Phil Gutis, our Assistant Sherpa on The Alzheimer’s Podcast, recently talked to me about traveling to his nephew’s graduation and doing a speaking engagement. Phil covered three states in five days.
Quite an Adventure
Christy: Phil, you recently went on a trip which included your nephew’s graduation, and then a speaking engagement. And I would love to hear what your thoughts were about traveling, and of course how the experience was, and if you went alone.
Phil: Well, it was quite an adventure. We drove by car to my nephew’s graduation. He graduated from Miami University in Ohio, and that’s a ten and a half hour drive from where we live here in Pennsylvania.
Christy: That is a long time. Did you do that all in one day, or did you split it up?
Phil: We actually split it up. We were in two separate cars. And we did a first four and a half hours, I think, then stayed in a hotel room. The next day, we did another four and a half hours. Stayed, I think, about an hour on the campus–there’s very little there, at the campus.
“I was pretty proud of myself.”
And then got out of that hotel room. On Saturday, we went to graduation. We stayed in the dorms one night. Left on Sunday after all the graduation festivities. Stayed in a hotel room. And then on Monday, when we got back Pennsylvania, I jumped in the car and drove to Wilmington, which is about an hour and a half. Not including my getting lost.
So this is the longest drive I’ve done by myself in quite some time. Checked into another hotel room. Tuesday, I went and did my speech in the morning. Gave my little talk. Drove home and then literally crawled into bed and slept all day. There was not a thing left of me. Nothing. Absolutely nothing.
Christy: You packed a lot into a short period of time.
Phil: I did. I was pretty proud of myself.
Environment: Too Hot
Phil: I lost it twice. Three times, I guess. Three times, it’s fair to say. During the weekend commencement activities. Once was the outdoor big university graduation where everybody gathers. It was outside and it was so freaking hot and the sun was brutal and I just couldn’t take it. So I went and hid and tried to find shade. So I count that as my first “losing it.”
Christy: Well, hold on. Why do you count that as losing it? Because that just sounds like good common sense: get out of the sun.
“I lost it twice. Three times, I guess. Three times, it’s fair to say.”
Phil: Yeah, I couldn’t handle it. The same thing happened to me on the [Inaugural Building Bridges of Hope & Connecting Circles of Care] cruise. I used to be able to handle the sun.
Christy: Are you talking about the day that we were in The Bahamas and you kind of turned inward and needed some shade?
Phil: Yeah, on the private island in The Bahamas. I just can’t handle it and, you know, it used to be it wasn’t a big deal. But this notion that I’m going to have an episode if I can’t get out [of] the sun, that is definitely new. And that happened on the commencement, the big commencement.
Looking for That Goldilocks Moment
Christy: One of the things I and other professionals talk about a lot is how important the environment is for the comfort of people living with neurodegenerative conditions.
We can see people start to show us through their actions that they’re not comfortable if the environment is too hot or too cold, too loud; not enough going on or too much going on. It’s like looking for that Goldilocks moment, which is actually pretty wide. It’s not like the sun, moon, and stars have to be perfectly aligned.
This story illustrates perfectly that things that others could talk themselves through, gritting their teeth and thinking, It’s really, really hot. I’m sweating profusely. This sucks. I hope I don’t get sunstroke. I’m probably dehydrated.
You’re at a place where you’re either unable to do that self-soothing, is one way to look at it.
Or, flip it around and say that you’re able to essentially skip right past that nonsense self-talk, of talking yourself out of following through with a good idea. Instead, you’re able to just say, This isn’t going to work for me, and move into a different situation.
“Just knowing that the breaking point is nearing helps me know I just need to get out.”
Phil: Right. Those triggers definitely get me. And just knowing that the breaking point is nearing helps me know I just need to get out.
I just turned to my sister and said, “It’s too hot and I can’t take this. I’ll be in the shade someplace.” I could still hear the ceremony because it was being broadcast. But I just couldn’t watch it.
And it is funny, my nephew from way down below on the field looked up and saw I wasn’t there and wondered what happened. And I just said to him, “You know, there’s just some things I can’t handle.”
The Environment: Too Crowded
Phil: And he was very attuned to what was going on in my mind. He could see when I was starting to lose it. Like the morning right before the big commencement, we went to grab some breakfast at this campus favorite place. I can’t remember the name.
This bagel place that they have every crazy kind of bagel combination sandwich you could imagine. And I had a Crunch and Munch, which was a bagel with…I can’t remember what else was on it. But it was covered in potato chips, you know, crunched up potato chips. It was quite delicious.
“You’re not comfortable here, are you?”
But it was packed in there. Packed. A small place, and everyone on campus was trying to get a bagel. And Ethan looked at me and said, “You’re not comfortable here, are you?”
And I was like, “No, this is a lot.” And we went out and got a table as soon as we ordered. But the one time I really did lose it, we were at another, we went to three different ceremonies ’cause he was in the university-wide one, his major, and then his co-major.
So three different ceremonies. And the second ceremony, it was indoors. So that wasn’t a problem, but I’m sure I was tired and it just got to me.
