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E18: Back With BHG
0 Playsin 5 minutes
A few things have changed since we recorded this, and we’ll be back with a new update in our next episode, but this episode gives you another glance into the life of our mom, the primary care giver. Where the three of us get to “escape” to a version of regular life when we leave Boston, our mom is living this experience real time, every day. We are so in awe of her and always love to hear her perspective on everything from being an advocate, to being a partner, to being the world’s greatest mom.
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Transcript
Catch-up and Introductions
00:00:05
Speaker
Hi, guys. Hi, Lucy. Hi, so fun to be here in the the Boston stewed kind of stewed. There's no D, just stew. Oh, stew. Like stew Leonard's, but stew D-O. so today, what are we talking about today, girlfriend?
00:00:24
Speaker
Is that me or that's you? Your girlfriend both my
Challenges of Caregiving
00:00:27
Speaker
girlfriend. Your girlfriend. Because you call us girlfriend. Well, I think now that you have me, because I haven't been on since we were on vacation over the...
00:00:36
Speaker
Christmas break. Hanukkah break. Yeah. um i I think I didn't feel so much like a caregiver then, but I have certainly felt like a caregiver over the last two months.
00:00:48
Speaker
um And so maybe we should talk about that. Yeah, sure. Okay. So why let's get into it. What's been going on? Well, um your ah your dad has not been able to walk ah since...
00:01:01
Speaker
April, you saw that in action when you guys were here over Boston Marathon slash Easter weekend in April. um I think the day after you guys left, ah so the day after the marathon, we were in the mean in the emergency room all day and he just couldn't walk and he was in so much pain.
00:01:22
Speaker
He had had some cortisone shots in his back. He's been dealing with this sciatica issue for years, but it just hadn't gone away. And it got so bad that We said, okay, we should go to the emergency room. And so ever since then, really, in order for him to leave the house, and he i don't think he left the house for like almost a month um because he couldn't walk.
00:01:42
Speaker
So we would need to go anywhere in a wheelchair. And so he did finally say, okay, like I'll do that. And we borrowed a wheelchair from a friend.
Mobility and Recovery Post-Surgery
00:01:52
Speaker
And I wheeled him to the Esplanade, ah to our favorite beer garden called Night Shift.
00:02:00
Speaker
I wheeled him up Beacon Hill, literally up the hill. It's like a workout. It was a total workout. It was like one of those sleds in, you know, pure performance. Were you worried that, i don't know if everyone's to understand pure performance sled, like a gym. ah um it Were you worried that you were going to like slip and he was going to go flying backwards at any point?
00:02:20
Speaker
Only when we were going down. Yes, that was my question. yeah She's explaining going up and I'm like, what did you do going down? Because preference, Breacon, sorry, Beacon Hill is like quite steep. It's like a black diamond hill.
00:02:34
Speaker
Yeah, people actually do go skiing if it hadn't been plowed. People, skiers, and they'll do a little slalom down the street before it's been plowed. um Wait, how how would they slalom again?
00:02:47
Speaker
Cool. um We did um go to Mass General once in the wheelchair and trying to do that. on the bricks of Charles st street was interesting. Um, so anyway, it was definitely a struggle and he really couldn't do anything. Um, so, uh, we had an MRI of his spine and everything looked like there was a lot of issues in there. So we finally got to a spinal surgeon who did not initially recommend, um, surgery because of everything else that's been going on in his brain.
00:03:22
Speaker
And then when they did another spinal MRI, rolled out any any GBM that may have gotten into his spinal fluid and created issues in the back that way, the spinal surgeon did say, yeah, let's see you next week.
00:03:35
Speaker
So that was last Wednesday. It's Wednesday today. So a month, sorry, a week later, i do that all the time, um a
Emotional and Mental Struggles of Recovery
00:03:43
Speaker
week post-op. And um he's walking with a cane. He's standing straight.
00:03:49
Speaker
Super straight. He looks so much taller. Looks so much taller. We know it was the right decision. It just is still hard to be in that same, like you've now been without a walking husband for a couple of months.
