In This “Episode”
Do a live episode of The Alzheimer’s Podcast, they said.
It’ll be fun, they said.
I blew that up. Even when we tried a do-over, the audio gremlins were out in full force. So, consider this a written episode. 😉
Below, part two of our conversation from April 14, 2020. Read part one first, for full context.
Phil Gutis: You saw my Facebook post. I saw you reacted to it, about the Nick Kristoff piece in the New York Times and the video, which was sad. And you know, I don’t think there is a doubt that we will be experiencing much more sadness in the months ahead.
But I also think that short-term, I think the answer is we have no clue when people be able to go back and visit in person.
I think the nursing homes and the [other] long-term care [settings], will get more skilled at scheduling Zoom appointments and things like that, so that people can talk with their loved ones and see their loved ones and stuff like that.
I do believe, like I started the conversation with, if the White House can pull off 15-minute tests, eventually others will too. But that’s not next month. That’s not May, that’s not June. It’s probably not July or August, you know? It’s definitely gonna take time.
But I do believe that this country, when its forced to, can turn things around, can pull it together. I was just reading a little while ago a news brief from the CDC, which said that the American public has been remarkable at staying home. I mean, you know, we see a lot of examples of people who aren’t doing it, but CDC said that its initial projections had that only 60% of the American public would follow the stay at home directives.
Which is why I think projections were so much higher at the start, and now they’re saying compliance has been in excess of 90%.
Christy Turner: Wow! That’s great news!
Phil: So, you know, I think nobody would ever have projected that, and nobody even today would actually think that. Because it’s not necessarily interesting when people are following the rules. The interesting stuff, newsworthy bits, are when people aren’t following the rules.
Christy: If it bleeds, it leads.
Phil: Yeah, so that’s what you see in the newspapers and stuff like that. You don’t see necessarily—it’s very hard as a reporter to write, “90% of people are following the rules!”
The motorcycle community in my town was very upset. They wanted to park where they’ve always parked on South Main Street, and they did a huge protest last weekend. A huge, stupid protest. And, you know, they all came through town with their stupid motorcycles blaring, and all parked on South Main Street because they said they could and the town couldn’t stop them.
So, you know, that’s what makes the news. That’s what captures our attention. But if it’s true that 90% of the American public, he’s staying at home and understands–another little tidbit I was reading is that 50% of the public understands it’s going to be another month before they can go out again.
So, I guess what it comes down to from my perspective is, we have to have hope that it will get better, and that we can do better. Otherwise, why do this? Why do that? You know, why, why be an active participant? I understand you come from decades of frustration with how memory care and long-term care and Alzheimer’s and all those things are treated.
But I understand that frustration, right? It wasn’t all that long ago the federal government was investing hundreds of millions in Alzheimer’s research, like, two or 300 million to Alzheimer’s research annually. And in a very short period, it’s 3.3 billion a year. So, things change. They don’t change as fast as we want them to—
Phil: As fast as we need them to—
Phil: Exactly: never, never, never. But they do change.
Christy: I am not a patient person, which I think some people find a little bit weird considering the fact that I specialize in dementia.
Christy: And I just, I don’t think of it that way. I don’t frame it that way and I never have. I know a lot of care partners want to slam their head against the wall and go, “How do I get more patience?” I always say, don’t focus on that, on having a lack. Instead, focus on being in that moment with your person, and then it’s all okay.
But your point when it comes to—you know, of course, I want my tribe taken care of. So, what’s the number one health issue in my mind? Neurodegenerative disorders. Give it all the money, all the research dollars! Right? And I understand, of course, there are other things that are also really important.
And I agree with you: I think hope is a vital ingredient in getting through a day, for living life. You know, as much as I talk about how important it is to have a sense of purpose to get out of bed in the morning, having a feeling of hope throughout the day is also important. Or kind of having that pervasive hope running in the background.
Because if we thought, Okay, this is it. Things will never change, I think for a lot of people that would be really bad. That would be a really destructive thought.
Phil: And a lot of people are feeling that way. I mean, you know, you read stories about—I speak from personal experience here—people wide awake at 3:00 AM but can’t shut off their brains. I can’t tell you the last time I have fallen asleep and been able to stay asleep before three or four o’clock in the morning.
And, Lordy, it’s debilitating. But, you know, I guess I’ve had to learn this optimism in some ways. I mean, four years ago I was given a death sentence, right? And no one told me then what my life expectancy was going to be.
