The Missing Link for SLPs Podcast Full Transcript
Dale Abraham 00:00
You don't expect anything like this ever. You just woke up one morning, and she kind of lost her voice and wasn't feeling good. And then by the end of the week, I was taking her into the ER, and we didn't make it out for quite some time. And it's something that you’d never expect. You just think, okay, she's got a cold or something like that, she'll be fine in a few days, and that's just not the way it went. She just kind of went downhill and got worse, and worse, and worse to a point where she couldn't hold her head up and was throwing up even these little tiny pills that they've given her, and I knew something wasn't right. I didn't know what it was, but I knew I had to get her in to get some higher care, and that's kind of what started at all.
Mattie Murrey 00:43
Hi, everyone, and welcome to the Missing Link for SLPs podcast. I’m Mattie, your host, speaker, and very passionate speech language pathology advocate. You are listening to The Speechless SLP series with Vanessa Abraham, and you get a unique perspective in each one of these episodes on her journey being the speechless SLP in the ICU bed, unable to talk. So, welcome to this series of the Missing Link for SLPs podcast. Glad you are here. Sit back, take a listen.
So, welcome to this episode of the Missing Link for SLPs podcast. We are diving deep into another discussion with Vanessa Abraham, our Speechless SLP, and we're joined tonight by her husband Dale, who is going to offer such a unique perspective on what it's like being the spouse of someone who is speechless, and in a bed and not able to communicate. Welcome, both of you.
Dale Abraham 01:39
Thank you very much. It’s a pleasure to be here.
Vanessa Abraham 01:41
Thank you, Maddie.
Mattie Murrey 1:43
This whole series is about storytelling and what it's like and sharing perspectives, and the reason we're doing this is to help us be better at our jobs as speech pathologists.
So, jumping right on in, Dale, can you tell me your perspective, your side of the story, when one day everything was all right, and then Vanessa said she wasn't starting to feel well, and then what happened?
Dale Abraham 02:08
Yeah. It was one night I was supposed to go back up to work, and she had called me to see if I could get a prescription, and I basically went down and picked up the prescription, got it to her – and they were the tiniest pills I've ever seen, and they were anti nausea pills, and she couldn't get them down. I knew something was wrong. I didn't go back to work. I called my boss and let him know.
Mattie Murrey 02:28
All right. So, you brought her into the emergency room, and she was just significantly medically declining.
Dale/Vanessa Abraham 02:34
Yeah. She was getting worse, and worse, and worse, and they just didn't know what was going on. Pretty scary feeling to be in somewhere where you think they're going to be able to help you, and they just couldn't figure out what was going on.
Mattie Murrey 02:46
What type of a length of time span are we talking about?
Dale/Vanessa Abraham 02:50
Two in the morning until – we were there for probably four days. From Sunday morning at 2:00 a.m until I think it was Wednesday or Thursday that she was transferred to UCSD.
Mattie Murrey 03:02
Okay. Thoughts of – what emotions are going through your mind?
Dale Abraham 03:08
It's just more you're scared, you're worried.
Mattie Murrey 03:11
Dale Abraham 03:12
I don't know what's going on. The doctors don't know what's going on. She's going down, and getting worse, and to see her in the condition she was, it’s almost unrecognizable.
Mattie Murrey 03:24
Dale Abraham 03:25
Somebody who's thriving, and then all of a sudden they're semi conscious, if at all. It was really tough. Just heartbreaking.
Mattie Murrey 03:33
Do you remember any words of comfort during this time? Or any conversations that someone said to you as you were waiting to see how everything was going to roll out that really stuck with you, and it was comforting to hear?
Dale Abraham 03:49
Not really, because at that point, I was spending pretty much the entire time with her. I think the first – well, the first morning, and all that next day, and then the next night, I spent in the hospital with her. I just slept in a chair next to her bed. Yeah. I didn't leave the hospital until they would kick me out when she was in the ICU.
Mattie Murrey 04:10
Dale Abraham 04:10
[crosstalk] hour. So, at 10:00 o'clock at night, they'd kick me out until 6:00 o'clock the next morning.