Phil: All of a sudden, I felt my leg just start shaking, you know, like, like uncontrollably, like up and down, up and down, up and down, up and down. And I couldn’t stop it.
Even my sister noticed that. She could tell something was wrong. After the ceremony, we got up and we walked out and we walked into this hall and it was packed full of people. Packed. And I started to cry. And I just said, “I can’t do this. I can’t do this.” And I went outside. I told her, “I’m gonna be outside. I can’t, I can’t handle this.”
“And I just, I was done. I was done. Done. Done.”
And Ethan came and found me and told me how much he appreciated me coming and gave me one of the stoles, you know, they wear around their shoulders and said, “This is supposed to be supposed be, you’re supposed to give this to a person who you have gratitude toward,” and he gave it to me and wrapped it around me and calmed me down.
And then the rest of the time I was okay. But that, that was the worst, you know? And it was really, just probably being tired and then overwhelmed from all the travel and the packing and unpacking and the packing and the unpacking.
And just walking into that hall, was just…it felt like thousands. It was probably high hundreds.
Christy: That’s still a lot of people.
Phil: And just the noise, of course. The chatter. [Makes background chattering noise.] And I just, I was done. I was done. Done. Done.
This Meant a Great Deal
Christy: And multiple changes of environment along the way there, too.
Phil: Yep, yep, yep. I knew you were gonnna go there. Yep. And talking about consistency. I mean, all in all, I was quite proud of myself. I mean, it was a big deal, right?
“I’m puting on my big boy pants and I’m going!”
And probably if I had not been on my anxiety medication, I wouldn’t have been able to do it. You know, just the thought of doing it probably would have caused me to flip out and back out. But I never made it to campus in the four years he was there. I knew this meant a great deal to him, for me to be there. So I was like, I’m puting on my big boy pants and I’m going!
And you know it was funny, my sister told me we were going to three ceremonies. And I was like, “Three ceremonies?!”
And then as we’re on our way out, my sister was like, “Yeah, and then we have this dinner at the frat house and brunch the next day at the frat house.”
And I looked at her–probably a death glare–and I said, “You didn’t say anything to me about dinner and brunch at the frat house.”
She goes, “I know!” She was tending what she was telling me. But those were actually fine. They were well organized.
I Need to Disappear for a While
Christy: Did you at any point did you think, Okay I’m going to skip this particular thing?
Phil: We really couldn’t because we weren’t in any one place, ever. It wasn’t like you could go crawl into a hole. I mean, after one of the ceremonies, I don’t remember what everyone else was doing, but I said to them, “I need to go nap. I need to go disappear for a while.”
“I can’t wait to forget this trip.”
And you know, my nephew said, “Well, if you can get up into my bunk bed, you can hang out there. And I managed to get there and just kind of holding my breath and going, Okay, just drop.
But that was really the only time I really felt like I needed to. I mean, I was sleeping in the car. I definitely would curl up on the back seat, just let the hours go by there. So there was definite down time that way, where I needed that.
But it was definitely one of those “making memories while you still can” kind of things. It was important to him, it was important to me, it was important to my sister that I be there. And I did it.
Although I did joke several times on the way there that I can’t wait to forget this trip. Because that’s a long time in a car. It’s a long time in a car.
What About Tim?
Christy: Tim went with you?
Phil: He did not. He was up to his eyeballs in dogs.
Christy: So who did you go with? You and your sister went to Ohio together?
Phil: Yeah, we were in the car together. And her husband was driving [also]. And then my two nieces were also with us. We drove two cars out and three cars back because Ethan was graduating and all his stuff had to come back.
“Well, I mean, Tim is very attuned to me. And we’ve talked about this; Tim is attuned almost to an extreme.”
Christy: So even in the car, that was dramatically different than if it had been you and Tim. And I say that not just because it’s always different when it’s just you and your spouse; that’s kind of a different universe than with other people in the family.
But also because, I’ve had the chance to spend time with Tim and he has such a calming presence. Almost a California surfer vibe of just like, It’s all good. And he has this rich voice where he could be a DJ.
So I was wondering with some of the things you’ve described, And where was Tim in this? So Tim wasn’t in this; he was working.
Phil: Right. Tim was taking care of our pets and everyone else’s in town pets.
A Sense of Accomplishment
Christy: Do you feel it would have been different if Tim had been with you? Or do you think because of the amount of activities you were going to do that it wouldn’t have made a difference?
Phil: I don’t think it would’ve…Well, I mean, Tim is very attuned to me. And we’ve talked about this; Tim is attuned almost to an extreme. So he would have, like with the sun, he would have gone with me, sat with me, found me shade. Whereas I was more on my own.
“Throughout the entire trip, there was a sense of accomplishment.”
Christy: Do you feel that because you were in a position then where you needed to kind of look out for yourself, did that create a sense of anxiety? Or accomplishment? Or both?
Phil: A little of both, I think. Throughout the entire trip, there was a sense of accomplishment. There was definitely moments of giving in to the anxiety, but overall I felt very proud of myself. Proud that I agreed to do the trip, did it.
And then, we haven’t gotten there yet, but this speaking thing came up at the last minute. Somebody had fallen through. They really need somebody to speak at the [Alzheimer’s Association] Reason to Hope breakfast. And I had spoken at one previously, so I had the presentation and everything.