I’m sure I’ve told the story on the podcast of this, of Pat Summit, who was a famous professional women’s basketball coach.
Christy: The winningest coach of all time.
Phil: Right. And she was diagnosed with early onset Alzheimer’s, and right when I was receiving my diagnosis, she died. Five years after her diagnosis. So, being ignorant, not knowing any better, I assumed that my lifespan was therefore going to be five years.
Now, it turns out, four years later, I’m not likely to die of Alzheimer’s anytime soon. In fact—and I haven’t fully absorbed this yet, and I’m sure we’ll be talking about it—my neurologist recently told me that my most recent MRI is amyloid negative. I was negative for amyloid.
Christy: Meaning, upon MRI, they can find no trace of amyloid plaque in your brain. Correct?
Phil: That’s what he told me. And you know, I said, “Well, I assume there used to be amyloid there, or I wouldn’t have been allowed in the Biogen study.”
He can’t read those things [Phil’s medical records related to the Biogen study], but he said that’s his understanding of what was required to be in study. So, what does that mean? I’ve said many times—
Christy: It’s time to party! That’s what that means!
Phil: Well, you know, I—
Christy: Let’s party because you don’t have amyloid plaque in your brain.
Phil: Well, okay. Yes, but there are other balancing things. I definitely said I feel better. I do the New York Times News Quiz every week, and I score eighty, ninety, a hundred percent regularly, so I’m obviously retaining.
I still don’t have my longer term memories. They’re not coming back. I fear they’re gone. And I have experiences where it’s not just the old ones that are gone, you know, new ones that are created don’t stay. You know, I’ve had those episodes where I go into a different reality, different alternative universe.
And I flatly said to my doctor, “Well, then why do I keep having these things happen?” And he said, “I don’t know. It’s not any neurodegenerative disease that I know of.” So, you know, there’s a lot to be figured out, a lot to be parsed.
And just this week I was running around like—my nephew, we sell, we collect designer toys, and we get a lot of extras, dupes and things like that. So, we sell them online and my nephew had posted—
Christy: For people who have no idea what you’re talking about, dupes means duplicates.
Phil: Yes, duplicates. And my nephew had posted a sales post online. We got bombarded. We got a gazillion orders, and I was trying to figure out, to begin processing all these orders. Because I’m the shipping department.
And at one point, I, you know, I was literally like, I’d sit down at my desk and then I’d go over there [to the shelf] and I couldn’t remember what I was looking for. I’m sure if I was on tape, it would have been really, really funny to watch.
I said to Tim, “Oh yeah, I could hold a job.” It was clear at that moment, I can’t hold a job. Because the pressure would come on and I was a mess. And I used to not be that way. I used to do, I used to balance all these zillions of details and things.
So, it is clear to me that while I definitely feel better, I am not what I used to be. Now, maybe we don’t understand why, and I probably need to go get second and third and fourth MRIs, which you can’t do now. But, I guess to bring it back to my original point, which is—it’ll be a miracle if I remember my original point, after this five minute monologue—there is reason for hope.
And I think that we have to constantly push for hope. I mean, I wrote about this earlier, last year, I guess, about my friend Elaine—we talked about this, I think.
Christy: Yes, we did.
Phil: And she was given, you know, I can’t remember what kind of cancer she had, but a very serious cancer, and this had moved into her brain.
She was given a very short time to live. And she reached out to my sister—we used to be neighbors—and she said, “I’d like to see you before I go.” And we went. And you know, she was remarkable. I mean, her optimism. Okay. Even knowing that she was going to die in a matter of weeks—and she did—her optimism was remarkable.
And I think you have to, you have to remember people like that, things like that. You know, changes like I have experienced, from thinking I have a death sentence, I have five years, to now knowing that—you know, what the doctors tell me is that I could live 20, 30 years. Something else might get me, but it might, it’s probably not going to be Alzheimer’s.
So, I guess you just kind of have to stay positive. Otherwise you just crawl into bed and pull your blankets over your head and say, I’m done. See you later. And I think we’re in a national moment of learning, evolving, changing. Dealing with crisis and learning how to live with that, right. Live with a new reality.
And I think we’re going to do it. And yeah, there’s certainly a lot of really stupid people out there, but they’re not the majority. They’re really not the majority. They make for interesting reading, and you may begin to think they are the majority, but they’re not. They’re really not.
