Tag: Grief

Comfort

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*This blog entry was original written: November 21, 2009 while I was caring for my mom and my very best friend as she transitioned and left this world.

I did not know how limited the rest of our time together would be.*

Mom is comfortable. We’ve come to a phase in our journey where this is the most important daily concern… Is Mom comfortable? We have a hospice nurse coming twice a week and a nurse aid coming twice a week, on alternate days. Because they come in the mornings, I haven’t met either one, but mom’s oldest sister knows the hospice nurse and her second oldest sister knows the nurse aid. Both aunts tell me that both nurses are wonderful, skilled and knowledgeable. They have taught us so much, as my aunts have shared the knowledge with me. We’ve learned to roll Mom on to her sides and back every few hours to relieve pressure and prevent bedsores. We feed her and care for all her needs with grace, delicacy and skill. I’m hoping to meet the nurses next week on my week off.

And in case you didn’t already know… Mom and I have an extremely compassionate, giving and supportive family. Not only have my two aunts been here, by her side from the very beginning of this diagnosis, but without hesitation they have jumped right in and taken nightly and daily shifts to stay with Mom. We’ve arranged a schedule to help us organize our other responsibilities around Mom’s needs. Other family members are pitching in as well. Two of Mom’s nieces have offered to put their names on the calendar to cover times they can stay with her. It’s a big job and not one for everyone. Caring for someone who is bedridden is a huge job. It not only takes patience, but both physical and mental strength. We also know that Mom’s wishes were that she be surrounded by only family at this point. She had seen with her sister who passed from breast cancer at 41, her brother who passed from AIDS at 40 and Grandma’s care when she passed in 2005, that there comes a point where only immediate family should be the caregivers.

Even though I will always feel Mom is being taken from me too soon and feel some resistance to fully accept it, I am trying to think logically and implement what she would want at this point of her journey. I have imagined and visualized in my mind how things would and should go. I have thought about what she would want, how I would protect her, how I would make sure she was comfortable, peaceful and respected when the time came.

No matter how optimistic I’ve been…how cheerful I always tried to be…the fact is I have been dreading this since May of 2007 when Mom came over to my house straight from the Pulmonary doctor. She walked in crying and so distraught. She could hardly breathe. I knew she had a follow-up appointment that morning, but because the doctor had told me immediately after her outpatient bronchoscopy procedure that “it didn’t look like cancer”, we didn’t feel she needed someone with her at the follow-up appointment. So she went alone. Alone. Alone when he looked past her and said, “Where’s your daughter?…..I was hoping you would have her here with you today. It’s always better to have family with you…..” And then proceeded to deliver the most feared news…“I’m so sorry…but…it is cancer.”

They had found cancer cells in the lab work. He hadn’t done a biopsy but had done a “scraping” of the interior left lung and the lab showed cancer cells. She drove straight to my house. Her first words to me through her tears and shock, as I opened the door, “I’m terminal…. I have cancer and it’s bad…”

I couldn’t speak. We sat on the couch and I just held her while she cried. I was in shock. I had no tears because in my mind I was saying, “NO…NO….she didn’t hear him right….I need to call the office and find out exactly what he said…..this is wrong….WRONG!”

But looking back now, that was in fact the moment I started to panic and visualize where we would one day be…dreading where we are today. People would try to comfort me. They would say, “It might not be that bad…. she might defy the odds and live for another 10 years…. you never know…don’t think THAT way…” How do you NOT think that way? Once we heard the diagnosis, it was as if I developed a photographic memory when it came to ANYTHING about lung cancer. I dove in head first. I remember that first summer checking out six library books and taking them all to the cabin. I’d lie in bed all night reading everything I could on stage IV lung cancer. At home I would research online till the early morning hours…. I joined web sites, read medical journals and found online support groups. Mom never wanted to know what I was finding out. She just let me research and if she had questions, she would ask. Otherwise I knew not to tell her what I had discovered. It was an unspoken agreement between us. If I suggested she do something, she would just do it, trusting what I had read. When the doctors talked to her about various treatment options, she would ask my opinion. She trusted me and knew I would put my feelers out there to my support groups asking for information or opinions. She cried when she received the MRI results this past July. She was so scared of it spreading to the brain. I told her it was treatable. I explained that this is what lung cancer does, but that WBR (whole brain radiation) has a very high success rate, which her oncologist immediately ordered. I stayed optimistic and positive. Because it’s what I believed…..

But in the back of my mind, I was preparing myself for the worst possible thing I could imagine…. losing MY mom. Losing Mom. Her laugh, her unconditional love for me, her smile, her sense of humor, her passion, wisdom and knowledge about art, politics or history… her upbeat happy voice over the phone every single time I called. “Hi hon!” I can hear it so clearly. But the future was unimaginable. And the fear and knot in my stomach has never left. It’s been there for 2 years and 5 months. Except in all of my mental preparation, I never saw it this way. I never saw brain tumors taking over so quickly…. I never, ever imagined this…. I never imagined she would leave me mentally before she left me physically and spiritually.

