Fatigue and muddled thoughts are familiar to caregivers. Living in a constant sate of alert is exhausting. Night after night of interrupted sleep robs one of the ability to retain information. Even familiar tasks become difficult. That is why so many posts for caregivers advise us to get plenty of rest.
Once the train of thought derails everything becomes more difficult. Even a drive home along a familiar road can be a frightening experience.
Rodger had not been doing well for quite some time. It was clear he was failing and it was time to consider hospice care. His swallowing problems had worsened to the point he was getting very little nourishment and a few days earlier a feeding tube was suggested. After talking it over with doctors, his nurses, and Mike we all came to the same conclusion.
Rodger was not a good candidate for the procedure. His schizophrenia already made him suspicious about blood tests and medications. Having a device inserted into his body would cause him untold stress and he would probably pull it out putting him at risk for infection and further complications. It was also explained that patients like him did not fare much better with the tube than they would without it.
I had spent hours at his side in the hospital for days and I needed to get away for a few hours. All the way home I thought about the decisions we’d have to make. Deciding to pass on the feeding tube could appear to some people as agreeing to let him starve to death, something Rodger often accused me of doing. Would hospice care, either in the hospital or at home, send a message to others that we were willing to stand by and let him die?
I was so deep in thought that I drove for miles on autopilot. At one point I came to a stoplight and looked around, wondering where I was and how I got there. Had I passed my turnoff or was it still somewhere up ahead? Nothing looked familiar and I feared I had lost my way. After several moments of panic, I decided to continue on rather than take a chance on making a wrong turn. Finally, I began to recognize the landscape. I was on the right path after all. Was the slip-up meant as a message for me? Was I to continue on as I’d been doing and follow my instincts? Was it possible that I did know what I was doing after all?
Who the hell knows? I prayed for guidance as I continued on my way. Dear God, please show me the path you want me to take.
A few days later Rodger was approved for in home hospice care. He did not have a feeding tube inserted. He lived for several months not having to worry about why his family had allowed someone to implant a strange device in his body. I remain convinced we chose the right path.
If you have had moments of confusion due to fatigue and stress please share them here and tell us and how you managed to work it through. It may help another caregiver get her or his life back on track.