This post is about my personal experience with grief since the death of my mom. I, like everyone else who has suffered loss, am trying to find the best way to navigate through it. This post isn’t a post for sympathy or pity. What I hope comes out of this post is awareness and understanding. My hope is that sharing my experience will help others mourning a loss feel less alone and to help those who haven’t been through it try to see it through the eyes of someone who is. I hope to do for others what many have done for me through their willingness to share details of their personal journeys.
The word, “grief” is easy to define. Grief, as a process, is not. Grief was summed up best in one of my textbooks,
“Each person’s grief is like all other people’s grief; each person’s grief is like some other person’s grief; and each person’s grief is like no other person’s grief.”
My mom died seven months ago, but I just recently started experiencing incredible bouts of sorrow. One night last week I started sobbing uncontrollably. I looked at my husband through a flood of tears and said, “I don’t know what’s happening?” I’ve taken it upon myself to give myself my own made up diagnosis. I call it “chronic heartache” because I truly believe this is what I’m experiencing.
I was surprised at how well I was doing the first six months after my mom’s death. I chalked it up to experiencing anticipatory grief. Anticipatory grief often occurs when you are aware of a looming death and accepting it’s inevitable. This grief is not only about accepting the future death, but accepting losses already occurring as an illness progresses. It often stirs up intense emotions as you witness someone experience the loss of their independence, loss of cognition, loss of hope, loss of future dreams, loss of stability and security, loss of their identity and your own, and countless other losses. Up until last week, I thought I had already experienced the most intense part of my grief journey.
Grieving is not a one-size-fits-all process. There are so many factors to take into consideration (e.g., how we learn to cope, the type of loss, how the loss occurred, etc.) I remember when I shared my mom’s diagnosis with a group of colleagues in December 2015, a gentleman who had just lost his father to a sudden heart attack came up to me and said, “At least you’re going to get to spend time with your mom.” He only knew what he knew. He knew sudden losses are traumatic. Unfortunately, a little over a year later, I learned slow losses can be as well.
I was with my mom and dad when her oncologist told her she had less than nine months to live. She died less than three months later. I can’t begin to describe the depth of despair in learning that one of the people you love the most in the world is going to die soon. Worse than that, I can’t begin to articulate the excruciating pain and helplessness one feels when you witness someone being informed that they are going to die soon. And she was trying to comfort me and my dad?
I couldn’t focus on questions that I should have been asking the doctor because I was trying to process what I had just been told. How could I ask questions when I could barely breathe? How could I focus on asking questions when I was forcing myself not to scream? I was trying so hard to keep it together.
Last week I told my husband that I didn’t know what was happening to me. I do know what is happening. I’m mourning the loss of the person I have loved the longest in my life. I’m mourning the loss of one of the few people who loved me unconditionally. No matter how many books or how much we may know about grief and trauma, it doesn’t make us immune to either and there isn’t a timeline for grief.
Since last week, I’ve had a moment of clarity. One of my unhealthy coping strategies is minimizing my personal painful experiences. I know there are many of you reading this who do this as well. I tell myself and others things like,
“At least I had 36 great years with my mom.”
“At least I had closure with my mom.”
“I was blessed to have a great relationship with my mom.”
A positive outlook is healthy, but not when we use it to mask our grief. Minimizing the pain associated with grief is only doing us harm. Yes, maybe our situation/experience isn’t “as bad as it could be,” but our pain – our heartache – is real. It’s important to allow ourselves to feel it…to hurt, to cry, to scream…to talk about it. Watching someone who is severely ill can be traumatic. Watching someone die can be traumatic. A former hospice nurse (who was one of my favorite instructors) told a student who confessed that death freaks her out that death is beautiful. I believe it can be. I know it isn’t always. The fact that she didn’t take this opportunity to educate this group of people (where many would be working in end-of-life care) really bothered me. It’s misleading to those who will be the professionals guiding families through the death of a loved one.
There have been incredible advances for pain and discomfort at the end of life, but the reality is there are still situations where discomfort and pain are difficult to control. I wish my mom’s hospice team would have acknowledged that we weren’t going to be able to keep her comfortable with what they had available. I would call the on-call nurse or talk to the nurse who came by and they would say, “are you rubbing the anti-nausea cream on her?” “Did you give her morphine? You can increase it until she’s comfortable.” We had a bottle of morphine, with a dropper to squeeze drops under her tongue. The thought of the taste made her vomit. Everything did. She hadn’t eaten in weeks, nothing substantial in months. She was receiving small amounts of fluid orally and intravenous fluids had to be stopped at this point (because there comes a time at end of life that administering fluids causes more harm than good), she was incredibly weak and immobile but was somehow still vomiting. To top it off, she had developed a horrible bed sore. My mom should have been on a morphine pump. Some hospice services can’t offer a morphine pump in the patient’s home. They kept reassuring us we could keep her comfortable. We moved her out of hospice and back into the hospital for her final days.
My mom’s cancer spread to her abdominal lining (peritoneal metastasis). The peritoneum is a membrane made up of two layers. One layer lines the cavity and the other layer lines the organs. The peritoneum helps support the organs in the abdominal cavity and also allows nerves, blood vessels, and lymph vessels to pass through to the organs. Tumors started forming and wrapping around all of her organs in her abdomen and at the time of her last CT, there was a reoccurrence of tumors on her pancreas. When cancer spreads to the liver or portal vein (the vein that carries blood to the liver), malignant ascites develops and fluid builds up in the abdomen.
