's amazing homemade tortilla soup and chocolate cake on the porch in the sun with the BV bosses
*Stopped by HEB for groceries and special request of chocolate ice cream for sister Gayle
*Delivered groceries and ice cream to house
*Had a frustrating and unproductive conversation with Mom about pain, crankiness, and medication
*Picked up Ev from school
*Got eyebrows waxed with Ev
*Got first snowcones of the year with Ev (our little town has the best snowcones) (really, the best)
*Delivered snowcones to Mom, Nate, and Gayle
*Made stir fry for dinner
*Read last chapter of Call of the Wild to Ev

Nurse Christy never came. Or called. Mom remains cranky, and staunch in her opposition to any medicine. Mom was happy to see me midday, so I tried to talk with her about her "discomfort" (never pain!) and what we could do about it. She had just confessed that she was very "protective" of her catheter bag, and didn't "trust anyone with it." I suggested taking an anti-anxiety med so she wouldn't feel so, well, anxious. I wish I had a video. Mom shifted her eyes furtively back and forth and said defensively, "I don't think I need that yet." Gah.

Gayle has talked frankly with her, and I think Mom realizes she is following a fool's path, but her defense is, "I'm a sinner and I'll be a sinner until the day I die." Hmmm. Maybe I should try that out when I don't want to do something. You want me to wheel you outside? No, I don't want to and so I won't and my defense is I'm a sinner. Sound good?

Actually, like the good little passive-aggressives we are, Gayle and I have concocted a plan that we think will make everyone feel better. It involves a bit of subterfuge, but is harmless, and hopefully beneficial for all. We'll see.

Wednesday, March 21, 2012

Respite Day Four

Today I:

*Took Ev to school and Nate to educational therapy
*Got my hair cut in a cute new do by the crazy hair genius Kelly Marie
*Worked with students
*Stopped by the house and filled in so my sis could shower
*Met with Dave with a rental management guy and then with a realtor
*Picked up extra garbage tags from the city for all our extra garbage
*Sent my sis out for a walk in the lovely spring weather
*Tried a new gluten free egg-potato bake recipe for dinner (keeper)
*Washed a load of laundry

Great day for me! Hard day for my sister. I don't know how much longer she can hold up. To paraphrase my good friend Mr. Vox, she's not broken but you can see the cracks.

This morning as we got ready to head out, I kept checking on Mom to see if she was up and ready for coffee. Then I heard Ev saying, "Oh! Hello." Mom had climbed into her wheelchair and was trying to wheel out into the hallway. She told Nate, "I'm just an old lady looking for a cup of coffee."

And it sounds like the day just got better from there. Mom was pretty cranky crazy all day. She didn't nap. Did. Not. Nap. She read Hunger Games and fussed at Karis for getting her started.

Mom: That's what you do to my LIFE, Karis! No more books!

Karis: Sorry for bringing you JOY!

Mom: Joy???

Karis: What's better than staying up reading a good book?

Mom: GO!

When the lovely Cassandra came to shower Mom, there was a whole lot of shouting going on. It seems Mom's catheter tube hurt whenever it moved. Ouch. Of course, even though she was squealing in pain, Mom would not say it hurt. She said it was "uncomfortable." Cassandra suggested calling the nurse, but that idea was nixed. A few hours later, when I tried to talk to Mom about it, she said the discomfort in the shower was from her bony bottom on the hard shower chair. Um, no. Gayle heard it, Meg heard it and texted me, Cassandra witnessed. I don't know if Mom is forgetting (she is definitely losing her snap), or denying.

As we all (Nate, Gayle, Mom and I) sat down for dinner tonight, Mom said, "I am irascible!" I said, "Good word!" Then she prayed a sweet prayer as we all held hands, thanking God for her family and for the food and asking Him to cover her personality. Later as Gayle was getting her ready for bed, I heard Mom apologize for being "bellicose." Where does she come up with these words? I had to look them up!

My personal opinion is that Mom has a bladder infection and the pain is making her cranky. And crazy. Or maybe it's the Big Evil. I don't know. I put a call in to hospice to make sure Nurse Christy will come tomorrow. Mom can forgo antibiotics if she wants. She can forgo pain meds if she wants. She can forgo anti-anxiety meds if she wants. But please not all three. If the bladder infection is going to rage unchecked, we must do something for pain. Or if not something for pain, at least something to mellow her out. Please.

