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.
I remember it well. I was in the back room at my parents house where I’d been staying for the last week or so to help take care of my mom. She was sick. She had taken a turn for the worse. She’d had Stage 4 Colon Cancer for four years. It had been four years of fighting: first chemo and surgeries, and then natural medicine and a special diet.
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.
And she did.
I am so sad I wasn’t there when it happened.
I am also grateful.
LAUREN ELYSE says:
May 12, 2011 at 1:31 pm
I remember holding on to the hand of a friend in the hospital while she died. To this day, I wish I had not been there. It was so hard. I can’t imagine losing a parent like that, but I hope you have comfort knowing that she was not alone, and that you made the right choice for you.
KRISTIN says:
May 12, 2011 at 1:36 pm
I can’t imagine much that could be worse than allowing a loved one to go (even if you know it is time). {{{Hugs}}} and I’m so sorry for your loss.
Michelle says:
May 12, 2011 at 3:14 pm
My sincerest condolences. My good friend had Stage IV breast cancer and fought relentlessly for 3 years. I saw her in the hospital the day before she died but I just couldn’t bring myself to be there when she died. There are days I regret not being there and other days that I am glad I didn’t go. I understand your pain and hope you are healing.
BETH says:
May 12, 2011 at 3:22 pm
In retrospect, I shouldn’t have read this at work, but I’m glad I read it. We went through the same thing with my papau about a year ago. It still seems surreal that it’s been that long. I know what you mean about knowing the last time. I didn’t go back either. My mom and sister and I kind of huddled up together at her house a few blocks away and tried to sleep while we waited for the call we knew was coming. Part of me wishes I’d been with him, but part of me knows that I want to remember him alive – no matter how marginally – instead of the alternative. I don’t think I could have handled that as hard as it is already. Anyway, thank you for sharing this, and know that you did so much for her and that she knew even if she couldn’t tell you.
TRIPLEZMOM says:
May 12, 2011 at 6:14 pm
I can’t imagine and I’m so sorry for your loss. I say this a lot, but I really believe it’s true: you did the best that you could at that time. And maybe it wasn’t perfect, but that’s okay. Hugs.
Melissa says:
May 12, 2011 at 9:45 pm
I understand this more than I’d like to – my sister and brother and I were there with my dad when he was in hospice at home his last week or two. I was glad to be there but felt stretched to capacity at the same time. I didn’t want him to leave this world but every morning I worried that he would need something I couldn’t provide. Knowledge, comfort. I’d wake up and immediately wonder if I’d be equal to what the day and my father required. I didn’t want to let him down. It felt like a blessing to have a couple days away at the end, but I’ve always felt guilty about it. I went back the day before he died and kissed him when he was sleeping, but I think he’d have been glad that my mom was with him when he passed and we kids were sheltered if it caused us so much pain. I don’t care how old you are, it’s hard to watch a parent pass.
I’m so sorry for your loss.
Tisti says:
May 12, 2011 at 10:06 pm
I am so sorry about the loss of your Mom.
I didn’t know if I wanted to be there when my Dad actually passed or not. I left that decision up to God. In the end, I was not there and I am grateful.
The loss of a parent is like no other…I will keep you and your family in my thoughts and prayers.
NTE says:
May 20, 2011 at 10:43 pm
I’m so sorry that this happened. And I understand about not being able to be there. When my grandmother died, I was in the room, holding her hand, wanting to be anywhere but where I was. When I think back on it now (three years later), it seems like it happened to someone else. It was too awful to have been my real life. But it was. I hope you know that you did the best you could, and that’s all you can do.
My heart breaks for you. I know you think you gave up fighting; you didn’t. The goal just shifted. Once you all made the decision to change the care your mom was getting, you were fighting for her to live out her last days with love and family, not intrusive hospital noises and painful car rides. She knew you loved her. I really believe it’s ok to make a decision to sit out on something so hard. Trust yourself. Hugs
Wow that was so hard. Hugs . This brings my mind to a thing my adopted Dad said many years ago . “You did the best you could with the tools you had available , that’s all anyone can do. ” He was a great believer in that we should let go of guilt whenever possible when it was not productive. This is definitely that kind of guilt . Be gentle with yourself , she would want that.