I Bear Witness

July 3, 2009

A List

Filed under: Family — Tags: , , , , — BabushkaBlue @ 10:37 pm

Chloe playing with a friend on a sunny day.

Chloe playing with a friend on a sunny day.


“The deep pain that is felt at the death of every friendly soul arises from the feeling that there is in every individual something which is inexpressible, peculiar to him alone, and is, therefore, absolutely and irretrievably lost.” ~Arthur Schopenhauer

“The earth laughs in flowers.” ~ee cummings

Because my father is dead:
I have a newfound intolerance for bullshit. I notice the weeds in our garden. I don’t read as much, but I study more. I loathe loathsome people more fervently.
I don’t sweep our hardwood floor enough. I now believe the dishes can wait. I take my dog to the beach and talk to strangers for hours, but I won’t call any dear friends. I pepper sentences with profanity.
I call my newly widowed mother and listen to her pain. I am writing a short story that involves about my ex-husband’s tiny penis (nods to Anne Lamott for her brilliant penis idea).
I listen to Moby.
I ache with the loss of his good nature and wonder where did it go? I weep often, but always alone. I don’t share this pain with anyone except a friend in Ohio. She’s a poet, so there you go.
I leave our bedroom a mess. I don’t fold laundry. I still can’t find a job, but I’m attending college, so I’ve evened the score. I long for a lemon tree. I stopped respecting one brother, but I can’t tell you which one in case lurkers lurk. If so, I’ll be sure to say, “You? You thought I meant you? No, not at all! Why would you think such a thing?” so obviously I haven’t lost my passive/aggressive edge.
That’s not bound to change.
There’s more but this is all I can stand for today.

June 10, 2009

Now That He’s Gone

Filed under: Creutzfeldt–Jakob disease (CJD), Family, Garden Things — Tags: , , , , — BabushkaBlue @ 7:17 pm

I have thank you notes to write, calls to make, people I should hug for 100 years, lovely people who sent wonderful things, beautiful pieces of art, music, prayers, offers of coffee and friendship. I’ll reply soon and acknowledge how much I appreciate you. I’m so sorry and I know some of you are worried and maybe even hurt. Please forgive me. I’m trying.
But what is it? I can’t move. I sit on the couch and look outside to watch the wind blow through the trees and I think, “Dad would have loved this garden,” and then I cry. Grief is nothing to trifle with and I’ll hold grief’s hand until he feels like moving on. We sit quietly together for long hours these days.
Mom sent me a small box of photographs and they arrived today. Going through them was wonderful, but now I can barely breathe.
Jim wanted to walk through a park with another couple tonight but I couldn’t do it. Some of it is also because my ankles creak and crack with arthritis and so I’m slow. It’s embarrassing to feel like an old woman. Sorrow and shame. Humiliation. He went without me.
On the other hand in the afternoons I sit in my wicker chair, right in the middle of the lawn, and water the flower beds in the sun. Sometimes I close my eyes and almost fall asleep. Sometimes the breeze brings mist across my face. It feels like a caress. I miss that kind of tenderness. I don’t feel it much myself these days, but I understand this is all temporary and tomorrow I’ll laugh. He’d eventually laugh if he were grieving me.
That’s all I’ve got. Here is a simple but beautiful song from someone hardly anyone knows.

May 26, 2009

Cheerios – May 19th

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , — BabushkaBlue @ 9:43 am

I know my dad enough to know that his “passing” won’t matter as much as finding out what’s on the other side. He’s always been a pragmatic man, very simple. His best wisdom to me has stayed the same for years, “Live until the day you’re not alive anymore,” and I’ve taken his philosophy to heart.

I am heartsick and full of grief over the impending loss of my dad. It’s a horrible way to die, even senseless, but seriously and I mean it: all of us die. He gets that. He would have liked the chance to live longer, but he can’t. He’s not going to choose bitterness about it and neither am I.
I swear to all that’s holy this one true thing: love will always compel me. That makes no sense at all, so let me explain. I’ll give you a real example. My mother is, on her best days, difficult, but she’s my mother, so I’ll take care of her in the best way I can. A part of taking care of her, and maybe more importantly, acting like a grown up is this: I won’t whine about my responsibilities. Why not? Well for me it’s this (like I said): love compels me. If I whine and bitch and moan, where’s the love?

