Saturday, February 25, 2012

Say What You Need To Say

One of my cousins recently asked if we girls were like our mom. I replied that I was too close to the situation to know. But as I think on her question and as we ride the roller coaster of daily life here, some similarities do come to mind. I know from talking with my sisters that we all have a hard time making our thoughts, feelings, and desires known. Whether to the world, those closest to us, or even to ourselves, it seems we have to wade through a swamp of reticence, self-doubt, and denial, sometimes even for the simplest communications. I also know from talking with my sisters that we are all three working on it in our own ways. I try to remind myself: What do I think? What do I feel? What do I want? Say it!

Unfortunately in this, the apples have not fallen far from the tree. Yesterday, a hospice nurse came by to check on Mom. Not our regular nurse, but I was glad for the check-up. Mom blithely assured her that everything was fine, freely admitted to weakness and sleeping almost all the time, said her swelling was gone, and she was so glad she could pee again. We asked for a refresher course in morphine and oxygen, just in case. The nurse noticed Mom's comfort kit meds were mostly expired (!), and ordered replacements. But I had to request for her to take Mom's blood pressure and heart rate. I said it would make me feel better. Everything did indeed seem as fine as possible.

Until about 7:15 last night, when Mom transferred to the red chair for a power nap before Hannity and said, "Gwen, my legs are swollen and leaking again." And then she told me she hadn't peed all day. Why? Why didn't she tell the nurse when she was here? Something like, "You know, I haven't passed any urine today," would have been appropriate. I realized that since she had been using the potty chair and been changed by a hospice aide, I was really only aware of one diaper, which had had no pee. I assumed (and you know what happens when we assume) she had peed other times. I had given her 3 cups of water throughout the day, plus coffee! I assumed, and Mom did not say what was really happening, and we ended up with a repeat of last Friday night. Same on-call nurse and everything.

As I moved Mom back to her bed, she declared that she would make no decisions without talking to her regular hospice doctor and nurse. I told her that would mean waiting until Monday. She remained resolute. The sweet on-call nurse called to say she was on her way, and I recommended she turn the car around and save the trip, because Mom would not do anything until Monday. Nurse said she was afraid of that, but insisted on coming anyway. I am so thankful.

Mom's edema actually extended from her torso down to her toes. The nurse was able to correctly insert a foley catheter and immediatley drained a bunch from Mom's bladder. Then because the cath was working well, she was able to convince Mom to take a lasix to start draining fluid from her tissues. Mom slept incredibly well last night and had a full bag this morning. Her edema is noticeably better. Mom is extremely weak, with only enough energy for transfers from wheelchair to bed or red chair, and eating. She used the oxygen this morning while napping in bed and said it helped to ease her breathing.

Where we go from here is anyone's guess. The nurse did warn me that eventually we will not be able to drain the edema. She will be back to check on Mom tomorrow. I guess I know we are going downhill, I just don't know how we will get there. And Mom's not saying, that's for sure.

Friday, February 24, 2012

Love Note

When Mom began this last precipitous decline, one morning she found a note from Karis on her bedside table.

I love you grandma! I also miss you; life's been busy!! You're the best though, and I love and respect you. Remember ephesians 4:6-7.
<3 Karis

I'm pretty sure she meant Philippians 4:6-7, which is one of Karis' favorite passages from childhood, and reads:

Be anxious for nothing,
but in everything by prayer and supplication,
with thanksgiving,
let your requests be made known to God;
and the peace of God,
which surpasses all understanding,
will guard your hearts and minds through Christ Jesus.

Mom said it was one of her mom's favorites as well.

Very dear.

Thursday, February 23, 2012

Still Here

Both of us. Mom is still here, hanging on, and I'm still here at home, taking care. Yesterday, thanks to our lovely warm weather, Mom was able to have her lunch on the back patio.

And after a sound post-dinner nap, Mom was able to stay awake for the last 1-1/2 hours of the last primary debate. Her observations? "I think it is a good debate, don't you?" "I don't understand anything they're talking about." "Your guy got to talk!"

