13. Status

I’ve been thinking (and blogging) about death far too much recently. There is, of course, a lot more to say and think about here, and I’m constantly discovering more things to know. But I don’t want to write about death right now. I promise I’ll get back to it - in fact I’ve got some interesting thoughts and ideas on the matter - but for now, I want to give a real status update. Before that I want to acknowledge the owner's name change on the Substack. For reasons I can’t get into, I need to be more anonymous. I chose the name Dy for several reasons. The first is obvious, and the second is because for some reason, that’s what my 3 year old Grandson calls me. (Wendy is Gugu, I’m Dy.) He picked them out himself. There’s a funny story here - we were at the supermarket and he saw me down an aisle. He started yelling my name down the row quite robustly… Dy! DY! DYYYYY. The aghast looks shot his (and my) way were priceless. It was hysterical. Poor kid has no idea of the irony here.

But rather than dwell on death now, I’d like to give y’all a sort of status update on my condition. I want to start with this little ditty: I’ve been lying to you (and myself). I said that I’d post unedited articles here. But that’s not happening (and never has). I edit the hell out of them. My thoughts are not nearly as cogent as they appear on the page. Many of you have commented on my writing ability, and I am very appreciative of that (and I AM a good writer), but I don’t want you to think that I sit in front of my computer and bang these things right out. They are exhausting to create. Quite often while writing, I have a great next thought - and by the time I finish the last one, I’ve completely forgotten what it was. My left (dominant) hand tremors make typing and mousing very difficult - often causing me to type words over sometimes two or three times. I can only sustain the initiative for a short period before needing to take a breather. I am still in awe of the fact that just thinking can make me tired. And I love writing them - each and every one. They are essential to my well being and I dread the day I might have to stop. My mental health would suffer greatly without them. They are a release from my consistent stress and anxiety. 

If I don’t get a nap midday, I’m useless. The combination of stress, central sleep apnea and lingering prostate issues cause me to wake multiple times each night. I rarely get more than 2 hours of uninterrupted rest. Two nights ago, for example, I awoke at 2AM. I lay in bed for a half an hour before realizing that my sadness and stress levels would not allow me any further slumber. 

I’m stressing about the president elect’s cabinet choices - and how they could so negatively impact my life. All predictions appear to be in line to come true. Project 2025, despite the verbal denial, will become real. Just one more big lie from the current president-elect. The people who wrote it are being put into position to make it so. And that’s just about the effect on me. Millions of others will be affected by this political theater as well. I’m stressing about family relationships, and the knowledge of the burden I’m going to place on my wife and kids. I don’t quite know how to ensure I get what I need, while honoring the needs of those who must stand by my side. I’m sadly missing the easy grin on Wendy’s face. Gone is the raucous laughter and twinkle of the eye. The nights and car-trips filled with easy conversation and companionable silence have been replaced with frequent conversations about loss, finances and future needs. I long for easy connection and humorous interactions with people. There is a combination of issues here - I’m not capable of sustaining joy for too long, and people are generally trepidatious around me. And for many reasons, they’re right to be. I can dive into my own morass in the blink of an eye without even trying.

Yesterday I went to the funeral of a woman I never met. She’s the mother of a dear friend, and we went to be supportive to her. I had a bit of a breakdown and had to leave early. I always tend to get annoyed during the religious part of a funeral - I find them mostly unappealing. I understand that others connect with that sort of thought, but I don’t. That’s normal for me, however, and of itself was not an issue. But it did get me thinking about what I might want to be said at my own passing, and that in reality, I wouldn’t actually be there to hear it. For that reason, I’ve decided to have what is often referred to as a FUNeral. This is a party, while I’m still alive and during the window when I’m still lucid, but know the time is imminent, for a celebration of my life. So, we migrated over to the ubiquitous slide show section. After a few minutes I noticed a severe upwelling of grief. Not for the family depicted in those pictures - although the day was supposed to be about them - but for me! I started thinking about what photos would show at my FUNeral, and who would pick them and how. And I realized (again) that I really am going to die of this godforsaken disease. In that moment my mortality came and smacked me right upside the head, and I had to leave. Thankfully, I have the most intuitive wife, who noticed that despite my stoic presentation, I was in deep crisis and ushered me out and said goodbye to those we had come to see.