Mattie Murrey 04:17
And I bet you were there at 6:00?
Dale Abraham 04:18
Oh, yeah, I was there at about 5:00!
Mattie Murrey 04:22
Excellent! So, I know that you were thrust from your role that you played in your family, into that of being a primary caregiver. Can you discuss with us what that was like?
Dale Abraham 04:35
Well, the hardest part is when she couldn't communicate. You don't know what's going on with her. You don't know what she's feeling. You don't know what she's hearing and comprehending. You don't know how much pain she is, and where it hurts, what hurts. You don't really know what's going on. And they can look at her vitals, and they can say, “Well, this is good. This is not good. We're concerned about this”. But when you can't communicate, it's the hardest thing in the world, and you just – you feel somewhat helpless. Not necessarily hopeless, but for sure, helpless.
Mattie Murrey 05:04
I was out with my son the other night, who is a nurse, and he said something like what you just said, Dale. The fact that all we can read are the vital signs, and maybe the eyes. And you know her so well. Did you knowing her extra well, better than the medical staff, give you an edge with what she was feeling, her pain levels, what she needed?
Dale Abraham 05:28
I don't think so. I think she was so drugged at that point that it made it hard to see that, and her eyes were kind of glassed over, and she was pretty much eyes closed the whole time. At that point, I didn't even know if she could understand what I was saying, or comprehend me or hear me. A pretty helpless feeling.
Mattie Murrey 05:48
Okay. So, you're trying to use the AAC with her. You have a system that is an eye gaze system, Vanessa?
Vanessa Abraham 05:56
Mattie Murrey 05:59
Vanessa Abraham 05:59
At this point, I was all eye gaze.
Mattie Murrey 06:02
All right, and the eye gaze was pointing to what icons?
Vanessa Abraham 06:07
Yes, no, and some letters.
Mattie Murrey 06:10
Okay. So, long periods of time to form a communication exchange.
Dale Abraham 06:15
It was 10 minutes to get out the word pain.
Mattie Murrey 06:19
My goodness. And by that time, you could have had some pain medicines on board.
Dale Abraham 06:24
Mhm. It took a long time to communicate. That's the thing. And she knew what she was doing. I didn’t necessarily know what I was doing. But yeah, even that, even with a patient that really knows what they're doing, it takes a long time.
Mattie Murrey 06:36
Right. So, what words of wisdom do you have for anybody who's listening to this podcast, to give to the spouse who has somebody and they’re trying to communicate?
Dale Abraham 06:46
You just need to be really patient and attentive, right? And I think you can’t communicate like normal. It takes a long, long time, and you just have to be as patient as you possibly can. You can't get frustrated. You have to encourage. She would get, I'm sure, frustrated with me because I wasn't picking up as quickly as maybe she could go there. But it's just one of those things that it takes a long time, and you just have to stay at it, be positive, and just know that eventually you're going to figure it out.
Mattie Murrey 07:12
So, breathe, count, wait.
Dale Abraham 07:15
Mattie Murrey 07:66
Dale Abraham 07:16
Vanessa Abraham 07:17
For me, I felt like – I wasn't frustrated with them not getting it. I was more frustrated with myself that I was in this situation that I couldn't communicate to them. I was never frustrated that they never got it. It was more on me. Like I was frustrated that I couldn't readily, or easily tell them what I wanted to do, and I felt like I was letting them all down.
Mattie Murrey 07:48
That's a very important perspective, a very important perspective. Because then as we stand by the bedside of somebody who is speechless, we can reaffirm that it's not them that's failing. That it is the system is not developed and responsive to the setting, per se.
Dale Abraham 08:10
Yes. I think that's so important.
Mattie Murrey 08:12
Dale Abraham 8:13
You don’t want to assign blame to anybody. It's just –
Mattie Murrey 08:15
Dale Abraham 08:15
-- it is you’re trying your best.
Mattie Murrey 08:17
Yeah. Yeah, everybody's trying their best.
Vanessa Abraham 08:20
Yeah. Everybody is trying, both parties. I was trying my best to communicate slowly so they could understand. But I know in me that there was a lot of just guilt of look what – I've brought them into this, and now they're getting frustrated. And in a way, it was kind of like I was starting to blame myself. Like, what am I bringing on to my family? So much guilt and shame associated with it all.
