During the month of August, Band Back Together is going to be publishing posts about loss and grief. These losses can be perceived or real as we know that loss is universal. We welcome you to share the stories of what and who you’ve lost – parents, children, animals, sisters, brothers. Please share your posts with us by clicking here.
This morning on the way into town, I had a flashback of a phone call. A phone call I’d had with hospice, seven months ago.
She’d lived far longer than the doctors thought possible. She’d outlived the projections of every website and message board I’d visited in my obsessive need to understand what we were up against. Her CEA (tumor marker) numbers stayed low and nothing showed up in her monthly exams for a long time.
Then, the numbers started to creep up. After three years of nothing, they’d found a new spot on her liver.
It only took four months to go from finding that small spot to being in that back room on the phone with a lady from hospice.
Mom had been getting intravenous fluids the week before. As weak as she was, we would help her get dressed, get her to the car, one of us on each side to keep her from falling, drive her to the hospital and wait the two to three hours to get the fluids and then repeat the process to get her home.
We’d done this every day for a week, but the benefits of the fluids were starting to be countered by the difficulty of the journey. She was getting too sick to make the trip anymore. We’d talked to her doctor, the hospital, to anyone we could think of to figure out how to get the fluids to come to her. We felt certain there had to be a traveling nurse, or someone else who could administer the fluids. If the problem was that insurance or Medicare wouldn’t cover the cost, we were all more than willing to pay for it.
We just needed someone willing to do it.
When I asked the lady from hospice if that was something she could help us with, instead of answering my question, she asked some of her own: What did I think was really going on? What did I think the fluids were going to do for my mom? Would it be better to keep her going as long as we could, as she got sicker and sicker? Were we doing this for her, or were we doing this for ourselves?
We discussed that Mom’s body wasn’t benefiting from the fluids as well as we’d hoped. Her liver and kidneys had already begun to shut down, and we knew she was experiencing fluid retention. In fact, the fluids we were fighting so desperately for may have been doing more harm than good.
I had one of those moments when the blood thunders through your ears, the air is sucked from your lungs, and time slows down.
She was so sick. Every day she was getting sicker. Of course we knew she was going to die. But until that moment, I’d been in fight mode.
This was the first moment I realized the fight was really over.
The lady on the other end of the phone waited until I stopped crying, and we made arrangements for her to come over to talk to the rest of the family. We’d been fighting this disease aggressively for over four years. It was going to take some professional help to transition from that all-consuming fight to helping our Mom let go and…die.
She came over and we all gathered around the couch where Mom was laying, and we talked about the fact that she really was dying.
It was singularly the saddest discussion I’ve ever been a participant in. Everyone left my sister and I alone with Mom. We talked about how this was really it. We told her how much we loved her, how we would be there with her through it all, and how we would be there to see her on the other side.
I wonder how she felt at that moment.
I think about that moment a lot. I regret that moment sometimes. I wish we’d stayed in denial about her death so we’d never have had that discussion. Once it was out there, it seemed like any fight she had went away. She was ready for it to be over.
My sister, my grown niece and nephew, my aunt and I all took shifts staying with her and Dad. At first we gently tried to get her to eat and drink, but in retrospect that may have been a lingering need to fight for her life. Eventually, even that stopped.
I’d stay for two days, then leave for one or two. I would go to work on the days I was away. Work became a sanctuary where my mind was otherwise occupied. As I drove the hour and a half back to my parents, I felt the heaviness increase until I had to drag myself up the steps and into their house.
We’d brought a hospital bed into their living room so I’d see her the minute I opened the door. Every time I opened that door, I wanted to recoil in horror. Our mom was laying in that bed dying! It couldn’t have felt more surreal.
By then, she was drugged and asleep, and unable to talk much even while awake. It was a living nightmare.
A strange numb detachment descended upon me. I’ve never been like that my whole life. It was like my brain just shut parts of itself off. I felt made of stone.