I worry that my mom will not be able to face losing him. I’m afraid she’ll buckle and hide. She hides most of the time and Dad’s the only person she’s allowed into her life. Staring into the future and the loss of him is impossible for her, far too hard, so she gave herself a break.

Interestingly enough, Dad woke up enough to eat a whole bowl of Cheerios with sliced bananas. He drank a glass of orange juice too; all this from the man who couldn’t swallow the day before. See how we are? Two days ago I was sure he was going to die. Today he eats Cheerios. It doesn’t change anything, but it says something cool – at least to me.

May 19, 2009

Sunday

It was a bright, beautiful, warm and inviting wonderful day! I’m not able to sleep more than four hours a night. I wake up before dawn with a knot in my gut. “Is this a dream?” I wonder. “Is my Dad dying or is this a nightmare?” Every morning, early, I ask these two questions and the answer wakes me right the hell up. He’s dying. He’s dying. He’s really dying. Thoughts swirl through my consciousness. My throat dries up and anxiety grips my chest. It’s better to get out of bed then, so I let the dogs outside, and sit on the couch with the laptop.
It’s quiet in the morning unless our neighbor’s dogs are in his back yard. If they’re outside, we have barking. Lots of barking. In that case, I let the dogs back in. I feed them and settle back into the couch. No matter what I do, I’m aware of my Dad.

He can’t swallow anymore.

I bought pansies today. I bought nasturtiums, and Japanese blood grass too. Lime green leafed salvia. I aim to clean up the patio tomorrow, to pretty it up, make it make me smile. Folly.

My mom is full of grief. “I’ve known him since we were sixteen,” she says. She thinks she might travel some. “Maybe I’ll meet another old lady to travel with,” she says. I offer to travel anywhere with her.

“Really? You’d want to be with me?” she asked. She sounds surprised.

“You’re on!” she replies when I say, “Sure!”

She gave his recliner away today.

Jim and I had breakfast with two dear friends. We ate outdoors underneath Japanese maples, east of the apple tree. It was nice. Then I drove my husband to work, poor man. I came back later that day to bring Chloe. She barked at both of them and pooped on their lawn. Twice.

The doctor says Dad has days, or hours. My sister-in-law prayed with him and he said, “Good night Ralph.” That’s his name.

So I know he knows he’s dying. I wonder if I’ll know when he goes? I hope so.

And on Saturday

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , , — BabushkaBlue @ 8:58 am

Just a few things because it’s a bright and beautiful morning and I have to clean before the cleaning man comes. (OMG)

In the Hospice house (a house with only four beds and a medical staff that seems to genuinely care) they hang a picture tag of my father on his door. One side has a (very uncomplimentary) picture of my father, the other side holds vital information: His name, important phone numbers and why he is dying.

It said, “[My Dad's Name] [My Dad's Phone Number] and “Mad Cow.” My mom saw that and showed it to my sister-in-law.
“Do you think they could change that?” she asked.
The nurse fumbled for words. “I’m so sorry. Yes. Yes. I’ll change this right away,” she said.

The disease is Creutzfeldt-Jakob Disease and it would be way better if the tag didn’t say Mad Cow. Stunning. Actually shocking to me. (Look! Incomplete sentences!)

Because he’s so agitated, and he’s agitated because he wants to go home, they keep him medicated. Because he’s so heavily medicated, he doesn’t eat: two bites of something in two days. The nurse said if he wakes up she’ll call me and put the phone to his ear. Meantime because I complained about my pigsty home while chatting on Facebook with my sister-in-law, my sister-in-law hired someone to come over at noon to clean the house, which means I have to clean before the cleaning person gets here, so this is necessarily short.

More later.

May 13, 2009

And So…

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , — BabushkaBlue @ 7:21 pm

O water, voice of my heart, crying in the sand,
All night long crying with a mournful cry,
As I lie and listen, and cannot understand
The voice of my heart in my side or the voice of the sea,
O water, crying for rest, is it I, is it I?
All night long the water is crying to me.