So when they were like, “Could you do this, please?” I was like, “Oh, boy!” The timing couldn’t have been any worse. I literally have not driven that far in years, by myself.
A Good Strategy Going In
Christy: So you had one night at home after graduation, you came home, you had one night at home and then you were off on the road again the next morning?
Phil: No, I didn’t have a night at home. Got to my sister’s, and jumped in the car and drove to Wilmington, Delaware. And then spent the night in a hotel and then came home the next morning.
I mean, I could’ve gone home and stayed and then driven the next morning straight to the breakfast, but that’s rush hour traffic, going down toward Philadelphia. And I knew I couldn’t do that. It was definitely either stay the night overnight in Wilmington or not do it.
Christy: So, you had a good strategy going in.
“You know what? This is really stupid. Pull over. Get gas. Pull yourself together. Finish the call, and then go on your way.”
Phil: Yeah, I had a strategy. But the GPS took me some way, I just had no idea what it was doing. It was not an easy way to go.
And I was also on a call. A walk-through call for the event. While I was driving. And I desperately needed gas. I was like down to nothing. So, all these things are happening. And I finally got lost. I took the wrong turn. And I just said, You know what? This is really stupid. Pull over. Get gas. Pull yourself together. Finish the call, and then go on your way.
It was an interesting realization, because I’ve been terrified of driving in traffic but I have to say that versus what I was doing, which was going at speed and needing to change from one high speed highway to another high speed highway, and follow these instructions on GPS, traffic would’ve been better.
Because it’s slow. Oh, traffic might be my friend! It’ll take a bit longer, but it won’t be as stressful. So, maybe I shouldn’t be worried about driving in rush hour traffic because I’ll be going slow.
Two Doubletrees in Wilmington!
Phil: So, I get to the hotel. Wilmington, Delaware is not a big place. It’s the capital of Delaware, but it’s not a big place.
And they told me to go to the Doubletree Hotel. I type in the Doubletree Hotel to my GPS. Did you know that there are two Doubletree hotels in Wilmington?
Christy: Let me guess. You picked the wrong one.
“At this point, smoke’s beginning to come out my ears. I’m ready to kill someone.”
Phil: Of course. Of course! Get there, go into the parking garage, get the suitcase, and they’re, “You don’t have a reservation.”
At this point, smoke’s beginning to come out my ears. I’m ready to kill someone. The lady said, “You know there’s two Doubletree hotels in Wilmington?”
“Yeah, I didn’t know that.”
She called. She goes, “Yeah, you’re at the other one.”
Okay, you know, pull myself together again, take the little suitcase outside again, pay for parking, because of course had to pay for parking anyway.
It Felt Like the Old Days
Phil: Got on the road again. Now we’re very much in rush hour traffic in Delaware, in Wilmington. Everybody’s out from work and leaving, and trying to find this other hotel.
And finally I get there and I’m just like, You’re in another hotel room. Okay.
“It felt like the old days, actually. It felt like Phil The Road Warrior, you know, making his way through.”
And I went downstairs and I got myself something to eat, very proud of myself. Just sat there with my little iPad, had myself some nice dinner. Went upstairs, went to bed. No, I didn’t. ‘Cause I had to print out my speech because it had to change, of course.
So I had to find a printer and all that stuff. But it felt like the old days, actually. It felt like, Phil The Road Warrior, you know, making his way through.
And did the speech, cried of course. Watched a video, cried. Heard another story, cried during that story. And just had to get in the car and drive another 90 minutes home.
And I did it. Got here [home] and literally that was it. I just, I think I literally just slept straight through. I mean, there were a couple of moments where I would get up for an hour and just say, “I’m exhausted,” and went back to bed.
The Next Day
Christy: How did you feel the next day?
Phil: Tired. Very, very tired. Tuesday, I was supposed to row when I got home and I was like, I can’t do that. And Wednesday I was going to row and I just said, You know, I don’t have it in me. And you know, I just stayed home and tried to reemerge into the world, slowly but surely.
Christy: It sounds like it was a butt-kicker.
Phil: It really was, but good.
Living with Alzheimer’s
Phil: It gets to this point, you know, living with Alzheimer’s. Yeah, we’ve definitely talked about this.
Christy: We have, and I think it bears repeating. Because everything you’ve described is exactly that.
“Just keep doing as much as you can.”
Phil: It’s so easy to give in to the depression, the anxiety, the sadness. And we constantly have to–well, you don’t have to; you can just be sad. It’s understandable. It’s okay to be sad.
But I think it’s so important that those of us living with Alzheimer’s or other brain illnesses don’t give into that, and just push as hard as we can. Now, understand where the limits are and what we need to do to protect ourselves, but to just keep pushing.
I’m not even talking like an advocacy role, although that’s obviously very important to me. I’m just talking about life. Just keep doing as much as you can.
Dementia can last for up to 20 years or more. That's a long time to fly by the seat of your pants, struggling through trial and error! If you're ready to step into the life you and your loved one deserve, schedule your complimentary Dementia Caregiver Strategy call with Christy.