We held her hand. We brushed the hair out of her face. We put chapstick on her lips and swabs of water in her mouth. We told her how much we loved her over and over and told her we were going to be okay. We promised that we would never stop talking about her to our kids so they would always remember her. We talked about our hope for the future when we would all be together again and she would be healthy.
I hope that she felt some comfort from us being there with her. I know she was scared; her brow and face would be scrunched up with anxiety and pain, even though she couldn’t voice it. The best we could do was give her the shots of pain and anxiety medication that hospice had left for her.
The last time I saw her alive, the truth is, I knew it would be the last time.
I should have stayed. I should have stayed. I should have stayed.
But when my niece came over for her shift, I left. To escape the horror, the impending doom, and the despair, I went back to my house. The next morning, I talked to my niece and she told me that Mom’s hands were getting colder, and I knew I should go back. I knew the signs of impending death by heart; I’d read them over and over in hopes of preparing myself.
But I didn’t go back. I went to work instead. My sister called me at work to let me know she was at Mom’s. She held the phone to Mom’s ear so I could tell her that I love her. She couldn’t talk, but I could hear her breathing loud in an attempt (I choose to believe this) to communicate with me. My sister then called my brother and they had a similar interaction.
My sister was on one side of Mom holding her hand, and my Mom’s baby sister was on her other side holding her hand when it started. They told her it was okay to let go.
In 2004, I was pregnant with my daughter and at a job I enjoyed with a morally corrupt boss that I hated.
But I was fine.
When I was 32 weeks pregnant, my father came for a visit. Dad lived two hours away from me, so having him show up suddenly for a visit wasn’t unusual. In fact, I loved it. I’d wake up to the smells of breakfast cooking, coffee brewing, and my Dad whistling happily to himself as he took over as caretaker in my house.
There was something very comforting about my Dad’s presence in my house. My father was a six-foot tall and solid man. So when he hugged me, he enveloped me. The feel of his embrace, the scent of his cologne, the unmistakable him-ness, could give me strength and faith that no matter what, I would always be okay.
My father loved me. My father was my friend. My father was a fabulous grandfather to his grandson. My father was my foundation. My rock. My stability.
And that morning, my father showed up and made breakfast. Blueberry muffins. He spent the morning talking to my son and I. He helped my son tie his shoes for school. I could hear them laughing and talking and whispering to each other as Dad helped his grandson fix his hair for school.
When it was time to leave, my son did not want to go. He wanted to stay home and spend the day with his grandpa. I remember saying to my son, “Come on, I’m taking you to school. Grandpa will be here when you get home.”
My son hugged his Grandpa goodbye. His grandpa told him he loved him. He told his Grandson to have a great day.
I told my Dad I’d be back in about an hour; I needed to stop at the store before I came home. My Dad told me to be careful. He kissed me on my forehead and told me, “I really love you, kid. I’m glad I came to see you.”
As I drove out of the driveway, I glanced in the rearview mirror and saw my Dad taking out my trash and for one moment; one tiny moment, I thought to myself, “Maybe I can let my kid skip one day of school. We could all just spend a nice day together.”
But, my son had a spelling test, and his gifted class that day and I didn’t think he should miss those. I looked at my father in that mirror and I felt so good that he was there. I was so glad to have my father show up that week.
I remember thinking, “Time with Dad is just what I need.”
It was early spring here. The morning was slightly chilly but the sun was shining brightly. The day was bright with promise. After dropping off my son and a quick stop at the store, I headed home.
I got out of the car and grabbed my few bags of groceries and went into the house. At 32 weeks pregnant, I had an awkward sense of balance, but I managed to get to the door in spite of the dog and that’s when I thought, “What’s the dog doing outside? She doesn’t stay outside by herself.”
Because if there is anyone here reading this who thinks that suicide will end pain needs to know that it causes a lifetime of pain. Pain, confusion and hurt.