Unresting water, there shall never be rest
Till the last moon droop and the last tide fail,
And the fire of the end begin to burn in the west;
And the heart shall be weary and wonder and cry like the sea,
All life long crying without avail,
As the water all night long is crying to me.
–Arthur Symons

null

This morning while I was working on homework the phone rang. “Hi honey. This is Mom. Talk to your father,” she said. I heard the rustling of the transfer from her to him.
“Hi,” Dad said.
“Hi Dad. I love you. How are you?”
He can’t make sentences that make much sense to the uninitiated, but sometimes (when angels thoughtfully whisper the meanings into my ear) I can understand what he’s trying to say.
“They have me captured here. I want to go home. I don’t know who this lady is,” he tried to say.
“Who is that lady who handed me the phone?” he asked.
“That’s my mom. Her name is JoAnn. She’s your wife.”
“Oh.”
“Dad, are you scared?” I asked.
“So scared,” he said.
I told him I was sorry, that I loved him, that he was the most important person to me in all of my life.
“Really?” he asked.
I told him that I pray for him every day. “I think of you all day long and I worry about you. I want you to know how loved you are.”
He started to cry.
“Hold on, I have to blow my nose.” He blew it loudly right into the phone and we laughed.
For some reason, on this day, May 13, 2009, he knew exactly who I was. Mom told me later that he was trying to call me, but he couldn’t work the phone, so she punched in my number and handed it to him.
He told me he loved my art and that some of it is hanging on the wall. I told him I loved his art too.
He was crying too hard to talk, so he handed the phone back to mom.
And that was that.
Tonight I got another call from my mom. He’s had a psychotic break: thrashing all over the house looking for bad people, hurting himself in his panic, and terrifying my mom. She called for help. She called for help again. She called a third time to say, “Please come right away. He’s hurting himself,” and he had. He has deep gashes on his forehead – two of them. I can guarantee you that nobody wants to sew up the skin of his head. Not with CJD. Hospice has taken him away. It’s likely they’ll have to keep him medicated so much that today’s conversation is the last one we’ll have before he passes away.
My mother wouldn’t go to the hospital with him. “I just couldn’t,” she explained. My brother and his wife are on their way, to make sure he’s settled comfortably so they can call her to say, “Everything’s okay,” so she’ll go to bed.
I am grateful for the chance to tell my father how much he means to me. I’m grateful he understood what I said. Even if it was just a moment in time, love found a way to reach his terrified soul.
Please pray for this gentle man. I’d appreciate it if you would.

May 12, 2009

On Friendship

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , — BabushkaBlue @ 12:33 pm

Dad decided to wear pajama bottoms the other day. He normally wears jeans, sometimes khakis. He got a little confused while putting them on. Both of his legs were shoved into one of the flannel legs, making it difficult to walk but he managed to make it into the living room, step by tiny step. He was confused about his difficult walk down the hall, but didn’t realize he’d put the pajamas on wrong.
“It took me an hour to get him out of those pants,” mom said. I know it sounds funny, but this little event broke my heart and maybe (finally) broke through the veil of denial I chose to wear.

It would be wise for me to rejoin the world, but I don’t want to. I sit by the window of my living room and watch the clouds rush across the sky. I watch the hemlocks sway, and cats saunter across the front lawn. I secretly hold his hand from over 1,000 miles away, whispering to his soul: “You are loved. You are not alone. You are a beautiful man.”

I do homework and think about futility. Nothing’s permanent. Friendships especially. I marvel at how simple it is to walk away from someone in pain. Dozens of people I (used to) know have done it to me. Even here.

I witness events through a filter now. Things that used to matter don’t. Little things, especially gestures, loom large in this world of loss and hurt. I have no patience for pettiness; have little tolerance for games. I don’t feel like sifting through lies anymore, so I just don’t.