Tuesday, March 20, 2012

Respite Day Three

Today I:

Took Ev to school in the rain
Took Meg to college in the rain
Went to Target in the rain
Dropped purchases at home in the rain
Worked with two students in the main building because of the rain (I'm not complaining...we love the rain!)
Picked up Panera tomato soup for Mom (and a blueberry scone for me)
Worked with two more students
Picked up Ev
Went to Sam's with Ev
Fixed a big salad for dinner
Went to Chiller Bee with the fam
Went to Kroger with Meg
Filled the Suburban with gas (ow ow ow!)
Washed a load of laundry
Cooked up some chicken stock

While I was finishing up with my last student, Gayle texted to say Mom had asked her to call Nurse Christy. When Mom got up from her early afternoon nap, she told Gayle that it felt uncomfortable when she passed urine. Come to find out, this has been happening for some time; Mom doesn't know how long. She doesn't have a fever. She doesn't know that she wants to take antibiotics.

Mom's appetite has really fallen off the last two days. The Big Evil is growing. Mom let me outline It with sharpie today. She thinks she will die soon, and told Gayle she loves her and is glad she is here to help me when she (Mom) dies. I don't know. Mom is in bad shape, but she's had these thoughts before. I'm not so sure death will come when called, or come so easily. All we can do is watch and pray. And change a lot of diapers.

Monday, March 19, 2012

Why My Mom is Cooler than Your Mom

Respite Day Two

Today I:

*Resigned from Kohl's (it's a long story)
*Worked at Brighter Vistas
*Ran an errand for my sweet boss
*Got a cafe mocha and a blueberry scone from Starbucks (gift card!)
*Helped with pickleball party at Brighter Vistas
*Took Meg to follow-up appointment with our wonderful functional medicine doctor
*Cheered Ev on at middle school softball game

Tonight we are all exhausted, Mom included. She told Karis and Meg she loved them, and patted Ev sweetly as she passed. She is super thin, her blood pressure is low, and the little fluid in her catheter bag is dark, almost red. I think something's up.

Sunday, March 18, 2012

Respite Day One

Today I:

*Went to church (sat with Dave and Ev)
*Ate lunch at Vero (with Dave, Karis, Nate, and Ev)
*Ran errands (with Karis and Ev)
*Bought tickets for 12:30pm Friday showing of Hunger Games (!!!)
*Had frozen yogurt at Chiller Bee (with Dave, Karis, Meg, Nate, Ev, and a friend)
*Watched Once Upon a Time (with Ev)
*Discovered that driving skills get a little rusty if you don't use them very often (yikes!)

My sister Gayle is very tired. I am very refreshed. And looking forward to tomorrow!

Saturday, March 17, 2012

More Stuff Mom Says

"I've just lost my skizzamarink." (She explained this meant she was out of energy.)

"I have no idea what you are going to find in there." (Before diaper changes. I'm thinking, "I have a pretty good idea.")

"Oh! Look at that! Yummy, yummy!" (Every morning when I serve Mom exactly what she ordered for breakfast, the same thing every day.)

"You need a jar of jellybeans on the table."

"I didn't know the yard needed raking." (While Nate, Ev and I were raking the yard. Like she kept asking us to do.)

A Day in the Life

In anticipation of my sister's arrival and takeover of care, I thought it might be wise to make some notes about how Mom likes things done. That started me thinking about posting a typical day with Mom. I even made some notes throughout one day this week. And that made me realize a critical truth: There is no typical day. There is no schedule. There is no routine, other than listening for the bell.

Mom is clearly getting more worn down. My siblings notice it on the phone. I see it in the effort it takes for Mom to transfer from bed to wheelchair, from wheelchair to red chair, from red chair to wheelchair, from wheelchair to bed. I see it in Mom's ever-chainging schedule. Last night, Mom's catheter did not leak at all, so she slept from 9:30p.m. to 8:30a.m. So far our day has looked like this:

8:30--Coffee, hot water to wash face, empty cath bag, change diaper
9:00--Wheel Mom to front window, cook breakfast, Mom eats
10:00--Mom asks for change, stays in bed for nap
11:30--Change diaper, wheel Mom to front window, fix lunch, Mom eats
12:45--Wheel Mom to t.v. for 1:00 program
1:30--Serve ice cream, change diaper, Mom stays in bed for nap
3:00--Change diaper, wheel Mom to driveway, ice water and snack

I anticipate a 5:00ish change and nap, then dinner, Huckabee, and bedtime. Nighttime is a toss-up. If the catheter is leaking, then Mom will ring about three times throughout the night for changes. If not leaking, she usually does not ring until morning.

