The word of the day is, you guessed it, compartmentalizing. Before going to see my mom today, I was having one long meltdown. I had no idea how I was going to keep my emotions in check during my visit when all I could think about was how this, in all reality, was probably my last Mother’s Day with my mom. I didn’t think I could do it and found myself making that my mantra while getting ready. Not to mention the fact that I’m childless not by choice so Mother’s Day is an emotional day for me anyway. Needless to say, my emotions were at an all-time high. Driving to the hospital I had a heart-to-heart talk with myself. I told myself that my main goal was not to cry in front of my mom and upset her. I also told myself that my emotions could not control me today, that I had to control them. Enter the idea of compartmentalizing. Mentally I created a room in my brain that had concrete walls three feet thick and encased in titanium and stuffed all the emotions I had been feeling this morning and slammed the door and locked the twenty padlocks on it and headed into my mom’s room. She had been put back on BiPAP this morning because her oxygen levels dropped again. The first half hour or so my mom just kept asking me to take her home. I could feel those concrete walls cracking in my brain and I just forced myself not to think about it. I had to tell her several times that the doctors feel that she just wasn’t ready yet. And she seemed to accept my reasons only to ask me seconds later when she could go home. At one point I mentally added another foot of concrete to that room. All in all, though, I got through it without breaking and, as I walked out, I felt pretty proud of myself that I was able to control my emotions and didn’t let them control me. I did what I thought was impossible.
I took a personal day today and didn’t go to the hospital to see my mom. I guess when my sisters and brother got there she had been moved and was very disoriented and confused and calling me. The nurse told them that she had been doing that for a while. When my sister told me that I felt so horrible and guilty. I felt like I should have been there and felt so selfish for wanting a day of normality. And yet, I needed it. Yesterday afternoon it was like I ran into a solid brick wall emotionally and physically. I was doing ok until mid-afternoon when my brain just kind of said it was done. I couldn’t think straight at all and at first, it worried me. Then I realized that all the stress of my mom’s illness had finally caught up with me and I needed to take time away from it all. I’m going back to see her tomorrow and I’ll share more of an update with you all then.
Mom continues to make steady progress although she did have an episode where her oxygen levels plummeted and she had to go back on BiPAP for a while. They are no longer talking about a feeding tube, for now, and she is enjoying some real food again. This afternoon she had pureed macaroni and cheese and a thickened orange drink that was fortified with protein powder and nutrients, which she said was very good. We can see her getting stronger now that she is eating food again. However, whenever the topic of her recovery comes up her forehead crinkles up and she gets an overwhelmed look on her face. She knows how long it is going to take and is very frustrated by how hard everything is for her. The most important of those things being her breathing. The consensus among my siblings and me, for the moment, is that we will fight for her recovery as long as she wants to. It just feels like we are walking down this road that runs along a cliff and that at any moment the life that we all know will just fall away from us into some abyss.
The other day when I was visiting my mom in the hospital, she had BiPAP on so it was very hard to understand what she was saying. That came back to haunt me today. During my visit today, she started talking about that and how I couldn’t figure out the word “eat” after figuring out the letters “e” and “a.” She went through the whole scenario and then declared me to be a “dumbass.” I knew I heard her correctly but it took me a second to fully process it.
“Did you just call me a dumbass?” I asked her.
She responded by emphatically nodding in the affirmative and then gave me the biggest grin I’ve seen on her face in weeks. It just made me laugh out loud. Then she called my older sister over to her bedside and told her she was in “deep shit” and once again grinned. She was totally playing with us and it was glorious to see that side of her personality again. Even in her weakened state, struggling to breathe, she still has her sense of humor. That is what I admire most about her, her ability to laugh even in the darkest times of her life. It has gotten her through so much pain and heartache and I am hoping it gets her through this as well. But from now on, I am officially a “dumbass.”
I saw my mom today and she was off the BiPAP and had a high flow cannula in her nose that was helping her breathe. One of the first things she asked me today was if she had missed the wedding. At first, I wasn’t sure what she was talking about but then I realized she meant Prince Harry’s wedding. I told her that she hadn’t missed it and she asked me to record it for her. I had to laugh to myself, here she is fighting to breathe and yet she is worried about missing the big event. But, that’s my mom. She is still only allowed to eat pudding, ice chips, and applesauce because her swallowing muscles are still too weak and they are very concerned about her aspirating food into her lungs and getting pneumonia again. They are talking about putting in a naso gastric tube to get nutrition into her. But the trouble is they can’t do that until she is off BiPAP because the tube won’t work with the mask. So, we can either help her breathe or feed her. It’s an obvious choice but a very difficult one as well. The current plan is to wait and see how she does tonight and hopefully they will be able to wean her off the BiPAP sometime this week. For now, her care team is sounding more hopeful that she is going to pull through. They are making it very clear though that if she does, it will be a very long road.