00:04:00
Speaker
A couple months. And now post-op is anyone who's had a major surgery. i mean, he's got 11 staples in his back. So thought 12. No, 11. No, she picked one out this morning. cool No, did not. It was tough. I mean, we we, the two of us slept down in the lower level, which had a bathroom right there. We had lots of medical equipment to help.
00:04:19
Speaker
with things um throughout the night, but it was a tough couple nights, but you guys were all here, including Emma and Lucy, sorry, including Lucy and Will. And, um and it was great. it It was so helpful for me. um And I have realized that I need all the patients in the world right now.
00:04:38
Speaker
um Your dad. Patients, not patients. Yes. Not another patient. No, you don't need another patient. um Becky's infirmary, open for duty. Your dad is not,
00:04:49
Speaker
a great patient and he'll be the first one to say, ah he's extremely frustrated and you, you can understand this cause he's been in dire pain for two months. So now it's post-op pain. So it's a little different.
00:05:03
Speaker
Um, it's still pain. It's still pain, but he did walk home from MGH yesterday. we went out to dinner. He went, he walked home ah ah through the public garden, um, after dinner and he hadn't been in the public garden for the last five
Family Support and Caregiving Dynamics
00:05:18
Speaker
weeks. So,
00:05:19
Speaker
um So again, it it i have certainly felt like a caregiver these past two months. You have been one. Yeah, but it has had nothing to do with GBM.
00:05:30
Speaker
So we're hoping to have um you know to have the yuck in the background. um Which yuck? Just all the yuck of not being able to walk, not being able to walk. The royal yuck. The royal yuck.
00:05:45
Speaker
And now it just continues to be a mind fuck, which rhymes with yuck, kind of, um because it's still this, is it the anesthesia or is it a little bit of GBM? is it you know Is he so tired, he's sleeping right now, we can we're looking at him right now.
00:06:02
Speaker
um ah Is that the GBM or is it he's still so exhausted from the pain and- The drugs. And the drugs, yes. ah His anti-seizure drugs make him fatigued.
00:06:14
Speaker
The Lyrica makes him fatigued. The Oxy makes him fatigued. There's a lot going on. There's so many drugs that he takes. And unfortunately, that's the case right now. So we have the next um and MRI next Thursday, so a week.
00:06:29
Speaker
from tomorrow. And then we meet with a neuro oncologist the following Monday. And so that'll give us sort of the next steps maybe in terms of where we are at or or what's out there for us, I should say, in terms of trials and, and the next steps. so So, so yeah, but again, the caregiving, I mean, it's, it's,
00:06:54
Speaker
it's tough, but I, you know, it's in sickness or in health and here we go. Um, but, but you guys have been here and helpful and we have had the support for of a lot of people.
00:07:05
Speaker
Um, um, and I just breathe a lot. I go on a lot of walks. Um, he can't, he can't not be alone. So that's good.
00:07:17
Speaker
um But I think through the at least the last week, we have not left him alone because we had were sort of nervous that he may fall again. so And he has had a ah few falls before the surgery. So again, I'm just so happy that that's behind us and that hopefully it'll take his pain away.
00:07:36
Speaker
yeah Totally. So, I mean, ah if you guys have seen me in action and you've seen how we we and communicate, um you know, I try to make suggestions about, well, your PT said that this is how the way, this is the way you should walk down the stairs.
00:07:52
Speaker
This is the way you should do this. and And it's frustrating. So any advice you have, you've both been caregivers. I mean, when I was in D.C., Haley, you were here that that four days or so when I was at my 40th college reunion. And you and Will were here. So you know if there's any advice that we can all give each other, let's but go at it. If you guys have any advice for me um after having been here with him as well. Yeah.
00:08:22
Speaker
Yeah. I think it's a different, like this before the surgery, I think we were trying to just make him comfortable because it wasn't something that we knew for a fact was going to get better. Like we didn't know if we were going to have the surgery. We didn't just, we just knew that he couldn't walk and we needed to help him yeah at all costs. he was giving him the drugs, making sure he was out of pain as much as possible.