And there you have it, a day in the life. Today anyway.

Editing to Add: Just to show that my predictions are useless, Mom stayed outside until 6:00. Came in for a change, wanted a nap, but heard Karis was home with a McDonald's bag for her so she got back up to eat. Huckabee at 7:00? Who knows?

Friday, March 16, 2012

The Cavalry Is Coming

Tomorrow morning, my sister Gayle will climb into her trusty tan prius (aptly named Sandy) and turn her tires toward Texas. When I asked if she had definitive travel plans, she said she planned to leave in the morning and drive like crazy. Sounds like a plan to me.

Gayle is making the trek (my mom used to call the drive just from Oklahoma to Texas "The Trail of Tears") in order to care for Mom and give me a break. I will cart my kids around, go to appointments, work with my students at Brighter Vistas, get my hair cut, run errands, do the grocery shopping, maybe have lunch with a friend, maybe go on a date with my husband. I'm hoping Dave will move back to the lake house for the week and use it as a study week for his doctoral projects due this summer. The kids and I will stay at Mom's, and with a little shuffling Gayle will fit right in. I'm also hoping Dave and I can meet with a rental management company and a realtor to discuss our options for the lake house.

I'm looking forward to a break from caring for Mom full-time. Mom is looking forward to it too! I'm not sure if Gayle is looking forward to her week here or not. Nonetheless, she's coming. The cavalry is coming.

*happy sigh*

You know the kind of friends who call you when they are headed to the grocery store to see if you need anything, then stop by to deliver some pretty lamps they are giving to your girls, then stay to visit a while, then offer to pick up dinner from the local catholic church lenten fish fry, then make summer spanish wine to go with dinner, then stay and eat out of styrofoam containers at your table with you and your mom?

Yeah, that's what I'm talking about.

Thursday, March 15, 2012

House Call

This morning the hospice doctor called Mom's cell phone and asked if he could come visit her. She said yes and he said he would be over in thirty minutes or so. This brought about a flurry of activity as I was still in my jammies, waiting for Mom to have her morning nap so I could shower and dress. For her part, Mom had been sitting rebelliously in a dirty diaper, only telling me after the phone call. I wheeled her back for a change that was more of an invasive scraping due to the ripening that had occurred, then Mom wanted me to change her gown and her sheets as well. And brush her teeth! Happily, I was also able to dress myself before the doctor's arrival.

This particular doctor is so good with Mom. And she loves him. How much does Mom love him? When she realized he would be arriving during "El Rushbo," she hardly gave it a second thought. How about that? I first met him when he did the hospital pedi checks for each of our babies. He has a good name as a pro-life doctor in the community. Dad knew him and his wife years ago, when our church helped start another church south county. When I was going through Dad's papers, I found some notecards about church leadership and a list of names including our hospice doctor. I gave those to him today.

Anyway, the good doctor came in the front door and pulled up a chair next to mom at the window. He talked with her, listened to her, checked her out a bit. After feeling around on Mom's abdomen, he discarded his previous liver theory and said he thinks it is a tumor from her colon or small intestine. He thinks the little nodules are metastasized lymph nodes. The Big Evil, confirmed.

Mom asked her now-standard unanswerable questions: What happens next? How long will this take? How will I go? The doctor talked to her about keeping comfortable and spending her energy on things she enjoys. He explained that even a twinge of pain uses energy in our response. He cautioned Mom about being a "martyr" or "stoic" or even just "tough" concerning pain and encouraged her to use pain medication when needed. Mom said, "You mean that medicine?" "Yes," he said, "that medicine."

Before he left, the doctor asked Mom if he could pray with her. He teasingly asked if he could pray for healing and Mom screeched, "No!" Then the hospice doctor prayed a sweet prayer over Mom. It was a lovely house call. We could not ask for a better doctor/patient relationship. I am thankful.

