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.

Hard Day at Featherstone

It’s been a hard day, with feelings of dejá vu written all over it. As I came into the building at Featherstone today, the aide in charge asked if I had been called out this morning. I told her I had not.

“Well, let me tell you the story then.” She said. 

Early in the morning they found Carolyn coughing up food from her mouth - lots of food that wouldn’t stop coming up for a while. Not vomiting violently, just flowing out. She was non responsive, and they found her blood oxygen level at 74%. 

All week she has been eating well, and you begin to think that she has come through the episodes of respiratory seizures that made her pass out and hit the floor while walking months ago. 

It’s back, similar to last year. Except this year she can’t stand or walk.

There may have been some aspiration of food into her breathing passages, too. The aide said she did all kinds of things to bring her back around, including holding her upside down to clear her airway. All that training kicks in without a thought.

She told me she said, “ Not today, Satan, not today!” I can live with that kind of religion all day. 

Some day it’s going to happen, but not today. Not if she can help it!

She spent some time cleaning out the food from her mouth with swabs, and put her on the oxygen concentrator, and increased the flow up to the max. In a few minutes the oxygen level came up to 88% and they knew she was out of the woods for the time being.

Later in the day, after more hard coughing, the oxygen level climbed back into the high nineties where it should be.

At noon I took her to the dining room and tried to feed her. They were serving beans and cornbread with fried okra on the side, one of her favorite meals. She took in about four spoonfuls of beans, one small piece of cornbread, and a piece of okra. Then she started coughing, because her mouth was full. She couldn’t swallow anything. I tried to give her a drink of tea to help her swallow, and it just ran back out.

I gave up trying to feed her and rolled her back to her room. She looked a little pale to me, so I hooked up the oxygen machine again. The same aide who rescued her this morning came in to give her a breathing treatment with Albuteral in a nebulizer. She got some more swabs and spent several minutes cleaning out the food that was filling her mouth. 

We left her on the machine the rest of the day. At times during the afternoon her mouth would gape open, and I would move the cannula from her nose to her mouth to ensure that the oxygen was being inhaled. 

I didn’t even bother to take her to the dining hall for dinner. They brought her a small bowl of applesauce, and I put one spoonful in her mouth. It just sat there. She still can’t swallow anything. 

I opened a bottle of Ensure strawberry shake and put a straw in it. She could not draw it out with the straw. So I got a teaspoon and tried to spoon it in, hoping that it would flow down her throat and be swallowed. On the third spoonful she got choked and started coughing again.

Nothing frustrates an old mechanic more than finding something that he just can’t fix. I told her that, with tears in my eyes.

I took her to the bathroom, changed her into dry, clean clothes for the night, and laid her down to sleep in her bed. When she looked like she was comfortable, I shut the window shades, turned out the light, kissed her goodnight, and went outside to tell the aide on duty to keep an eye on Carolyn, as I was going home for the night.

Then I drove home, went to my room, shut the door and cried.