Free at Last

After several days of rapidly declining awareness and inability to swallow food or drink, Carolyn’s heart failed at 9:45 PM on July 12, 2018.

On these last days, Guardian Hospice aides and nurses visited constantly, monitoring and treating her as necessary, and advising us on her status. Her nurse told us that she was no longer responding to the drugs given her to drain the fluid from her left lung, and her pupils were dilated and non responsive. When the hospice aides both came, knelt by her bedside and told her goodbye with tears in their eyes, Darlene and I knew we were just waiting for it all to be over.

I realized in the early afternoon that she still had two oxygen concentrators going full blast trying to keep her oxygen saturation level as high as possible. 70% was all they could do, given the fluid in her lungs. I asked the nurse if those machines were providing comfort and pain relief, or were they just prolonging the ordeal. She said they were just extending her life and I asked if I could remove them. She said she would do it, if I wanted. I told her I would do it myself.

When I shut the machines off, the room grew quieter, and her oxygen saturation level dropped immediately to around 50%, and then stayed there. I removed the cannula and mask from her face, and she looked much more comfortable, as if asleep. I coiled the hoses onto the concentrators, and pushed them back, away from the bed.

On every hour a nurse would appear to give her some morphine to relieve pain, and a tranquilizer to quiet any stress.

Her forehead was smooth, indicating no stress or pain, and her expression showed neither a frown or smile. She was struggling for air at first, with a respiration rate almost 60 a minute, but as the day wore on that slowed down, and the breathing grew shallower and easier.

As the night came on, her breathing became very slow and quiet, and I put a pulse oximeter on one finger where I could see it. I just held her hand in mine, and waited. I knew the end was near, and she would finally be free of this devastating disease. The mixture of grief that she is leaving, and relief that she will be out of the pain and suffering she has gone through these past years is about the hardest thing I’ve ever had to face. 

The feelings of guilt that I get to keep living, and she doesn’t, come unbidden to my tortured mind. I hate the confusion and sorrow in my thinking, and my attempts at meditation to refocus my mind seem futile. 

I noticed that her oxygen level was starting to drop below 50%, where it had been for several hours. Suddenly the numbers disappeared, and the little line of dots that showed her heart beating stopped. The display was blank.

I told Darlene that she was leaving us, and she came over to be close as Carolyn took a few more breaths, very shallow, and each one farther apart, until they stopped also. 

After a couple of minutes, we decided to call someone to let them know that she was gone. The Featherstone staff and Guardian hospice have a routine that makes it so much easier for the family. Unlike for us, for them this a regular part of their work and life. I am in awe of such people.

While we were waiting for someone else to arrive, I went over to the bed and straightened her legs, which had been drawn up to almost a fetal position, and crossed her arms on her stomach. Her left hand was still clenched in a fist, and the fingers resisted being straightened, but I got them to open up just a bit. Her eyes were closed but her mouth gaped open. I closed it by pushing on her chin, but it fell right back open when I took my hand away.

Seeing nothing more I could do, Darlene and I decided to go home and let the professionals take care of Carolyn. 

After years of struggle, Carolyn was at peace, resting, free at last from dementia.