Wednesday, March 14, 2012


Nurse Christy came Monday. She had never seen anything like the Big Evil. She noticed some small nodules around it as well. She asked the hospice doctor about it and he thinks it could be Mom's liver, based on location, size, and shape. He will likely be out next week to have a look.

I asked Christy about a dust bunny looking thing in Mom's catheter tube and she explained it was "sediment." Then she noticed that there was a lot of sediment in Mom's bag. This could indicate a urinary tract infection, but Mom of course is not interested in antibiotics.

Mom seems to be having increasing trouble with breathing. Last night she rang for me to make sure her oxygen concentrator was working. This morning she asked, "Can you hear my breathing?" and was very eager to have her oxygen once she was settled in front of her favorite window. Christy told us the next step would be to use some morphine to help with Mom's breathing. Mom listened and nodded. We'll see if she is willing when the time comes.

Sometimes You Can't Make It On Your Own

For the past three weeks, I've been pretty much housebound with my mom. Oh, I've zipped down the street to HEB during one of her naps (and she woke up needing a change before I got back) and I've sneaked out after she went to bed to hear our friend Shellee sing. But for the most part, I've been back at the house. How does this work? I have incredible friends and an amazing family.

Here's a brain dump list of how my friends have graciously served:

*Grocery trips
*Sam's trips
*Pharmacy pick-up
*Panera runs for soup and bread
*KFC delivery
*"I'm out, what can I get you?" calls
*Pick up and delivery of kids
*Poor abandoned kitty care
*Mail pick up
*Small group dinner
*Houston Rodeo ride and escort for three girls
*Orthodontist appointment
*Encouragement through texts, cards, e-mails, facebook, calls
*Homemade soup to order for my mom
*Covering for me at work

And my amazing husband and four kids:

*Endless fetch and step
*Goodwill and sincere interest in Grandma's and each other's and my welfare
*Dave has taken over coordination of kid transport to school, educational therapy, dual credit classes, football practice and games, church, etc.
*Happy responses to Grandma's every whim
*Appropriate smiling and nodding where needed
*Food prep
*Cheerful flexibility in cramped living arrangements and sharing one bathroom (now expanded to two)
*Tending to lake house

Plus extended family:

*Dave's sweet Mom baking treats for us, including gluten-free for Meg
*Upcoming visits from siblings
*Encouragement and support

And wrapped around it all, I know so many are lifting us in prayer. I can't say "thank you" enough.

Sunday, March 11, 2012

The Big Evil

We may have seen the Big Evil this morning. When I changed Mom before breakfast, there was a raised lump on her belly, to the right and slightly lower than her belly button. It measures about 3"x2" and Mom says it is not painful, although I certainly didn't prod or poke. We've been on something of a changing marathon, with bowel movements at least every couple of hours yesterday, transitioning to a leaking catheter (or imagining a leaking catheter) every couple of hours last night, and this thing was definitely not visible until this morning.

Mom is happy. I am not.

I was really hoping Mom's heart or lungs would give out before the cancer took over her colon. I feel like we had a preview of intestinal blockage last week with Meg. It was not nice, truly something I hope to never see again. Of course, this could be something else, not the Big Evil. We'll see if it sticks around.

Saturday, March 10, 2012

Muy Caliente

Hot food has always been a big deal to my mom. She used to heat the serving dishes and even individual plates and bowls in the oven before a family meal. Growing up, Mom would ring a little bell when dinner was ready and everyone was expected to drop what they were doing and come straight away to the table. Mom has been known to start eating immediately without waiting for other people to gather or a prayer of thanks. The woman likes her food hot!

My family, on the other hand, has been trained to enjoy room temperature (or colder) fare. On the rare occasion he receives piping hot food, Dave burns his mouth almost without fail. (He also gets the stray bone without fail, but that's another story.) My kids blow on each fork- or spoonful before it enters their mouths. When my children were babies and teething, I would give them waffles and pancakes straight from the freezer to numb the pain. They still to this day will eat food (fruit, waffles, pancakes, cookies) straight from the freezer. Hot food, not such a big deal.

