Stories and thoughts about family and life

Emotional Rollercoaster

on November 10, 2013

I don’t love roller coasters in the first place. The up and down, the quick drops, the crazy curves, and don’t even TRY to get me on one with a loop on it. I think it has to do with a loss of control, if I had to psycho-analyze the reason. Either way, I feel like my life lately has akin to riding the Arkansas Twister (the biggest wooden coaster in the state) or maybe the Texas Giant or some other equally terrifying “thrill” ride.

My father-in-law, Paul, came down with some mystery illness a couple of years ago. He suddenly lost 40 pounds in the span of about a month, and lost his appetite. We were sure it was going to end up being cancer, and began the gauntlet of physicians and tests. Ultimately they never figured out what happened to him except that he had something attack his central nervous system. By the time they figured that much out, it was over. He recovered, but it has taken his toll. He now has a noticeable tremor, tinnitus, and some minor mental incapacity. All in all, though, things were much better than we feared. In the process of searching for whatever was making him sick, we asked the neurologist he was seeing to perform a full-body PET scan. If it really was cancer, we needed to get a handle on where/how/what we were dealing with. The only thing they uncovered in that process was a small tumor on his kidney. Assured by the urologist this was not his problem, we went on with his other treatments, and decided to monitor the size of the tumor.

Two years later, during a routine follow-up, the urologist announced that the tumor had nearly doubled in size and it was time to do something about it. Ultimately wasn’t going to be a big deal–they had decided he was a candidate for cryoablation, and it could be resolved pretty simply that way. One Monday morning early in October, my husband and his sister arrived at the hospital with their parents in tow, to prepare for the procedure. I was keeping vigil at work, continuing to text back and forth every 30 minutes or so with updates. About 30 minutes before they should have started the procedure, they put on the brakes. His EKG was showing PVCs in his heart rhythm. The doctor came out and spoke to the family. No one had any real helpful information, so they stopped and called the cardiologist. The cardiologist seemed to know all about this being a pretty regular occurrence, but my father-in-law hadn’t mentioned it to anyone, so they did an arteriogram just to be sure, and then rescheduled the procedure for October 28.

The morning of the 28th went off pretty much without a hitch, until the post-op. Paul wasn’t rebounding very well on the cardiac front. His heart rate wasn’t very steady and by the time they moved him to his room they were taking him back down to CCU. He spent the night in CCU and the next day in a regular hospital room. They were not pleased with his breathing and his oxygen levels and ended up discharging him Wednesday on Oxygen. He seemed okay, although a little slow and tired (which is understandable). By Thursday my sister-in-law was calling 9-1-1 and we were headed back to the emergency room. He hasn’t left the hospital yet.

That next week was filled with trips to his CCU room to visit him, and a very scary weekend of nurses telling my sister-in-law not to leave town, and us coming to the realization that Paul was likely not coming home. We watched his color drain, his strength go completely, and began discussing what we were going to do if the previously unimaginable actually happened. My mother-in-law cannot be left alone. Paul had been her sole caregiver, down to bathing her and helping her with eating and other tasks. My sister-in-law had assumed that role in his absence, but she has a life to get back to as well, including her two small children and a husband with a thriving veterinary practice four hours away. We knew the answer–we were going to have to put my mother-in-law in a nursing home. Paul had been the only thing keeping her out of one so far.

As we sat each evening at the hospital trying to do as much for Paul as possible, the days were filled with physician, PT and OT evaluations as well as interviews and evaluations for in-home nursing care for Helen (my mother-in-law). She had realized that she was on her way out of their apartment and into some type of full-time care (most likely a nursing home). Everything became painfully apparent that she could have been keeping herself active and working harder to be more independent in the past, but just hadn’t. She had been happy having Paul do everything he could for her, down to feeding her much of the time lately. The fear of being placed somewhere motivated her to try to do more for herself, and she made tremendous strides during that week. My sister-in-law was able to get her to do incredible things she hadn’t done in years. Still, it was too late. She had been inactive for too long and could not demonstrate the ability to care for herself she would need to stay out of nursing home care. The big question now for all of us was whether she would be going alone or not. The answer was looking more and more like “yes.”

November 2 was a particularly difficult day, with the hospital intimating that no one should get too far away. This hit me especially hard, and after watching my husband and his sister invest most of an entire day getting evaluations scheduled for their mother, I encouraged them to go see their dad and spend as much time with him as possible. I had been pretty strong to this point, and had been pretty proud of myself, but hearing the words out loud and listening to myself encourage my husband to do see his dad just hit home much harder than I anticipated. He sensed that in me, and was kind enough to make sure I went with him to see his dad. As we stood next to his bed in CCU, I could certainly see that he looked bad, but he also looked better to me than he did the day before. As we visited with Paul, he seemed to have his personality back some. We joked with him and he seemed more “with it” than he had the past couple of days. Louis and I both agreed when we left that we thought he was doing better. Speaking with the nurse on our way out, she indicated he had rallied that afternoon and was showing serious signs of improvement. My heart felt 100 times lighter as we strolled across the parking lot in the cold night air.

Sunday (November 3), my sister-in-law had prepared to go home. She had her work to get back to and had already been in town a week longer than expected. As she went by the hospital to see her dad, the nurse again told her not to leave. He had a bad night, and wasn’t doing very well. Again, we all held our breath as the day progressed and we prayed for something to change. By nightfall, Louis and I were back at the hospital to visit. Paul was in definite pain. You could see he was hurting and he was miserable. As we got ready to leave the room, he grabbed my husband’s hand and asked him to stay a minute. I stepped into the hall to give them some privacy. Paul took his hand and told him “please make sure your mom is taken care of. I’m not coming home.”

When Louis walked out of the room, I could see the pain in his eyes. When he finally told me what he said, we stood in the lobby of the hospital, holding each other, crying and doing our best to console one another. We went home and spent much of that night in fear that this really would be the end.

I was due in El Dorado (about 2 hours away) Monday on business. I had spent much of the weekend preparing for that trip, but prepared also to cancel it if need-be. Owning my own business means I have to work even when I’d rather not, and I couldn’t really skip the trip unless it was absolutely necessary. As I arrived in the office Monday morning and finishing my last few tasks, my husband called to say that he had heard from the hospital, and they said Paul had such a good night that they were moving him to a real room. They were very impressed with his progress, and would be moving forward from there. He had rehab ahead of him, but it seems for now that he’s out of the woods.

He has been in the hospital the whole week this past week. They finally moved him to rehab Friday night late. We’re now battling another little issue, as he has a sore throat and isn’t feeling great, but he has made great strides in his therapy so far.

As I sit and look back over the ups and downs, twists and turns, stops and starts we have had this week, a roller coaster is the most appropriate comparison. I’m ready to be off the ride, but unfortunately now we have to finish getting them moved to a more permanent full-time care environment. We have selected a nursing home, and now we’re going through that application process. So, as I feel us climbing the hill again, preparing for the big drop and another set of twists and turns ahead, I am grateful that we still have him here after this incredible couple of weeks. We are all exhausted, but we’re all grateful. I’ll blog another day about the nursing home–I’m sure it’s going to be quite the story in itself.


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