Category: November 2018

This is very difficult for me to write about, but it’s important enough that I’m going to. Robert is my children’s brother on their dad’s side. His mom is my children’s dad’s second wife, Kristy. He’s 24 years old, so only a few years younger than my own kids. They grew up with him whenever they were at their dad’s house. For Laura, that was a bit less than 50% of the time, for Darren it was more than 50% of his childhood.

We have just recently learned that Robert is very ill. A few weeks ago we first heard that he had a rare blood disorder with too many red blood cells and too many platelets, and was undergoing blood transfusions. Then two weeks ago we heard that he had suffered permanent vision loss, including blindness in one eye. Then last week the news was that it’s cancer. Also that he’s at a really high risk of stroke due to the thickness of his blood.

This is very sad news, but I’m still surprised how terribly upset I am about it. I never raised Robert, he’s not my kid; I honestly hardly know him. But he’s part of the family. I’ve been hearing all about him for 20 years. He and Darren fought like siblings and Darren would call me and I’d have to calm him down and admonish him to be nice to his little brother.

I also don’t know Kristy very well, but she put an enormous amount of effort into helping raise my kids (particularly Darren), and as far as I can tell, she did a fantastic job. Darren lived with his dad and Kristy for half of his middle school years and all of his high school years. Those were rough times for Darren, and Kristy was really patient with him. I’m grateful for her, and I’m devastated for her. Robert is her only child and I can’t even imagine how horrible this must be for her.

I feel helpless; I’m just the ex. They’re out in Washington State, and they certainly don’t want or need me showing up in their time of worry and grief. I sent a card, and told them to let me know if there’s anything I can do. But I can’t imagine what I could do.

I think this is affecting my relationship with John in a tangental sort of way. I’m feeling like life is short and unpredictable. I’m starting to get very uncomfortable with how much business travel John does and how many long hours he works. This has always bothered me, but I’m starting to feel like we really do need to figure out how to get his job down to a normal 40-hour week. I want him home after 5:00 in the evenings. I don’t want him out in the California Bay Area traffic trying to catch a late evening flight from Oakland. One time recently he flew from California to the east coast without even coming home in between; I don’t even know where he is half the time.

Also I’m wanting to push harder on the timeframe of getting the Placitas house remodel done and that house sold, and a new house for us purchased. I’m talking about commuting on the train instead of living in Santa Fe (that would involve giving up my coaching business because I wouldn’t have time to coach in the evenings). It would also be hard if I had to go home with a migraine. But somehow I’d like us home together in the evenings.

I also want to see my kids more often. I’ve got to get my act together and start being more willing to fly. Flying is very hard on me because of my sensory integration disorder. The same things bother me as bother everyone else – the noise, the smells, the crowded conditions, the movement of the plane, etc., but I think it’s just harder for me than average.

I don’t know what to do about the fact that John works long hours and travels a lot. And the fact that I work in a different city than he does. And that my kids live in different states. But it all doesn’t seem right somehow. And I feel vulnerable, and like I’m making the wrong choices in life. Because of what is happening to Robert.

Seriously. Apparently we not only buy houses in batches, we buy cars in batches. It wasn’t that long ago that we got me an old pick-up truck. Now, suddenly, we’ve got a brand new 4Runner!

In some ways, it wasn’t sudden at all. We’ve been talking about replacing the Jeep with a 4Runner for at least 5 years now. The plan was to run the Jeep to the ground, and when it wasn’t worth fixing anymore, we’d get a 4Runner. So we knew it would be fairly sudden when it happened – and it happened.

Fortuitously, it’s the season to buy the previous year’s model (2018), since the 2019 models are now available. But as usual, John couldn’t find what he wanted in Albuquerque and flew to a different state to get it. Apparently the perfect 4Runner was only to be found in Dallas.

