Saturday, June 30, 2012

For a Dancer

As Mom spends another day in her room, with us, but fighting her final battle alone, this song keeps running through my head. I love this beautiful live version with David Lindley on the violin. Please ignore the "facts" on the screen; I know at least some of them are incorrect.

For a Dancer
Jackson Browne

Keep a fire burning in your eye
Pay attention to the open sky
You never know what will be coming down
I don't remember losing track of you
You were always dancing in and out of view
I must have thought you'd always be around
Always keeping things real by playing the clown
Now you're nowhere to be found

I don't know what happens when people die
Can't seem to grasp it as hard as I try
It's like a song I can hear playing right in my ear
That I can't sing
I can't help listening
And I can't help feeling stupid standing 'round
Crying as they ease you down
'cause I know that you'd rather we were dancing
Dancing our sorrow away
No matter what fate chooses to play
(there's nothing you can do about it anyway)

Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
Another's steps have grown
In the end there is one dance you'll do alone

Keep a fire for the human race
Let your prayers go drifting into space
You never know what will be coming down
Perhaps a better world is drawing near
And just as easily it could all disappear
Along with whatever meaning you might have found
Don't let the uncertainty turn you around
Go on and make a joyful sound

Into a dancer you have grown
From a seed somebody else has thrown
Go on ahead and throw some seeds of your own
And somewhere between the time you arrive
And the time you go
May lie a reason you were alive
But you'll never know


Mama has her eyes open this morning, but shows no signs of seeing or hearing us. Her breathing comes in heaves, stops for twenty seconds or so, then heaves again. Gayle and I managed a diaper change earlier and tried to prop Mom in a comfortable position. Is there a comfortable position at this point? Mom won't take ice or even open her mouth for a swab. Her lips are pressed in a thin line and her chin quivers. I'm sorry to say she does not seem peaceful or restful. So like Mama to struggle to the end.

Afternoon Update: Mom opened her lips enough to give her more meds and that seems to have helped. She is resting easier now.

Friday, June 29, 2012

What to Expect

Mom has been on hospice for one and a half years. She has a well-worn pamphlet that I call her Hospice Bible. It is called "Final Days...Sacred Moments: A Guide for Families Facing Terminal Illness." Mom has read and reread her Hospice Bible. She carried it in her orange bag. She underlined and circled. She waited eagerly for symptoms to arise, willing them to arise, announcing each one (real and imagined) with satisfaction.

Because Mom was so well-versed, I don't think I had read the Hospice Bible until this week. As she began her precipitous decline, I turned to the page that promised to give me a "Summary of What You Can Expect."

One to two months prior to death:
*Decreased appetite and food intake.
*Increase in hours spent sleeping.
*Withdrawal from activities and people previously enjoyed.

That describes where Mom has been for a while. Toddler sized meals, awake 4-6 hours out of 24, not listening to Rush or watching Hannity regularly. But then soon after Gayle arrived, Mom changed. When I finally picked up the Hospice Bible, it was clear Mom had moved into the next category.

One to two weeks prior to death:
*Disorientation, including agitation, restlessness, confusion.
*Changes in heart rate and breathing patterns.
*Decreased blood pressure.
*Changes in skin color and temperature.
*Not eating, reduced fluid intake.
*Further increase in sleep time but may be arousable.
*Congestion or noisy breathing.

Yesterday Mom had each one of those symptoms, every last one. And we thought, okay, one to two weeks. Then today she changed again.

Two days to hours prior to death:
*Increase in intensity of symptoms listed above.
*Surge of energy or "rally."
*Irregular breathing, sometimes with significant pausing, called apnea.
*Mottling may become more apparent.
*Pulse is weak and difficult to find.

Today Mom was only awake twice, about 45 minutes each time. During her first time awake, Dave and I and all four kids were able to speak to her and make eye contact. During her second time awake, Gayle played her flute for Mom. She barely responded to us, mostly staring. We think she had her "rally" yesterday afternoon. Her breathing is shallow and her heart flutters like a little bird.

Cassandra came today and washed and changed Mom. She advised us that it would now take two people to change and move Mom. After a short trip out to the ReStore with Dave this morning, I've stayed home. I just feel like I should be here.

