36: Thoughts

I mentioned a few posts ago about how there seems to be a real prevalence of Alzheimer’s (and other dementia related issues) on standard TV shows. Some of them handle it gracefully, and others with a seeming nonchalance. It’s not only medical shows either. For example, the show Fire Country had a recurring character start to have memory issues all of a sudden. Several episodes later, in a moment of family driven lucidity, he suddenly decided to allow himself to go to an assisted care facility that he’d been fighting against. Completely unrealistic - although they did do a decent job depicting the pain the disease causes on the rest of the family (who spent a good portion of the time being in denial).

Alzheimer’s has been a recurring topic on guilty pleasure Grey’s Anatomy for the entire run of the show. Main character (and titular heroine) Meredith Grey’s mother has Alzhimer’s and is shown to treat people cruelly and to really lose her place in the world. <Spoiler> She’s been dead for some time now <end spoiler> - well before I was diagnosed, so at that point, it was just another storyline. However, there are things about that plotline that hit home deeply now, and I’ll get to the meat of that in a bit. Meredith also decides that curing Alzheimer’s is going to be her life’s work - which to this point is still unsuccessful, just like real life.

Just last week, there was another subplot along the same lines, where someone brought in their partner for a transplant. Over the course of the episode (s) it was determined that the patient’s memory issues were not confusion as relates to a failing liver (which is a real thing) but, in fact, Alzhimer’s - which had been known but not been disclosed. On the show, this led to an ethical dilemma regarding who is best suited to the transplant - this Alzheimer’s patient or another person (also conveniently at the same hospital) who could experience a full healthy recovery.

And that brings me to the crux of today’s post. What kind of healthcare choices do I want to make (or have made for me) in the future, knowing that the eventual outcome is more than likely incredibly dire. I’ve stated here in the past that my intent is to stave off cognitive decline for as long as possible in the hopes that eventually a cure will be developed. As we know, I’m doing everything I can in that area. I’ve also written about the fact that the eventual choice might end up being some form of medically assisted (or self inflicted but well monitored) death - and that might have to happen while I’m still lucid enough to make that informed choice for myself. The concept of giving up a little bit of good time in order to not have a lot of bad time is the prime operative here. But that all is predicated on an otherwise clean bill of health.

The burning question here is what do you do medically to save yourself, and at what point in your illness do you decide you want no more intervention. I’m not talking standard DNR type stuff here. The patient on Grey’s was clearly in stage 3 (explained in a bit) of her Alzheimer’s. She had real moments of lucidity, but also had no real idea why she was in the hospital at all for most of the show. The person driving her medical decision in this case was her wife. Earlier in the show’s timeline, Meridith’s mom was brought to the hospital for some tumor (or whatever - it doesn’t matter), and experienced deep confusion as to who she was or why she was hospitalized. She ended up having to be restrained, and eventually returned to her care home. Is that worth it? I ask in general. If you have a sick animal that you love, you must ask who you are helping them for. They have no idea why you’re stuffing pills (or whatever) down their throats.

A cat (or a dog) has no concept of what dialysis is. They don’t know why it’s important to have a blood draw to check for diabetes. As I’ve mentioned in the past, an animal will head off into the woods (or a quiet corner of a closet) when it no longer can sustain its life. They don’t understand medicine, and god forbid they have no idea what surgery is. And neither does a person with dementia. Probably.

I’m going to seem to be a bit of a hypocrite here. Bo, our cat, had a terrible eye infection. Actually three different infections at the same time. The medication for each one contraindicated another. And they hurt. Bo had to have 3 to 4 drops and a pill three times each day. He wasn’t getting any better either. But all he did was run away from us. The pet ophthalmologist was a 2 hour drive from the house - and Bo does not like it in the car. At all. So, Bo’s life sucked. His eye hurt. We hurt his eye many times a day. We took him for long car rides regularly. We stuffed pills down his throat. This was a totally untenable situation for us and for him. We weren’t actually working in his best interest - at least in his mind. (And we suffered as well. He hid, bit when we tried to administer meds, and was generally miserable. And we really love Bo.) Eventually, after a lengthy conversation, and in consultation with the veterinary ophthalmologist, we elected to have the offending eye removed. Bo is all better now, he was pain free and peaceful within two days. He’s completely adjusted to having only one eye (as long as you don’t sneak up on him). So, in Bo’s case, he felt better so quickly that his entire behavior changed. We became convinced that he’d been in pain for longer than we’d known. We felt (and still do) that we had made the right move - despite the generalized trauma that he endured. I also know this – if there had been no option to remove the eye, and we were forced to continue the medication for a long time, we would have put him down. He was in no way living a good life.

And hence the quandary. The big difference is that humans have a different intellect than animals - at least for the most part. So a human understands that medication (pharmacological, alternative or herbal), surgery and general hospitalization can be trying - but usually are in their best interest. Alzheimer’s victims may very well not understand those concepts at all. They may wake up in a hospital bed completely unaware of their surroundings only aware that something different was hurting. That some stranger (presuming that they knew anyone for a length of time) was poking at them and asking questions that they didn’t know the answer to. That someone was standing by the bed looking worried or crying. And after a time, they return to the place they sleep - whether it be their home for years, or a simple room where others like them are passing the time until they die.

