Sunday

Trying out the new hammock chair for the first time this morning. Feet propped in the wheelchair, eating pretzel thins, reading Nate's Tim Tebow book. I think she likes it!

(Thanks to Perry Lee for the labor-intensive install yesterday!)

Medicinal Logic

Gwen: Hey, Mom. I forgot about your blue pill. It's three times a day. Do you want to take it?

Mom: Oh, yeah. Three times a day for three days?

Gwen: No, it's not the antibiotic. It's the pill that helps with the stinging. [Mom still won't say something hurts. It "stings."]

Mom: [holds pill and ponders] I don't think I need it.

Gwen: Because the one you took this morning worked and it doesn't sting???

Ev: [silently flees down the hallway]

Mom: [swallows pill] Don't argue with your nurse.

Postscript: It only worked once. No blue pill taken at bedtime. I told Mom it's good she's never been psychotic, because she's the kind of person who would take her anti-psychotic meds, feel better as a result, then stop taking them. She said, "Hmph."

It's 10:00am...Is the day over yet?

Neighbors and blue pee and epic poop, oh my.

This morning when I opened the curtains and turned off the porch light, I saw an unusual sight. Our dear neighbor was sitting in her side yard in the grass with her jammies on. She had her granddaughter's little dog on a leash. I went outside to check on her and as I got closer, I could see she had cut her cheek. I don't know what happened, but she was able to tell me how to get her up, and she was able to walk inside. She wouldn't let me help her in any other way, so I went back to my mom's and tried to figure out how to contact my neighbor's daughter. My sisters didn't have her number. I decided to message her on facebook and thank God, when I opened it up, she had sent me her phone number in a previous message. All appears to be okay. So sad to see the inevitable struggles and setbacks that come with age.

Back to our regularly scheduled morning routine. I took Mom's coffee in and noticed the fluid in her catheter bag was super dark. She had felt really bad yesterday. So bad that she agreed to take medicine for uti pain and antibiotics. So bad that she said, "It would be good if I could die tonight." When I asked her why, she explained, "I asked God to give me joy and I couldn't come up with any joy today." Poor Mama. I told her I would pray for a better day, whether in heaven or not. But here she was awake for another day with really dark pee. In the unlit bedroom, it looked black. When I turned on the light, I saw it was blue and remembered Nurse Christy telling me the pain medication for uti turns your pee blue. Whew!

Mom enjoyed her breakfast of a whole piece of toast and an egg over easy. She said, "I'm HUNGRY!" Initially, she only wanted a 1/2 cup of coffee, but when she smelled a fresh pot, she asked for more. And she stayed up til 9:30am, reading Nate's Tim Tebow book. She asked me if Nate is drinking protein shakes. :) Finally, when she couldn't stay awake any longer, Mom rang for me to wheel her back to her room for a change and a nap. She required a considerable amount of clean up. And then poor Mom kept going. And going. And going. It was an epic, 30 minute diaper change. I don't know where she was keeping it all! Seriously, epic.

So now I'm wondering, can I just be done for the day?

Different Day

7:30-9:00 Mama's up, refuses oxygen, eats normal breakfast of egg over easy, half piece toast, slice bacon

9:00-10:30 Nap with oxygen, requested "a drop of that medicine" (morphine)

10:30-11:30 Up, refused oxygen, requested tuna sandwich, ate 1/4

11:30-12:45 Nap with oxygen

12:45-2:45 Up, not hungry, ate some pretzels, refused oxygen (Karis persuaded Nate to bring oxygen anyway and Mom used it)

2:45-3:45 Nap with oxygen

3:45-5:30 Up, refused oxygen, not hungry, asked Nate for and ate small scoop ice cream/peaches

5:30-6:35 Nap with oxygen

6:35-8:00 Up, refused oxygen, ate 1/2 c. broth, asked for nausea medication

8:00 Bed with oxygen

Not looking so good today.

Mom began the day by rereading her hospice pamphlet. I'm sure that literature is helpful to many people, but it has long been a source of obsession for Mom. Sometimes I think she really wants to have symptoms, like losing her appetite, because she has read it is a sign of impending death. She doesn't want her oxygen, because she thinks it dries her mouth out. Which it very well could, but it also could be that she only drinks about a cup of water each day. At the same time, she is concerned about shortness of breath. "How do I know if I'm having difficulty breathing?"