On the days we weren’t taking my mom in for fluids, we had to take my mom in weekly for a procedure called paracentesis to remove the fluid from her abdomen to help relieve the pressure which was causing shortness of breath, intense pain from her skin stretching, pain from the pressure the fluid was putting on her organs and on tumors. Paracentesis is a double-edged sword. It relieves the pressure but when they remove the fluid (they never pulled less than 5 liters from my mom’s abdomen – an equivalent to almost 1.5 gallons) there is a depletion in electrolytes, protein, etc.
To complicate things even more, she had the Whipple surgery the year before (which was necessary at the time to remove the original tumor and extend her life), but her digestive system was reconstructed and now functioned differently than most people. They offered chemo to try to decrease the severity of symptoms and to try to prevent a bowel obstruction. So…no, rubbing anti-nausea cream on her wrists wasn’t going to do the trick. I found my own medical journal articles and was able to figure that out. During my research, I found an article that recommended inserting an NG tube to pull the contents from my mom’s stomach so she could stop vomiting and experience temporary relief. We had to admit her to the hospital to do it, and it did work, but it was just a temporary solution so my mom could have some final quality days with family and friends.
I believe there is a little bit of post-traumatic stress accompanying my grief. I witnessed my mom experience great discomfort as well as some intense pain and heartache. When we’re living it, there’s no time to think about what is happening. My mom was my priority and I would deal with me later. I refused to break down in front of my mom. She was actively dying and feeling extreme guilt because she believed she was a burden on everyone. I compare the experience to someone torturing your loved one while forcing you to watch. It is the most helpless feeling in the world.
When my mom witnessed severe discomfort and pain, it wasn’t like you would imagine. She wasn’t moaning, wailing, or even grimacing much. She would get very quiet. She would get this look and I could tell she was uncomfortable, but it wasn’t apparent just how uncomfortable she was. I remember one of the many times in the last 8 weeks that we were in the ER and the nurse asked what my mom’s pain level was and she said it was a 10. 10?!!! She hadn’t made a peep. I believed her pain was that bad, I just felt awful that it got that bad. I told the nurse that I could never gauge when it was a 10 because my mom didn’t show signs that I would expect a person at max pain would show. The nurse said, “It’s her generation.” I kind of smiled and she said, “It really is a part of it.”
Finding My Way
I shared with a friend that losing my mom has been like losing an eye. It is similar in the way that when you lose something/someone that has been part of your “normal” your entire life, learning how to maneuver without it/them, is a process. I also see the world differently now.
I’m trying to figure out who I am now. I’m different in so many ways. I was able to make it to many of my mom’s appointments throughout her illness and I lived with my parents for four months to help care for my mom at the end of her life. Even though it was hard to watch my mom’s health deteriorate, I am incredibly grateful I had the opportunity to care for her and to have that time with her. I learned more about myself, others, and life than I’ve learned in school or any job I’ve ever had.
I do find it strange that it’s possible to feel extreme heartache and joy simultaneously. Maybe some of you can relate to to this. Deep down there’s sadness present but I still get giddy when my husband walks through the door after work. I feel pure joy when my nephew and I talk to each other in “dinosaur,” but my heart aches terribly that I can’t laugh about it with his gammy. I believe this is what our family friend, Neal, meant when he said the loss starts off as a scream in your head that is always there as your doing routine, everyday things. He said after years have gone by, the noise is still present all the time, but it eventually becomes a whisper. I think that is an analogy that I can and will continue to relate to.
Some days go smoother than others. I find myself completely depleted at the end of most days. I believe it’s because everything takes more effort and energy and much of the time it’s not conscious. I find myself avoiding social situations for fear that grief will sneak up on me. Sometimes it just hits me like a freight train. The first social gathering at friends that my husband and I were invited to since my mom’s passing stirred up intense anxiety in me. There was going to be friends of friends attending. I was so anxious about the possibility of losing control of my emotions and crying and making everyone uncomfortable. I was afraid I would embarrass my husband and myself. This still happens and unless you’ve been through it it’s really hard to understand. I don’t want to lie to people if I feel anxiety coming on, but I also feel like if I speak the truth about my heartache that I’ll be judged because I’ve convinced myself that most people probably believe I should “be over it by now.”
We recently had to do some creative writing about our upbringing and how we became the person we are today in one of my classes. It was a very emotional assignment. We had to present it to the class. That day happened to be the 6-month mark of losing my mom. My voice started shaking and the tears came. It was the “ugly cry.” I think it’s the only cry I have! I couldn’t finish it and waited until after the last person presented to give it another go. I was embarrassed at first but then had an epiphany. From now on, I have decided to look at this differently. I’m not responsible for how others feel about my grieving process. How people feel about my grief, how people feel about your grief is their business or their problem (however you want to look at it), not yours, not mine.
After all that, I’m not sure how to end this so I guess I will end it like I have often done in the past…
Every single human being has one thing in common. There’s not a single one of us who is promised tomorrow. Be GRATEFUL for each day. Be HOPEFUL for many more. BELIEVE there’s a reason and have FAITH that God will help you through it. – LC