Now, I’ll be honest here. I have no idea what it’s like to be demented. I only know what I’ve observed, and I don’t like it. I’ve had people tell me how happy the people in memory units seem to be. And I have no (and nobody does) real knowledge of what is happening in what’s left of their minds. I also know that the toll on loved ones is immense. One thing that all these TV shows seem to get right is the utter devastation that the lengthy loss of loved ones causes. Of the effort it takes to keep them safe - even if they’re denying that the disease has actually taken someone. Of the financial and emotional burden that is placed on families.

So after watching the episode of Grey’s, I looked over and Wendy had tears streaming down her cheeks. We had a talk. We’d been through it before - and were in complete agreement - but thinking about it doesn’t make it any less painful a thing to discuss. And it’s a complicated process. It goes something like this (in the broadest possible terms). Keep in mind that in general the stages of Alzheimer’s are as follows:

• 1: Preclinical Stage:

  • No noticeable symptoms

  • Brain changes are present but not severe enough to cause cognitive decline

• 2: Mild Cognitive Impairment (MCI):

  • Memory problems, especially with recent events

  • Difficulty with planning and organizing

  • Challenges with finding words or following conversations

(My diagnosis says I’m at stage 2. I’m not sure I feel that is correct - one of the reasons I’m seeking alternatives). It’s quite possible that all the light/music/sound/mushroom/exosome/NAD+/eating/GLP-1 work I’m doing is actually causing a reversal back to the preclinical stage. I do have many of the challenges of MCI, but I don’t feel they drastically and negatively affect my day-to-day life. But that all could be wishful thinking.

• 3: Dementia:

  • Significant memory loss and confusion

  • Problems with daily activities, such as bathing, dressing, and cooking

  • Changes in behavior and personality

  • Difficulty with language and communication

• 4: Further Progression:

  • Symptoms worsen and individuals may need more assistance with daily living

  • The late stages of Alzheimer's can involve severe cognitive decline, loss of mobility, and difficulty with basic functions like eating and sleeping.

So my choices are these: I can continue to have my life prolonged, no matter what happens (as most people do), or I can make semi informed choices about how much is too much. To that end, I’ve (and I’ve probably mentioned this before - but it's really super important - and scary to fill out) I’ve filled out this form, which is designed by the Hemlock Society out of San Diego. I also count on my care team - Wendy specifically - to interpret this form well. Because the disease matters. A blanket DNR is too draconian for stage one and two - and while in stage three there may be times of lucidity - but that might be the period where I realize that I have to give up the good to avoid the bad. And some of it is just pure avoidance of the eventual hell that is sure to come, and as the form states, when one’s mind is already in a bewildered state, a hospitalization (or anesthesia recovery) can be extremely traumatic and lead to deeper confusion. This was exemplified well in Grey’s Anatomy. Bo, mentioned above, is a cat. He more than likely lives his entire life in stage two. So in his case, the surgery was a viable option. I know that by stage two, I will want no invasive treatments, unless they are for a cure for Alzheimer’s that will return me to stage two or better.

It’s not pretty, and there are organizations out there who are actively seeking to prevent people from seeking end of life treatment. Not just the religious ones. I read an article recently about a group that’s fighting against MAiD because it could lead to mentally ill people being put down against their lucid wishes. That’s why what I’m doing here - and in the form - is so important. I want it to be known that my wishes are (and strongly) to not live a life in a home, or under long term care. I don’t want to suffer needlessly and have major surgery (unless it’s to replace my brain) just so I can prolong a life that is missing an essential facet of who I am. I want to be able to choose my own end and I am articulating it now, while I most certainly am lucid.

For my friends and family reading this, don’t fear. I’m not in a bad place again (like I was at the beginning of this blogging process). I’m actually in a pretty good place (and not just all things considered - but really!) I’m just trying to clarify and articulate my stance - with the knowledge that I am doing everything I can to prolong as good a life as I can.

I’ve just applied to join an advisory group with the Alzheimer’s Organization. I’d like to think my voice is a good one, and would be helpful to those recently diagnosed and suffering. I hope I get in. It would be really meaningful for me.

This week’s light therapy included the following albums:

Hashshashin - nihsahshsaH (adj.)

Material - Seven Souls

Club d’Elf - Electric Moroccoland

Various - Take Me To The River (Memphis)

Korai Öröm - 1997

My Sleeping Karma - Atma

King Canyon - King Canyon

Bugge Wesseltoft Am Are

It's going to be a busy couple of music weekends. Wendy and I are going to see Club d’Elf tonight and I’m going alone (because Wendy will be away) to see Moonlight Benjamin a few days later. Both shows are at a new club that’s opening in my town. Next weekend, we’re going to see the Harlem Chamber Players at a local university. I’m excited to hear some innovative live music!

Thanks, as always, for Reading

Dy