And good news in the Too Much Information department: Mom continues to pass urine without a catheter. Nothing like caring for the dying to make you thankful for bodily functions. And the ability to walk at will. And countless other abilities we take for granted every day. This dying process is very much a return to the cradle. It reminds me of how those early years were spent talking about pee, poop, digestive difficulties, food intake, sleep habits, changing abilities, and never really ever knowing exactly what was going on or what to do. Lots of guessing, and trial-and-error, and learn-as-you-go, and prayer.

This morning at 3:00, Mom rang for a change, and proposed that we put the potty chair right by her bed so she could use it in the night. She suggested we try it in the daytime first. I loved this idea and I thought maybe Mom was getting some energy back. Then first thing this morning (you know, the real morning, which begins sometime after 7:00 a.m.), Mom wanted a shower. I reminded her that the lovely Cassandra/Carissa was coming today, but she wanted to shower right away. She said she had "the sweats" in the night and felt too sticky and itchy to wait. I can certainly relate to "the sweats" in Mom's toasty warm house. I asked Mom how she wanted to get to the shower, and she said she would use her walker.

Now, at this point, Mom really reminded me of Dad in his decline. I think I will never meet two more determined people. If a body could survive based on will, those two would be immortal. This frail shell of a woman who could not walk more than a step or two since Monday, was planning to walker into the bathroom, then have a shower, with me "close by?" Okie dokie. I certainly was not going to say no. Mom did indeed walk into the bathroom, made it to her shower chair, and got herself undressed. She ordered me to gather her supplies, then began the shower. She asked for help with her hair. Then she asked me to wash her back. And her arms. And her front. And her legs. And her feet. And she told me I would have to dry her and get the wheelchair.

Once I got her back into bed, she lay there with her eyes closed. She said she was "a weak cat." She didn't respond when I asked her questions.

Gwen: Mom, do you feel different?

Mom: [heart beating like a hummingbird, gasping for breath] Yes, I feel much better after my shower.

Gwen: I mean do you feel different worse?

Mom: Oh. I could GO.

Gwen: Well, you would go clean.

Death by shower was not to be though. After a couple of naps, Mom felt strong enough for her breakfast. She's currently sitting in the red chair with her headphones on, eating blue corn chips and Nate-made guacamole. And she has sworn off showers. For now.

Tuesday, February 21, 2012


Yesterday Mom's beloved Nurse Christy came to visit. Mom told Christy, "The nurse you sent was very good."


"I'm not doing anything she said."

Classic. That should go on a t-shirt or a tombstone or something. Christy just laughed and said, "You need to take your lasix." She called the hospice doctor who said, "She can take the lasix and pee out the fluid, or she can not take the lasix and let the fluid leak out her legs." Ew.

Then Mom made a surprising confession to Christy. Mom revealed that she has been drinking her quart of water each day as usual, but has been passing very little urine. She said, "I should have been telling you, but it's been going on for such a long time..." Poor Mom! I'm so sorry she has been dealing with this issue for maybe a month now.

And poor Christy. She was shocked that Mom was withholding information. Which makes me wonder, has she thought me the crazy, controlling daughter all this time? Did she think Mom was forthcoming and I was just making things up? Of course Mom is withholding information! Even at this late date, Mom does not want to seem like she needs help. Her big concern yesterday was to make sure Christy told me I didn't need to be home with her all the time. So Christy told me I didn't need to be home. She thought it was fine to have one of the children here, with the understanding they would call me if Grandma needed help.

Christy ended up giving Mom a catheter last night. She was still able to get around with her walker and was actually very thankful to feel like her bladder was emptying. Have you ever known someone who was happy to get a catheter? Incredible. She must have felt miserable before. Mom went to bed early, tired but relieved. And very happy that I would be gone to work the next day.

Which is today. Today Dave, Ev, Meg and I left the house before Mom got up. Nate was on Grandma duty. Around 10:15, I received a call from Christy. She said Mom was having some "issues." The catheter had leaked in the night, leaving Mom and her bed soaked. She called Christy, who went right over. Christy cleaned Mom up, but when she worked on the catheter, she found that it was not inserting properly due to a blockage of some sort. Then they found that Mom no longer has bladder control. Mom was exhausted from the whole production and ended up staying in bed with a pull up on.