I can't imagine Mom making it through the night. How long can her partially functioning heart flutter on? How long can her metastacized lungs draw breath? How long can her wasted body hold life? She is super tough, but it looks like the fight is almost over, the race almost run. Please, Jesus, let her fly away to You.

Diary of an Old Soul

Gayle has been busy cleaning out drawers in Mom's desk, and came across this copied in Mom's hand on index cards clothespinned together.

With every morn my life afresh must break
The crust of self, gathered about me fresh;
That thy wind-spirit may rush in and shake
The darkness out of me, and rend the mesh
The spider-devils spin out of the flesh —
Eager to net the soul before it wake,
That it may slumberous lie, and listen to the snake.

George MacDonald is one of Mom's favorite authors. Diary of an Old Soul is a book of daily devotional thoughts, written as poetry. This quote is from October 10 (my birthday!). The little poem is familiar to me and at first I thought I had included it in a blog post before, but I don't see it here. Maybe Mom had written it to me in one of her attempts to explain her unmotherly behavior. I don't know, but it is good stuff.

Life is Messy, So is Death

[Guest blog from my sister Gayle]

Not only in the physical aspects, but also in the emotional and spiritual. A battle to the end.

Monday evening was a sacred hour of tender, soul-baring confession. Regret and remembrances of past events and days that come before one's mind at the end. Truly and sincerely confessed without reservation or excuse. A cleansing of the heart. I was the humble listener beside the bed of repentance, and felt a blessed awe at the purity of the moment.

Then the next day dawned, and the fight was on. When I recounted to dear hospice Nurse Christy what my mother said/did, the awful details of which will remain undisclosed, she was truly disturbed. She even spoke of it to her husband, and said to me the next day, "It seems like Satan is trying to take hold of her." Her words, not mine.

In these last few days, anger, fear, and self-pity have had dominion. Of course, in weakness and pain, how understandable it is to give in. Excuses flow easily, defensive thoughts express themselves, abusive moments have their logical reasoning...

Wrestling with God, with family, with self.

The bell that Mama rings when she wants something was going off every 5 to 10 minutes for a few hours. The fight. Goodness was not winning, not even in the running. Vitriol, ramblings, rantings, dictation. More ice, a little more from the comfort kit, and finally rest.

Today, little response and no strength. Prayers over the tortured soul and body. May the battle soon be over.

Renovation Tip

So, it turns out that it is hard to focus on home renovation when your Mom is declining and probably in her final days. Who knew? (My good friend says, "Your Papa." Yes.) I've lost track of how many dumb things I've said and done, how many things I've misplaced, how many times I've gone to the store only to leave without the items on my list. Extra grace needed all around. Thank God my main job is to just paint. It is such simple work that I've even been able to talk to God and other people while painting. And no, we are not "all done," so don't even ask! I'll tell you when we're done. But we are making progress. The kids and Dave have worked like beasts every day, and friends have helped too.

Meanwhile, back at the ranch, Gayle is faithfully tending to Mom. Mom is still in bed. Still not eating. In pain, but won't admit it. Angry and scared and so very unhappy with this whole scenario. We are trying to keep her comfortable. Poor Mama. This is not the way she wanted things to go. None of us want this misery for her. We pray for mercy. We pray for grace.

Wednesday, June 27, 2012


[Guest blog from my sister Gayle]

I sat in the wheelchair today. Wheels locked, going nowhere. Beside Mom's bed.

24 hours have passed, and the first day she has been wondering about for over two years has come and gone. Mom is bedridden. But not really aware that it is happening. Not eating, but not caring; impatiently straining for ice like a baby bird. Trying to spoon it herself, sometimes letting me help, but really wanting to do it herself...angry that she can't. Her world, her control is finally slipping away. Like a little child that doesn't understand why we can't make it better, she opens her eyes and is fretful and can't find the words to demand what she wants.

Cassandra, the beloved bath giver, is able to reason with her, and speaks frankly about accepting comfort medication. She puts down a sheet so we sisters can pull Mom up in the bed. In one day she has lost the strength to even straighten her legs in the bed. (Yesterday she resisted help getting from bed to wheelchair). Moving her fragile body is difficult; she weighs under 100 lbs, but is so sensitive to touch.

Her feet ache. It is hard to move her left leg. Mom whispers, "It is because that is the leg I broke, and the rod is too heavy inside." Who knows?