Mattie Murrey 08:50
With the getting sick and the communication difficulties?
Vanessa Abraham 08:55
Patient difficulties of –
Mattie Murrey 08:56
Vanessa Abraham 08:58
– it's a very frustrating process, especially when you're very – you're cognitively intact.
Mattie Murrey 09:03
Vanessa Abraham 09:04
[audio cuts out]. And you know that they're trying to be patient with you. You're trying to be patient with them. And I honestly think that they were much more patient with me, than I was patient with them or –
Dale Abraham 09:15
And with yourself even.
Vanessa Abraham 09:17
Yeah, I was frustrated. It's a lot of anger. And like I said before, just that guilt of, oh boy, I'm bringing them into this. They don't deserve this.
Mattie Murrey 09:31
Now, you had communication difficulties when things were calm and you had 10 minutes to spell the word pain. Was there ever a time when there was more of a medical emergency or need to quickly communicate something?
Dale Abraham 09:46
Well, they would communicate with me more. I don't think she – she wasn't at a point where she could make a medical decision anyways.
Mattie Murrey 09:53
Dale Abraham 09:54
So, it was to me. And especially by the time she got to UCSD, which was only a period of like three and a half days, four days. And their care – the care there was amazing. But at that point, it was all through me, and I was making all the medical decisions for her, what they could and couldn't do, and some of the stuff that was going on. Any necessary communication, I was there pretty much 16 plus hours a day. I’d do rounds with them in the morning, and talk to the doctors, asking them questions. I was fortunate enough to have several doctors as clients of mine that I was able to talk to, and get some –
Mattie Murrey 10:34
Dale Abraham 10:34
– [crosstalk] them, which was huge. Without that – without their help, it would have been a massive struggle.
Mattie Murrey 10:41
So, what is somebody to do when they're faced in this situation? Any strategies? Any approaches?
Dale Abraham 10:48
For which part?
Mattie Murrey 10:50
For untangling the decisions, focusing on understanding what's being said to you, and then making those decisions, and understanding everything?
Dale Abraham 10:59
Well. Yeah, that – I mean, you just have to be aware. You have to ask questions in a very nice, very respectful, polite way. Because you're talking to professionals that are some of the best doctors in the country, but at the same time, they didn't know what was going on.
Mattie Murrey 10:17
Dale Abraham 10:18
So, asking the right types of questions, being involved in the rounds, and they were great. They let me be there every morning when they would meet. I’d step out of Vanessa's room, and I’d meet and hear what they had to say about her, and what was going on, they'd review it. And it was kind of almost like being a little bit of a medical student, even though I, you know, but –
Mattie Murrey 11:36
Dale Abraham 11:37
And then I'd go research it when I could, and I'd look online and I’d try to find out these symptoms, and this, and that. And then I'd ask questions, and I try to get them thinking about different things. So, it's a huge team effort, and it really was the team there that helped us.
Mattie Murrey 11:52
Did you feel included as a team member, as an important stakeholder in the decisions and everything happening?
Dale Abraham 12:00
Yes. Yeah, I did. They would ask me for my permission if they had to do anything, they have to anyway at that point, because I was there pretty much all the time, and they would include me in decisions. And then there came a point where I would – I started asking them about options. They might not even have been discussing some of them, but it was some of the things that I was kind of wondering about, and they were open to hearing, especially when they didn't know what was going on.
Mattie Murrey 12:25
Dale Abraham 12:26
Anything that can help them, they were willing to listen to anything.
Vanessa Abraham 12:30
They were very open to him attending rounds too, which was so wonderful. It really helped us build trust with them, and my team knew that he was very involved. He was asking questions. He was asking very good – like Dale said, he was researching things, and he was asking questions, and doctors would tell me, like he's asking really good questions. He's bringing up really good points. And it very much was a team effort. And him going to rounds, and them encouraging him to go to rounds too, and hearing all the information that the team of doctors was presenting was really valuable.