Buying out-of-state seems to be a integral part of John’s standard car-buying method. Last month he flew to Phoenix to get my pick-up truck.  He got the camper van from Colorado a couple of years ago. Apparently he also bought the Jeep from Colorado (that was back before he knew me). His first boat came from Texas, and after he sold that one, he bought his current boat from Arizona (Ironically, because clearly there’s no more use for a boat in Arizona than there is in New Mexico.) The Mini Cooper came from the farthest – he went all the way to Minnesota for that one! I’m beginning to think buying out-of-state vehicles is an excuse to take a mini-vacation.

Anyway, it seems like a nice truck. It’s our first actual “new” car we’ve ever purchased together. The only other time I’ve ever bought a brand new car was in 1986 when the kid’s dad and I moved from Oregon to upstate New York without a car – and with a baby on the way. I think we bought a blue Toyota Camry although I’m not 100% sure about that. That was a long time ago.

The new, red, 4Runner:

Plenty of room in the back for the dogs.

Although the camper van is still my favorite vehicle 🙂

There’s really not much to say about voting that hasn’t already been said. Just GO VOTE!

In other random news, did you know that the commuter train that goes up and down the center part of New Mexico is called the Rail Runner? I mention that because it only just now dawned on me that the name must be in reference to the famous New Mexican road runner!! I can’t believe I never noticed that before. Look, it even has a picture of a road runner on the train.

I’ve had a rough week (depression, migraine). But John and I are taking a camper van trip this weekend, so I anticipate feeling lots better very soon.

Several unrelated events have got me thinking about dementia.

At work, our role is to regulate the air emissions (pollution) coming from large industrial plants, like oil and gas plants. Part of that process involves those facilities sending us regular reports containing data about their emissions.

Last week an older gentlemen employed at one of those facilities was having a great deal of trouble getting his report sent to us. He called numerous times over the course of a couple weeks, repeatedly asking the same, very basic questions. They weren’t technical questions. They were questions about which form to use, and whether it needs to be notarized, and how to fill out the fed-ex mailer. All of which are reasonable enough questions the first time, but not the third or fourth time. (Luckily, he’s probably not the same person responsible for the accuracy of the data in the reports, because that part is surprisingly complicated.)

Then this weekend John and I had an encounter in a grocery store parking lot with an elderly woman leaning on her horn and shouting at us. Initially, our response was to feel angry, because she was being aggressive and there was no reason for it; she was clearly way out of line. But then we realized that it was just too incongruous. There was really no comprehendible reason for her behavior. That’s when it dawned on us that she probably had early stages of one of the types of dementia that cause anger and upset along with the confusion, such as Alzheimer’s.

Then this week, I came across this article in one of my magazines.

https://www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care

It’s a very in-depth look at one of the key controversies around dementia, which is how much should caretakers try to keep their patients grounded in our current reality, vs going along with whatever reality the patients are in at that moment.

Most people’s initial reaction is “don’t lie to them, it’s not ethical or respectful”. But is it ethical to tell someone over an over that their spouse is dead, they’re in a care facility, and they can never go home – when that message causes anguish every time they hear it? For the patients, it’s like they are hearing it for the very first time, every time they are reminded.

Wouldn’t it be more ethical to talk with them about the moment in time, 50 or more years ago, that their minds are currently occupying? But where do you draw the line between chatting with them about how things were 50 years ago vs saying things like, “Don’t worry, the children are fine. They’re just outside playing.”?

Turns out that most caregivers who are experienced with dementia care don’t try to bring their patients back to reality over and over, because it’s futile and upsetting. Nor do they ask reality-based questions that put their patients on the spot and make them scared and confused. They just join in the story. The article talked about how improv skills are useful. But really, any kind of unrehearsed communication is improv.

Memory care facilities are starting to deliberately create spaces that look and feel like a small town, rather than a nursing home. They even have fake bus stops, where patients will wait for awhile until they lose interest and go on to something else. Which seems very sad, but I think I’d rather sit outside at a fake bus stop that will never take me home, than be cooped up indoors for the rest of my life.