My English teacher is gentle with his corrections. I’m learning good things from watching him interact. “Maybe you should try to write the sentence more like this,” he writes before he shares a better way as an example. I like that style of correction. He’s kind and in case you haven’t noticed, I value kindness. Kindness comes from great internal strength. I’m learning that it’s easier to judge and reject people. It’s simpler. You mark someone as non-essential and you move away, but is it good for you in the long term view of life? I don’t think so. Kindness takes patience. It takes humility. You have to listen closely. You need to choose a way to hear another viewpoint compassionately, and that’s not an easy task.

A few days ago, someone explained why she’s not my friend anymore. I ignored “email after email” and it’s the damnedest thing. I can’t remember ever (and I’m serious – why lie?) ever ever EVER ignoring an email from her. Why would I? We didn’t have a fight. We didn’t disagree, or if we did, she never said anything to me. I’m in the dark here. I keep all my old emails from my online email account. There’s nothing there. Probably she was sending emails to an old workplace account and they didn’t bounce back to her. The old me would have begged and pleaded for understanding. I’d bend over backwards to make her understand that there must be something else afoot, but you know what? Go to hell. I explained it once and didn’t get a reply, and that’s rude. It’s also a message, so pfft. Everyone can’t be friends. It’s okay. We move on.

You can live with the consequences of your choices. I can’t find the energy to care about how you chose to view me. I can’t beg for understanding and I shouldn’t have to. I look for friends who respect the journey, who understand about ebb and flow, who know how to love on the long term, like family but without the crazy/nosey/gossipy aunt-like behavior. We’re quirky – all of us are – and I need grace right now. Patience. Gentle kindness. Love.

I am bad at sending cards. I am bad at returning phone calls. I’m a terrible pen pal. I don’t write much on my Facebook wall and for the love of Pete, don’t invite me to take one of those goofy tests, because I won’t do it. I won’t send you eFlowers either, so tell me now. Do these things disqualify me? Can I no longer be your friend?

Ha.

I love you in Florida, you in Ohio, you in California, you in Europe, you in Washington state, in Maryland, in Virginia, and Texas, in Canada…

Somehow we’ve managed to get along. My dad is dying an excruciating death while our poppies begin to bloom and I get it! I understand life goes on. Some of us don’t want to sit with our sorrowful friends. Some of us can’t, I know, but some of us won’t, so we find excuses. We pretend our shallowness doesn’t exist. We run away from our fear by naming it something else. Some of us speak about love in hushed, reverent tones, but wow! Some of us don’t mean what we say. My English teacher would gently correct you, though. He’d say, “You might want to consider changing your life a little bit. Try this,” and then he’d give you an example. I can think of ten people who are excellent examples of how to live in a loving way. You know who you are, and all things considered, doesn’t it make you sigh a breath of relief to know that at least, at the very least, you choose love?

May 2, 2009

Saturday

Listening to Olle Nyman, mellow gentle stuff and perfect for this gray Saturday. It’s raining. Jim is working this afternoon so it’s going to be a quiet day. All of my days are quiet, so I guess it’s not even worth mentioning, but there it is.
My brother, who normally lives in Hawaii but has been at our family home trying to help, is going back to Maui. He’s been asked to leave by my other brother because dad doesn’t like him there. Dad wonders why “that man” is doing the yard work that he used to do. He’s suspicious of who that guy is and wants his privacy back. I know this must rip my brother’s heart right out of his chest.

My mother assures me that she knows my SIL sometimes tries to create a world in which she’s the only hero. I make the word masculine on purpose, but don’t have the time to explain. Other brother (I have three) quit his job.

I tried in an email to explain to my Maui-bound brother that even if it hurts us like hell to walk away from dad, if our presence upsets him we need to stay away. He only has a few weeks (months? I don’t know.) left and we should do everything we can to let him enjoy his days in whatever way he can.

“I don’t know why it’s like that,” mom weeps into the phone. She wishes he would draw comfort from the people he’s always loved, but he doesn’t, so that’s that. I assure her that it’s okay, even though in the bigger picture it isn’t, but see? It has to be okay, because otherwise we’re selfish bastards.

Today Chloe starts an intermediate obedience class.
null

And it’s time to go to that class, so off we go.