Mattie Murrey 13:11
So, I hear you saying several strategies. One of them is present yourself as part of the team, and advocate for yourself as needed. Be respectful and professional in your communication with them.
Dale Abraham 13:24
Extremely important. Yeah.
Mattie Murrey 13:26
Why do you say that?
Dale Abraham 13:28
Well, I just think in today's world, just in general, we have to make sure that, even if our opinions differ, that we are respectful of other people.
Mattie Murrey 13:36
Dale Abraham 13:37
And they are the experts. I'm not the expert in the medical field, by any means, no stretch of the imagination. And I didn't want them to ever feel like I was trying to step on their toes or anything.
Mattie Murrey 13:36
Dale Abraham 13:47
And I would always try to word things the right way. So, just as a question, “Can you help me understand this? What about this? Could this even be a possibility?” And they would always – I don't think I ever offended them with any of the questions that I asked. I think they were open to it, and they would help. And if it was helpful, that’s great. And if it wasn't on the right track, they tell me that too.
Mattie Murrey 14:09
So, very much a collaborative approach.
Dale Abraham 14:11
And that's what they do there. When it's a big medical school like that they have a huge team, and everybody's trying to figure things out.
Mattie Murrey 14:18
Do your own research. Do your own thinking. Ask the questions that you need to ask. Search out for resources. Those are some excellent strategies.
Dale Abraham 14:26
Mhm. And be your own advocate, right?
Mattie Murrey 14:30
Dale Abraham 14:31
Vanessa couldn't advocate for herself. So, it had to be me, and I was there to help advocate for her, and when we left there and went to the next place, for sure. I mean, my level of involvement at UCSD is what, I think, helped her make it through the next place. Otherwise, I don't know that she would have made it.
Mattie Murrey 14:52
Dale Abraham 14:53
They helped me understand how to do things for her. They taught me how to use her feeding tube. They taught me how to do so many things just for her. And getting her to a point where she knew I was there all the time, I think it helped alleviate some of the anxiety, not much, but a little bit on it. And there was comfort in the fact that the people were professionals, and especially at UCSD, again, where she could trust them. And when I went to go grab something to eat for 10-15 minutes, she wouldn't be worried about it. She knew she was in great hands. And then when they kicked me out at night, I knew that she was in good hands, and she knew that she was in good hands. And I always stayed late enough to make sure – I think they had shift change around 8:00 or 9:00, and I always stayed till 10:00 or 11:00 so that she knew exactly who was coming on, and who her night nurse was going to be. And they knew me, and they had all my contact info, and all that stuff. So, just that whole team approach and just trying to be a very respectful member of the team, while still advocating for her, is really the key to the whole thing.
Vanessa Abraham 15:55
The staff really had a lot of respect for him, too. It was definitely a two way street. We had a lot of respect for them, and what they were doing, and the level of care that they were providing. But the way Dale was involved, the way he was asking questions, the way he was assisting the staff, it was definitely a two way street when it comes to respect.
Mattie Murrey 16:16
So, there was a point in time where Vanessa was – when she was extubated, she had a medical instability event, and they had to physically remove you from the room. Can you share with us your perspective on that?
Dale Abraham 16:29
Yeah, that was tough. You don't want to leave, and I was holding her hand right at her bedside. And they got to a point where they were going to have to intubate her again, and they don't let anybody other than the immediate necessary medical team in the room. And so, they basically pulled me out, and said you’ve got to leave. And at that point I didn't want to, but I knew I had to for her to get the treatment that she needed. And when I say needed, it was a necessity. I mean, it was a medical necessity that she actually had to be. But it's tough to leave, especially when somebody's so frightened and kind of not being able to breathe, right?
Mattie Murrey 17:12
Dale Abraham 17:12
Mattie Murrey 17:13
So, for somebody who does have to come up to you and say, “We need you to leave your wife’s side, or your loved one’s side”, what are the best words to use?
Dale Abraham 17:22
Boy. At that moment, I don't think the words matter as much as maybe the delivery. To me, they said, “Listen, you have to go. We need to do this. They won't do it while you're here. I need to take you outside of the room”. And I went outside the room. I went about one step outside the room, and waited until they were done. And immediately when they said I could go back in, I went back in and held her hand and reassured her, and made her know that I was there, and I wasn't leaving, and she was going to be okay.
