I have a confession to make. Before my mom went into the hospital, I was tired. Tired of being her caregiver. Tired of not having a life of my own. Tired of feeling like life was passing me by while everyone else got to move along with the traffic of their lives. I was her caregiver full time for twelve years and part-time for eight years before that. Twenty years I spent helping her out while putting my hopes and dreams on hold. While she was in the hospital and her condition was declining I hate to admit that part of me felt like a horse at the starting gate of a race. Chomping at the bit of what was to come. Those feelings made me feel so incredibly guilty but there they were. I was ready to move forward with my life and enthusiastic about what would happen after the inevitable happened.
Then my mom passed and the racing gate burst opened and nothing happened. I couldn’t move. The days just crept by and I didn’t want to move or do anything without my mom. My identity had become so intertwined with hers that I just don’t know who I am now. It’s a strange feeling, to say the least, to be in my mid-40s and have no clue who I am. It is so strange seeing things that were my mom’s leave the house. Last Wednesday her oxygen compressor that whined and wheezed 24/7 was picked up by the company and I had the most dreadful feeling that it couldn’t go because she needed it to breathe. Then the realization hit and the dam cracked, but didn’t completely break, and I cried. I put the tubing that came with the machine, in the trash and I walked back to the house shaking so hard I could hardly take a step. I feel the pull of her still and I need to break away from that. I need to move toward a future without her but I don’t know how to. I try to take steps and feel this gravitational pull backwards to a past that no long exists. I keep listening to a song called “Never Lookin Back” by the husband and wife duo of Pear. There’s a line in the chorus, “….no future in the rearview mirror” that is resonating a great deal with me these days. I can’t keep being pulled back by the past. I need to move forward towards a future of my own. I’m just not sure how to do that at the moment, but taking one baby step at a time I know I can. It’s just going to be the hardest journey I will ever make in my life.
My older sister left to go back home today. She has been staying with me since my mom was moved to critical care which was several weeks ago. It was a strange feeling watching her car pull out of my driveway. I felt completely untethered for the first time since my mom passed away on Tuesday and it was unnerving to say the least. I mean I was alone during the first part of my mom’s hospitalization but then I knew she was still there, you know? This knowing that she’s not coming back, that my life as a caregiver is over, is just daunting. I took care of her full time for 12 years and part-time for 8 years before that. I’ve lived this life for 20 years and now it’s just over. I have no idea what kind of person I am without that. Looking around the house for the first time I just felt numb thinking of everything I have to do. Going through my mom’s things and getting organized to find a job and everything else that I haven’t thought of yet. That is what is going to get me through this. Keeping busy and moving forward to a life I know my mom would have wanted me to have. It’s up to me to see this through and my mom gave me every tool I need to see it come to fruition. Will I have rough days? You bet I will. I realize the magnitude of what has happened hasn’t even begun to hit me yet and, to be honest, I’m kind of scared of what will happen when it does. I just have to focus on handling things as they come. One day at a time and not worry about what might happen in the future. Because being untethered doesn’t mean I’m just drifting aimlessly about, it means I have control over what direction my life takes and, with my mom’s spirit guiding me, I know I’m going to find the path I was meant to take.
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.
Childhood memories have the strength
Sparkling, bright, and untainted.
But don’t get hypnotized by the brilliance
Memories have many facets
And one can get lost very easily
In the past.
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via Dear Non-Diabetic