Another day of ups and downs. My mom’s swallowing test did not go well at all. She just doesn’t have the strength yet to swallow food so it’s ice chips and pudding for her. She was also on the less invasive bipap but we had an incredibly difficult time understanding what she was saying so they put her on a smaller mask for as long as she could handle it. The nurse threw out the word “hospice” for the first time today as well. So, while we are still hopeful, the reality of the future is creeping in more and more.
Mom’s extubation was a complete success today. She was communicating with head nods and shakes beforehand and letting us know that she was ready to have that tube out of her throat. Afterward, she was placed back on BiPap, which is a less invasive form of intubation, and was holding her own on that. So, we are all hoping she will have a quiet uneventful night tonight and tomorrow they will assess her ability to swallow and hopefully she will be able to eat something. Yep, you read that correctly, she wasn’t allowed to have any food at all today and believe me she was hungry. Keep the prayers and good thoughts coming and I’ll continue to keep you all posted.
Tomorrow is most likely THE day! My mom had another really encouraging breathing test today. She was able to breathe pretty much on her own for almost 6 hours today and she was communicating through nods and head shaking. She let us know that she wanted to go home. Which made us all smile. The doctors feel she meets enough of the criteria to be extubated tomorrow morning. We are all tremendously anxious about it because once the tube comes out there is no going back. Either she will recover or she won’t. There is no in between. So while I am pleased and immensely proud at how far my mom has come in the past few days I am paralyzed with fear with what comes next. Thank you for all your support so far and I hope it is ok to ask for continued prayers and good thoughts moving forward.
We stare at the monitors watching
Lines rise and fall.
Hissing machines are breathing for
The impossibly small looking woman
In the bed.
Our hearts skip beats when
We see the extra bumps
On the screen
Those indicate her breathing
And we continue hoping
And loving her with all we have.
Authors note: It’s strange where I’m finding inspiration during these difficult days spent in my mother’s hospital room. I never thought I would ever write about lines on life support monitor yet that’s what inspired me yesterday. Watching that line wiggle and knowing that meant my mom is still in there and still fighting to come back to her family. Words can’t express what that meant to my heart.
I’m using a few minutes to myself to write a longer update on my mom. It has been a literal roller coaster the past couple of weeks. Even her doctor said how every couple of days she seems to take a step or two backward again. Well, last Friday morning I spoke to her on the phone and she was talking about how she was feeling and she said something that shook me to my foundation. She said to me how this might be “the end” and that the family should “brace ourselves.” Now my mom has never talked like this before and like I said it shook me. I just kind of laughed and told her not to talk like that. I also said how I was in the process of preparing care for her when she came home. Not two hours later the phone rang and my heart sank. I have never had a bad feeling like that wash over me like that before. It was a call from her doctor and it turns out mom had started having trouble breathing again so they had put her on Bi-Pap, which is kind of like intubation without being actually intubated. He also informed that if they had to, they were prepared to intubate and that he had spoken to her about it. She told him that she was willing to be intubated and for the medical staff to give her “a fighting chance.” I felt like I was hanging on to my emotions by my toenails through the conversation and as soon as I hung up my knees buckled under me and I sobbed for about 10 minutes. I went and saw my mom and, by the time I got there, she had already been sedated and intubated. Walking in and seeing her like that left me stunned. My sister and brother got there a little while later and we all held each other and cried and supported each other. Since then the medical staff has tried to wean her off life support several times and have been unsuccessful. As I have mentioned before her heart rate skyrockets when they try to reduce her sedation. But we can’t imagine her heart rate not increasing, she is completely sedated and then they are waking up with a tube down her throat. It would send anyone’s heart rate through the roof until they were able to adjust to the sensation and realize what it was.
Fast forward to today, it has been four full days of her being on intubation and we met with her doctor today who was actually encouraging. He said that we are still early on in this whole process and that we should give her more time and see what will happen. He made it seem like there is a chance she still might wake up and recover some aspects of the life she had before. I’m hoping she does but realistically I know the chances of that are growing less each day. But one positive thing to come out of this experience is the fact that, so far, my siblings and I are actually agreeing on the major points of care for our mom. I can just imagine my mom sitting back and watching us thinking how this has never happened before. I hope she is proud of how adult and rational we are all being. I hope that continues but I fear as her end gets closer and our nerves become more and more raw the ability to be rational will become harder and harder to achieve. We will see, I guess, we are all in uncharted territory and going through one of the toughest things anyone will ever endure during their lifetimes. Keep the prayers coming.