The "comfort cream" comes by pharmacy courier, she holds out her wrists willingly, unknowingly. She rebelliously receives the dropper of morphine (called it heroin the other day!) and tries to be mad at me, but falls asleep as soon as she drinks a few sips of water. Drugs--she never trusted or used them. Now they are needed, but still not trusted. It is so hard to not be able to work, clean, do; just lie in bed and be still. Just be.

Poor Mama! Soon she will understand and be released from her prison of misery and pain. Soon she will love and be loved perfectly. Soon her joy will be constant and unending.

Come, sweet death, come blessed rest!

Home Made Wipes Recipe!

[Guest Blog from my sister Gayle]

A little idea that has done great wonders for mom's tender, fragile skin has been this wonderful recipe that sister Gwen researched and experimented with. Sometimes hourly changes, requiring lots of cleaning up, had mom's skin on the verge of break down--nearing the point of no return. Using this recipe made a big difference, and I believe has protected and preserved her from painful sores, infection, and discomfort.

Start with lots of little cotton squares/rectangles, cut from an old T shirt, fold to fit into available small plastic tub, like deli meat comes in. Pile to top of container.

Heat to boiling, 4 cups of water. Pour into mixing bowl with 1/4 cup of each: glycerin, aloe vera, aquaphor wash. Whisk until blended and cooled a little. Pour into container with folded wipes. (Let cool before putting lid on).

As wipes are used, throw in bucket with water and a little vinegar. To wash, put in washer and spin out water. Wash on hot with non-chlorine bleach and detergent.

(A nice little chore while mama is napping!)


[Guest blog from my sister Gayle]

Listen for the bell, for whispered requests. Hot coffee. Crushed ice. Water.

Raise hospital bed up. Changing, reaching, lowering the bed. Empty trash, bedpan. Wash hands.

Every two hours apply anti-nausea cream.

Egg over easy and toast. Fork and napkin.

Cassandra comes for the shower. (Sit and don't listen for requests while she is taking care of mom).

Gentle, gentle, soft touches everywhere, except brush hair with force and vigor!

Wheel the chair to picture window. Arrange bell and water. Cover legs with blanket. Feed the kitty so mom can see if she chooses to look up.

Tiny sips of warm broth with spoon, crush meds in food whenever possible!

Go through mail and request to be taken off of mailing lists.

Time for another change. Laundry. Fend off obsession of the day. Redirect conversation.

Fill oxygen water container with distilled water.

A few bites of "Killer Bee" frozen yogurt (Chiller Bee). Time for nap.


Tuesday, June 26, 2012

Changes, Finally

[Guest blog from my sister Gayle]

I have been to Texas this year in January for the 91st birthday, March (during spring break), and the first week of May. Even though since March Mom has needed full-time care, she had found enjoyment in things like her meals, birds at the bird-feeder, her kitty, flowers, her morning face wash, etc.

Things have changed. Mom is barely eating, barely talking, and sleeping. Breathing is more difficult and she prefers to stay in bed most of the day and night. Even though it is not hard to lift her into her wheelchair, she doesn't really enjoy looking out the window anymore. She sits with her head down. She doesn't listen to the radio.

She seems

finally, the cancer has taken over.

Respite/Work Week

My sister Gayle arrived Saturday night after the long drive from St. Louis. She came bearing sourdough starter and homeground rice flour to make my family gluten-free pancakes. She brought cucumbers from her garden, canning jars, cider vinegar, dill weed and grape leaves to make her famous pickles. But most importantly she brought the gift of time.

Time for my family to relax together. Time for us to see a movie at the theater. Time for us to go to church and go out to eat afterwards. Maybe even time to go to the beach. And time to work like crazy on the lake house. I'm hoping that this is the week (really) that we get the lake house ready to go on the market.

Dave has taken the week off from work. The kids are all pitching in. Some old and dear friends came out yesterday afternoon to work alongside us, sharing the load physically, mentally, and emotionally. I think we have Gayle until Saturday. I'm asking God for a supernaturally productive week, beyond what I can imagine. Gotta go get to work!

Friday, June 22, 2012

Ruh Roh

Somebody got their phone taken away yesterday.

