I Bear Witness

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.
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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.

Photos

Filed under: Uncategorized — BabushkaBlue @ 4:05 pm

It’s so good to see my Vati happy with my lovely two kids. I want to keep these right here.

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!

In the Evening

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , — BabushkaBlue @ 3:58 pm

April 14, 2009

I got this email from my sister-in-law a moment ago:
Completed and had your mom sign all the paperwork authorizations needed for CJD and cremation.
Hard day for her…Ralph seemed verrrry confused this afternoon…she said his left hand is starting to “jerk”.
I will call the guy with CJD before faxing all the info….
xo
cyn

I crumbled into a heap on the couch. This is such a cruel way to die, and I can’t get my mind wrapped around the answer to why. I know I’ll never know the answer, but sometimes getting to that place of acceptance takes a while. Zen isn’t how I walk through my world, so don’t expect it from me now.

I think I’ll grab the dog and watch the sun set at the beach soon. One paper done and turned in with one to go. I completed the hardest one first, the one I couldn’t imagine answering. I answered the two questions so there’s an answer in answering the unanswerable, right? Right?

Ha. I kid. Life is random and often hard, but there’s beauty everywhere. I can see it clearly.

I love you

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , , — BabushkaBlue @ 3:56 pm

April 12, 2009

I hab a bad code and can’t stop coughing, but I didn’t miss any school and oh God! The homework is going to kill me. I know it.
This day? Oh horrible. I had an eery conversation with my mother. She asked me to arrange my dad’s upcoming autopsy, a big deal because of CJD. We believe it would be a good thing to help the foundation research this disease, because it’s so mysterious and misunderstood.

I no longer believe in the CDC’s contention that CJD is a rare disease. The more I learn, the more horrific the information is, so I’m not going to write about it today. Not on Easter.

After I agreed to call the people who will (for free and with great gratitude) arrange to ship my father’s brain across the country, my mother asks, “Would you like to talk to your dad?”

This morning his mind is clear and he remembers me – mostly, or sort of, anyway. I think.

We end the conversation like this: “I love you, dad,” I say.

“I love you too, kid,” he replies.

I hang up and feel everything collapse around me.

And So

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , — BabushkaBlue @ 3:42 pm

April 4, 2009

I leave this house tomorrow morning at 4:30am.
“He doesn’t know who you are,” Mom tells me. “He thinks you’re ‘the lady from Connecticut,’ which makes no sense to me but that doesn’t matter. I’ve never lived in Connecticut but I visited once; ate a lobster there. I hate lobster, but I had no choice.

Dad was tired this afternoon and upset because he couldn’t fix a flashlight. He couldn’t tell time. He swore my brother Wayne was not his son.

“He’s somebody’s son but not mine,” he said to Mom.

He didn’t want to sit next to me and decided to go to bed. He was so tired. He looked so tired. He’d been polite to a house full of strangers for most of the day.

Dad slowly walked to his room and I wondered if I’d ever see him again. If I do, I’m sure he won’t remember me. I guess that was goodbye, just like that.

Saying Goodbye

Filed under: Creutzfeldt–Jakob disease (CJD) — Tags: , , — BabushkaBlue @ 3:38 pm

My father with his dog at the marina.

The morning is full of sunshine. It’s warm. Hundreds of birds sing from their perches in the Eucalyptus trees and because the canyon echoes, birdsong is bouncing from tree to tree adding songs to songs. It’s this morning’s gentle pleasure. It’s nice.
So far I’ve chatted with my father, ate a bowl of Cheerios with walnuts and sliced banana, joked with my mother, said a few words to two brothers and a cheerful sister-in-law.

Wayne and Cyndi took dad to the marina. Mom is doing the crossword puzzle while inhaling from a motorized asthma machine. Ralph is taking a shower.

This is my last day here. I miss my husband. I’ll definitely miss my dad when I leave. The mournful train whistle and the rocking motion will lull me into a quiet place, reflective. Good.

“Why do those people like the park so much?” Dad asks while waiting for my brother and his wife.

“Well Ralph, they come to take you,” Mom replies.

“Don’t you want to take me?” he asks.

“I’m not sure. Like I told you before, I like my quiet hour,” she laughs.

