Episode Transcript
[00:00:10] Speaker A: Welcome back to Louie Body and Mindful Caregiving. I'm Crystal Jakowski, your host, and thanks.
[00:00:15] Speaker B: For tuning in and coming back today is my update on how travel went and where I was at and what happened with mom.
[00:00:28] Speaker A: Before I dive into that, I want to talk about self care and tell you that my self care was allowing.
[00:00:35] Speaker B: Myself to cry and feel the feelings.
[00:00:38] Speaker A: And I'll explain that to you. And then I also got a massage from my favorite massage therapist who helps to move the energy because I believe that we can get our energy and our emotions stuck within the muscles of our body. I'm a massage therapist and so I have this wonderful guy who knows how to do very pointed, like, pressure point and deep tissue and really help you release what's going on. And so I scheduled a massage with him.
[00:01:12] Speaker B: So that's the self care I did.
[00:01:15] Speaker A: And I hope that you have done some as well in the last week.
[00:01:18] Speaker B: So that you could really improve your.
[00:01:22] Speaker A: State of being and be okay, or more okay than you would have if.
[00:01:26] Speaker B: You would be if you hadn't done it.
[00:01:30] Speaker A: Last week I talked about preparation for travel and we were getting ready to go on an eleven day journey to Switzerland and the challenges of leading up to that and how I needed to prepare for her sleep situation to make sure that she was sleeping well so that she would be more lucid. Because sleep is kind of the.
[00:01:56] Speaker B: Focal.
[00:01:56] Speaker A: Point and the grounding of if she sleeps well, then she comes through even better. And so making sure that that environment was conducive was huge.
Knowing your person before you travel is huge. And going through all of the possibilities, like, is there a point where we would need to fly home because she simply cannot function anymore if she ends up in the hospital? Do we have enough medications? Do we have the paperwork that we need? Are the rules different in a different country than they are here in America? Would the paperwork that I have for her being her medical POA and stuff actually be valid over wherever we're just, there are a myriad of thoughts and things that you have to work through.
[00:02:46] Speaker B: And then there's the time on your.
[00:02:49] Speaker A: Vacation, wherever you're going in the travel, whether it's a vacation or for family or whatever is going on. And then there's the aftermath.
[00:02:57] Speaker B: Now we had worked through as many.
[00:03:01] Speaker A: Contingency plans as we could possibly think of. We had a guide every day, so we already had things planned, but we didn't have to navigate how to get there. The guide took care of that and we had a wheelchair everywhere we went. We tried to plan this trip back.
[00:03:22] Speaker B: In 2020 and it was a surprise.
[00:03:26] Speaker A: Because planning the trip in 2020, there were a lot of walking tours and at the time my mom was really trying to get in at least 10,000 steps a day. So walking tours seemed pretty doable. And this is year three. Last year my mom and my husband both had herniated discs and so we had to cancel it then. And of course the year before was COVID.
[00:03:49] Speaker B: So this year we really got to go.
[00:03:51] Speaker A: And when we looked at the itinerary, we recognized that there were a ton of walking tours.
[00:03:55] Speaker B: And she has declined enough that there was no way that she could do the walking tours where she used to.
[00:04:05] Speaker A: Be getting 10,000 steps a day, now.
[00:04:08] Speaker B: She might get 1000 502,000.
[00:04:14] Speaker A: I mean, she's really way more sedentary. And when she walks a lot, her.
[00:04:18] Speaker B: Hips start to hurt and she feels.
[00:04:22] Speaker A: Really weak and she starts to walk crooked. And I mean, we were really surprised at how much in the last three years that she had declined to the point where we couldn't do that. Now, before I dive too much into the experience, I want to remind you of our state, our status. My mom lives 100ft out my back door. My mom, as long as she is in her own routine, her own space.
[00:04:49] Speaker B: Her own house, she's about 75% self sufficient.
[00:04:55] Speaker A: As long as she's in her own.
[00:04:56] Speaker B: Space.
[00:04:59] Speaker A: Her routine is everything. And that is the case with these loved ones of ours. That routine is so immensely important. And without the routine, they are more forgetful, more confused. They might have more hallucinations, they may have psychosis, you may have heard of hospital psychosis, where they see different hallucinations and are really confused and might get.
[00:05:21] Speaker B: Really angry or emotional and lash out more.
But when she's in her own routine.
[00:05:29] Speaker A: Her own space, my mom is great as far as personal hygiene, going to the bathroom, taking a shower. She can do her own laundry, she can change her bed, she can get her own food, meaning she can heat it up or grab something out of the fridge or little snacks and whatnot. She answers her own emails and she can order food from instacart. She's fairly self sufficient in that way.