Mom got some sort of bee in her bonnet yesterday and started making phone calls. Odd and unpleasant phone calls. She had more to make, but I took her phone to plug into the charger. That phone is going to need to charge for a lo-o-ong time. Plus I think probably Nate and Ev will need to take it when they go places, right? Right.

Thursday, June 21, 2012


Mom rang for me once more in the night and then this morning shortly after 8:00. I had turned off my alarm and drifted back to sleep, so I stumbled bleary-eyed from my bed directly to her room.

Gwen: Hello, Mama.

Mom: Gwen!

Gwen: [laughs] Yes! Who were you expecting?

Mom: I got you out of bed!

Gwen: Yes, that's where I am in the mornings.

Mom: Is the coffee ready yet?

Ah, yes. She's back.

Wednesday, June 20, 2012


Mom went down for a nap at 2:00 this afternoon. It is 9:30 and she is still asleep. Still breathing. Maybe she will get her wish and fly away in her sleep tonight. God only knows.

11:00pm--Ma woke up to use the bedpan. Didn't want to eat or get up, but breathing easier. She spoke with the children and me, and Dave prayed with her.

Downhill, Actual and Wishful

Mama is not doing well today.

She had a weird night. One of Mom's goals is to waken me as little as possible, which is of course a lovely goal and I'm not complaining. I know that she is awake much more than the few times she calls me, because I hear her set her glass down after taking a sip of water and I hear her check her clock and I hear her adjust her bed. This morning when she rang for me in the wee hours, I went in to find her feet uncovered and her pillow missing. She seemed unaware and just wanted to use the bedpan. When I asked what happened to her pillow, she asked if I would find it for her. At first I couldn't see it because it was stuck down under the bedframe and I had to tug it out. While I was searching for Mom's pillow, I found the clock centrally located under the bed as well. Just weird.

Today, as I was asking Mom about it, she decided she must have had some "struggle" in the night. As she lined it out, saying she had adjusted the bed and lost her pillow and it must have been related to her breathing, I told her I thought that would be a great time to ring for me so I could help. But she said she wasn't aware at the time. I don't know if Mom is remembering, or if she is just supposing. So hard to say.

This morning, after she declined a change and had her coffee and breakfast, Mom was sitting at the front window and I was sitting at the dining room table maybe 15 feet away. Mom called out in her whispery voice, "Frozen Coffee!" I walked over and said, "Are you asking for your frapp from the freezer?" Mom said, "Take. My. Frozen. Coffee. Out." I asked Mom if she was having trouble breathing and she said, "I might be." Then Mom said, "I'm thinking about the drops." Morphine. Mom willingly took morphine today, twice so far, to help with her breathing. So you know it's bad.

But she's still eating, small portions but regular meals. All bodily functions still operating regularly as well. Probably half the time, Mom needs assistance to transfer from wheelchair to bed, and most of the time we lift the head of the bed to help her sit up to move to the wheelchair. Out of 24 hours, she still spends 4-6 hours awake and sitting up. I know Mom is eager for the end, and I know it is coming, but it's not here yet. And she's not happy about that!

As I was raising the head of the bed to facilitate Mom getting up after her morning nap, she made some small sound of distress. I stopped the bed.

Gwen: What is it?

Mom: Oh...well...

Gwen: Will you tell me what's bothering you?

Mom: [Gets self out of bed and into wheelchair without assistance. In silence. I rub phenergan on her wrists as previously requested.] It's my general condition. And I remember what Dr. L______ said. Do you remember?

Gwen: [Gathers Mom's things into her little bag. Thinks to self, "Yeah. He said the edema in your legs would never get better. Boom."] What's that?

Mom: He said I would go fast at the end. And I'm going downhill fast.

Gwen: [brushing Mom's hair] What do you mean?

Mom: Oh, my breathing and my weakness.

Gwen: You just got out of bed and into the wheelchair under your own steam.

Mom: I'm glad you don't talk much.

Tuesday, June 19, 2012


It started like this.

Gwen: Mom, I need to call a plumber. Meg discovered that the off and on foul smell from the bedroom closet is a leak coming from the master bath.

Mom: I knew about that leak. I guess I should have mentioned it.

And grew and grew.

Gwen: [at 3:00 a.m. diaper change] Here's your bedpan, Ma.

Mom: Gwen, I've been thinking about that bathroom.

Gwen: Um, could we talk about this in the daytime?

Into this.