Christy: Yeah. I think it was Governor Cuomo, this morning during his news conference, talking about how NASA figured out a way to get stranded, or potentially stranded, astronauts back to earth 50 years ago. Wasn’t even 50 years ago.
Phil: Yeah. Yeah. Right.
Christy: I was born about five months after the first moon landing, so there has never been a time in my life where I was able to go, Wow, that happened! It’s just more of a, Yeah, of course it happened. But I was about 11 years old, 12 years old, when the space shuttle went into orbit. And for years and years and years, I still had that thing that would come across newsrooms. Is it a telex? Is that what it was called?
Phil: Right. Yeah.
Christy: I had a telex of when it landed, when it came back. I think it landed at Edwards [Air Force Base in California]. That was a BFD. That was almost incomprehensible. And so I absolutely do agree that if Americans can come up with that, you know, we can certainly figure this out.
I mean, I’m not sure really, as far as epidemiology and vaccines and all of that. I know science is involved, but it seems like when you’re talking about space, it’s not just science, but also math. So, if we can figure that out, yes, we can do this.
Phil: If we can figure out GPS, we can figure this out. You ever tried to puzzle out GPS?
Christy: No, because again, math is not, it’s not my bag.
Phil: But just the idea that somehow it knows where I am? I lose my mind when I try to think about it. And it keeps getting better. So, yes, we are going to figure this out. Yeah. None whatsoever. Absolutely. No doubt in my mind.
And we’re gonna figure out a treatment for Alzheimer’s. And maybe a cure. I mean, I think there’s no doubt about it. It’s really complicated, but there are—were—thousands of really smart people working on it.
Christy: Yeah. I think you’re absolutely right. I mean, they just reported two people, I believe both in London, have been cure of AIDS.
Phil: Sure, yup, yup. Yeah.
Christy: Cured! So if we can come up with a cure for—and that may not sound like a lot, but for those of us who are old enough to remember when AIDS was an automatic death sentence—
Phil: And those of us who were gay men living in New York at that time!
Christy: Yeah. Anything’s possible, right?
Phil: Yeah. It took a lot of pain. it didn’t happen as fast as anybody wanted it to happen, but it happened. Getting back to the families who want to visit their loved ones—and we were talking about this yesterday, you know, maybe they can bring their loved ones home for a period of time and rely on some of the folks in the family who don’t have jobs [now], or have more time to help with the caregiving and stuff like that. I don’t know. Again, I’m talking out the side of my head.
I have no idea what the realities of that are, and I understand that some people just can’t be at home without support, but, yeah, maybe that’s a possibility.
Christy: I’m just going to say, for the record—what’s the phrase? Don’t try this at home.
Christy: I am a big proponent of helping families figure out how they can care for their person at home, which is possible all the way through to their last breath. I would just urge anyone who can hear the sound of our voices, please don’t just make a decision like, I’m going to do this. I’m going to go pick up my person right now and bring them home.
Let’s have a conversation instead. Let’s look, let’s walk through all of the moving parts and pieces and what’s necessary so you can be successful. And If you’d like to have that complimentary call with me, book that at DementiaSherpa.com/call. I’m happy to have that conversation with you. But please do not hop into the car right now and just pick up your person without a plan. That is a really bad idea.
Phil: I agree.
Christy: Just wanted to say that for the record. What happened, Phil? I thought we were going to end on a happy, optimistic note.
Phil: That’s not a happy, optimistic note? Maybe there’s not a lot of happy optimism out there right now, but we’ll get there.
Dementia can last 20+ years.
That's a long time to struggle with trial and error!
If you're ready to step out of overwhelm (and anxiety about the future), click the button below now to schedule your complimentary Dementia Caregiver Strategy call with Christy. (Mobile users, click HERE.)
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With Host Christy Turner of Dementia Sherpa (Episodes 79-current)
With Host Mike Good of Together in This (Episodes 1-78)
Mike Good founded The Alzheimer’s Podcast in May 2017. Christy appears as a guest in episodes 15, 19, 21, and 23-26. She became the featured expert on the show starting with episode 28 and appears in every episode after, except 56. When Mike decided to follow his bliss, Christy took over the show in January 2019.
If you have questions or comments for Phil (or me), please let us know! We love hearing from you 🙂