Because no one wants to talk about it.
When someone loses a parent to an illness, an accident or at someone else’s hand? People are there for them. They listen to them. They commiserate. They form a support for them that is so goddamn necessary to heal. Not so when someone you love takes their own life.
Suicide is a topic that no one wants to be connected to.
People don’t want to talk about it. They can’t hear about it. They don’t want to comfort you because they don’t know how. It’s not something that they want to believe can happen to you. They don’t know what to say. They don’t have the answers either, and that makes it difficult for them. It’s because of this that my father’s suicide has made me the loneliest I have ever been.
I’ve been isolated in so many ways because of it. So isolated that I don’t know if I will ever not feel like I’m separated from everyone else again.
I could sit here and tell you all the ways this has changed me. All the ways I am stronger. All the ways I am scarred. About crying in absolute emotional pain and just wanting my dad when just a few weeks later, I gave birth to my daughter. About all the irrational fears I have. Someday, I may tell you about all of it.
Today, I want to show you that my Dad was a real person, just as I am. I love him today just as I always have.
The day my son was born, my dad wasn’t able to be there. I can’t remember why. I believe my dad was cooing to him. But the obvious joy at having that boy makes this photo one of my most treasured memories. I wanted you to see it.
My Dad was a real person. He existed.
Today, I tell you about my Dad because this community is amazing. I read your stories and I am humbled by your courage, your tenacity and your amazing support for each other.
I’m so proud to be a part of this project, even in a small way. I’m so proud of every person who has posted and who has commented. I’m so proud to know that this community exists.
You have no idea how much you would have helped me in 2004, but I do.
I tell you my story because you’ve told me all of your stories. Your stories, in your voices, about your experiences have made me feel like people don’t suck as much as I thought.
I need you to know that if you have lost someone to suicide that it’s time we start talking about it and making it okay to talk about it.
I need you to know that if you are thinking about killing yourself, my story is a very good example of what you will leave behind. By killing yourself, you will have caused more pain than you can imagine. Pain that will never go away. Please, please, don’t do this to everyone in your family. Don’t do this to your parents, children, and friends.
I need you to know that for six years, I’ve stopped believing that anyone would love me more than they love themselves. I don’t know that I’ll ever believe that again.
I need you to know that I am sharing my story because I trust you.
Thank you all for inspiring me.
Thank you for making BB2G the community what it is today.
Thank you for being here.
If you are feeling desperate, alone or helpless, or know someone who is call1-800-273-TALK (8255) to talk to a counselor at the National Suicide Prevention Lifeline.
As I reached to open my aunt’s door, I was stuck between two places. In that moment, with my hand clenching her doorknob, I could move forward or I could retreat. There simply was no in between.
I pushed the door open and the heat from my aunt’s house engulfed me.
He was there. Sitting at the table. I greeted my aunt, shed my coat, and sat opposite him at the table. And I waited.
It wasn’t my turn to talk.
He apologized. His words were much what I expected them to be. I knew the story…the reasons why he did what he did. They had been the best of friends.
I can still see him, rubbing one of his hands with the other, worrying his skin raw.
But his eyes? His eyes expressed his sorrow and remorse in a way that his words never could.
I’m not sure I have ever seen eyes as soft as his were in that moment as he sat there, stumbling over his words, looking to me for encouragement to continue speaking.
I let him speak until he was completely deflated…words expelled like air from a balloon overfilled to near bursting.
There was a familiarity about him. Some part of my brain remembered him.
In that moment I was left to make a choice. To forgive him or to hang onto my anger and hurt, polishing it until it gleamed with bitterness.
It was the moment to choose whether to set him free of his burden or take that opportunity to make him pay. To crush his hopes for a release from even a small part of his guilt.
I didn’t hesitate for a moment. I forgave him.
I made a choice that freed us both.
The easy, predicable choice would have been to hold my anger close, fueling it with thoughts of all that had been ripped from me.