Even though she never wanted to know her prognosis, one of her pulmonary specialists told her that stage IV lung cancer patients have 12 months without treatment and 36 months with treatment. But what I imagined is that we would fight for years. I honestly believed she could have 3-5 more years. This was Mom, after all. Everyone knows how strong she is. What a powerful little hummingbird she is. And when the time came, I imagined that we would have tried many different chemo-cocktails, possibly radiation, a clinical trial, holistic treatment… we would have tried anything and everything until her body became too weak or sick to continue. Mom would either accept it or be too tired to continue fighting and tell me, “I’m too tired. We’ve come to the end….” We would talk about our lives together and what we have been grateful for; I would tell her how sorry I was for all the attitude I’ve ever had with her AGAIN; for the arguments I started; the teenage years that brought stress and anxiety and any other time I thought I knew more than she did. I would tell her that I was sorry I hadn’t been more understanding when she had sunk into depression following her sister’s death, or her brother’s or her mom’s. And sorry for all the times I was too self-centered and too busy to just BE there when she needed my love. And sorry that I hadn’t listened more and talked less when she just needed a friend. And I would hear what she wanted to say. Anything. Everything. Or just sit in silence with her while we were just present. Whatever she wanted. But it would be on HER terms. Her way of saying goodbye. She would find peace and some how, some way it wouldn’t feel as though she was being torn painfully from me.

But that didn’t happen. We never had that warning that this was it. Or maybe we did and I just wasn’t paying attention. Looking back now, it seems like she just slipped away into this permanent sleep so quickly.

People try to be supportive and say things to help me feel better. They try and tell me how lucky I am that I had over two years with her. But how in God’s name am I supposed to feel “lucky” when my mom is dying from cancer and being taken away from us? I don’t feel lucky or fortunate. I wanted 5, 10, 20 more years with her. I don’t see the “good” as people keep trying to point out. She’s being taken from me. Period. She’s only 61. Her granddaughters are only 7 and 9 years old. My youngest daughter, might not remember her. I don’t feel fortunate. Not now. I know people are trying to help….but I’m not there yet.

So here we are. In this new phase and I’m comfortable here. I’ve finally accepted this status. No, she’s not talking and responding to us these days, but she’s here. And I can hold her hand or kiss her head. I can love her. I can care for her. I can feed her and change her and make sure she’s comfortable. I can read her facial expressions and see if she’s cold or in pain. I have come to accept where we are, even though this is not what I prepared myself for.We have all settled in to our new responsibilities and new ways of loving my mom.

What literally stops my heart … is imagining and trying to prepare myself for what comes next….what the “next phase” is…..

The Journey Begins

“When things are bad, it’s the best time to reinvent yourself.” – George Lopez.

There you are! And here I am. Which makes this a connection. I have an audience. Even if it’s only you. I appreciate that you are here…and following these words, and thoughts. I like to tell stories. I like to talk through the worst of times. I also like to laugh until my stomach hurts. I like to be shocked. Not creepy-weird shocked, just good ol’ shock humor. The progressive, blunt, intellectual, wise, brave, humble, based on facts kind of humor. Sometimes that can be shocking. And that makes it even funnier. We’ll get into that more as we get to know one another.

I like to be descriptive. I like to describe the ENTIRE scene, in order to describe and share the emotion and bring you inside my head. Always. It must always be emotional with me. I say that half jokingly, half with a sense of cynical and sarcastic humor, and half with a very serious, dumping-my-flaws-on-you-at-first-meeting-confession type admission. Yes, that’s 3 halves. If you’re going to sit here and correct me and judge me, you’re going to exhaust yourself. I trip over my words, I explain too much, I fuck up idioms and I suck at math. Soooo, it’s best if you just try to find the comedy. Patience will get you far. And if you’re lucky I might even make you shed a tear here and there (remember, I’m emotional).

I have started this blog for a few reasons. I love to share. Writing is therapy. I’ve always believed that I can express myself on paper with such accurately emotional words and descriptions. People get what I’m trying to say when I write. I don’t repeat, stumble, ramble, etc. and if I do, I can catch it. I am a journalist major and even though my professional career dabbled in the teaching of the language, my constant side passion has always been writing. Although if you were to ask anyone in my inner circles, everyone would say I don’t have a problem talking. Oh I can chat. And keep thinking of another thing to add…. I have learned to shut up and LISTEN. Sometimes my insecurity kicks in and I think, no one is really, truly interested in what I have to say anyways. You start to get that feeling when you’re told that you talk too much. I was told as a child by a few adults in my family, “If you don’t have anything intelligent to say, don’t join the conversation. These people have different (in other words, “more interesting”) things they want to discuss”. Ouch. Why do those kind of comments stick with us, define us, throughout our lives?