Needless to say, we are all amazed at Mom's penchant for burning hot food. If I microwave a bowl of soup until it is boiling only around the edges, then stir and deliver to Mom, she will send it back to be reheated. Seriously, it must be boiling all the way through, then delivered post haste. Today I heated a small previously baked potato for Mom's lunch. I cut it open for even heating, then microwaved for two minutes in Mom's antique super strong microwave. (Who else would have a still functioning microwave from the 80's? I tell the kids not to stand in front of it when it's on.) The potato burned my fingers as I loaded in butter . I quickly topped it with grated cheese, threw some salad on the plate, and took it to Mom in the living room.

Nope. Not hot enough.

I told her I had heated it for two minutes. She asked for two minutes more. As I carried what was once a potato, now molten lava, back to Mom, I wondered if this is associated with old age. Are her senses dulling and so she wants her food not just piping, but inferno hot? Sort of like turning up the volume when it gets hard to hear. I dunno. I googled but didn't find anything. Evidently, most 91yos are being spoon- or tube-fed, not sending their food back to the kitchen to be superheated. Go figure.

Friday, March 9, 2012


This song is playing in my head this afternoon.


Last Sunday I wrote about Mom feeling pitiful. Today was something totally different.

She's tired. So tired. Mom napped in bed after having breakfast by the front window. She napped after lunch in the big red chair in front of the fire. Then she napped in bed after waking up in the red chair and needing a change.

During the aforementioned mid-nap change, Mom accidentally pulled on her catheter. It is colder today, so Mom had requested her fleece jammie top and pants. The substitute shower aide had threaded the catheter down through her pants leg. Mom hasn't worn pants with her catheter since that first one that malfunctioned (hmmm...connection?). She had pulled down her jammie pants in bed while I went for a tub of warm water and paper towels (her preferred kind of "wipes") and was stretching the tubing. Mom knew something was stinging, but didn't know she was pulling her cath until I came back and helped her.

She was concerned she had messed up the catheter and I told her I didn't know, we would have to wait and see. She thought she ought to take her jammie pants off because she didn't think she could remember not to pull them down without me. She said, "I forget things." I assured her we could work it out and that if the catheter was messed up, we could see the weekend nurse Mary.

Then Mom had to endure a scrub down to get her skin clean from the dirty diaper and I think it was all too much. She made a little whimper as she lay back in bed and I asked what was wrong. She said in her teary voice, "I just want to go." And then she sobbed and sobbed.

I have never seen my mom wracked with emotion. Ever.

I helplessly patted her hand and murmured things like, "I know you do, Mama," and "I'm sorry, Mama." What else is there to say?

In a few moments, Mom was back to her stoic self. She wanted to be covered with her sheet and blanket. She wanted her rice bag heated. She said apologetically, "It just overcomes me sometimes."

Me too, Mama. Me too.

Tuesday, March 6, 2012

Whaddya Know

Here is charming video about the history of Keep Calm and Carry On.


Last Friday, I needed to take Meg for her follow-up appointment after her hospital stay. I asked Dave what he thought about taking her, and he felt like I needed to go. Of course, he was right; I just didn't know what to do about Mom. Calling someone to sit with her is touchy enough, because it has to be just the right person, only you have to guess who the right person is, because Mom doesn't communicate much as a habit about things like that. Add into that mix of confusion the fact that Mom needs her diaper changed and is not comfortable with anyone except yours truly or a hospice worker. Oh boy.

But God, like the awesome all-knowing gracious God He is, brought to mind an old friend of Mom's who is also a nurse. I called Mom's friend and she immediately said, "Yes!" (I should add this was arranged on Thursday afternoon, the day before.) Then I went in to tell Mom.

Gwen: Mom, I need to take Meg to a doctor appointment tomorrow. So I called the only person I could think of that you would be comfortable with changing you. I called _____________ .

Mom: [nods slowly] You are right! I would be comfortable with ___________, because she is a professional.

Whew! Way to go, God!

So on Friday, Meg and I left the house around 10:30 after our kind friend arrived. Mom was sleeping, knowing that her friend would be there when she woke. We had to wait quite a while at the doctor's office, then our wonderful functional medicine doctor spent a lot of time talking with us. I am so thankful for her! She identified what had caused Meg's ileus and gave us concrete steps to take for healing and prevention. (If anyone has trouble with celiac or with ileus, please feel free to ask me questions. I'll spare everyone else the gory details here. I'm hoping Meg will blog about it, but it is her story to tell.)