The more difficult choice was to forgive him, to recognize that he was human and that relinquishing my anger would bring me peace unlike anything I had ever known.
His life was already broken. He would never be the person he was before he killed my father.
But my forgiveness? He sat there and asked it of me.
And offering that it to him was truly the fork in my road.
The Road Not Taken — Robert Frost
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same.
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference.
*The decision to forgive this man who destroyed my family was my choice. This was the right choice for me. If I were my grandmother, grandfather, uncle, aunt, or mother, I can’t say that my choice would have been the same. That is impossible to know. I can only truly know what is best for me. I love my family beyond words and their strength astonishes me to this day.
The following post is from a series called ” A letter to someone who stopped talking to me.” The posts from this series will appear on Stigma Fighters and Bank Back Together.
It’s been a while since I wrote you. Six months. What was the last thing I sent you? A postcard, probably. Someone – one of your sisters, my aunts – told me a while back that my letters to you went unopened. Hence the postcards: nothing for you to open (or not open), a pretty picture for you to look at, and less aching white space for me to fill each week. It made it easier – for me at least. Nothing too heavy. News from up here in the north. Family. Friends. Work. Then best wishes for your well-being and family down there.
Phone calls from me ceased when you could no longer take them. When you could no longer remain awake at the phone or even, perhaps, know who I was. You used to love texting, before illness took its final hold, but the special large screen phone we got you so you could take and make calls from your room languished unused and uncharged.
I cherish the times I came to visit with you, on my own or with Pam. The time I took you to Washington Wildfowl Trust to see the ducks. Holding your hand. Sitting with you in your room while you slept. I remember the moment (not precisely when but how it felt) when the question “When will I go down next?” shifted into the knowledge I would not.
And then the phone call telling me you’d gone. A week or two of uncertainty, doubt, fear. Then plans to be made. Hotel rooms and a hire car. Routes. What to wear. That was okay. I’m good with that stuff.
And then there I was, back in Liverpool one last time. Squeezed in the back of the funeral car. Your face staring at me all the way to the church from the framed photo they’d propped at the back of the hearse. Carrying your coffin – no weight at all really – up the aisle of the church I remembered so well. The priest’s eulogy. “She was a saint. Literally, a saint. She always put others first.” And I wanted to scream.
YES SHE WAS. SHE DID. AND LOOK WHAT IT FUCKING DID TO HER.
I didn’t scream out, of course. I stayed quiet in my seat. I own my share of the blame. The depth of your need terrified me and I left you to get on with it all. I wasn’t there when you needed me to be. It was easier to pretend I didn’t notice. To visit occasionally and then not at all. To phone occasionally and then not at all. To write letters, and then postcards, that said very little and needed no reply. I’ve learned a lot about being there these past years but too late for you and me. There is no going back but I would do better by you now.
I don’t believe these words will find you now any more than the postcards did. You are gone. Not gone somewhere. Just – gone. But there are tears in my eyes and perhaps that stands for something.
Tonight has been one of those nights…
Where you’ve held it together at work all day.
Didn’t eat a good lunch.
But kept your self-care appointments, involving hours at the doctor’s.
Then you get home…
See a video where children of color are treated poorly by law enforcement, reminding you of the profiling your family has experienced over the years because they look like a gang banger.
So, why not pick a fight over nothing with your ex (who happens to be your roommate), even after he made you dinner & handled the kids.
You scream, and cry, and rage. And he looks at you blankly, trying to understand why. And you respond: “It’s nothing”
Except it isn’t nothing – it’s deep down visceral fear…
That POC are getting treated unfairly.
That your white passing children will have even more privilege because of his German last name, light skin, and their anglicized Spanish.
“¿Mamá? Cómo se dice ‘pancake’ en español?”