(Important to note here: Once again, Mom was spot on in refusing meds. Imagine if she had taken the lasix and all that accumluated fluid had been rerouted to her obstructed bladder. Bad bad bad. Of course, the medical professionals were operating under the illusion that they had complete and accurate information about their patient. Not a safe assumption in this case.)

Christy said she hated to ask, but thought it would be good for me to be home at least for today to see how things go. She was afraid Mom would be mad! I came right home (leaving my gracious bosses scrambling in my wake) and went in to see Mom. She was surprised to see me, but when I explained that Christy thought I should come home, Mom paused then said, "I agree." Whew. Mom has stayed in her hospital bed all morning, but asked Nate to come turn her Bose on to Rush (Limbaugh, you know). She has not wanted any food and has taken just a few sips of water.

Mom seems to be handling all these changes with her typical stoicism. She is incredibly tough. Dave and I agree that she seems happy about going, but fearful about the going. She is truly amazing. They just don't make them like this anymore.

Sunday, February 19, 2012

Stuff Meg Says

Meg told me that some friends of hers were talking to her about something on my blog. Meg told them, "I don't read my mom's blog." When they questioned her about it, she explained:
"I don't ever read it. I LIVE it!"

Weird Day

Mom was so drained this morning. She was just sitting on her bed, so I went in to see what was up.

Mom: I'm as weak as a chicken.

Gwen: (laughing) A chicken?

Mom: Yes, it means I have no strength, no energy.

We've been hearing "weak as a kitten" for a while now; I guess "weak as a chicken" is moving down the Kansas farmgirl energy scale. Mom asked me to wash her sheets and her laundry, and remake her bed, and take out her trash, but she wanted to cook her own breakfast.

Mom essentially dragged herself out of bed and willed her way through cooking eggs, bacon and toast. As soon as she had eaten, she made her way to the red chair, went to the bathroom twice with "the trots" (refusing medicine for that too), then slept until noon. Mom was astonished to find she had slept all morning, but I assured her it seemed that's what she needed to do. She was alert and rested enough to watch a dvd of a short, one man production of Bonhoeffer's life, then watch her regular Sunday program and have some lunch.

After staying awake for almost two hours, Mom was ready for another nap, this time in bed. While she napped, Ev and I went out on the back patio to work on vocabulary. About an hour later, just as I was thinking I should check on Mom, she opened the back door! Mom shakily came out and sat in the sunshine and petted the dogs for almost an hour. (Well, she petted Nate's dog and shunned Meg's dog. And they were both very well-behaved. Perhaps we should rename them Jacob and Esau.) Then more napping throughout the evening.

Mom still has the weeping edema in her legs. She still says they do not hurt, just feel "tight." She still gets around on her own, but shakily and with great effort. She can tell her condition is deteriorating, and she is glad. She said that exact thing out loud to me tonight. She is ready to go.


Last night, Mom headed off to bed early. She was just exhausted by 8:15 and ready to call it quits. She said goodnight and shushed down the hall with her walker. While she was parked at the bathroom, I heated her rice bag and hung it back on the walker. A little while later, my cell phone buzzed. It was Mom. "Gwen," she croaked, "would you come tuck me in?"


I walked back to find Mom under the covers, but with her light still on. She asked me to plug in her nightlight and turn out her lamp. Then she said, "Gwen, I hope I can say this. Remember the party weekend when everyone was here? And you all decided someone should move in? And then Dave said you would move in the next weekend??? The timing was just right. I am so glad you are here."


This morning, Dave and I agreed that I should stay home from church to be with Mom. When she discovered I was still here, I explained, "I hope you don't mind. I wanted to stay home with you." Again, Mom said she was glad I was with her.


Saturday, February 18, 2012

Something New and Different

Last night, Dave asked our small group Bible study to pray for our family, specifically that God would prepare us to know what Mom needs. Our group meets at the lake house on Friday nights from 6:00-9:00. On the schedule I leave with Mom, I have us set to return home at 10:00 p.m. Yesterday afternoon, she said, "I'll see you in the morning."