00:08:47
Speaker
And now i think It's a little different just knowing that every day he can walk more and more. He can do more and more. So I think it's the expectations of him, i think, can start to shift. I think it's hard because he still is in pain. I mean, he had a major, major back surgery. So it's sort of like, okay, at what point?
00:09:08
Speaker
Does he feel good? And do we wean off of the drugs? At what point does he start being able to do more? um And so you don't need to continue to feel as much of a caregiver as you have and we have in increments for the last couple of months.
00:09:24
Speaker
don't know if that's advice more than notes. I think it's important to make the distinction of what it was like post-op versus
Communication and Independence in Caregiving
00:09:33
Speaker
post-op. and mean what it was like pre post-op versus what it is now. And I think what you were saying, am I totally agree with. I also think there's a different mental component that comes along with this sort of healing because it's like, okay, you took action. You did something that will probably have a better outcome, not healing you, but like, hopefully like there's an end to this pain versus there wasn't before, like you were saying. So I think there's a bit of a mental component there, but there's also a mental component that comes into play of like,
00:10:03
Speaker
okay, but that didn't cure my cancer. Like I still have this going on in my head. So think there's lot of dynamics going on. And I think I don't really have advice to give you specifically because I think that my experience and Emma's experience differs from yours because we're the daughters, we're not the primary caregiver and we're not the wife. And I think the way he responds to us all is different, but Emma and I much more similarly and Lucy than he would do. And I think That can be frustrating and your position. I can only imagine.
00:10:34
Speaker
But I would just say like, I think some back and forth between you is a bit inevitable. No part of him wants to be a patient, especially because it inconvenience you, inconveniences you.
00:10:48
Speaker
um sure. So ah I always say like when I'm around you too, it's just like before you guys say something or snip, like Take a deep breath and remember the intention behind it because he might look at you telling him what to do as, oh, she's telling me what to do. She doesn't think I can do anything, but you're doing that out of love and out of care and out of protection because you don't want him to fall. You don't want him to hurt himself. You don't want...
00:11:13
Speaker
you want him to heal the best he can. And he might be doing these things quicker or less slow, like, yes, quicker or with less intention because he wants to show you that he's not a little baby. So it's like the back and forth. He doesn't want to inconvenience you, but it ends up being the cycle back and forth. So I think just like open conversations, like we had one this morning is the best advice. And just like making sure the intention of what you guys want is aligned because the end of the day, you just love each other and want to help each other. Definitely. And make it easier for a really uneasy situation. Yeah.
00:11:49
Speaker
No, thank you. Sorry to cut you off. But yes, especially in the situation where we know that the underlying... issue is the glioblastoma and, and my heart aches every time, you know, we, you know, we go back and forth. um So unnecessarily at times, but a lot of it is because poor guy's been in so much pain for two, two months. He's been a patient for two months and nobody wants that.
00:12:13
Speaker
You guys went on a walk this morning and um he starts going up the stairs with this cane in one hand and a cup of coffee on the other hand. No. Yeah. Oh my gosh.
00:12:24
Speaker
And he said, well, I didn't want to bother you. it's like He so badly wants to be normal and helpful, though. it's like It's frustrating because it's him not being able to do stuff is an inconvenience to you.
00:12:37
Speaker
But if he tries to do stuff and hurts himself more, it's a worse inconvenience. So it's sort of like... I was more worried about the coffee on the... right well Just kidding. but yeah i like He's trying to do stuff to think, oh, like I don't want to bother her. But he's not thinking...
00:12:51
Speaker
if I do this and XYZ happens, it will bother her more. Yeah. He's not really thinking about the long game. I think he's just so excited right now that he can walk up the stairs yeah and that he doesn't have to bear crawl like he was doing when his back was so messed up.