In the other 25%, she can't drive. She needs help. While she can take the meds daily. I need to go over there every Saturday and make sure that I help, make sure that the right medications are in the right slots, because she has one that's got all seven days and each day has four slots for when you first wake up and then midday and then evening, and then when she goes to bed.
[00:06:23] Speaker B: And she's able to take those meds.
[00:06:25] Speaker A: At the right time, but she can't put them in the right containers. So I need to do that. I have to go to her doctor's appointments because she doesn't understand everything that the doctor is saying and she'll get confused or she won't be honest with what's really going on. The doctor will ask a question and mom will skirt the issue. The doctor will say, Are you taking this medication? And mom will say, well, I have it.
And the doctor will go, oh, okay. Not knowing that just because I have it doesn't mean that she's actually taking it.
So finances, I have to watch over her finances because she doesn't have good judgment and would blow through them. So she has a certain amount, and I make sure that.
[00:07:12] Speaker B: I'm aware of.
[00:07:13] Speaker A: What is going on, even if she's not aware of what's going on. When it comes to paying some of her bills, I'm the one that needs to make sure that that happens.
[00:07:22] Speaker B: Some social things, there are just a.
[00:07:26] Speaker A: Decent amount of there's that 25% that she needs help with. So when we're here at home, I.
[00:07:33] Speaker B: Might text her and talk to her.
[00:07:36] Speaker A: On the phone, but I don't necessarily see her every day because I want.
[00:07:40] Speaker B: Her to feel like she has that autonomy. I'm keeping an eye on her, and.
[00:07:44] Speaker A: I'm touching base, but I'm not necessarily in her realm. Yet I know that the day will come, and yet not yet.
[00:07:53] Speaker B: So this trip, she was in a room adjoining ours.
[00:07:59] Speaker A: And for some reason, it's important for you to know that there's a difference between adjoining and rooms that are next to each other. Adjoining means there's a door between the two rooms so that you can walk through that door instead of having to go out your room into another room. And it was important that we worked on getting adjoining rooms, because that way she knew that I was right there and she wouldn't get confused.
[00:08:25] Speaker B: Because a hallway just has a bunch of doors that all look the same.
[00:08:30] Speaker A: And she wouldn't know which door was actually mine unless we were right next to each other.
[00:08:35] Speaker B: Or so.
[00:08:41] Speaker A: Through everything my mom largely did.
[00:08:44] Speaker B: Okay.
[00:08:44] Speaker A: There were moments that she was confused. We were in a foreign country. She had always wanted to see the.
[00:08:49] Speaker B: Castle Shalom in Switzerland.
[00:08:52] Speaker A: So that was kind of the highlight of the trip, the focal point of the trip. And we got to go to multiple different chocolate factories, and we saw castles and cathedrals and had delicious food. Some of it she'd never tried before, and she was a real trooper in trying new food. While I still looked for the normal stuff that my mom would be more comfortable with.
She had about 4 hours a day.
[00:09:19] Speaker B: In her, and some of that I.
[00:09:22] Speaker A: Would be soothing her, and some of that I would just be navigating her here and there. Always either we were pushing her in a wheelchair or she was on my arm. As close to me as she could be.
I would interpret for her.
[00:09:38] Speaker B: I would help her understand where we.
[00:09:40] Speaker A: Were going and remind her of what we were doing.
[00:09:46] Speaker B: You're on.
[00:09:47] Speaker A: Twenty four seven. And like I said before, when she's here, I'm not necessarily like, mentally, I'm on because I'm constantly wondering, is she okay? Does she need anything? If she tells me that something's off, then my brain starts processing what needs to happen. I'm always thinking about her doctor's appointment, but mentally, being on and physically being present can be two different things.
And being in such close proximity for.
[00:10:16] Speaker B: Eleven days, there were things that I noticed and behaviors that I saw that were like, I wouldn't notice them if.
[00:10:28] Speaker A: I wasn't in that close proximity.
[00:10:30] Speaker B: That made me think, well, that's different.
Okay, well, I'll just keep an eye on that. Well, that's weird.
I'll keep an eye on that.
[00:10:45] Speaker A: She has medication induced diabetes, and that means that we have been working on getting medications to balance that out. And the entire trip, that means that I'm helping her. Like, I am constantly reminding her to check her numbers. And then how do you adjust that and how do you fix that the whole trip?
[00:11:04] Speaker B: And emotionally, I did really good until about the night of the 8th day.
[00:11:11] Speaker A: And the morning of the 9th day.
[00:11:13] Speaker B: And at that point, I cried myself.
[00:11:17] Speaker A: To sleep because I was so exhausted.
[00:11:21] Speaker B: And so not frustrated.
[00:11:24] Speaker A: Frustrated is the wrong word.
[00:11:27] Speaker B: Just tired and sad.
And the morning of the 9th day, it was the same conversation in the.