But as we were driving home, I got a call from Mom. She was concerned about a "weird new thing." She said her right leg was swollen and "leaking water." She couldn't find the hospice phone number. I called hospice and asked for the on-call nurse to come out. I was thinking heart. Mom was thinking kidneys. After googling, I found weeping edema can also be just a side effect of cancer.

The very kind and efficient nurse arrived and gave Mom a thorough going-over. Her blood pressure was a little low (for Mom), but okay. Her heartrate was a little fast, but normal for Mom. Her lungs and bowels sounded good. Both Mom's legs were significantly swollen, at least up to the knee. Because they were both swollen, and were not hot or red, the nurse did not think it seemed heart-related. She said the only way to know for sure would be to go for testing. And we all know that is not happening.

The nurse called the on-call doctor, who prescribed lasix to draw off the excess fluid. Mom said she would like to have medication, which is an indicator of how uncomfortable she was. She was not aware/did not admit/did not have any pain, only saying her leg felt "tight." But if Mom is willing to take medicine, something is seriously wrong.

This morning, Mom's legs are no longer noticeably swollen or weeping. Her medication was delivered to the house and she promptly read the side effect sheet. And decided to not take it. Which is fine with me. Although lasix will drain the excess fluid, it will also make her pee A LOT (tiring), strip the potassium from her body, and could drastically lower her blood pressure. Those are all things we can do without.

Hopefully Mom's Nurse Christy will appear on Monday instead of her normal Tuesday visit. I know Mom would like to have input from her regular hospice nurse and doctor. And so would I. As we continue down this path with Mom, each new twist and turn reminds me how we really don't know what we're doing here. Good thing God does.

Postscript: After Mom's afternoon nap, the weeping edema is back. She is back in her hospital bed with her feet elevated. She seems serious and withdrawn over this development. I'm sure she is worried about what comes next.

Wednesday, February 15, 2012

Stuff Ev Does

Last night around 1 a.m., I heard Ev rustling around. (Remember, we share a room.) I asked if she needed some help. She said no. I then wakened a little more to discover she was standing at the foot of the bed on Dave's side. Dave woke up and the following conversation ensued.

Dave: Ev, what are you doing?

(It became clear at this point that Ev was moving things from a chair to a little desk.)

Ev: Clearing off a place to sit.

Dave: Ev, are you even awake?

Ev: (indignant) Of course I'm awake! I just need a place to sit for the day!

Dave steered Ev back to bed.

I just lay there and prayed silently, "Oh God, please don't let us all go crazy."

Monday, February 13, 2012

Stuff Mom Says

"I don't know why Donald Trump thinks people like him so much! And the way he combs his hair!"

"Meg, would you be sad if your dog ran away?"

"I haven't tried those farm eggs. I like my HEB eggs." (says the farm girl)

"So it's a threesome. Karis likes to have backup." (when Karis goes out to dinner with two friends, one of whom is male)

"It's quiet!" (after Karis and friend leave for Walmart run)

"Gwen! What on earth are you doing???" (scrambling eggs)

"What in the world is going on?" (we slept late one Saturday)

"Did you hear that?" (after burping) (and she has never seen the movie "Elf"!)

"Are you sure you aren't going clubbing?" (suspiciously to Karis and Meg as they leave to shop for jeans at Kohls)

Sunday, February 12, 2012

The Parcel Post

I have a friend I've never met. Shelly is one of many wonderful internet friends I've met on the Five in a Row message boards over our 13 years of homeschooling. This particular friend is a stand-out in one unique way. She now lives where my mom was born and raised. No, not in the same exact farmhouse, but close. Very close!

Shelly and I have kept up a casual conversation over the years. When my Aunt Helen's book was published, I sent her a copy. She and her husband read it, enjoying the references to familiar places and faces. When Aunt Helen passed away, and I was searching for a florist in the area, Shelly offered assistance. She also offered to give us a tour of the area, but Mom was set on only spending the afternoon for Helen's service and no more. So, you see the kind and considerate friend she has been to me.

This past week, she extended her friendship to my mom as well. Shelly had checked with me previously, but honestly, it had slipped my mind. On Tuesday, I zipped home after my morning students to check on Mom and have some lunch. After serving Mom, I left her to eat in peace with her buddy Rush Limbaugh. That man interferes with my digestion, so I made myself scarce in the back bedroom. I was surprised then to get a phone call from Mom, cell phone to cell phone. She said in her reedy voice, "Hey Gwen! Come see what I got in the mail!"

