It has been harder for me to write about some of the latest developments in Vernon’s journey—mostly because I’m still trying to get my head around them myself.
Not much has changed to look at him, but a couple of months ago (or less?) I spoke with the doctor, who told me that if Vernon doesn’t get transferred to a place that specializes in neurological recovery, he will just go on being treated as a chronic case…comfortably maintained, but not getting better (at least not quickly.) This is when I started looking into Rehab Hospitals again…which led me only to closed doors. This is also when I learned that Vernon can really only stay where he is, due to clauses in the medical system. Although I count our blessings to have him there—it is a great home—I don’t see him getting the stimulation he obviously needs in order to improve.
This is when I realized if anything was too change, it was my turn to make it happen. I know so little about the biology and medicine, but I do have an open mind. I’m happy to turn away from Western Medicine (at least heavy drugs) for awhile if need be. And I think need is starting to be. By saying that, I’m not actually inviting suggestions at the time. So far the things that seem to help most are the things that have just fallen into our way, and we see if it works. It’s overwhelming to take on too much advice at a time, though people that give it mean well. And also, there are several alternative approaches that are not allowed in the home or in Vernon’s state.
Now that I have the doctor’s blessing to look for/find new solutions, I feel slightly empowered by realizing I have nothing left to lose (but money.) I shared this feeling with my friend Jen the other night and she replied: “When you have nothing to lose, you Double-Down.” So eloquently put, Jen. That’s it exactly!
The first thing that I feel strongly about doing is detoxing his organs a bit. It was heavy sedation that saved Vernon’s life by keeping him in a coma, but it was that same morphine-or-what-not that crashed his kidneys after only ten days. Now dialysis and its troubles are the main obstacle for everyone caring for Vernon (especially for Vernon.) And we’ve been doing this for 14 months! What if we could turn things around? Wouldn’t it make sense that heavy drugs are bad for kidneys? They may nbe past restoration, but they certainly aren’t getting any better with heavy dialysis either. Again, there must be more to all this than just maintaining.
We’ve started by cutting back his Ativan, which now with 5 days of dialysis, he takes 5 days a week. I never wanted him to be sedated but over time I felt forced to agree that he needed it for his own safety. However, over the past few months, he has had sitters with him as well. I know that cutting back a little will be good for him, but it may take time before he is off it completely.
Last week, when I posted a video of Vernon singing, I was directed back to the following video, recorded in December. I hadn’t looked back on old footage for awhile, but I was shocked to realize how much better he seemed to be doing then. I was then too naive to imagine what this year would hold, as far as steps backward and sideways.
So what have we done that would allow him to get so much worse over the last 8 months? I know he had some bad infections and they took a toll. But I believe that it could be that he’s become too dependent on Benzodiazepines, which are very addictive. I am going with my gut on this, but after watching how active he becomes after one hour of dialysis, when the drug has been quickly removed from his system, I think he’s developed a physiological dependence. The irony is that its only for Dialysis that he takes the drug.
The doctor was happy to cut his dosage in half. That was about ten days ago, and I think he’s already improving (at least at Dialysis) but he is suffering from physical withdrawals in other ways. In my online research, I cam across a huge support network of recovering Benzo addicts: it’s very common and withdrawal is very difficult, with the symptoms being worse than the things they were originally treating. It’s kind of scary to watch, truthfully. I feel nervous about not doing the right thing for him, but every day I become more convinced that this was a good direction. A U-Turn, even.
I don’t know if this will help him, but I’m excited to see if it does. At this point, I am most interested in giving him a better quality of life with what we have to work with than maintaining his problems and hoping they don’t get worse.
These pictures were taken at the Dialysis Center today. He moved around a lot but he was mild mannered and took direction well. No safety issues at all. So far, so good.
On that note, we are still looking for dialysis help on the when I’m away for the week. If you have time on the upcoming Sat, Mon, Tues, we’d appreciate the help. I promise I won’t have the doctors pull back his sedative any more till I get back!
Here’s the link if you want to help.
Let’s turn this boat around.