[00:11:41] Speaker A: Morning that we had had every other.
[00:11:43] Speaker B: Morning and the same questions.
[00:11:47] Speaker A: And I really had to rein myself in because I wanted to snap at her. I wanted to just.
[00:11:58] Speaker B: Kind of have.
[00:11:58] Speaker A: A little outburst and express what I was thinking. And the problem with that is that we still had three days to go.
[00:12:05] Speaker B: And if I had popped my top.
[00:12:09] Speaker A: For a moment, then she would have felt like a burden. She would have gone into her shell, and the trip would have ended on a very sad note because she would have said, no, I just want to stay in my hotel room, and I don't really want to be around you, because she wouldn't trust me and she would feel afraid of me. So I had to give myself a moment, let my husband step forth a little bit and let me step back just for that moment while I was breathing. And I ended up journaling in my laptop. I had taken it with me so that I could do a little bit of work and respond to some stuff.
[00:12:46] Speaker B: And it came in most invaluable because.
[00:12:50] Speaker A: I was able to journal and work through it. And as I journaled and worked through my frustrations, through my writing, I was able to come back to the remember, if you're treating her like she has a normal brain, stop it.
[00:13:07] Speaker B: That it's not her, it's the disease.
That she's not intentionally being difficult.
She literally can't figure it out.
[00:13:20] Speaker A: She doesn't know, and that's difficult for her. She's totally unaware.
[00:13:28] Speaker B: And you've got this, like, you really actually have this crystal and take a breath.
[00:13:36] Speaker A: So after my journaling, we went on our outings for the day, and I was able to finish out the rest of the tour, the rest of the vacation, the last three days without much of a problem.
[00:13:49] Speaker B: Then we came home, and it's a nine hour flight. And I'm going to tell you that.
[00:13:58] Speaker A: I was super emotional for four days. I was tired and irritable and frustrated, and it was the emotional letdown from having been on for so long.
[00:14:10] Speaker B: It was me mourning the loss of.
[00:14:14] Speaker A: My ignorance, meaning that those things that I noticed while we were on vacation.
[00:14:21] Speaker B: They can't be unseen and so.
[00:14:27] Speaker A: Unknown. So you know that she's declining and you know that this really is real and you can't pretend anymore. One of the sad things is that, yes, she lives 100ft out my back.
[00:14:40] Speaker B: Door, but the fact that I give.
[00:14:43] Speaker A: Myself a little bit of space and give myself a little bit of a break means that on occasion, I can pretend like that's not happening, pretend like.
[00:14:52] Speaker B: She'S not failing and declining. And when you see it 24/7, it's.
[00:15:01] Speaker A: Like, no, this is reality, so stop diluting yourself. Stop lying to yourself. And.
[00:15:13] Speaker B: Sometimes it's ignorance is bliss, and.
[00:15:16] Speaker A: It'S nice to pretend like it's not that big of a deal, because that way you can breathe a little easier.
[00:15:23] Speaker B: And so I needed to cry.
[00:15:25] Speaker A: I needed to mourn, I needed to process.
[00:15:28] Speaker B: But that also meant, like, I was.
[00:15:31] Speaker A: Helping her with her diabetes while we.
[00:15:33] Speaker B: Were on this trip. And when we came home, I'm not willing to be there 24.
[00:15:42] Speaker A: Like, I'm not willing to go out there right now. I don't have the ability to go out and be there for every single meal and make sure that she's not sneaking the sweet treats and make sure.
[00:15:53] Speaker B: That she's not eating in a way.
[00:15:56] Speaker A: That I don't agree with eating in a way that is not going to support healthy with the diabetes. And so I had to really.
[00:16:07] Speaker B: Mourn.
[00:16:08] Speaker A: And allow myself to be angry with.
[00:16:11] Speaker B: The fact that this is a treatable disease, and yet it's not working.
[00:16:18] Speaker A: I have to allow her to make those choices, and her taste buds are failing, and the last taste bud to go is sweets. And when you have diabetes.
[00:16:30] Speaker B: That makes it a challenge. And while I might be able to have a conversation with her, that doesn't mean she'll remember the conversation later the next day, a week down the road. It just means that I have to let her eat and exist the way she wants to.
[00:16:52] Speaker A: She's dying. So do I want to force her to eat healthy stuff that she doesn't really like? Or do I want to allow her to eat the things that bring her joy? And I know that there's a balance somewhere in there, and I will work on that.
[00:17:05] Speaker B: But for the last three days, I've.
[00:17:08] Speaker A: Been working through my emotions four days, I've been working through my emotions on how that looks and how that feels.
[00:17:14] Speaker B: And maybe I did a disservice by.
[00:17:17] Speaker A: Not coming and podcasting while I was in those depths of despair and upset and emotional turmoil.
