From my small sample of those whom I've talked to about this, it seems like a universal feeling. A brief amount of research seems to back this up. Most are like me and feel guilty, but it is apparently a common perspective...
I'm not only ready for my Mom to go ahead and pass away, I also want her to.
Let me explain before you start judging me.
My mom found out she had lung cancer last December. It's now the very end of July. That's eight months. When the PET scan showed that the mass she had for years, that had barely grown in that time, had gotten much bigger, we had hope that she might be one of the few who had a year (at least).
She had beaten death so many times before. Once she even coded (and saw Jesus and my crying brother at her bedside, by the way). She has had pneumonia numerous times, and several were touch-and-go. She had four major surgeries at 87 years old, with one lasting about 10 hours. That's on top of so many other medical issues, surgeries, and procedures throughout the last few decades of her life.
She chose not to have any treatments... She didn't even care about a formal diagnosis because it was invasive and she would have to be under anesthesia for the fifth time in 6 months to get it (very, very hard on someone elderly with all of her medical conditions).
When I became realistic about it was when I became brave enough to look up the prognosis for those with lung cancer. I found out there are two main types, and with one, a person could live years. For the other, eight months was a stretch.
Still, I thought that she had more time.
Two and a half weeks ago, everything was normal. My husband and I went on a very rare date purely because we had a coupon at a place where we also had a gift card from this past Christmas. We went for an even rarer walk around the neighborhood at 9pm that night because I was restless and knew I wouldn't be able to sleep.
I'll never forget something I realized when we almost got to the main road where we would turn around. I looked around and told my husband, "You know? One day soon this house, this neighborhood, this time in our lives will be just a memory."
Then we went back to talking about other aspects of our life together.
The next morning Mom woke up unresponsive; her breathing was, um, different; I knew things had changed.
But she had been there before. Not exactly like this time, but similar - showing signs of being at the end of life.
And each time she came out of it.
However, each time she came out of it, I knew one day it would happen that she wouldn't.
This time there's no doubt that she's not coming out of it. She hasn't eaten in days. She hasn't drunk more than a few sips a day for a few days. She has gone back to being unresponsive the majority of the time.
I knew we were close.
I guess 15 hours ago (give or take a couple of hours) she again looked like it was imminent. The biggest indicator was that her oxygen went down. I called my brothers and her pastor and asked them to come.
And then she perked up.
It was very slight, but she definitely knew they were here. She even said a few words during that time.
Eventually they all left, and my husband, daughter, and I were left to watch her and let them know when they needed to come again.
In fact, I was writing this and heard something different from her. (Yes, I wasn't at her bedside at the time. I've sat at her bedside for hours so far, and one can only do that for so long without going slightly bonkers - at least I can't.)
I jumped up in the middle of the word "mass" in the fourth paragraph when I realized she wasn't breathing. (I know because it was almost funny coming back after leaving during the middle of a word. I don't think I've ever done that before.)
Her oxygen level was lower than it had been before - her heart rate was higher (which is unusual because she has a pacemaker).
But as I had been fooled before, I waited - and waited - and waited... until I felt sure that I needed to call my brothers.
(Funny how I titled this post "Still Waiting" even before this happened.)
Anyway, the final straw was when her O2 got to 19 before going back up to the mid-30s. She started breathing "like a fish," which I hadn't completely understood until I say it. I KNEW this was it. So, I asked my husband to call them.
I turned on some music I knew we both would enjoy...
And got prepared to wait even longer.
The music changed things. Her oxygen started going up. It finally leveled out in the 60s. I waited a little bit and then texted them again to tell them what happened. I told them to just wait to come (there's that "waiting" again!) until it dropped back down.
It's about 45 minutes later and it's still holding steady. Her breathing has gone back to what has become her normal.
By the way, for those of you who are in the same boat, I've learned that there is a lot of variation in signs of the end of life.
Keep in mind I'm not a medical professional so do your own research or talk to someone who knows to confirm what I'm about to say. My point is that it's good to remember that everyone is different in the way and timeline in leaving this life.
One classic sign the end is near is low blood pressure. My mom's has been high - occasionally really high. These spikes in blood pressure were also when her oxygen was low.
I didn't understand until my daughter and I were discussing theories on why she was hanging on so long. She mentioned that her brain just had to be deprived of oxygen, but her brain stem was still functioning - and that's where the autonomic functions of the body are located (blood pressure being one of the main ones).
My mom has POTS, a form of dysautonomia. In other words, her autonomic nervous system hasn't worked correctly in decades. Her blood pressure fluctuated each day from low to high. Instead of having blood pressure medications to lower it or raise it, she had both and took them depending on what it was at the moment.
I looked it up, and yes, that is a thing. With someone with dysautonomia, an indicator of it being the end isn't low blood pressure. In fact, it can shoot up.
Another difference with Mom is that she has a pacemaker. That also changes the typical end-of-life signs. Until yesterday afternoon, when her pacemaker started flaking out, her pulse rate was a steady 75. She was on oxygen, so her blood flow kept going to her extremities. (Purplish extremities are another sign the time of passing is close. Mom's have stayed the same color.)
Yesterday afternoon it started varying from 75, but not by much. This morning it went up to 89, a big spike for her. That's where it was when her oxygen was 19. My theory on the physical reason she went from being so close to death to then having steady vitals is that her pacemaker kicked back in (even though I still think the music was part of it... somehow.)
One last thing for those who may be in the middle of similar experiences: having a pacemaker with a defibrillator adds an additional step at the end of life. The purpose of a defibrillator is to shock the heart when it goes out of rhythm. For someone dying, that means it will go off when the heart muscle starts to die due to lack of oxygen. It causes a minor shock to the person.
It did that yesterday to Mom. It wasn't a bad shock, and it didn't hurt her. But both her hospice nurse and I saw it. She got a special magnet that deactivates the defibrillator. If you have that situation, make sure you check into how to do that for your loved one.
In other words, don't take what the Google and the booklets and even the nurses tell you. There are special circumstances that affect all this.
So, even more waiting........
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