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.
June 10, 2009
Now That He’s Gone
May 26, 2009
Cheerios – May 19th
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
Monday
I’m flanked by dogs: two little ones on either end of the couch, while I sit in the middle by the window. I’m watching the rain. Chloe, our Shiloh Shepherd lays by the kitchen door. They always nap after breakfast.
This is a typically quiet time. Jim sleeps late because he works late. Even though I go to bed as late as him, I can’t sleep in. Someone has to feed the hungry dogs, and since I’m not working, that “someone” is me. It’s a good thing I like quiet time because I get a lot of it. Jim gets up at 10:00 am (or so) and leaves for work by 1:30 pm. I’m alone for the rest of the day and night.
I have a lot of homework today.
Mom says she can’t bear to visit Dad today. “His skin looks waxy,” she explained. She says he was better yesterday than the day before. It’s guilt she feels, although she won’t say those exact words. His mornings were always fine. He spent every morning outside watering plants, enjoying the breeze, pulling weeds or sweeping eucalyptus leaves off the front walk. The afternoons were bad most of the time. He saw things, grew angry, wanted to know what Mom had done with his wife.
Because his afternoons were so bad, he’s lost his mornings outdoors. Now he lays in a bed wasted on drugs, barely awake. Mom knows she didn’t have a choice but imagine! I can’t.
The kind hospice workers give him a personality that doesn’t belong to him. “He was a little fussy last afternoon,” the nurse explains to me. “Fussy” isn’t a word for dad. She doesn’t know him but now he’s something akin to a plant that she will take care of until the plant dies. “I didn’t water him yesterday,” I imagine her to say. “I’ll dust his leaves tomorrow.”
Mom says she’s going to take her Prozac and hide in her house today.
“I can’t see him like that,” she says.
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
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…
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
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
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
At the Family Home
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
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.
My Father Has CJD
March 27, 2009
The doctor called my mother today and confirmed that my father has Creutzfeldt Jakob Disease, one of the most horrible ways to die. Don’t know what it is? Mad cow disease except, as far as we know, no cows were involved.
It’s rare. One person in a million will get Creutzfeldt Jakob Disease. It’s mysterious. No one is sure how one gets it, or why. 10-15% of the time it’s hereditary and that means I can no longer donate blood because maybe I’ll get it too. Another way you can get it is to pass it on in hospitals from through donated blood, tissue or even surgical instruments (it’s happened). Cannibals catch it by eating brains. These are the few things they know about the disease, not much.
It’s horrific. The doctor is arranging for hospice to set up shop in my parents’ home.
And it’s always fatal. He has a few months left, but they won’t be good months.
I’m taking the train down this Monday. He probably won’t know who I am and there’s a good chance the instrusion will upset him so I’ll stay in a nearby hotel and come to visit my mom.
I always wondered how I’d handle losing my dad, my north star, my hero. Now I almost know.