Bringing Strokeman home from the skilled nursing facility was not a smooth process. The week had been filled with ice and snow. I feared getting stranded between there and home with him in the car. By the afternoon of his discharge day, things had melted off enough for us to make our way home. Strokeman is not an easy patient. He had alienated his caregivers in the nursing home, and they were not sad to see him leave. We were both happy to have gotten through the difficult month and were ready for the old normal.
But things did not go back to the old normal. While Strokeman had regained much of his strength, there were still issues to be dealt with that had not been part of the package prior to his sickness. He had been catheterized in the hospital, and while they had removed the catheter a week before discharge from the nursing home, there was still a bit of bladder training to do. He was much less stable on his feet, and fell several times over the next few weeks. One day I gave him a pill to swallow in the bed and he choked on it. I sat him up to help him cough it up, but he passed out and fell out of the bed, hitting his head on the bedside table on the way to the floor (picture me standing over him letting out repeated bursts of scream).
The worst of it, though, was the changes I saw in his personality. He was angry with me for having sent him to the skilled nursing facility, and fearful that I would send him back. His anger fed his tendency to be suspicious and wildly accusatory of me. He exhibited other behaviors that were uncharacteristic. I won’t go into details of all the difficulties that came. Suffice it to say that these things would have never been a part of his personality prior to the stroke. I was shocked, hurt, and confused as to how to reason with this person who was living in an alternate reality. I was quickly losing anything I had gained in terms of rest, as he would often wake me up at night to voice his grievances.
As I have many times before, I sought the aid of my pastor and his wife. While Larry visited with Strokeman to call him back to his senses, I poured my heart out to Cindy, confessing things about the past few years that I had not expressed to anyone else. How grateful I am for their love and support through this time! My pastor does his best to walk the line between being understanding of Strokeman’s limitations and not letting him excuse sin. He helps me see more clearly how I need to respond to the problems as they come. He does the hard job of saying things that need to be said. He is able, where I am not, to help Strokeman reign in the vain imaginings and enter the world of reality. Through Larry’s faithful ministry, Strokeman has come to be more subdued and manageable. Through Cindy’s faithful friendship, I have worked through much of the guilt and heartache and have gained the courage to keep moving forward.
At the suggestion of my pastor, I began to explore Strokeman’s medications to see if any of them might be causing the changes I was seeing. I asked pharmacists, read side effect lists, scoured online patient forums, and consulted with the social worker at the nursing home. There was no evidence that his medications were related to the behaviors that I was seeing. Instead, the evidence was pointing towards the area of the brain that was destroyed by the stroke. As I considered this, I realized that these behaviors had been in play on some level since the very beginning. It was as if putting him in the nursing home broke the last hold and all that had been festering beneath the surface came pouring out.
The social worker told me that it is not uncommon for things to get progressively worse. She encouraged me to start looking at the long term and begin planning for an inevitable nursing home placement. I knew she was right, but my heart still rebelled at the thought.
Meanwhile, my pastor encouraged me to meet with my children and give them a thorough understanding of all that was happening with their father. How I hated the idea of telling these things to my kids! I did not want to add to the pain that had already come to them through the events of the past 4 years. It was a difficult conversation. It confirmed for my children all they had been concerned about in January. They, too, encouraged me to begin working toward an inevitable nursing home placement.
I have to say that the realization of what I had to do was more devastating than the day-to-day trials of caring for Strokeman. It felt like ever so much failure. It felt like the opposite of “in sickness and in health”. The battle with depression was overwhelming. As I worked to get the house ready to sell, I grieved. Going through Strokeman’s closet was the hardest. I wept as I put his tractor overalls and work trousers in a box to discard. Every time I think there is no crying left to be done, another layer of grief rises to the surface.
My friend, and social worker, and chorus director, Lynda, gave me the name of a Medicaid advisor who would educate me on the laws surrounding spousal protection in the course of nursing home placement. I made an appointment to meet with him. My oldest son, Caleb, flew into town to go to this appointment with me. Through this meeting, subsequent email communication and hours on the phone with my financial advisor, I have been able to come up with a plan to work within the laws to provide for Strokeman’s needs without becoming financially devastated in the process.
As with the idea of selling my home, this added burden of making financial decisions and working toward a plan that would only solidify Strokeman’s suspicions of me was overwhelming. But in each case, as the days unfolded, God’s grace was poured out in unbelievable ways. As I cried out to God with a million “how will I ever…?” prayers, He cleared the way for the next step. Things that seemed absolutely impossible have been accomplished with relative ease. Things are falling into place.