She really, really wants to be done here. As my brother Loren said this morning, "Poor ma never expected this. Seems there is something she can't do."

Sign?

Okay, now this might make me think the end is near:

Mom's food of choice for the last two days? Hot dogs.

Yup, hot dogs. Oscar Mayer dogs that Karis grilled for Nate's party Sunday. Served up on a white store brand bun and layered with ketchup and mustard.

Roast beef? No.
Roasted garlic potatoes? No.
Roasted broccoli and cauliflower? No.
Sticky chicken? No.
Rice pilaf? No.
Hot dog? Oooooo!

On second thought, maybe this is an indicator of the end of the entire world.

Incommunicado

This morning, as always, my alarm woke me at 7:00. I went to the kitchen, as always, to make the coffee. While the french press worked its magic for five minutes, as always, I opened the curtains and the front door to make ready Mom's spot by the window. When the timer beeped, as always, I poured Mom her half cup of coffee and took it, covered with a saucer to retain the near-boiling heat, to her room. As I set Mom's favorite cup on her bedside table, as always, she greeted me with a surprised, "Gwen!"

This morning, I laughed and asked, "Why are you surprised to see me each morning?" She responded, "I want a diaper change!" Which doesn't really answer my question, but on we go. I discovered the reason Mom was so eager for a change was a soaking wet diaper from a leaking catheter. Poor Mom! I told her I wished she had rung her bell for me, that I had just been making coffee and opening curtains and could have come much sooner. She demurred, saying she knew I was the mother of four and had all of them up and was busy getting them ready to go. I pointed out that Ev was the only child up and reminded Mom that she dresses herself, gets her own breakfast, and makes her own lunch. I don't know if I convinced her.

Mom commented that the cardinals started visiting the bird feeder Loren hung outside her window at 6:30. I asked Mom how long she had been awake. She said she thought she had woken up at 6:30. It makes me sad that she had to lay there in a soaked diaper for an hour. It handicaps me in the role of caregiver when Mom won't ask for what she needs. And I don't know how to get it across that we all understand we are here in this house for the sole purpose of caring for her, not for our own convenience or benefit.

Conversations with Mom

Gwen: [to Karis who is texting a friend] Tell him arguing and love are not mutually exclusive!

Mom: Oh, I think they are.

Gwen: You think arguing and love are mutually exclusive?

Mom: Well, how could you have both?

Gwen: Are you arguing with me?

Mom: Yes.

Gwen: Do you love me?

Mom: Yes.

Gwen: So they are not mutually exclusive!

Mom: Right!

Right.

Bad News, Good News

The bad news is Mom is sleeping more and more. She started taking four naps a day when Ruth was here and now it is the new normal. She can hardly stay awake for two hours at a time. Last night she was so tired that she went to bed at 6:15. 6:15! Tonight she managed to stay up until 7:30.

The good news is Mom no longer wants to watch Hannity!

Say What You Need to Say, Part Deux

While Ruth was here, Mom's catheter really acted up. By the end of her stay, it was leaking all night, every night. Aggravating and exhausting for both Ruth and Mom. For the past two nights though it has worked and worked well. So when Nurse Christy came armed with fresh catheters today, Mom seemed a little hesitant about the change. Christy said although it was time for a change, Mom could wait if she wanted. Mom asked what I thought. I reminded her of the last time we waited and the ensuing bladder infection. Mom chose to change the catheter today.

The change seemed to go smoothly, although Christy was concerned that the catheter did not begin to draw immediately. She went on to see her next patient with the agreement that I would call if it didn't work. It didn't work. I called. She couldn't come back til the end of the day. Meanwhile, the lovely Cassandra/Carissa/Ceturah arrived. Mom wanted to shower, and as she stepped into the tub the catheter just fell out. Fell out. It was then that Mom told Cassandra, "I knew she didn't get it in." What???

I was standing in Karis and Meg's room as Cassandra related this information to me. She said Mom didn't tell Christy that the catheter wasn't in because she "didn't want to hurt her feelings." What??? Karis laughed and asked, "Since when?" (Love her.) I mean, really, concern for others' feelings has never been an overriding restriction for my mom! And what a time for it to kick in.

