End of Life Trauma Part 5 – At Home Care

It’s difficult trying to find any photos about home care without smiling faces, so I chose this one as a bridge to no where.

This is part 5 of the 78 Day end-of-life trauma of my wife.


After three weeks in a rehabilitation/nursing home, my wife absolutely demanded that she go home! She simply could not tolerate another day in the nursing home. At that point, it was either go “against medical advice” (AMA) or somehow convince the staff there to authorize a release. At first, they were not inclined to release her, but finally understanding how adamant she was, they reluctantly did so. If we had left, AMA help wouldn’t be provided any longer. We would be on our own! With authorization, a visiting nurse would visit a few times a week to check on her.

I was very hesitant about taking her home as I knew if she should fall I would be unable to get her up. But, homeward we were bound. At this point in time, she was totally dependent on a walker to get around. Even with that, it was to move ten feet and then rest for a minute or so before continuing from the living room couch to the bathroom. That was her primary destination throughout the day.

It was during this home time that she became unable to eat at all. Even a swallow of food soon came back up. This was not a sudden event, but was the culmination of the three-week period of gradually losing the ability to eat. By now, she had shed almost 20 of the 40 lbs she eventually lost over this 78-day period. Another item that became quite unmanageable were her meds. She was on 23 medications. Keeping them all straight and trying to get them down her throat was the ultimate challenge.

Getting an appointment to see her PCP proved almost impossible. I pleaded with them to see her as quickly as possible, but they insisted that the best they could do was three weeks in the future. I finally got her in within a week. But even when he examined her, he seemed more concerned about a particular blood test than her inability to eat. Her starvation never came up until I did so. Of course, this triggered yet another Aspie meltdown. I basically told them if they did nothing that I would go down the hall and do a sit-in at the doctor office that does endoscopies until they put her on the schedule. The endoscopy was finally scheduled in a week. In the meantime, another five pounds lost…

The one high point during this round of trauma was the home aide nurse that visited twice a week. Zach was so concerned that he contacted the PCP and told him of the urgency of the situation. He did everything he could to bring her condition to the attention of the caregivers. He seemed to be about the only person who really cared that she was spinning around the drain, so to speak. Without him, I’m not sure I could have coped with this period of her trauma.

This home stay lasted two weeks. It was then the inevitable occurred. She fell going into the house after one of the many doctors visits. This resulted in another visit to the hospital, where kidney damage was found as the result of the fall.