“Crepé, preciosa or bañuelos, depends on who you’re speaking to” the Spanish words falling freely from your tongue but hearing them say the words reminds you of ‘los gringos’ and secretly you’re thinking ‘good’.
But even with that privilege, school is no longer a safe space for them.
Because moving to rural America, 2000 miles from family, felt right 4 years ago because little Amy was throwing gang signs in every picture at your daughter’s 9th birthday party.
And here in Middle America, a boy in her class, who talks bomb threats and knows every weapon class in both hunting and military capacity, is told “better be careful who hears you talking like that in high school Michael, you could get suspended.” But no one takes him seriously today and you think “thank goodness they’re going to different schools next year” when she tells you about this.
And your heart hurts for the world but most especially for your cousin who lost her dad and stepmom in the Texas shooting last year. Who, at 34, younger than you are, is going to be a grandmother, but she’s so grateful for life in the face of death, she has no anger towards her daughter, only love.
So you apologize for taking your pain out on your ex.
Take your pills and drink some water.
Put a comedy on the TV.
Cuddle your babies close, all of them.
The woman sized one, taller than you but with so much to learn yet. The scrappy ‘baby’, age 8, who thinks she’s also 13, who loves her sister’s hand-me-downs and stuffs her shirt with toilet paper to mimic the breasts she doesn’t yet have. The furry one, and the scalely ones.
And wait for the meds to kick in and shove the fear and worry back into the abyss of your heart.
Hoping that with the morning you’ll put on your crown and press on for the day. Fingers crossed that your coworkers won’t notice that your eyes are puffy again.
Yup, it’s been one of those nights.
Growing old is optional, growing old gracefully even more so.
My mom did not have it easy in the last 5 years of her life. Her first problem was with her sciatic nerve, which first caused pain then weakness in her legs and eventually left her dependence on a wheelchair. I tried to keep in mind that she was in pain, scared and unsure during the times when she seemed to be going the extra mile to be as difficult as possible, but I wasn’t always successful.
After my father passed (Mom went just 4 yrs later), my mother became a shut-in. This was pretty much by choice. We lived 4.5 hrs apart, I’m an only child and we have no relatives who still speak to us living nearby. She refused to consider moving and her house looked liked something you’d see on “Hoarders,” but that’s yet another story. She wanted to live completely independent of help, especially mine, because this was the first time in her life that she was on her own, so I think she wanted to prove to herself that she could.
Did I mention “shut-in?”
She was defiant, she was determined to be independent and she was lying…I had a 74-year old teenager on my hands.
She ordered food through Amway. She bought her clothes via catalogs. She banked via the mail. She had a few friends who would come over and check on her most days, but the situation was far from ideal. Her mind was not the best, but she was sharp enough to lie to me about anything that didn’t show her situation in the best of lights.
For instance, she never told me about the time she fell and had to call the neighbors to help her up. She never told me about the time, in a very confused state, she called 911 in the middle of the night because -best I can piece together- she had a dirty diaper and was having trouble changing it herself. The cops busted the front door open and were not at all pleased to find her in no actual danger.
She did tell me about the time she called 911 for a ride to her doctor’s appointment, only because she felt a grave injustice was being done. Something had happened with her scheduled special needs ride, and she reasoned that if the doctor needed to see her then she needed to take an ambulance. She had received a bill for $700 for that non-emergency ride and didn’t think she should have to pay it. I did talk her into paying the bill, hoping she’d learn her lesson.
I tried mentioning the idea of assisted living, but she wouldn’t hear it.
“They beat you and lock you in your room!” she screamed. Eventually, I convinced her to get some in-home elder care and a woman would come by three times a week for three hours at a time to cook, clean, and run errands for her. Finally, I could get the low-down on her condition from someone who would be honest with me.
This started out well, as Mom enjoyed having someone to talk to and she was now getting fresh, home-cooked meals instead of the packaged crap she ordered via the mail. But, it didn’t last. I got a call from the coordinator to tell me my mom was hitting the workers. She was also being verbally abusive. At one point, Mom chased a worker out of the house, screaming at her from the front door.