Cassandra made some calls and arranged for another nurse to come and fix Mom up with another catheter. This one works. Poor Mom! I'm sure she is sore and worn out from all that invasive work. I hope this one is a keeper.

And once again, I repeat my mantra:

What do I think?
What do I feel?
What do I want?
Say it!

Just When You Thought It was Safe to Look in the Bag...

Fair Warning: Not for the squeamish or faint of heart.

Mom has a little orange bag. It's cute. It has Snoopy on it. Mom uses it to tote her radio and headphones, bell, cell phone, and miscellaneous other items. Mom is very attached to the bag. She takes it everywhere with her. Going to sit by the window? Take the bag. Going for a nap? Take the bag. Going outside? Take the bag. Going to watch your program? Take the bag. You get the idea.



Mom has a crusty growth on her arm. It is not cute. It is the kind of thing that makes little children afraid of old people. It has sort of a circular area about 1/2 inch around, and out of that sticks a cone shaped growth about 1/4 inch high. I'm saying it's nasty. In her days of getting out and about, Mom had the doctor cut it off. It grew back. So now, Mom picks at it. As she sits by the window or lies in bed, she squeezes the raised part and twists it. It gives me the shivers, but what can I do?

Today after her morning nap, Mom showed me her arm and said, "Hey, Gwen. It's gone." Sure enough, the cone-shaped growth was gone. Mom said, "It just fell off." Uh, no. I countered with, "It didn't fall off! You picked at it until it came off." Mom said, "Well, it was falling off. I just helped it along." And she's very optimistic about it. "When the doc cut it off, it came back. I don't think it will come back this time." All well and good.

Then it occurred to me to ask, "Where is it now?"

And Mom answered, "I believe it's in my bag."

Cue the horror movie music.

Goodbye, Sister

I was just loading up the dishwasher and put my sister's water glass in and it made me sad. Because she's gone. Ruthie left today after tucking Mom in for her morning nap. Ruth took such good care of Mom. They really had a great week together. Ruth tended to Mom so gently and sweetly. She played her violin. She sat and visited with Mom by the window and outside. Once, Ruth got Mom set up outside and came in the house. Mom called her on her cell phone and said, "Come sit in the lawn chair!" So sweet. Ruth was a trouper and Mom was on her best behavior.

I ran errands galore, took Meg to the doctor, got two fillings and a root canal plus a cleaning, worked with Nate to sort through his room at the lake house (*sob*), carted people hither and yon, took the dogs to the vet, and went on two dates with my husband. I am thankful for the change of pace and scenery. I am happy to take care of Mom, but there is definitely a sense of putting my head down and getting back to it.

Thank you, Ruth, for the refreshing break! I miss you already.

Respite Repeat

Who knew I would be at this so long as to need another respite? Here we are, approaching the two month mark of Mom's dependence and my sister Ruth has come to tend to Mom this week. I am so thankful for Ruth's willingness and her capable, loving care for Mom.

For a while, it seemed Mom had reached a plateau, neither declining nor improving. But now she is showing signs again of wearing down, wearing out. She is headed toward four naps each day. It seems when she gets into bed for a change, her bed "feels so good," she decides to stay in it. This could be also connected to getting sore from sitting and sleeping on her back. Tonight Mom asked Ruth to prop her on her side. Mom did not verbalize discomfort (and of course never pain), but something must be up to make her move. And she's getting a new catheter tomorrow, a week ahead of schedule, sort of at her request. I'm guessing the old one must be painful, if Mom agrees to a catheter change out. That's what we have to do, guess, because Mom won't/can't/isn't aware enough to tell us if it hurts.

For my part, I have appointments scheduled every day this week. This morning, after taking Ev to school and Nate to educational therapy, Meg and I headed over for a follow-up with our wonderful functional medicine doctor. Dr. Caldwell is not satisfied with Meg's lack of healing so far, so she initiated a "full court press," which basically means a lot of nasty supplements to choke down for the next month. After receiving that bit of news, we picked up pet food, bought new tennies, and shopped at Sam's. We picked up Nate and went to the lake house. I worked in the garage until 3:30, then we cheered Ev on at her last softball game, and headed home.