Art

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , — BabushkaBlue @ 4:08 pm

April 28, 2009

My father drew this. He draws often now, because he can’t talk much. He’s losing muscle control and he’s beginning to drool. The drooling begins the phase I dread. He’ll soon (weeks, not months) forget how to swallow and won’t be able to chew his food. He’ll stop eating and eventually go into a coma.

None of us can believe it’s happening to him. He looks okay and then he talks about the pack of dogs walking through the tops of the eucalyptus trees.

My sister in law had to show him how to draw a heart because he couldn’t remember what they looked like. He has become my mother’s shadow, very dependent on her. He confuses her with his long dead mother and “that other wife,” the mean one, the one who lives in his head. He seems like a five year old and most of the time he’s happy.

Sometimes he becomes paranoid and threatens my mom (the mean one). He’s pushed her a couple of times. He draws as a way to communicate. For my birthday he drew a few pictures for me. They broke my heart because they express fear and worry. One of them shows a monster about to attack him. He’s yelling, “Stop!” Another one asks, “Is your dad okay?”

I fell apart when I opened up the package, but don’t tell my sister-in-law who was excited to give me a gift that he participated in. I know I’ll treasure them someday, but today I feel the horror of what’s happening to him.

Friday

Son and daughter are both flying in to San Diego in order to see their grandpa. Mom thinks he’ll remember Claire, but probably not Corey. I spoke to him on the phone this morning. He was telling me about the wonderful time Mom went for a walk on the marina with him. He’s been wanting her to walk with him for years, so it meant a lot to him.
She’s always, and even now, even with this, refuses to drive for the five minutes it would take to let him walk with her. I am afraid I’ll never forgive her for that.

I wanted to say to dad, “I was there too! Don’t you remember?” But what would that do to help anyone in this situation? I would have made him feel confused and maybe even ashamed.

“I have problems with my memory,” he confides in me.

“I know, Dad. It’s okay,” I reply.

He tells me about the young girl (his granddaughter Jordan) who took such beautiful pictures of the walk. I don’t tell him I’m in the photographs, but I am.

“That young girl takes the nicest pictures,” he says.

I keep my voice light, almost too cheerful, like a waitress who is trying too hard, but I don’t want to cry because It would confuse him. I’m almost sure he didn’t know he was talking to me, but that’s all right. I want him to have a nice conversation with someone who seems interested in him. I want him to know someone loves him, even if he can’t put his finger on who that someone is. Love is love.

“I love you Dad,” I say.

“I love you too,” he replies, but he’s clever. He says it because he knows he should know who I am, and that’s okay too. He’s still a nice man, still trying to make me, the stranger, comfortable. I have always loved that about him.

I hung up the phone and didn’t cry (for once) because he was happy. I just want him happy for as long as the happiness can last. Before long he’ll forget how to chew his food. He’ll forget to swallow next. He’ll go into a coma after that. The hospice people warn us that it will take us by surprise. We won’t believe how quickly, just like that.

I can barely handle the anger I feel and I strike out at the enemy. “Sporadic” is a lie and I’m meeting people who can (almost) prove it. I know this for absolutely certain: I’m steering clear of beef (like my pun, e’beth?) and don’t even think about venison, are you crazy? Organophosphates are the devil. Quit spraying pesticides on everything! You’re killing all of us.

My anger is displaced (a little). I’m mad at the world. Yesterday I left a shopping cart in the parking lot. I let my dog poop in the off-leash park and didn’t pick it up. That’ll show the Universe! What’s next? Should I hold up a liquor store? I don’t know what to do with this rage, with this sorrow.

I flunked that test, by the way. I’m getting A’s in everything else, but that class requires huge amounts of memorization and I can’t concentrate. I’m trying. I’m trying. I’m trying (she says while beating her chest like she did as a little girl/Catholic).

Daughter in law and grandkids Sunday.
A list:
pick dog poop out of the lawn
clean the kitchen
clean the bathroom
sweep and wash the floors
shampoo the carpeting
dust the guestroom and get all your folded laundry out of there
do some laundry because you’re out of underwear
get the sand out of the couch
sweep the crap (not dog poop, just stuff) off the patio.

Eat something for dinner.
Start now, you don’t have much time.
Go!

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