00:13:05
Speaker
Like it's little wins. And I think it's hard not to jump the gun. Like he stood up the other day and started like walking really fast. And I was like, I get it. You can do that. and big free But like, let's take a beat. Let's,
00:13:16
Speaker
Understand that it's still like nothing's a quick fix. There's ah so many different issues. We just solved one. yeah So not it's he sold has beginning stages of healing exactly he still has the recovery.
00:13:30
Speaker
He still has GBM.
Future Preparedness and Care Strategies
00:13:31
Speaker
He still is on all of the drugs. Like these are all things that I think we need to think about. in a vacuum and solve them or start to treat them individually and differently, which is hard to do. Cause like, if you're him, like you just, you feel like crap.
00:13:45
Speaker
And if you're us, we we don't know what is causing what either. i think it's hard. um Cause I think that with everything with his back and you feeling like such a caregiver, like we did the surgery so that he can have a better quality of life. And we already see that happening. and But I think like in the back of your head, our heads, his head, it's sort of like, okay, well, this level of caregiving meat is just a taste of what's to come. And I think just that being so daunting, like that's really depressing. fear-inducing too. Exactly.
00:14:16
Speaker
and then it's like, yeah, he wants to hop up because he can right now. He wants to hop up because he can right now. But it's sort of like... You need to think about the long game. You don't know how long the long game is. Which makes it even harder. Yeah.
00:14:29
Speaker
Like that as a concept is very difficult to grasp. And I think that makes him more frustrated and then more prone to lash and get irritated. Like this whole thing is so irritating.
00:14:41
Speaker
Right. And what what we have, we have, you know, our coffee every morning and we talk and it's a really nice time for the two of us. And then we sort of go on and do our things. It's not like we don't talk any other time during the but that time specifically is so sacred.
00:14:54
Speaker
And the four of us did it this morning also. You guys have been doing that for like over a year. I remember at the vineyard, you guys would wake up at like 7.30 and have your coffee. Yeah, so it's been a longstanding thing. No, exactly. What's on your mind, which sometimes first thing in the morning, and your mind is much more clear, but...
00:15:11
Speaker
we We spoke this morning about just, um you know, now that this is behind us, now you're not screaming in pain because of your nerve pain shooting down your leg every day, every hour, every your day, every minute, every day.
00:15:23
Speaker
that let's start focusing. Let's, let's say we get to live right now, you know, now that, now that this is behind us, let's live. And yes, we know what's to come. We don't know when we don't know how.
00:15:36
Speaker
Um, I feel as a caregiver for the last two months, actually more prepared for what's to come. So that actually eases my mind. this is nice I feel like we have all the equipment now we borrowed some, we bought some, we got some from MGH. So when that time comes, when he has problems walking, debt that we will be prepared for that. And you guys know me, I really like to be prepared. I like to know what's ahead.
00:16:04
Speaker
I do feel like our house is better prepared. We were very comfortable down in the lower level. That's good. It's like a turtle run. I totally think it is. And ah to one part of me said, oh, that's so unfair that we had to go through this.
00:16:16
Speaker
But it good preparation. That's a nice way of looking at it. It is. And I think as as a caregiver and a patient, the wife and the husband, we will be more prepared to tackle what's in front of us now as well.
00:16:27
Speaker
and And he's learned a lot about himself and Again, you take an extremely independent dude um who dude who does who has forever as long as I've known him, doesn't want to a patient, um pay to getting sick. you know We can stereotype many men just like that. But this is a case where your energies really need to focus on on your well-being and fighting and your healing, exactly, and fighting what's to come is probably not the best way to, to expend our energy. So we have a lot of really good talks like this. He's got a great psychiatrist. You just saw yesterday, a great psychologist. You saw ah the whole team.
00:17:09
Speaker
And a shout out to palliative care. It's really, really good. Is it palliative or palliative? I think it's palliative.
00:17:18
Speaker
Palliative care. Shit. Palliative. I think it's pal. I think it's palliative Like my pal. Yeah. They're my pals. They're our pals.
Support Systems for Caregivers
00:17:25
Speaker
um Not like a paleoontologist?