Mom: Did Dad ever tell you his thoughts about that toilet?

Gwen: No, I don't think we ever talked about the toilet.

Mom: Huh.

Gwen: Did Dad tell you what he thought about the toilet?

Mom: Yes, it took two flushes.

Gwen: Oh. That's because it's new. All the new toilets have low flow.

Mom: Well, maybe we should replace it. It leaks out around the bottom.

Gwen: The plumber lifted it up and put a new wax ring on, then he sealed all around it. I don't think we need a new toilet.

Mom: Did you have him check the lavatory spigot? Because it doesn't work right and it leaks under the cabinet.

Have I mentioned before that Mom gets stuck on things? She rolls something around and around in her mind until it is literally all she thinks about. Sometimes it is a spiritual concern, sometimes something physical. It can be from long ago or from the present. Often it is a person, relative or otherwise. And sometimes it is a project.

My philosophy is "If it ain't broke don't fix it." Usually Mom's philosophy is "If it's broke, just use it anyway. New things are expensive." (Witness the previous knowledge of nasty plumbing problems, but inactivity and even withholding of information.) But somehow we have moved from the shower repair (which will alleviate the leaky closet) to one new toilet, two new sink fixtures, and a new shower. I have held fast on refusing new floor tile and replacing the five year old toilet.

If you have been the object of one of Mom's obsessions before, you know how oddly relentless she is until she feels her work is done, often with less than pleasant results. You should all be happy to know her mind is currently occupied with the bathrooms and with me. You are safe for now.

You're welcome.

Friday, June 15, 2012

And Then

Mom rang for her coffee at 9:00 this morning. She did her normal morning routine and ate an egg over easy and half a piece of Panera bread toast. Now she's sitting in front of the window, reading her one year Bible.

My dear friend said it perfectly:

Roll on rollercoaster. Roll on.

Thursday, June 14, 2012


Emily Dickinson and I have something in common. She also lived in her family home and took care of her invalid mother. And she also talked about death a lot.

There are a few minor differences between us still, for instance, the famed and beloved poetry, the agoraphobia, the whole white dress thing, and oh yes, the fact that Emily Dickinson tended to her invalid mother for thirty years. THIRTY YEARS.

So, I shall stop my sniveling and just quietly back away, leaving you with this lovely line ED wrote in a letter following her mother's death:

"The dear Mother that could not walk, has flown. It never occurred to us that she had not Limbs, she had Wings—-and she soared from us unexpectedly as a summoned Bird—-" Emily Dickinson

(Just to avoid any confusion, also unlike Emily Dickinson, at the time of this writing my mother is still living. I just thought the quote was lovely.)


Maybe. I'm not sure. I just have a feeling about today.

It started out like a normal day, except Mom slept a little late til 8:15. She climbed out of bed and into her wheelchair without assistance. She wanted her egg and toast for breakfast and she drank her coffee. She wanted a cup of ice. Cassandra/Carissa/Keturah/Acturah came early and massaged Mom's feet and legs while she sat by the window. Then Mom wanted to go back to bed at 9:30. She asked for some phenergan cream for nausea.

And she asked for her nausea medicine every two hours for the rest of the day. When she rang for me at 11:00, she said, "I've just taken the shortest nap I've ever had!" Um, nope. She was very wobbly getting out of bed and never fully straightened up, just sort of hunched over to the wheelchair. Mom wanted phenergan cream and lunch. What a combo! But she just took a couple of small bites from her turkey, cheese and tomato on wheat. (And then asked for it to be kept in a baggie. Of course.) By 12:30 she was ready to nap again.

Woke at 1:15, nausea meds, back to sleep.
Up at 3:00.
Back to bed at 4:30.
Woke for nausea meds and thought she should get up since she had been in bed since 3:00. Um, nope.

And so on and so forth. All day, Mom's preferred methods of communication with me were head nods/shakes, mysterious index finger signals, or single words. Something like this, following a diaper change and bedpan usage:

Gwen: Mom, what would you like to do now? Do you want to sleep some more or would you like to get up?

Mom: [wiggles index finger twice]

Gwen: Does that mean you want to stay in bed?

Mom: Up.

Or like this, when I parked Mom at the window:

Gwen: Can I get you anything?

Mom: [stares off into distance while slowly turning head side to side]

Gwen: Are you thinking, or does that mean "No thank you."