A funny thing, my respite has not gone unnoticed by our credit union. They called this afternoon to make sure I was the one behind the sudden flurry of debit card activity yesterday and today. Nice of them to check. I thought about explaining my erratic spending habits, but just thanked the nice lady and hung up. And that won't be all. Tomorrow I'm getting a root canal, followed by two fillings Wednesday, a long overdue cleaning Thursday, then vet appointments for both dogs Friday. And somewhere in there, Dave and I want to go see Blue Like Jazz.

Whew. This respite is wearing me out.

Housekeeping

It might be time to vacuum when your mom thinks her catheter has leaked onto the carpet and it turns out to be a stray piece of yellow cellophane easter grass.

Tale of Two Days

Subtitle: You Just Never Know

Easter was a lovely day at our/Grandma's house. Everyone except Mom and I went off to Sunday School and church. Mom had a quiet morning and I was able to put a roast in the crock pot, start jello salad, and prep vegetables. The kids came home after church and helped me finish up. (The platter on the left is Mom's pattern. The platter on the right is the only other Blue Ridge Pottery with the same color border as Mom's. Gayle found it for me. Thank you sister!)

By the time Dave got home, Mom had watched her 1:00 program and lunch was ready. Everything went so smoothly and Mom was so happy, I wished I had invited Dave's parents to join us. After Mom's nap, she enjoyed her Easter basket out on the driveway. Dave hid the kids' baskets and they colored eggs. It was such a nice day!

Brimming with optimism over our excellent Easter day, I awoke Monday morning ready to celebrate Nate's birthday. What is that saying about counting your chicks before they hatch? Mom had a hard day. She needed a diaper change every hour, sometimes continuing the deed during the change. At about the fifth change, I realized my staying up late to reread The Hunger Games had not been such a good idea. Mom didn't sleep well during her naps, which didn't give me a chance to do much of anything other than answer the bell. I'm so thankful I had Meg and Ev home from school! They essentially took over the kitchen, making Nate breakfast, baking gluten free cupcakes, handling clean up. They also wrapped presents and provided general cheer.

Ev and I made a mad dash up the street to the grocery during Mom's last nap of the day for some birthday dinner supplies and candles. Dinner was late, but at least it happened. Mom asked for her dinner at 6:00 as usual, and then joined us for Nate's birthday dinner at 7:30. She watched Hannity at 8:00, then came to the table again for cupcakes, ice cream, and presents at 9:00 when Karis came home from work. Happy Birthday, Nate!

Oh my. It makes me tired just thinking about it. I think I'll go have some more coffee, and thank God that today seems to be an easier day. And that my sister Ruth is coming Saturday.

Feeding the Monster

Mom is skin and bones. She is too weak to stand on the scale, so I can only imagine how much weight she has lost. She was around 110 in January. We thought she was thin then, but when Loren and I looked at pictures from the birthday bash, we realized Mom looked robust compared to now. This past week, Mom looked at her legs and said, "I've seen these legs before. On starving people in Africa." I didn't tell her that I had been thinking holocaust.

So it is amazing to me the amount of food this woman puts away every day! She so wants to lose her appetite, because that is in her hospice literature as a sign of approaching death. She pores over that literature and anticipates every change. When Nurse Christy asks if she has any appetite changes, Mom tries to tell her that she is losing her appetite, but the evidence belies her claims.

So far today, Mom has eaten:

1 egg, over easy
1 strip of bacon
1 piece multigrain toast, lightly buttered
1 cup coffee
2 scoops of ice cream (breyer's vanilla)
1 handful gluten free pretzels
2 bowls albondigas soup
1 small bag m&ms
1/2 chocolate cakeball
1 tuna sandwich, pickle slice on side
2 peach halves
1/2 c. tomato juice

Oh my word. The only explanation is that the cancer is getting all the nutrition. I'm glad though that Mom still has an appetite. Food makes her so happy. Nate loves to make her tuna sandwich so he can deliver it and be part of his grandma's happy place. Now Mom is watching Huckabee and I've ordered a pizza for Nate, Ev, and me. I might have to come back and add The Works pizza to Mom's list.

Sure enough, but just a 1/4 slice.

Lavish

Lavish. That's the only word for it. In the midst of all this poop and crankiness and weariness and shadow of death, God has chosen to lavish His love on me. Of course, I know God always cares for me, but this whole week has been a parade of love notes from Him. I don't know how He works it. Maybe my friends will tell me. But somehow He lets them know to send me a message, a reminder of His great affection for me, and they do it. Beautifully.