Mattie Murrey 17:52
The part that strikes me the most, that gives me goosebumps, is it's not what they said, but how they said it.
Dale Abraham 17:57
Yeah. I think that's really important in communication, right? A lot of it is not necessarily what you say, but how you say it. And they were great about it. And I knew it, you could – I could see. I was right there. I knew what was going on.
Mattie Murrey 18:11
Dale Abraham 18:12
And I knew what was going to have to be done. Now, it's a pretty scary thing to witness, especially when you're not used to the medical stuff, and seeing some of the stuff I saw. Now, there's a lot of stuff that goes on in an ICU that you just are not used to.
Mattie Murrey 18:30
So, stepping forward, Vanessa's medically stable. She's getting ready to move to – you're getting ready to move to a rehab facility, Vanessa. What type of work, Dale – how did you begin deciding where to go?
Dale Abraham 18:44
There wasn't a whole lot of decision to it. It's kind of what your insurance will let you do.
So, the first one, because she was still on a respirator there was only basically one place that she could go. And unfortunately, that one, the care there – and I don't think it was the nurses. I don't want to blame anybody fault wise, but I think they were just way understaffed and overloaded. And there was just so many things that went on there that were just horror stories that – they would kick me out at, I think there it was 9:00 o'clock and it was about an hour and a half from where I was staying, or our house, so I would drive home every night, and I’d be back 6:00 in the morning when they’d let me in. I would stay as late as I possibly could until the security guard would come in and kick me out, but one of the scariest points was I just didn't know if she'd make it through the night every night.
Mattie Murrey 19:35
I can't imagine leaving a loved one with those fears. Were you aware of this, Vanessa?
Vanessa Abraham 19:44
Mattie Murrey 19:45
What was that like for you?
Vanessa Abraham 19:46
I'm not even sure I can describe the level of fear.
Mattie Murrey 19:50
But you trusted Dale.
Vanessa Abraham 19:52
Mattie Murrey 19:53
That he would figure this out.
Vanessa Abraham 19:57
Absolutely. Trust 100 percent. But as soon as he was gone, I can’t even go there, like what would go through my mind.
Mattie Murrey 20:05
And we don't need to go there.
Dale Abraham 20:07
As soon as she was off the respirator for 24 hours, I had her out, and I had been advocating to get her out of there. And that's where when you know there's something wrong, and you'll – and for any caregiver, you know when they're not being taken care of properly, and you can't get the help. And you go out, and you look for help, and it takes you 30-40 minutes to find somebody, or you can't find anybody at all. You just know it. And I think the admissions person there, as much as the people at UCSD liked me, I think the admissions lady there didn't like me at all, because all I wanted to do was get Vanessa out of there.
Mattie Murrey 20:42
Dale Abraham 20:42
And as soon as she was medically cleared to leave, she was out within a couple of hours.
Mattie Murrey 20:49
So, what do you say to – I know we have SLPs who work in facilities like that. Since I've been more vocal about the recording of these, I've had a number of SLPs come forward and say, “Yes, I was sick, and it was horrible”. How do we change the system? That's the whole purpose of this podcast, is to have these conversations to change the system as much as we can in our own corner of the world.
Dale Abraham 21:15
Right. I think if you're one of the people that's working in one of those facilities, and you know that you're completely overworked and there's not enough care, and the care is bad, I think you've got to go and let people higher up know. Let people know what's going on.
I know one of the nurses I talked to that had her mom in one of those – that same facility, she wrote letters to the – I think it's the ombudsman, and some of the different authorities to let them know what was going on. I didn't go that far. I let the staff know there –
Mattie Murrey 21:50
Dale Abraham 21:51
– that here's what I'm experiencing. Here's what worries me about my – for my wife, especially when I leave at night. And I think at one point, I tried to get them to let me stay there at night, but they just weren’t going to bend the rules there.
