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
Saturday, June 30, 2012
Caged
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.
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.
*Restlessness.
*Non-responsiveness.
*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.
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.
*Restlessness.
*Non-responsiveness.
*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.
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.
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.
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.
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
Bedridden
[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!
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!
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