So a friend sends me an encouraging note with a couple of our favorite handcrafted candles.

And another friend texts to let me know she's thinking of me and my mom.

A friend texts to say she's on the way to the store and offers to pick up my list too.

A friend bakes a buttermilk pie, and helps my son put together thoughts on paper.

A friend and her daughter construct that darling resurrection scene with the flower pot as the empty tomb and the grass seed growing around the three empty crosses. And they leave it at the office for me.

An out-of-state friend that I have never met in real life sends me a care package of springtime goodies and pretties, plus a card that makes me gasp and sob before I even read the inside.

A friend mails me an encouraging card, reminding me she and others are praying for me, my family, and my mom.

A friend zips by on her lunch hour to deliver homebaked goodies, including a package of gf chocolate muffins for Meg. (And in an interesting mash up of love notes, I seriously think her irish soda bread was a recipe from a magazine in the care package from my out-of-state friend!)

A friend texts to see if she can bring a Starbucks by for me, and stops by with her entire charming family for a quick visit.

It was such an outpouring, I may have left some off and might need to come back and add more. I'm telling you, it was a flood. An outpouring. Lavish.

Thank you, friends. Thank you, God. I got Your message.

How great is the goodness you have stored up for those who fear you. You lavish it on those who come to you for protection, blessing them before the watching world.
Psalm 31:19

Dear Grandma

This week a letter arrived addressed to Mrs. Anna [middle initial, last name] (Grandma). Inside was a triple folded sheet of notebook paper with a handwritten note.

Dear Grandma,

Thank you for always being a good role model for me. Even though you're near the end of your life, you're still reading your Bible and listening to sermons. You also taught me how to cook like you. Never as good, but still, I am getting better. You loved Grandpa 'til the end. Thank you for being such an amazing and wonderful grandma! I love you soooo much!!!

Love, Ev

I asked Ev about the letter, and she explained it was a school assignment. The students were to list people who had influenced them in a good way, then write a letter to one. A nice assignment, nicely done.

My Tribute to Grandma

By Nate Schneider.

My grandma has lived a very interesting life! Anna (middle name, last name) is 91 years old and she lives in (Small Town), TX. Prepare yourself for the exciting life of grandma!

Most people don't know that my grandma lived in Kansas and ran a restaurant called the "Yucca Inn" in the summer of 1948. She ran the restaurant with her sister, Helen. They started the restaurant for the experience. The Yucca Inn had a cordial atmosphere and great food.

One thing that a lot of people do know about Grandma is that she loved to garden. My grandma even had her own garden plot in (Small Town). Grandma grew snow peas, tomatoes, lettuce, broccoli, potatoes, green beans, and squash. Grandma also loved to grow flowers and trees around her house. She planted azaleas, pansies, impatiens, gardenias, and redbud trees.

Although Grandma loves the outdoors, she was not a stranger to the kitchen. My grandma's hamburgers were the best in the world! She also used to make a great shrimp gumbo. Grandma was famous for her baking skills too. My grandma used to bake bread and cookies. In my opinion, her Swiss Braided Bread would have won in any competition -- hands down! My grandma and I used to make exceptional molasses cookies. We would use a rolling pin to flatten the dough and then we cut it into different shapes, depending on the season.

My grandma has always been a strong patriot and has very definite political beliefs. Grandma has always felt that keeping up with the national news is important. Presently, to stay informed, Grandma listens to "Rush" and watches Fox news and Hannity. In this coming election, my grandma is leaning towards Rick Santorum.

Grandma started going to church at an early age and trusted Christ as her Savior. She loved to ride her favorite horse down to the creek to reminisce on Scripture. My grandma's favorite Scriptures are the Psalms. She is currently working on reading a one-year Bible. My grandma finds that, "The most important truth is that your neighbor is the one you live with everyday and is the one to whom you should practice love and kindness."

These are just some of the stories and truths from Grandma's life. No matter what Grandma has done, whether it was running a restaurant, gardening, staying involved in politics, or caring for her family, she gave 100 percent! Now you know a little bit more about the interesting and exciting life of Grandma!