I got emails from a friend of Mom’s who had visited her, only to find her crying hysterically, saying “I hate my life!” and hitting herself in the head. When asked about it the next day, Mom acted surprised and said nothing like that had happened.
Then, Mom came down with a bad cold that required someone to stay with her while she was ill. The elder care folks were great and worked out schedules so that she was tended 24/7 until she got better. Problem was, despite appearing to hate these helpers, once Mom got better, she didn’t want the 24/7 visitation to end. In fact, now she was refusing to let them leave. I’d have been fine with the additional help, but we could not afford the $10,000 per month for very long.
I had to talk with Mom and tell her it had to stop. This did not go well, and there were tears, but in the end, she cut back to 1 visitation, 5 days per week.
The pain and weakness in her leg was getting worse, and it was spreading to the other leg. We talked to a number of doctors, but she didn’t like most of them and liked even less what they had to say. Finally, after yet another fall that she still would not admit to, she was in the hospital again. Her doctor convinced her to have back surgery, and at last she agreed. She was hell on wheels both pre- and post-surgery. She had a fear of falling that was off the charts.
When the nurses tried to move her in the bed, or, heaven forbid, try to get her to stand up, she’d scream. I’m talking hear-her-down-the-hallway screaming. I’d leave the room and stand outside biting back tears whenever anyone tried to work with her.
When she was well enough to leave the hospital, she went to a rehab facility to help her get back on her feet as much as possible. It was there that some medical genius, who I’d kiss on the lips today, put her on anti-depressants (yeah, I know, “what took so freakin’ long?!” – she refused them before because she didn’t want to “take dope”). Mom became a bit more reasonable and a little easier to deal with. More like heck-on-wheels. When I asked her why they put her on the happy pills, she said “so I’d stop screaming.”
During rehab, her doctor spoke with me, informing me that she could not live on her own. Preaching to the choir, sir. So, through hook, crook and threats of Adult Protective services, I got her to agree to move “temporarily” to an Assisted Living facility near me. I found a really nice place a mile from my home and they assured me that the beatings would be kept to a minimum. (Joke!)
We moved some of her favorite things up and set up her two-room apartment to look really nice and homey. When she got out of the hospital we drove her straight to her new home. Despite hearing how horrible it was, we watched her start to enjoy life again. She was making friends and playing Bingo every day. God forbid you came by during Bingo hours, only did THAT once.
Mom *loved* the call buzzer and actually wore the one by her bed out, because she used it so much. She still managed to keep things lively. I got a call from her one Easter morning, telling me she couldn’t move her leg and perhaps she had had a stroke. “Should I go to the hospital?” Well, the normal answer would be “Hell YES!” but I had learned to ask. “Why didn’t the nurse call the ambulance for you?” I ask. Mom said that they wanted her to check with me first. None of this was adding up, so I told her I’d be right over. When I got there she was wheeling around her room, fully dressed and looking fine. I asked which leg it was that she could not move. “This one!” she said, bouncing the leg up and down.
Her behavior continued to become more erratic, and I got a call that I never thought I’d get. Mom was flashing her boobs at the male help and at some poor, unsuspecting wheelchair repairman. Oy. A doctor was brought in and a diagnosis of dementia was made. This only pissed her off. She accused the facility and the doctor of telling horrible lies about her. “I’d never do that!” she yelled.
In the end it really was a stroke that took her. The weekend of Thanksgiving she had a massive stroke affecting half of her brain. She had her 78th birthday in the hospital, but was not aware enough to know it and she passed just a few days before Christmas.
I’m still working on cleaning out the house, but it is getting close to being done. I avoid driving by the assisted living place, still too many bad memories. I can laugh about Mom flashing the help. It’s two years later and I’m finally getting to the point that I don’t jump when the phone rings.