And yet I don't think that this podcast would have been as coherent and.
[00:17:31] Speaker B: Fluid had I come to you in the throes of my upset.
[00:17:41] Speaker A: Instead, I reached out to my support.
[00:17:45] Speaker B: And sought out advice and worked through.
[00:17:50] Speaker A: It that way so that I could.
[00:17:51] Speaker B: Come to you objectively today and help.
[00:17:55] Speaker A: You understand where I was at. Now before going on vacation. My digestion was way off, my intestines were really pissed off, I was gassy and bloated and maybe TMI, but that's the way it was. And I was dealing with symptoms of an ulcer and I wasn't sleeping very well and I was super stressed out.
[00:18:20] Speaker B: The physical manifestations of the stress that.
[00:18:24] Speaker A: I kept saying, no, it's okay, I've made my contingency plans, I'm okay.
Even though I wanted to believe that the stress wasn't there, the physical manifestations were absolutely there. Post the trip, I'm very grateful that.
[00:18:38] Speaker B: It went so well.
[00:18:39] Speaker A: I'm very grateful that it was such a good, positive experience and that she got to see so many wonderful things. I'm really proud of myself for not snapping and popping my top at her so that we could finish that trip and let her have this wonderful opportunity. While we were gone, I took little videos and snippets and sent them to my siblings so that they could see what we were doing and they could see how she was doing. And in the same aspect I took lots of pictures so that I can put them on her little frame, her.
[00:19:11] Speaker B: Aura frame, and then she can see.
[00:19:14] Speaker A: Them and remember the great time that we had while we were gone.
[00:19:18] Speaker B: So I did a lot of things.
[00:19:20] Speaker A: On her behalf and I did a lot of things on my behalf and after having been on for eleven days.
[00:19:25] Speaker B: It was really nice to allow myself.
[00:19:29] Speaker A: To feel the emotions and then give myself self care. And the beautiful thing is that now my brother comes into town and I will have the additional opportunity to breathe.
[00:19:42] Speaker B: To let them give her extra love.
[00:19:47] Speaker A: And support, which lets me step back.
[00:19:49] Speaker B: And do even more self care and maybe catch up on some of the.
[00:19:56] Speaker A: Things that I haven't been doing because I didn't have the bandwidth. So.
[00:20:02] Speaker B: Travel can be.
[00:20:07] Speaker A: A huge challenge.
[00:20:09] Speaker B: And we'll see how things go as.
[00:20:12] Speaker A: We keep moving down the line. She has siblings in Utah and they get together twice a year for sibling birthdays, which means that I will be going to Utah twice a year so.
[00:20:25] Speaker B: That I can chaperone her as she.
[00:20:29] Speaker A: Travels because she can't travel alone. And we'll see how that shifts and changes over time and what new things.
[00:20:38] Speaker B: She needs and what new support I'll.
[00:20:41] Speaker A: Need as we travel.
[00:20:43] Speaker B: So I think that's all I have.
[00:20:46] Speaker A: To say for today.
[00:20:51] Speaker B: I think that my tips and highlights are the if you're treating them like they have a normal brain, stop it.
And building in the opportunities for yourself.
[00:21:06] Speaker A: To have support, to have a break.
[00:21:09] Speaker B: And doing everything you can in your power to ensure a successful trip by recognizing what your person needs, planning for.
[00:21:22] Speaker A: That, and then planning for the different possibilities. If they decline in this way while we're on the trip, how are we going to respond? If they decline this far, how are we going to respond?
[00:21:35] Speaker B: If they really go off the deep.
[00:21:38] Speaker A: End, how will we respond and what will we do? Who can we pull in? What support systems can we give ourselves and them while we're on this trip?
Because the more support you give yourself.
[00:21:54] Speaker B: The better able you are to support.
[00:21:57] Speaker A: Your loved one as you're on this vacation. And one last thing if you're going on vacation and this is the trip that they have wanted.
[00:22:13] Speaker B: I went into this trip knowing that it was a trip for her, not a trip for me. So doing so meant that if there was something that there was never something.
[00:22:26] Speaker A: That I really, really wanted to see and had to miss out on because she was unable to go, there was no way I could leave her alone in the hotel room because she could get scared and confused and upset. So I needed to keep in mind that this was a trip for her and that while there might be some things that I would like to see, I needed to be mentally okay with the idea that I wouldn't get to.
[00:22:51] Speaker B: See them because this is about them.
[00:22:53] Speaker A: And their safety and their health more.
[00:22:57] Speaker B: Than it is about you and what you want.
I hope you have a fabulous week.
[00:23:03] Speaker A: Thank you for listening, and I pray that you have some fantastic health or self care to report on as you.
[00:23:11] Speaker B: Continue moving forward until next time you close.
