Hopefully, I’ll be able to end this post in a few days with the good news that my surgery for Inspire actually happened, and that it was successful. But for now, I’m back in insurance purgatory. My healthcare insurance is demanding that I provide all failed CPAP reports - none of which I have, as they were never done. In neither occasion of my CPAP trial, was I ever afforded a follow-up visit with the pulmonologist, nor was there ever a phone call asking why I was returning the device, or even while trying - to find out if it was working for me. The surgical team seems positive that the old adage you can’t prove a negative will hold power here, and that I’ll be granted coverage, but it is still up in the air at this point. Yet, I’m still not taking my medications in preparation for anesthesia. And speaking of anesthesia, I’ve read a fairly credible study (after a friend mentioned this) that anesthesia is a risky thing for those with dementia. Further reading gave the understanding that it is the inhaled general anesthesia that causes the problems, so I contacted the surgical team and asked if I could have the injectable sleepy potion as I was battling Alzheimer’s and was worried about the long term effect on my brain. Thankfully, the request was met with serious consideration (which means it’s real), but unfortunately, for reasons I have no understanding of, in order to intubate, you need to be on gas anesthesia. Makes no sense to me, but I’m no doctor, and I trust this surgeon, so I believe it. He did suggest that I could speak to the anesthesiologist and ask for the least traumatic cocktail, which is what I will do. I’m having the surgery (insurance provided) and willing to take the risk. But this is yet another example of the need to stay on top of your own care needs in this world we’ve allowed to exist today. I fear it is only going to get worse, as this heartless administration enacts cuts that allow the corporations to further abuse us while blatantly reaping in the profits.
Wendy and I went to a really interesting film the other day. It was called Observer, and was a study about how different people view the world - specifically the natural environment. While not a perfect film, it was thought provoking and really quite interesting. It also had subtitles, which, as someone with hearing loss, I greatly appreciated. It did, as any good movie should, leave me with a few things to ponder, which I’ll ponder here with you! The first, which I’ve wondered about for many many years, is the need for some people to kill animals. The final study in the film was a hunter - that was how he chose to identify himself - being quite eloquently introspective about nature and the beauty around him. He reflected on the peaceful nature of the environment and on his love for the wild. All while hiding in order to kill something that was also just trying to exist in the same place. Now, if you have (or even want) to hunt for your food, I support your efforts. I don’t want to do that myself, but I do understand the need. (I do eat animal products that have been killed by others.) What I do not, nor will I ever, understand is the joy in it. The feelings of power and pride for hiding for hours and using a high powered implement to strike down an innocent animal are as alien to me as anything else on this planet. The elders of this planet, and those cultures that still regale those elders, offer thanks and take no real joy in the act of killing - only the joy in being able to eat for another bit of time. So this hunter, who - by his words was clearly a man of thought and intellect - still found his joy and peace in the senseless act of killing another creature, and then couched it in the rhetoric of communing with nature. (Or to be more accurate, used the excuse of hunting in order to get out into nature and be at peace.) And I don’t get it. And I want to be clear here… I’m not anti-gun. I’m anti-gun-nut, and I’m anti-recreational-hunting for “sport”.
The other study I want to talk about here was one about a man, blind since birth, who was an avid birder. He went all over the world with a recorder and directional microphone to capture the sounds of nature, while never seeing it. One of the things he said really struck me though. He said that 95% of the time music and natural sounds cannot peacefully coexist. That comment led me to a morning listen under the lights, and I’m glad for it. Wild Concerto, is the most recent album by long time favorite Stewart Copeland. Ostensibly a classical music record, the normal instruments here are augmented by the sounds of animals in nature and Copland’s signature syncopated drumming. It was a fantastic listen - the drumming really pulled the lights together and the music and interwoven animal sounds were transportive. Take that blind birder guy! (And to be fair, at the end of his section in the movie, he did a duet with another blind man, a Somalian singer and guitar player who played along to birdsong recordings, visibly moving them both to tears. So he proved himself wrong in the end, hoisted by his own petard - but not before I took my own umbrage and decided to listen and write this paragraph!)