Back in the kitchen, Mom was holding a manila envelope covered in beautiful hand-drawn sunflowers. I looked at the return address, and then I remembered my friend's plan to bless my mom. At Mom's request, I opened the well-sealed packet and handed her the contents. Mom was mystified to find a lovely card signed with names she didn't recognize. I reminded her about my friend on the prairie, and she remembered hearing about her. Mom enjoyed the pictures drawn by my friend's daughter of different prairie scenes. She appreciated the thoughtful card. Then she discovered the photographs.

On the day Shelly sent the package, her husband drove her around to various spots from Mom's childhood. (I'm tearing up as I type.) It was a clear day with that blue prairie sky that goes on forever. They took a picture of Mom's grade school, which is now a home. (Mom said it looked better than she had imagined.) They took pictures of the rolling hills and landmarks. They even drove down roads that Mom would remember and labeled them on the back. And they drove by her house, her beloved family home.

Mom looked up and exclaimed, choking back tears, "I ask for joy..." And then it was hard for me to continue talking with her because I was teary too. God is so amazing, arranging all this simply to lavish love on one of His children.

Shelly also included a sweet, newsy, four page letter to Mom. She introduced herself, told about her family, and talked about familiar people and places. It was just perfect. Mom has read it over and over again. "Your friend Shelly should be a writer!" "It's wonderful her husband has such a love for the land!" "I'm going to send her one of the photos of the home place and one of mama with her chickens."

Mom continues to weaken mentally, physically, and emotionally. But Tuesday, she was animated for the rest of the day. I heard her on the phone at 9:30 that night, from her bed, exclaiming over her package from Kansas. I think my friend sent much more than photographs, pictures, and words in that manila envelope. I think she sent Mom a little packet of life. And around here, that is a pretty precious gift.

Tuesday, February 7, 2012

And More

Mom is no longer washing pots and pans, which was one of her holdouts.

She has been having Nate help her with making up her bed, but today she just had the lovely Cassandra (personal aide) do it for her.

She is sleeping so much. Not catnapping; sleeping hard after any exertion, like a shower or a meal or a conversation.

Mom is using the potty chair in her room at night. She commented on how much energy it saves for her over walking to the bathroom each time.

Tonight as she was getting ready for bed, we talked about her visit from Nurse Christy today. Christy told her she thinks Mom's heart will be the thing to go. Mom seemed relieved with that thought.

We also talked about my schedule, and the amount of time I'm gone. Mom said she was glad that most of the time someone is home with her, even if it is just one of the children. (Well, you know, teenagers. But still children.) I reminded Mom that my schedule is very flexible and she assured me she would let me know when she wants me to be home more. I'm not so sure Mom will let me know. We'll see.

I'm praying for wisdom and grace and mercy.

Sunday, February 5, 2012


This is the sixth day in a row that Mom has been noticeably weakening. Each day finds her sleeping longer, napping more, and doing less. I keep waiting for the upswing, and have to remind myself that there might not be one. In the past, Mom has responded to help and good food by getting stronger and regaining her independence. That doesn't seem to be the case this time around. I know things could change. We could wake up tomorrow and Mom could be mopping the kitchen and telling us to pack our bags. But it sure doesn't look that way.

And so I have to remind myself that I am not here to help Mom get better. I am here to help Mom go Home.

Today Mom learned of a grandmother of friends in our church family who, although seeming to recover from sepsis, passed away Friday morning. As I loaded the dishwasher after lunch, Mom said, "Well, it's good Lillian could die." I thought her sentence was incomplete. I waited for the missing words. I thought maybe, "It's good Lillian could die surrounded by her family." Or, "It's good Lillian could die and go to be with Walter." Or even, "It's good Lillian could die and not have to endure the long, hard recovery." I looked over at Mom to see if she was searching for words. No. That was it. "It's good Lillian could die."

I think Mom is tired of the good fight and feeling Homesick. And maybe a little jealous of her friend Lillian.