9. Toll

Yesterday was my fifth Leqembi infusion. While again, I felt no adverse effects, the process was abysmal. The day started with a dental cleaning. Because I had a heart procedure and sepsis in the past, I’m required to take prophylactic antibiotics when seeing the dentist. Never a big deal. So, I went from the cleaning right to the infusion center, where I told them, when asked, that I had taken some Amoxicillin that day. Immediately all forward process ground to a halt. For many infusions, I was told, one cannot take antibiotics. They weren’t sure about Leqembi, but they needed to check with my Neurologist before proceeding. Now, despite the annoyance factor, I do appreciate due diligence - especially when it comes to my health. (I also don’t have an issue when my credit card company calls to inquire whether or not I made a specific charge - even though sometimes it’s a slowdown.) The issue here is that my entire Neurologist’s office closes for lunch at noon. When did that start to happen? Used to be that breaks would be staggered so that someone - especially in a medical office - would be on hand. No longer. Pharmacies close, doctors offices close, post offices close and more. Frustrating for the consumer but we’ve allowed business to take over and happily eat the small bits of offal we’ve been given these days. (I’m looking at you specifically, airlines!) My appointment at the infusion center was at noon (Normally I go first thing in the morning, but started late because of the pre-existing dentist appointment which I didn’t dare reschedule in fear of needing to wait months for another opening - another bit of anti-consumer practice we eat.) Of course, as is the norm these days, by the time I got there (early) they were already running late and it was 12:30 before I even got into my chair. Then I had to wait over 45 minutes for my Neurologist’s office to open and get the go-ahead. And THEN they ordered the concoction from the pharmacy. The pharmacy, of course, was running slow. It was 2:45 before they even set the infusion point in my vein. Now, I believe I’ve mentioned that I have rolly veins. They hide from the needle despite showing up real nicely. I always mention this - and most times the nurses (or phlebotomists, etc) think they know better. So it took three attempts yesterday before they finally found a good vein - this time in the top of my hand. Now, those of you who’ve experienced this know that it’s not the most comfortable place to have a needle in you for nearly three hours. But so be it.

When I got home, nearly three hours late, I discovered that a company had sent me the completely wrong item, which I had excitedly been tracking. Super frustrating. So yesterday took its toll on me. I was exhausted, despite not actually doing anything. But that was just a piddly little toll in the grand scheme of excessive tolls that will be levied over the next few years.

Alzheimer’s, as we know, is a disease that comes pre-packaged with many hefty tolls. Not only the toll of slow mental decay leading to inevitable death, but the toll of planning for it - of existing with it- of inflicting it on your loved ones - of knowing that it, above all, is all there is going to be. And  that’s just on you - the afflicted. The toll on those who love that person might even be higher. Hopefully you all read - and wept over - Wendy’s beautiful post the other day. (I had planned this topic for myself before she posted, but it sure did provide a stunning lead-in didn’t it?) For those, there's the unenviable toll of watching all of this happen - of dreading the outcome - of trying to continue to live life and be positive - of maintaining function in a rapidly devolving existence - and of trying to soak every last good bit out of your life and love - and of knowing that eventually, inescapably, you will bear witness to the death of someone you hold dear.

There will be the toll of maintaining a relationship with someone who will slowly forget who you are and what you’ve meant to them. The toll of distance and disregard. The toll of a vacant smile of greeting that could be issued to just anyone when your entire world is shattered. The overwhelming toll of rage - at the world, the deep injustice of it all - the process - at your love for getting sick in the first place - at yourself for not doing more - at science for not finding a cure - at moments missed - and that this is how it all will end. There will be the toll of songs that remind, of memories past, of seeing unread books, and unwatched shows. 

There will be the toll of becoming a caretaker of someone who once was a full partner. The toll of battling with medical, financial and insurance organizations. The toll of loneliness and isolation - or visits with somber overtones. Of, potentially, a stranger living in your home providing the care for someone you can no longer manage - or of needing to schedule visits to a sterile facility where that same person is finishing out their days - mostly alone. 

It is my hope to minimize as many of the more mundane tolls as possible by frontloading the business part of things - documentation, planning, organization, consolidation, financial management etc. But really, that’s the easy stuff. Sure it comes with an immediate toll - everything does - but at least it won’t be a burden to manage in the future when the overwhelming emotional toll is all there is. 

We’ve (all of us involved) need to figure out ways to bring joy back into our lives. Soon, Wendy and I fly to Phoenix to see Jonas and Pickles. We’re really looking forward to that. We’re also going to research a bit about medical and living opportunities there - just in case. Wendy and I also need to plan some vacations - just the two of us - and maybe some more family oriented stuff too. We also need to just get out of the house - day trips or weekends away. Dinner out, a concert (several booked already), comedy show or play. Visits with friends, with the grandson (and maybe his parents), and other extended family. We’ve got to stop staying home and worrying. That’s helping nothing. (It would really help if the disability folks got on the stick so we’d know if I’ll have any income coming in.) The toll is ever-present, but we can do short term things to lessen the effect. And must.

Finally, a couple of other thoughts:

VSED, as much mentioned in a previous post, has struck me as a potential natural way to go. I spoke of animals finding a corner, or going off into the woods to die when it’s their time and they know it. Well, what else is that but VSED. Perhaps VSED would seem more palatable if it were not done in a hospice room, or even your bed - surrounded by equipment, but out in the woods or on a beach somewhere soaking in the sun and hearing the waves one last time. I read a science fiction book a long time ago (in fact the first book I ever gave Wendy to read) in which the main character - a telepath - went to the beach while his beloved wife was dying. He shared his mind, feelings and vision with her as she passed. It was beautifully written and a lovely thought from a great writer (who, sadly, later succumbed to some really unhealthy political viewpoints that colored his writing such that he became, to me, unreadable. No names will be mentioned.) In any event, perhaps, upon deeper reflection, VSED is not as awful a concept as I originally thought. It’s still awful! Who am I kidding?

And lastly (for the nonce), I wonder about this energy I suddenly have - especially for the writing thing. I’ve been wanting to exercise my capabilities in this area for a really long time, but have never been able to summon up the long term interest. I read an article about gamma light therapy recently (which I’m doing through the clinical trial, as you well know) and it mentioned that several weeks into use, participants saw renewed interest in various things, and increased organization and mental clarity. So I leave you on that positive note (after a rather depressing entry) and, as always…

Thanks for reading!

Sean