So in hindsight, I guess it made sense that I found my voice while writing. I resisted it in school. Hated the long essays I had to write, or that my mom wrote for me and had me copy at 3am in my own handwriting. Hated it because I was am was (fuck it) AM a procrastinator. I was a horrible student. Never did my work. Total and utterly helpless “social butterfly”. But when my mom would find out, she’d do anything to make me complete an assignment, study for a test, etc. She was stressed working full time, living pay check to pay check, and I can hear her over happy hour with her sister, “I’ll kick her ass before I let her fail…. ” She would absolutely go off on me for about 4 days. Telling me how disappointed she was with me for waiting until the last minute…. and then she would read the book(s), write the paper and wake me up at 3am to copy it in my own handwriting. I would cry. She would yell. It would be a knock-down-drag-out fight every time. I hated it. She would use words in my papers that were way too advanced and intellectual for me to understand, pronounce and spell. I’d cry more. She’d tell me it was my own god damn fault and that next time I should do my homework on time! She had a point.

So I grew up hating writing. And then realized that, thanks to those papers and Mom’s threats, I actually learned HOW to write, even though I barely passed any other subject in high school. And then I majored in Mass Communications with a focus on Journalism. Go figure. Even after majoring in a field that focused on writing, I’ve never really put faith and energy into writing professionally. My creativity has gone down the path of photography, teaching English and media – but nothing directly in WRITING, journaling, blogging.

I’ve experienced some traumatic life experiences over the past 20 years and maybe, just maybe, sharing my experiences will help someone in their own struggle, grief, regret and help them along on their path of lifelong decisions. I blogged on a private site while my mother was going through cancer treatment. It was therapeutic. It still is. I was told by a few readers that they appreciated feeling as though they were there with us, as I invited them into our intimate moments through my words.

My mom passed 9 years ago. I’m grieving. You never really stop grieving a parent. I don’t know how one would. The loss of a parent is almost a physical pain. It changes who are you are. It changes where you were going. At any age. It’s part of life, but it’s also one of the things that makes being human so painful, as well as beautiful. There are quotes that remind us that life can not be fully enjoyed if we don’t also experience loss. It’s how we appreciate the details, they say. I guess? Maybe I’m stubborn. I am having a hard time appreciating my mom not being here. She was supposed to watch my daughters grow up with me. I crave her. I long for her. It hurts. And it always will. I have learned to live with the heaviness of her loss.

Even if you simply don’t speak to a parent, it pulls at a part of your spirit and is an intensely emotional loss. If you have issues with a parent, it messes with the rest of your life. No matter how much you try to push past it, it’s just there. It’s becomes an unending ache in your heart that you are constantly trying to overcome and push through, without much success. It’s so cliche but the act of writing absolutely sorts and organizes my thoughts. I suffer from anxiety. Writing helps. It’s no surprise that my grief manifested into anxiety following my mom’s death. Around 4 months after she passed I would find myself waking up at 3am, every night, with a knot in my stomach. It was panic. It was feeling like I had just received the worst news ever. That kick-in-the-gut feeling where you go into fight or flight mode. Every night. 3am. It can be exhausting. And then it starts to happen at different times, with various triggers. Pretty much EVERY thing triggers the anxiety now.

So I write. If I see it on paper or on the screen, it comforts me. Seeing the words, makes it seem manageable. Yes, that’s how I feel. I see it. It has a voice. I feel hopeful that I can answer my problems with solutions….by continuing to write. I can find my way. I can continue on my journey and grieve, feel, release, find strength or …….. just make a ton of fucked up jokes that just make it seem bearable.

As the George Lopez quote says, “When things are bad, it’s the best time to reinvent yourself.” I am on a journey to reinvent myself. Through spilling my life out here, to you. I hope I connect with others in a way that helps them. I hope I find myself soon….as I get closer to that beautiful golden age of 5-0. Yep. That’s coming up in just over a year.

There is a young girl within this shell of a human I call, “me”, who’s not sure it matters what the birth certificate says, as long as she can find herself soon and start really enjoying the upcoming chapters. Life has been hard for a while. Life was good. Then it fucking sucked. And then I floated for a bit…with dreams and visions. But it came to an end following various circumstances. And life became a challenge again. A struggle. So today I’m trying to survive and push and live and grow and mature and improve….did I mention survive? Every day I try to survive. There are parts of life that must be lived, experienced, accomplished — I’m doing the best I can with what I have. But I am on my journey to be “accomplished”. We will venture into all of this as I turn the pages, peel the layers, get high and blog or whatever. I will get to each detail. Because I must find my path now. I hope while I write and think, think and write, it adds something to someone else’s life out there. That would be an amazing connection. Be well. Let’s do this.