00:17:29
Speaker
palli pal Palliative care has been so great. And and being at Mass General Hospital, um they suggested doing this way back in the fall.
00:17:40
Speaker
And I think we've signed on in December. And it's been so incredibly helpful. Totally. and Mostly to help the patient to help the caregiver, um to to help the the wellbeing of the patient and really focusing on the mental, where where the patient is mental mentally and making sure that that is is being helped and being aided, whether by drugs or just, or or talk or, you know, and it's once a week really.
00:18:09
Speaker
And it's been great. So I, a big shout out to them. And it's nothing to be concerned about. Palliative care is really, even at diagnosis, palliative care is a great option. um There's so many services out there. so So that's been very helpful. And, you know, I'm going to be getting some help as a caregiver. So caregiver support.
00:18:30
Speaker
I'm so glad you're doing that. Yeah, I'm really glad you're doing that. The National Brain Tumor Society has a once a month, Monday night, all caregiver support. So I'll be doing that. And, and yeah, and just, you know, obviously talking to you guys, having you be here, Lucy included and will to see what's been going on is great because it's really hard to communicate. It's hard to articulate that. It is. And I don't want to you know, call you guys up and talk and then, oh, well, yeah, this happened, this happened. You know, I'd rather.
00:18:59
Speaker
you understand it having seen it and obviously if things change then I'll alert you but um but you get it yeah and I think you prepared us well too like I think you do a good job of like knowing what to tell us what not to tell us or just like knowing when maybe you've gone too far like we talked about this on our last episode um with Haley specifically like I think you guys had a harder conversation. And then she, like you called me and you were like, I think Hailey's mad at me.
00:19:29
Speaker
Like you pick up, you're incredibly high. I wasn't mad. Right. But like, for whatever. It's like, it was more like, did I, i did you upset her? Did you upset her? Yeah, I think I did. And you have a really high EQ. Like, I think, you know, like you can sense that type of stuff. So you do do a very good job of it. And then even when you do feel like you've gone too far, it's like, that's still a conversation, you know? yeah No, I forget. Haley is so knowledgeable in so much of this stuff. I mean, you've always had a medical mind when, when anyone had a boo-boo or something, you've come out with a little green sack. um And, and with that, which was the first aid kit and you've, loved that.
00:20:03
Speaker
And, and you haven't stopped that. I mean, you're the one who does all of daddy's, you know, medication organizations you are, um and since the beginning and since April 20th or whatever, when we came home from the hospital.
00:20:17
Speaker
So, um but no, one but I, and that's it. I forget that, um, that maybe I need to hold back a little bit and, and maybe not say everything.
00:20:29
Speaker
And there's a time and place. Yes, it's a time in the place because sometimes I really want that. Right. And I don't think you were probably, you had other things going on at the time. And so, yeah. So maybe there we have a code word like.
00:20:40
Speaker
Pineapple. Sure. Like meaning. feel like that's so basic. Are you ready? um Peanut brittle. Yeah. Funyun. Devil eggs. Devil eggs. That's good. All right. Devil eggs. And that devil eggs, that that word means, two words, um means like, are you okay? Are you in the mood? So is it like, can you? I think devil eggs is like the safe word. It's like, nah, like not today.
00:21:06
Speaker
Yeah. like Oh, I see. So if I. if you start, i'll be like, mm, devil eggs. Gotcha. Okay. Safe word. Yeah. Yeah. Like when you were at parties and we would call because you didn't want to be at the party anymore. Did we have a safe word? No. Did we just talk?
00:21:18
Speaker
I don't think we ever did that. I don't think Haley or I ever left a party.
Personal Impact and Household Dynamics
00:21:22
Speaker
You did. I had to pick you up once. Really? Yeah. It was an older guy. yeah. oh yeah I remember that. But me and Callie got dropped off and we were like, fuck this shit. Callie and I. Because that's important.
00:21:34
Speaker
Okay. I never did that. Retroactive deviled eggs. Yeah. I mean, it could be with anything. Who knows? who knows um i I have a feeling every time i open my mouth, we're going to stop. I was just thinking that. You're like, good devil eggs.