Mom: [whispers] No thank you.

Or like this, while helping Mom to bed for a nap:

Gwen: Would you like your rice bag?

Mom: [whispers] No.

Gwen: Would you like your oxygen?

Mom: [reaches for cannula]

Gwen: Is your throat dry? Would you like a drink?

Mom: [whispers] No.

Gwen: Why are you whispering?

Mom: [whispers] I'm tired.

And she is so very tired. I set her toothbrushing things before her at her request and she just sat and looked at them for a while. She is having trouble holding onto time and date. I think I will print out a time sheet and jot things down for her so she can keep track of what has happened in the day.

But that's the thing. I really have the feeling that she might be going Home tonight. I told the kids so they would be sure to tuck their Grandma in and give her their love. And of course, I told them I could be wrong. I certainly didn't call it with Dad. Who knows?

At the least, I do think it is a turning point for Mom, a steeper incline on the downhill slide. And maybe this is her night to fly away. I know she would be so glad to go.

Wednesday, June 13, 2012

Seriously, God?

***WARNING: Skip this entry if you are squeamish in the least. Or if you have a problem with ranting at God. ***

I mean, seriously?

It's not enough that I change my mother's diapers and empty her bedpan?

It's not enough that the city only collects trash once a week and after seven days of diaper changes every two hours plus life with seven people plus temps in the nineties our trash is overflowing and filled with maggots so I get to boil them and bleach them and scrub down the trash can?

Did we really have to add maggots all over the kitchen floor to the list of horrors?


Saturday, June 9, 2012

Back in the Saddle Again

(Nothing like a little Aerosmith soundtrack in your head to start the day off right.)

My dear sister in law Cathy has flown back to KC. She came last Wednesday intending to stay for a week, then extended her visit through yesterday. (Pity? Fear? Grace?) I am so grateful. During Cathy's time here with Mom, I was able to:

*Haul boxes to storage and Mom's house
*Have dinner with my besty from high school
*Get sick and spend an early night plus all the next day in bed
*Go to church
*Take Dave to the airport for his two weeks of studies in California
*Have dinner out with Ev
*Move most of the lake house furniture to storage (thank you Perry and football boys and Pickerings and Smith boys oh and Bret for the trailer)
*Paint the trim in the upstairs of the lake house
*Pack up master bedroom and bathroom
*Run errands and tote children

As I've come to expect, I was disappointed with myself about the lake house. In my mind, I think I should be able to work around the clock and get the place ready to sell. The reality however is that working at the lake house is so emotionally draining, I can't take an all-day session. It is better now that most of the moving is done and we are down to cleaning and painting. We are hoping to knock it out when Gayle comes at the end of June.

Mama is losing ground. She is sleeping more and more, spending only about 5 hours awake out of every 24. It is harder and harder for her to get out of bed and she doesn't like assistance. Nurse Christy surmises it won't be long before she doesn't get out of bed at all. Mom's appetite comes and goes. Yesterday after Cathy left, Mom didn't eat anything at all for the rest of the day. She did have breakfast this morning, an egg and a half piece of toast. She drinks her half cup of coffee, and crunches on some ice throughout the day. Not much to go on.

Mom's emotional state ebbs and flows as well. She was very thankful for Cathy's care. She has said kind words here and there to others, especially Cassandra/Carissa/Keturah and Nurse Christy. But she is still Mom and is weary and gets annoyed with people for being human. She still gets "stuck" on things which are beyond her control and worries them around in her mind and refuses to pray. And we all know how ugly that can be. Cathy and I discussed telling Mom that Nate needs her phone just so she would no longer have means to share her mind with others.

Mom is of course still longing for this struggle to be over. I don't know why she must linger while others are taken who want to stay. She feels she is close to death, but truthfully she's felt close for a long time. It could be wishful thinking on her part, or it could be that she has always been so strong and cannot imagine living in such a weakened state. Honestly, I don't think Mom will go anytime soon unless her heart gives out. She's still eating and drinking enough to sustain; all systems still function; she still reads and occasionally watches her programs. The Big Evil takes up about 1/3 of her abdomen, but Mom still maintains it causes her no pain. (Just don't touch it or she winces.)

So on we go into the unknown. Onward and upward, and try as we might, not gently.