Now here’s the thing… I’ve been immersing myself in these thoughts for the past 20 weeks. I can’t really explain why this particular incident hit me so hard, but it did. Part of it is due to some of the legal wrangling that has occurred recently. Things done to ensure the financial health of my family should I need to be rehomed while also exploring other short term financial benefits. This process has not gone really well. So there’s that level of stress happening at all times. Let me be really clear here. I do not want to spend my last lucid hours ushering people to their carts at Wal-Mart. But I have a real fear that this is what might be in store for me in order to maintain my existence while I am able. I’m 61 years old, and clearly no longer qualified for or able to do any work that requires deep thought or consistent time. I also need to take the time to see a multitude of specialist doctors and I require expensive medication. It’s looking bleak, and I live with an omnipresent sense of impending doom. Because of  all those things, I’ve also spent a lot of time (as l already chronicled here) investigating my own options for death. (Oops! I’m back at it again).

I’m trying to be as graceful (not that I was EVER really graceful - think ankle sprain in my sleep clumsy) about this as possible. I’ve been attending webinars and lectures on ways to die.  A few weeks ago I ranted about the lack of availability of options for those in America who want to transition in their own time. In early December I’ll attend a webinar offered by the Hemlock Society of San Diego (who seem to be doing really great work in this sad environment), on ways to actually do MAiD (Medical Aid in Dying) when you have dementia. I have a feeling I’ll have to relocate for that though. I also did one offered by the same group on what they refer to as a Legacy Letter or Ethical Will. This is a document you create that aims to pass a bit of your own self and wisdom (presuming you have any) down to your survivors over generations. I was already writing the Storyworth project, but changed, after attending this webinar, the focus (at least a bit) towards “less story and more insight”. I did one in that manner, and I’m quite pleased with it. It may surprise those reading this blog that I actually have even MORE to open up about concerning my family, my hopes and dreams for them (even those I’ve not met yet, or are yet to be born - no pressure you two…) and the general future of the world then I write about here!  I even asked many family members to try to write a draft of their obituary so I could make that the last chapter of the final product. It is my hope that the Storyworth book and this blog will keep my family aware of who I was and more able to avoid only remembering who I became. Maybe they’ll help ME remember who I was when I no longer can.

So, I end this unsure of whether I’ve hit the points I wanted to hit when I started this post over four days ago. But it is what it is - and I can always (for a time, anyway) do another. And for now, 

Thank you for reading

-Dy

A few housekeeping notes: 

• I will no longer be posting the blog updates to any social media platforms. If you want to stay abreast of what’s happening in ALZworld, please sign up for updates. This does not require a Substack login. Just navigate directly to alzblog.substack.com and you will be asked to sign up. If you want to like or comment, you have to create a Substack account though.

• I came across this very interesting article about some current work being done in the pharmacological arena as relates to Alzheimer’s. It’s linked here:

• I bit the bullet, and decided to start taking Lion’s Mane Mushroom supplements. I’ve been doing it for a few days. I’ll keep you posted if anything develops.

• I had my 6th infusion and 2nd MRI this past two weeks. (I’m heading out for infusion number 7 in just under two hours.) Once again, there were no changes noted to my brain - which I think is what is supposed to happen. One can only see the Plaques with a PET scan. I’d like to have another one of those at some point soon.

• My 8 week music and light clinical trial is over! I really do feel like it helped, and for the most part was very enjoyable. I need to find where I can get the light device so I can continue to use it on my own. I am going to Boston to have another full day session in December and hopefully, since I can’t find the exact stuff I’m using, they’ll tell me what it is when I return this kit.