I know I've written about this before, but I've just been thinking about Mom a lot today and needed to write it again.
This morning on the way into town, for some reason or another, I had a flashback of a phone call with hospice I'd had about seven months ago. 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, and had taken a decidedly turn for the worse. She'd had Stage 4 Colon Cancer for four years. It had been four years of fighting, first with chemo and surgeries (which is a whole other story), and then with natural medicine and a special diet (also another story). She'd lived far longer than the doctors had 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 had stayed low, and nothing had showed up in her monthly exams for a long time. Then the numbers did start to go up. Then, after three years of nothing, they found a new spot on her liver. It only took four months to go from finding that small spot, to my being in that back room on the phone with a lady from hospice.
Mom had been getting intravenous fluids that whole previous week. As weak as she was, we would help her get dressed, get her to the car with 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 just getting too sick to make the trip anymore. We'd been talking to her doctor, to 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 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 to be 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 me 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 long as we could, as she got sicker and sicker? Were we doing this for her, or were we doing this for ourselves? Beyond these questions, we discussed that Mom's body wasn't really benefiting from the fluids as well as we'd hoped. Her liver and kidneys had already begun to shut down, and we knew she experiencing fluid retention and swelling. The fluids we were fighting so desperately for were doing more harm than good.
I had one of those moments right then where the blood thunders through your ears, the air gets sucked out of 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, we'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 then we made arrangements for her to come over and talk to the rest of the family. We'd been fighting this disease aggressively as a family for over four years. It was going to take some professional help to transition from that all consuming fight into 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 went out and left Renae and I alone with Mom. We talked more about how this was really it. We told her how much we loved her, and how we would be there with her through it all, and then 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 just stayed in denial about the fact she was really going to die so we'd never had that discussion. Once it was out there, it just seemed like any fight she had inside just went away. She was just ready for it to be over with.
Renae, Steph, Brandon, Cookie and I all took shifts staying with her and Dad. At first we were still gently trying to get her to eat and drink, but in retrospect that still may have been our lingering need to fight for her life. Eventually even that stopped.
I would stay for two days, and then leave for one or two. I would go to work on the days I was away. Work became somewhat of a sanctuary where my mind could be otherwise occupied. Then I would drive the hour and a half back to my parents. I would feel the heaviness become worse and worse until I drug myself up their steps and into their house where I would see her again.
We'd brought a hospital bed into their living room, so I would see her the minute I opened the door. Every time I opened that door, it made me want to recoil in horror. Our mom was lying there in that bed dying! It couldn't have felt more surreal. By then she was drugged and asleep, and unable to talk very much even when she was aware. It was a living, waking nightmare we couldn't escape.
A strange, numb, detached-ness decended 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 her 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. We knew 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 meds 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. Renae 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. Renae then called Danny, and a similar conversation happened.
Renae was on one side of Mom holding her hand, and Cookie was on her other side holding her hand when it started to happen. They both told her it was okay to let go, and then she did. I am so sad I wasn't there when it happened. I am also so grateful I wasn't.
This morning on the way into town, for some reason or another, I had a flashback of a phone call with hospice I'd had about seven months ago. 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, and had taken a decidedly turn for the worse. She'd had Stage 4 Colon Cancer for four years. It had been four years of fighting, first with chemo and surgeries (which is a whole other story), and then with natural medicine and a special diet (also another story). She'd lived far longer than the doctors had 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 had stayed low, and nothing had showed up in her monthly exams for a long time. Then the numbers did start to go up. Then, after three years of nothing, they found a new spot on her liver. It only took four months to go from finding that small spot, to my being in that back room on the phone with a lady from hospice.
Mom had been getting intravenous fluids that whole previous week. As weak as she was, we would help her get dressed, get her to the car with 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 just getting too sick to make the trip anymore. We'd been talking to her doctor, to 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 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 to be 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 me 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 long as we could, as she got sicker and sicker? Were we doing this for her, or were we doing this for ourselves? Beyond these questions, we discussed that Mom's body wasn't really benefiting from the fluids as well as we'd hoped. Her liver and kidneys had already begun to shut down, and we knew she experiencing fluid retention and swelling. The fluids we were fighting so desperately for were doing more harm than good.
I had one of those moments right then where the blood thunders through your ears, the air gets sucked out of 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, we'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 then we made arrangements for her to come over and talk to the rest of the family. We'd been fighting this disease aggressively as a family for over four years. It was going to take some professional help to transition from that all consuming fight into 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 went out and left Renae and I alone with Mom. We talked more about how this was really it. We told her how much we loved her, and how we would be there with her through it all, and then 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 just stayed in denial about the fact she was really going to die so we'd never had that discussion. Once it was out there, it just seemed like any fight she had inside just went away. She was just ready for it to be over with.
Renae, Steph, Brandon, Cookie and I all took shifts staying with her and Dad. At first we were still gently trying to get her to eat and drink, but in retrospect that still may have been our lingering need to fight for her life. Eventually even that stopped.
I would stay for two days, and then leave for one or two. I would go to work on the days I was away. Work became somewhat of a sanctuary where my mind could be otherwise occupied. Then I would drive the hour and a half back to my parents. I would feel the heaviness become worse and worse until I drug myself up their steps and into their house where I would see her again.
We'd brought a hospital bed into their living room, so I would see her the minute I opened the door. Every time I opened that door, it made me want to recoil in horror. Our mom was lying there in that bed dying! It couldn't have felt more surreal. By then she was drugged and asleep, and unable to talk very much even when she was aware. It was a living, waking nightmare we couldn't escape.
A strange, numb, detached-ness decended 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 her 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. We knew 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 meds 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. Renae 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. Renae then called Danny, and a similar conversation happened.
Renae was on one side of Mom holding her hand, and Cookie was on her other side holding her hand when it started to happen. They both told her it was okay to let go, and then she did. I am so sad I wasn't there when it happened. I am also so grateful I wasn't.
3 comments:
It is the oddest feelings that you feel such conflict and denial and the WEIRD NUMBNESS, relief even, watching a persons release.Its unnatural. Like your a fly on the wall. I know you feel regret for not being in the room holding her hand, but your mom knew you and you must believe that she understood how you HAD to cope with her leaving. You always would think youd be right there for the last breath, but in reality, there a few that CAN. We can read and talk ourselves into being prepared, and then when the time comes, we are lost. Keep always in your mind that your mother would never make anything harder for you. Thank you for sharing this memory Rachel. You have such wonderful women in your family.
It's so weird, I posted a reply comment here earlier this week, and it even posted (I know because blogger emailed my reply to my email!) Oh-well, i can repost it:
Thanks Nokomis <3 You are so right- there are some things you just can not prepare yourself for (although it sure doesn't keep us from trying!).
It's been almost seven months now- it took a long time to actually be able to write the whole thing down. It just felt so dark and heavy before. I'm feeling lighter these days. I'll always miss her, but I am so glad she isn't suffering. I'm holding her close in my heart until we are all together again.
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