I wanted to interrupt and remind her that she’ll have plenty of quiet hours soon enough, but I know she knows that. I lowered my eyes and prayed for a quieter mind.

At the Family Home

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , — BabushkaBlue @ 3:33 pm

April 2, 2009
I’m sitting at my father’s computer. He doesn’t know how to use it anymore. My brother Ralph arrived from Maui yesterday. He’s weed whacking in the canyon. I’m trying to stay above the emotional tidal wave.
I’ve been in denial about CJD because it’s too big – too devastating. I couldn’t see any of the signs at Christmas when we were last here for a visit.

His hand shakes uncontrollably now. He walks slowly and often almost falls.

I’m not in denial anymore.

In a quiet moment between my brother and I, his body bends in two. Deep sorrow. Heavy sobs.

Our father is an excellent man.

I don’t have time to send even a quick note to the people I love, so please forgive this quick entry as my sign of life and a wave to you (and you, and especially you).

Jim wants me to write a children’s book about the faeries in my garden. “Ask Adagio to illustrate the book,” he said.

More later. There’s a spider on the nearby wall. I need to run away.

Southbound Train

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , , , — BabushkaBlue @ 3:30 pm

March 30, 2009

I’ll board the train tomorrow morning. It’s a long but beautiful trip along the coast and for a while inland, but inland in the beautiful countryside. I have books. I have movies. I have a plot for an interesting novel rattling around in my head. Since I have my computer and Scrivener, maybe I’ll spend a lot of time writing.

My mother declared that she doesn’t want my brothers Lloyd and Ralph to know their father is dying. My sister-in-law appealed to me to talk her out of that, because no one thinks that’s right. My mother holds grudges forever. I can understand not telling Lloyd if I look at life through my mother’s eyes. He hasn’t given his father the time of day for many years, even though he lives just a few miles away. Everyone in the family is sure he’s switched from his thirty-year methadone use back to his first love: heroin. A heroin addicts tends to steal from family and he’s not entirely welcomed anymore.

But Ralph? No. She would regret that way too much.

I called my mom. “I don’t want Ralph to quit his job and fly out here. He’ll move in and we don’t want him here,” she said. “Tell him he can visit, but he can’t move here.” So that’s what I did. I explained that Dad has moments when company, even family, irritates him to the point that he’s hallucinating things like packs of dogs walking through the tops of the eucalyptus trees. Just a few days ago, he was going to cut a bright orange outdoor extension cord (plugged in) with a skill saw before my mother stopped him. “But those people have been waiting for me to fix this all day long!” he cried.

This morning I called Mom to tell her that I’d talked to my brother about visiting. I explained how I put it (gently). She says, “Oh. Well. That wasn’t necessary. I think it would be good if he stayed with us. He could help a lot.”

That’s when I remembered why I live 1,300 miles away.

My brother will be there by the time I’m there. He lives in Maui.

“How many days will you be here?” Mom asks. Three days. School starts next week.

“Are you sure you even want to bother coming?” she asks.

I’m sure what she means is, “Everyone else is coming here to stay, but you won’t step up so why even come?” I have chosen to take many deep breaths and remember that she’s under a great amount of stress, but news flash! So am I.

So Lloyd won’t be told by decree, and neither will my father. That’s right. He doesn’t know. She doesn’t want him to know. I am struggling mightily with that because I would want to know. Would you want to know? More importantly, would he want to know?

Hospice called. My mother explained to the woman that she doesn’t want them to tell him he’s dying either.

“But ma’am, if he asks we can’t lie to him,” she said.

“You have to,” my mother declared.

When I talked to Mom this morning I offered to spend at least the first night in a hotel since I’m coming in after 1:00 am. She wouldn’t hear of it, and told me to just sneak in the door. She’ll leave the door open.

“I don’t know where your brother will sleep,” she said. My father was doing something nearby in the kitchen listening to our conversation.

“He can sleep with the fishes,” he said.

“Did you hear that?” Mom asked. “Your dad said Ralph can sleep with the fishes.” Ha. Yeah, I heard it. If he can think clearly enough to make that joke, I think he can understand he’s dying. He might like the chance to say goodbye.

I’ll end this right there.

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