I went to my first local Alzheimer's Organization early onset advisory group meeting today. It was a great experience. One of the things I first noticed was that there was nobody there who was sad. All the attendees, both caregivers and… (I’m not really sure how to define us - the Afflicted? Sufferers? Patients? Diagnosed? - you get the point anyway) were all there because they were taking charge of their lives, and doing their best to leave the world a better place, at least for those of us who do have this disease. It was really heartening to see and to be a part of. There was great information shared, the worst falafel I’ve ever had, and news about opportunities in the future. It looks as though Wendy and I will be going to a fundraising gala in a few weeks! Besides a few weddings, I’ve never been to a black tie affair before. Should be fun! I also got asked to speak at another event a few weeks down the road. Apparently after seeing the flyer for the one coming up, the organizers asked for me specifically! I couldn't be happier to do this sort of thing, and I’m really hoping the opportunity for the national advisory group goes my way. There is a link embedded in the bottom of this post for donations to the ALZblog team’s entry in the local Walk To End Alzheimer’s. Please donate if you can!
My surgery is scheduled for tomorrow, and I still don’t have insurance approval. Once again, I’ve needed to be my own advocate, and call the insurance company to find out exactly what was needed, in light of the fact that I won’t ever be able to provide the documentation that they are requiring - which according to the benefits person at the hospital (who is lovely) is only required by my insurance, and is a new thing! So hopefully my surgeon will be able to call them in the morning, and get the authorization so I don’t have to miss my slot. They did change me from an 8AM start to a noon arrival in order to give the doctor some time to try to work it out. Fingers still crossed.
I started a book I’ve read more than a few times. There are several books I go back to every few years and this is one of them. This one is called Glimpses, by Lewis Shiner. In this book, Ray, the protagonist, finds himself able to recreate the “lost” albums of the past. He can imagine them - and place himself in the process of the recording, and find the finished product, as he dreams it, coming out of his speakers, ready to be recorded. Along with this, Ray attempts to resolve his marriage and his feelings about his parents. But the love of the music, despite that music not being what really floats my boat, is what moves me to love this book so much. I’m sure that surprises nobody reading this blog. But, because I was reading this book, I was interested in listening to some of the book’s topic artists during my sensory sessions this morning. I chose the album Strange Days by the Doors. Even when I was a pot smoking wanna-be hippy in the 70’s, I was never - despite all the accolades from my peers - much of a Doors fan. I absolutely recognize the musical inventiveness of the band, and Copola’s use of The End as the opening montage in Apocalypse Now! Is nothing short of divine inspiration. However, I was unable to do much more than 10 minutes of Strange Days, before moving on to a different record for the rest of my sensory listening. Glimpses, deals with recreations of music by The Beatles, The Doors, The Beach Boys and Jimi Hendrix, all of whom have high status in the world of Rock-n-Roll, but none of whom make my regular rotation. So be it. I can still love the concept, right? If this book sounds at all interesting to you, I also really recommend Shiner’s most recent novel, called Outside The Gates Of Eden, which is damn close to a masterwork, covering music, politics, family, love and loss with a deft touch in a glorious coming of age novel that spans decades.
OK! Here’s what you really wanted to know. Circling back to the first paragraph, I did not have my surgery today. I did go to this hospital for it though. But at the 11th hour, I was told that my insurance company “needed more time”. So they sent me home, with a next available date for the procedure, presuming it’s approved, in July. All this because, once again, nobody followed up to give them the information that they were asking for - and they sent the request to the wrong hospital, who also did not do anything about that! Despite my own constant self-advocacy, I’ve now been waiting for this surgery to happen for nearly half a year, and will have to wait a little longer, it seems. So what if my dementia proceeds faster, or I die in my sleep, right? That’s what happens when you allow corporations to take control of human care. The care goes away. Not a single person involved in this process really seemed to care if this happened or not except me (and Wendy, of course). It was numbers (dollars) and letters on a paper for the insurance company, and a non event for the product rep if there was no money in it for him, and the surgeon was on a treadmill of operations, and got himself a few hours off (although he did call me directly to apologize for the massive cluster@#&%)! And the funny thing is, I got a “ how was your call with support” survey from the insurance company this morning! So I filled it out like a good doobie. But they probably won’t be happy with my answers. Nor, I’m sure, will they choose to learn anything from them. I want to be really clear here: I do not advocate violence against anybody, but I really do understand why some people are feeling so lost in an uncaring system that they feel a need to resort to it. It’s not going to help, but sometimes helplessness is an encompassing feeling.
Thanks for reading, and please donate to the Alzblog team for the walk if you can! Link in the picture!
Dy
The healthcare cluster cluck is infuriating! I again applaud your courage and tenacity!🙏💗💥
As always, amazed by your courage and eloquence. I love both Copelands, and will give Stewart's new opus a listen. Hugs