Of course, we had our phones silenced during the doctor visit. As we walked to the front to get supplements and leave, Meg got a phone call from Karis. Evidently, Karis had come home from class to find a sad Grandma.

Karis: Hi, Grandma!

Grandma: [pitifully] Oh, hello, Karis. [looks downcast]

Karis: What's wrong?

Grandma: Oh, you haven't heard?

Karis: Well, I know what's going on with you, but I meant why're you looking so--

Grandma: ...dejected?!

Karis said Grandma was asking when we were coming back. It was lunchtime, but she wanted to wait for me to get her food. She wanted her friend to go home and me to come back. Stat.

So here's the paradox: Now Mom wants me to schedule with the hospice volunteers to come once a week and give me a break. A volunteer will stay for up to four hours. Mom is very concerned that I am here all the time, caring for her. She wants me to have a break, which is very thoughtful.

But is she going to be pitiful when I am gone?

What is even up with that?

Sunday, March 4, 2012


Mom seems off today. As everyone was getting ready for church this morning, I heard one of my children stop by Mom's room. It was about 7:45 a.m. and Mom had not rung for me. She was out of bed, sitting in her wheelchair.

Child: [brightly] Oh, hi Grandma! Would you like to go out to the front window?

Mom: [piteously] No, I'm just waiting for my coffee.

And that's pretty much how she has been today. Pitiful. I don't know why.

Maybe she is feeling physically especially bad today. Last night was the first time her blood pressure was too low for lasix, so maybe she is feeling the effects of extra fluid. Or a host of other symptoms that she might not identify or vocalize. Mom has such a high pain threshold, she might be feeling a lot of pain and not recognize it.

Maybe she is unhappy to be lingering. I know she has lost track of time, and thought I had been tending to her for six weeks. I told her it hadn't even been two weeks yet and she was surprised. I know she hates that she has to have her diaper changed. I know she is concerned about me missing work.

Maybe it's just that we are all here. In her space. All the time. I do still try to be as invisible as possible, and only speak when spoken to (hey, kind of like my childhood), but I'm sure Mom is painfully aware that I am always here.

I tried to explain to Dave that Mom seemed weird. I had a hard time putting it into words. She seems small, and spacey. For example, when Mom needed to move from the red chair to the wheelchair in order to go back to the bedroom for a change, she didn't take her oxygen off. I asked if she wanted to keep it on and she said no, that wouldn't travel well. But then she just sat and didn't take her oxygen off. She seems checked-out.

After I lay down during Mom's afternoon nap, it occurred to me that Mom seems depressed. I know that is very common among the elderly and the infirm, but I don't know what to do about it. Mom did let me take her for a walk up and down the street again today, so that got her out and in the sunshine. She listened to a folk music cd from a friend of ours, and listened to one of Dave's sermons. She still loves her food, but is critical as always. So it is not like Mom has dropped all the things she has been interested in.

But she went to nap halfway through her Sunday program on Fox Network. And she didn't want to sit out on the porch, even though it was 72 degrees. She's not drinking her water and she's talking in an extra high-pitched voice. I just feel like something is weird, something is off. I'll ask Nurse Christy about it tomorrow.

Friday, March 2, 2012

Basin and Towel

Wednesday was kind of a crazy-cranky day for Mom.

I put too much butter on her toast.
Her soup was not hot enough.
She wouldn't tell me/couldn't tell when she needed a change.
The aide didn't come when Mom wanted.
And so on.

I thought maybe it was just my sleep deprivation that was coloring my perspective, but when Nate came home late morning, he noticed it too. We tried to be scarcer than usual, and stay out of Mom's way. By 2:00, she was muttering about exacting her revenge on the aide. (I wish I could remember the name Mom pulled out here. It wasn't even close to Cassandra or even Carissa. I'll have to ask Nate if he remembers.)

Gwen: What do you mean?

Mom: I'm filling my britches!

