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
He’s Gone
Written on May 13, 2009:
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. (End of re-post)
On May 23, 2009, only ten days later, my father passed away. My brother Wayne was with him. “I wondered while I was standing there staring at his body, ‘Is he standing next to me? Is he floating around in the room? Did he zoom out of here the minute he took his last breath? Where is he? What just happened to him?’”
We are all terrifically sad. He was a wonderful man.
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
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.
And it’s time to go to that class, so off we go.
Art
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.