But yeah, it's a scary feeling. It's terrifying when you just don't know what's happening. And it's not like – because she was at a point where she's not sleeping all night, and it was only little bits here and there, and she was up for a lot at night. Not being able to comfort her, I know, was just adding the anxiety of not knowing what's going on and, and not having somebody there to take care of her.
Mattie Murrey 22:27
So, not accepting the fact that things have to stay the way they are.
Dale Abraham 22:32
Mattie Murrey 22:32
Advocating for our profession. Advocating for those we work with. Stepping forward to make a change and believing we can make a change.
Dale Abraham 22:41
Yeah, I think that's huge.
Mattie Murrey 22:43
Last question. Any words of advice for other care partners that are just starting the journey that you two have been on?
Dale Abraham 22:52
Yeah. I think we've gone over it, but be patient, be aware, and be involved, and be respectful of all the health professionals. But at the same time, don't just take their word on everything. Do your own research, and become knowledgeable in whatever is going on so that you can make informed decisions. Because there was a lot of times I had to make decisions that if I hadn't had the resources I had, and learned a lot of the stuff that I did, those decisions wouldn't have been very informed, and I think that helps you understand what's going on. So, just stay involved, and be respectful of everybody, but do your best to be involved, and make the best decisions you can.
Mattie Murrey 23:32
And any shout outs specifically to speech pathologists who work in the medical setting?
Dale Abraham 23:37
Yeah. There were some great ones. We were involved with several at UCSD that were fantastic. Sherry at Eisenhower was wonderful later on. But yeah, they were all really good. The speech pathologists were great. They were not one of the ones that we had any kind of problems with at all, and not that we had any problems with any of them, but the speech pathologists were fantastic. Especially from my perspective, and how they dealt with her, and how understanding they were, and then when they knew that she was a speech pathologist, you could just see they were broken for her.
Mattie Murrey 24:11
Right. One of our own.
Dale Abraham 24:13
Yeah. And I heard that saying, and that phrase a lot.
Mattie Murrey 24:19
Mhm. It's true. Vanessa, what was it like laying in the bed, hearing these conversations that were going on about you between your husband and the medical personnel? What was that like?
Vanessa Abraham 24:33
Obviously, terrifying. That word comes to mind. But depressing, sad, sad for myself that I couldn't participate in these conversations myself. I remember just blankly staring at the people with a thousand thoughts running through my head, and wanting to ask, “Is this my forever? What's my prognosis? Am I going to die?” And I couldn't. That's terrifying.
Mattie Murrey 25:02
Okay. And what could we have said to you at that point in time?
Vanessa Abraham 25:10
I don't know. It's not like anybody knew these thoughts were going through my mind.
Mattie Murrey 25:15
That's why we're having this conversation, because we've not been in the bed. We've not been where you are. And I want you to put words to what you were thinking, so when we walk in those rooms, and we work with people like you, we understand more of their perspective.
Vanessa Abraham 25:33
I think human contact is huge. Like holding their hand, and being the sunshine for them, being encouraging. That person can't talk or ask questions, and they are terrified beyond belief. Like, there's nothing to describe the level of fear in their mind. And just having somebody probably come up to you and hold your hand. And even if you say, “You're going to be okay”, and even though the person may not, I don't know, but just being that sunshine to them. That somebody that comes in your room and smiles and holds you, or comforts you, or makes you feel human.
Mattie Murrey 26:23
That's excellent. Now you're writing a book, and you're calling it what?
Vanessa Abraham 26:29
Mattie Murrey 26:31
And more details will be in the book about all of this. So, thank you both for your time today for coming on. Appreciate you sharing your stories and your perspectives, and wading through the icky parts of this journey. Thank you for sharing because we're going to learn from it.
Vanessa Abraham 26:45
Dale Abraham 26:45
So, hey, SLPs, that concludes this episode of the Missing Link for SLPs podcast. Please visit my website at fresh slp.com. Follow me on Instagram, or jump on Facebook to connect in our safe and friendly Fresh SLP community where we are empowering new and transitioning SLPs. If you found value in this episode, or in any way had an aha moment, or I gave you a fresh perspective, please show me some SLP love, and support me on iTunes or the Apple podcast app or subscribe to me on YouTube. You got this!