I’ve always been afraid of getting dementia. Possibly that’s because I know enough psychology to know that we cannot trust our minds at any point in life, and certainly not in old age. Or maybe I’m afraid of getting dementia because we are all afraid of getting dementia.

Dementia raises the question of who are we, really? Are we anything other than our minds? If we have an illness such that our leg isn’t working right or even our heart isn’t working right, we still have a sense of self. But if our illness changes our perceptions of reality, or causes personality changes, who are we now? Are we the same person? And if we are no longer ourselves, were we ever anything other than what our minds were doing?

It got me thinking about what I would like if I had dementia. Which of course I can’t know, because the dementia would change my preferences. But I can guess. For example, lock me up somewhere with a secure courtyard, please, give me the means to get outside. But do lock me up. I find the world scary enough now, with all my faculties mostly intact – I don’t want my future self wandering around lost and scared.

Since, with advanced dementia, every day is a new day, why not make it positive? Give me little stories about kids and dogs and parks and gardens. It doesn’t matter if they’re true, or even if they have anything to do with my life.

AI is too big of a topic for this already very long blog, but I am all for being entertained by a chat box. Put a little chip in a stuffed dog, let it spy on me if that helps my family care for me, and program it to talk with me. I’d even like that right now. (Just the chat part, not the spying part).

I’d love to have a decent chat box right now. My issue with them, (and the reason why I don’t currently use Siri or own an Alexa), is they are connected to the internet and beaming who-knows-what to who-knows-where. I’d like a disconnected one. I don’t need it to look things up on the internet for me. I just need it to chat with me in a relatively realistic manner.

At any rate, I’m veering off topic. Here’s my idea. I think if I had dementia, I’d like to have someone tell me stories. For example, someone to call me on the phone, and tell me the news of their day. This is one of the most basic aspects of our relationships with close friends and family members – is just relating our day. But current family news can be very confusing and upsetting for people with memory loss. I think it would be less upsetting if they were just stand-alone stories, where the person with memory loss wasn’t expected to know or remember the names of the people in the stories.

In addition, since our old memories are always in there somewhere, it would be emotionally impactful if those stories related to my own life, or at least believable in the context of my own past. It occurred to me that I could write those stories and record those stories myself, for my future self.

That sounds like a lot of work, given that I have no actual reason to believe I’ll end up with dementia. But I think the exercise could be useful for me now. I had a bit of a rough childhood, which I’m not going to describe in this blog. But, as these sorts of things invariably do, my experiences have had some lasting negative impacts on me. These unfortunate consequences can never be fixed, but they can be mitigated to some extent. One of the things that is known to help those who are dealing with difficult past events is to reinforce the positive memories that do exist – and maybe even augment them a little.

It occurred to me that if I wrote and recorded happy, brief, “family news” stories about a little girl named Tina (that was my childhood name), it would be potentially beneficial for me right now, regardless of my future. The narrator could be a made-up person, an aunt or big sister who never existed. And that person’s identity wouldn’t need to be explained.

It could be a series of phone calls, or maybe even videos, like a skype call, and each one of them would start out something like this: “Hi, I’m just calling to see how you’re feeling today – oh, and let me tell you what Tina did today, it was so cute…”

I think it could be fun to go back and listen to them someday, for the same reason it’s fun to go through old photo albums occasionally. I got this idea thinking about dementia, but now I think it could be a good idea even assuming I never get dementia.

I’m scared though, about trying to pull this off. I don’t think this will be an easy project to do. I’m much more comfortable with the present and future than I am with the past. I don’t know how to approach it. Should I write the stories first, and then record? Or should I just turn on the mic and start reminiscing? What if I can’t keep it positive? What if I can’t think of anything to say?

LOL, I sound just like my clients do when I suggest they try something that’s a bit of a stretch for them. “But…but…I don’t know how! I’m not good at that! It won’t work!”

Ok then, I’m doing this thing. I’ll let you know how it goes.