00:21:49
Speaker
Good morning, devil eggs. She's hey, can you chat? Devil eggs. We might have abuse this. No, we're not going to abuse any type of eggs. Fried, deviled, scrambled, poached.
00:22:01
Speaker
I just want to say thank you because you were caretakers. You were caregivers, care partners, however we call it. I like the word care Care bears. You were a care bear. No, I like care partners. Care bears is weird.
00:22:13
Speaker
I feel like I'm daddy's care partner. I like that more than a caregiver. So then are we the bears? Yes. Care bears. No, isn't a care bear like a silly little animal? Silly little animal. Twins are us a care bear. Yes. Yeah. um Anyway, caregivers, care partners, um you you guys were there without me, which is, it's but it's kind of like when when your grandparents would come over to babysit or whatever, or even a babysitter.
00:22:40
Speaker
And are we the grandparents in this situation? yeah In a way? Yeah. um Because you could just leave when I came home. Yeah. Although you did. like No, but I think it's important for you, like you've prepped us and now we've experienced this. And I think you trust us with taking care of the household in your absence, which is a way different ballgame than it ever would have been previously. And I think it just showed us how much work that really is. I mean, yeah honestly, like this is silly, but I think it changed the way that I like run my own house, not a not a household, it's an apartment, but like,
00:23:15
Speaker
just the way I like take care of my own stuff and like pick up after myself. Cause I'm like, Oh my God. You fixed her. Yeah. You fixed me. She cleans now. I will must be so. He went home. He went home on Sunday and he texted me and he was like, the apartment is so clean. Oh my God.
00:23:31
Speaker
Like I'm a different, I deep cleaned everything. Like the bathroom, the stove top, like just, and I know this is basic stuff, but it's not for me. Like wouldn't even like turn off lights or close cabinet doors. And now I'm like,
00:23:42
Speaker
You just have to keep this up because it can get so difficult if you're were the only one who's responsible for it. Okay. So shout out to my 40th college reunion for getting here. Shout out to Kenyon College. No, but I think like we get it now. I think we get more of what you're going through because we saw it firsthand. We got to never put your ourselves in your shoes for like,
00:24:01
Speaker
A finite period of time, but still, nevertheless. We'll never was fully understand, I don't think. But I think we got as close as we can. And I think it's nice that you know that we can come in step in, and you don't need to.
00:24:13
Speaker
This doesn't need to be your 24-7 life all the time. Like, you can get it off away and get breaks. And, like, we're here. Even when we're not here, like, we can get back really easily.
00:24:24
Speaker
So I totally appreciate it. that Thank you so much. I just had a coughing fit. um but um And I'm tearing up a little bit. But again, thank you guys. Most amazing thing, you picked up a dead bird from our patio yesterday. I don't think you would ever have done that.
00:24:39
Speaker
And I couldn't do it. And daddy would always be the one picking up the dead mice, the dead whatever in our old house. For some reason that like the dog's poop, I'm not good with, but like the dead animals. So I can handle that. I'm the opposite. Give me all the poop.
00:24:53
Speaker
Dead animals. No, no dead dead animals. Dead animals. Well, thank you so much for talking about your experience in the last couple of months, because i know it's been very difficult and we've alluded to some of it here on this platform and definitely with our friends.
00:25:05
Speaker
um But it's always helpful to hear directly from the source and hopefully therapeutic for you as well.
Raising Awareness on Caregiving Challenges
00:25:11
Speaker
And I think like so many people ask us, how are you guys doing? yeah but then specifically, how's your mom doing? And it is hard to speak for you sometimes. So I'm i'm happy that we were able to shine some light on you and the important stuff that you're doing. It's amazing. And if anything, also, I hope it helps some caregivers out there to know that you're not alone and it's hard work and, you know, just get your hugs, get your loves and, um and try to be as patient as possible.
00:25:40
Speaker
You're the best. I love you guys so much. Miss patience. Love you, Lucy. Miss you. Thanks guys.