Nate wrote this essay as an assignment for his weekly educational therapy. He went one paragraph at a time, interviewing Mom and taking notes. The wonderful Ms. Catherine edited and assisted. Today Nate read the finished product to his grandma. Mom even turned off Rush to listen and looked at Nate a few times as he read. She especially seemed to like the bits about her cooking and was struck that Nate included the truth about loving your neighbor. She tearfully observed, "It only took me 90 years to learn it." Well done, Nate.

Poop

Advisory: This post deals with bathroom issues. Please read no further if you have a weak stomach or are easily grossed out. Proceed at your own risk.

Poop occupies a lot of time and energy around here. Since her colo-rectal cancer surgery and radiation twenty years ago, Mom has had little bowel control. As a result, she used to just run to the bathroom all the time, and her bag of supplies was a constant companion. Now she cannot run to the bathroom, or even walk, plus she is not always aware of her bowel movements, so toileting herself is not an option. On a good day, when Mom doesn't have diarrhea, she needs a diaper change every couple of hours. Without doubt, it is the ultimate indignity for Mom, so I work hard to make it as painless, emotionally and physically, as possible.

When I first started changing Mom, she declared that wipes hurt her bottom and she only wanted to be cleaned with a tub of hot water and paper towels. Yes, ma'am. As the skin began to deteriorate, Mom requested the spray cleaner from hospice instead of hot water. Actually, she hinted for days and days ("Carissa just uses that spray." "That spray is cold, but Ceturah just tells me, 'I'm gonna spray you.'"), then finally asked me to use the spray. Yes, ma'am. Next, Mom admitted that the paper towels were too rough. I didn't have any cloth diapers left from baby days, so I cut up some of Dave's old cotton undershirts to use for wipes. Finally, as Mom's skin has broken open the last few days, she told me yesterday the spray stings.

Last night after Mom went to bed, Meg and I ran to HEB to gather supplies for homemade wipe solution. I looked up a lot of recipes and settled on water, pure aloe vera gel, eucerin aquaphor baby wash, and baby oil. Back home, I mixed it up and put the solution in a tupperware-type tub with the undershirt wipes. Good to go! Maybe that's why it really got under my skin this morning, when at Mom's third change of the day she said:

Mom: [peevishly] Ugh! Has there ever been a hole more scrubbed???

Gwen: [stunned silence]

Mom: Gwen, that might sound like complaining. [pause] And it might be.

Gwen: I believe it is! [continues cleaning]

Mom: Ugh!

Gwen: Would you like me to stop?

Mom: Not until it's clean!

Gwen: [continues cleaning]

Mom: Ugh!

Gwen: I'll tell you what. You quit pooping, and I'll quit scrubbing.

Mom: Now that's a deal!

Someday, I'm sure I will read this and laugh. Today, not so funny.

Happily, soon after this exchange the wonderful Catherine Davis arrived, delivering both Nate the Great and homemade buttermilk pie. Just what we needed.

Goodbye, Bwudda

Loren is gone. He left this morning and I miss him already. He was so attentive to Mama. They listened to their favorite radio propaganda together, sat outside together, watched Fox News Channel together, talked together. Yesterday, when I wheeled Mom out from her third of four naps, Loren was not stationed on the couch. Mom said, "Where's the boy?" I asked, "Which one?" She replied, "The big one!" Mama loves her boy. I love him too.

Even the presence of her favorite child could not slow Mom's downward spiral. During Loren's visit, he observed she slept more and more so that by the end of his week here, she was awake for less than 8 hours a day. Sometimes the urine in her catheter tube is red. Not pink, red. And she is weary, so weary. The sobering thing is, this is as good as it gets for Mom. The golden boy by her side for a week, attending to her every request, making her so happy. I figure it's the downhill slide from here.

Everytime Mom gets up, it takes a supreme effort. Yesterday as she lay her weary body down for a change and a nap, Mom exclaimed how good her bed felt and said, "One of these times, I won't get out of bed again." And it struck me that as tired as she is, when that time comes, she will want to stay in bed. All this time, in my mind she would be trapped in bed. In reality, it will be a temporarily welcomed respite.

I don't think bedbound is far away. And I don't think heaven is much beyond that. Praying for mercy, grace, and peace.

Postscript: And then, I change her after her noonish nap. Before I even get the bed lowered, Mom asks, "Is there any pear sauce left?" That woman! She's not quite done here yet.