Well, Cassandra didn't come right then, so the revenge was exacted on me and then Mom had a nap. When the lovely Cassandra did appear late afternoon, Mom was pretty crusty with her. She refused a shower so late in the day and asked for a bed bath. When Cassandra agreed, Mom exclaimed, "You're not going to make me take a shower?" Cassandra assured Mom that she gets to choose what she wants and went about her business. I left them to it.

After she finished, Cassandra wheeled Mom out and left. And Mom was a different person. She told me, "Well, Carissa sure turned me around. Do you know what she did? She washed my feet! She actually put my feet in a bucket of water and washed them! You don't know how good a bucket of water feels instead of just a washcloth. I looked at her and said, 'You are like Jesus.'"


New Happy Place

The weather has been incredibly warm this week. Mom has enjoyed sitting out on the front porch, watching the daily openings of springtime in Texas. She has even had a lovely reunion with Mittens the cat. You can see her behind Mom's wheelchair wheel. Today, Mom let me push her around the block to admire azaleas of every hue, redbud, spirea, tulip magnolia, and camellias.

When she is not outside on the front porch, Mom's secondary happy place is the front window. From that vantage point, she can look at her new landscaping out the front door or out the front window on the neighborhood. She likes that the mailman waves to her. And she can watch Nate cut down one wretched blooming wax leaf ligustrum after another. Plus she can hang out with her new best friend, the oxygen concentrator. Yes, Mom took Christy's advice and is wearing oxygen most all the time now. It really makes a difference in the way she feels, and that's what we're all about.

Oh My Gosh

So, Mom got fixed up by the Weekend Wonder Nurse. Mom's regular hospice nurse did not come Monday, which surprised me. In the past, if we had an event over the weekend, Christy has arrived the following Monday to check on Mom. She came Tuesday and checked Mom over. Mom was very short of breath and Christy recommended using oxygen all the time. Mom was not ready to try that, even though the oxygen while sleeping makes such a difference. Although she was on day four of lasix, Mom still had a noticeable amount of edema. Christy called the hospice doctor, who concluded that Mom's swelling/edema/pooling will not go away at this point. We will continue to manage it with lasix as long as Mom's blood pressure and potassium hold out. He also prescribed a potassium supplement. The options for that were horse pill or liquid suspension. We chose liquid, and found that it tastes so awful Mom won't take it. Alrighty then, we'll just concentrate on foods high in potassium. Anyone care for a banana?

Tuesday night, Meg's back hurt. Then her stomach hurt. Then it really hurt and she felt nauseous. I figured she had some stomach bug and would feel better after she threw up. But she didn't feel better. Meg's symptoms continued unabated, even with phenergan. The stomach and back pain was constant, sometimes stabbing. Meg was crying and confused. My first clue that this was turning into an emergency was when Meg asked, "Why are they doing that?" Her hands were drawing up out of her control. Shortly after that her eyes began crossing and rolling and I knew it was time to go.

Dave stayed home with Mom and the other kids (all asleep), and I drove Meg to the emergency room. I am not fond of the emergency room. Meg has never been. When we arrived, I felt a little silly explaining we were there because my daughter was throwing up, and only for the past few hours. Happily (?), Meg must have looked wan enough that they sat her right down to take vitals. No fever, but her blood pressure was 80-something over 50-something. Yikes! We had a very short wait, then were whisked back to an er room and they started an iv on Meg. Meg looked over at me and asked, "When are you going to sleep?" Sweet girl.

Soon they added morphine and something for nausea to the iv. Inexplicably, they gave her something by mouth for nausea. Of course, she gave it right back shortly afterwards. Her O2 levels were low, so they gave her oxygen. Meg said, "I'm like Grandma. I have oxygen and morphine." The doctor ordered a CT scan, which showed inflammation in Meg's bowels. There was concern of an obstruction. They wanted to keep Meg for the rest of the night and next day to observe and stabilize. Again, we didn't have to wait long before we were whisked to the pediatric wing of the hospital. Meg had a nice room with a nice nurse and by that time was very comfortable. I went home so I would be there for Mom when she woke up, and tag teamed with Dave, who spent the wee hours and the day with Meg at the hospital.

It turns out there was no obstruction and no surgery was needed. Meg's bowels "went to sleep" (correct medical term: ileus) and her colon got backed up. Then they "woke up," things started moving again, and we had one worn out girl at home Wednesday night.

Oh my gosh.