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Part II of how caregivers also leave ICU with high rates of PTSD and long-term life impacts. Mike Maranhas shares his side of his wife’s ICU stay and recovery.
Episode Transcription
Kali Dayton
Bella mentioned to me that she had terrible hallucinations and delirium during that time being so profoundly sedated. And even once she was off sedation. What was it like for you to watch her wake up and still be delirious and confused?
Mike Maranhas
That I’m glad you asked that, because that’s exactly what I was referring to before. When I made that decision on March 20. The next day, she was worse. Saturday, she was the one. She was the worst ever. And then on Sunday, she, I came into the hospital, and a doctor came up to me and said, “Mr. Miranda, I have something to show you.”
And we went in the room and her peep had decreased dramatically. It really should have been at 26. And I was really afraid that she was going to receive a pneumothorax that it was going to blow a hole in her lung, because you cannot sustain that pressure for long. And all of a sudden was down to 12. And they were talking about reducing her oxygen at some point. I mean, she had made it there was a major change, and no one could tell me why.
She was she was coughing out large chunks of this, this discolored fungus from her sinus cavity. And I have been pulling pieces of ivory out of her mouth, suctioning it. She was bleeding all the time her her tongue was swollen about three or four times its normal size. And we’re just laying over a chin. So these are all the things I had been used to she she had him she had improved. And as time went on, she she eventually went off peop stayed on oxygen, he gave her a tracheostomy and then eventually gave her passy muir valve which allowed her to talk.
And I’m going ahead about two to three weeks now, when she started coming out of the coma. She was slow in her cognitive development. She was slow in tracking. She didn’t have the words when the when when the physical therapists try to evaluate her cognitive ability. She couldn’t follow the hands. Eventually, she was able to do that. But she was slower than most patients. This caused me to be really afraid that I that she had suffered a cognitive deficit. And then I had I had betrayed her past the time limit that I had promised. I would not I would not betray that I would have I would have held my promise.
As time went on, she did develop tracking. And then she started recognizing people. And she started smiling. She sitting up in bed. However, there was a there was a time where there was a long time period which she recognized the nurses and smiled the nurses. But when she saw me, she just stared and she didn’t smile. And the nurses would say “Bella, do you know who that is?” And she didn’t say anything.
And, and I have to tell you like I went away at one point to be alone and I cried. Because I strongly suspected that she hated me that she knew exactly what had happened. And and I I betrayed her. I would not find out too much later that she simply didn’t even she didn’t know how to respond. She did recognize that it was me. She actually was thrilled that it was me. But she didn’t know what to do. I completely misinterpreted her reaction. And this goes back to what you know, you asked me, “How would things have been had I been able to communicate with her during this entire period?”.
At this time, while she was coming out of the coma, in addition to the, the story I just told you about her, her response to me, she was petrified. She was not seeing reality as she as she began, she developed the ability to communicate everything that she saw, she misinterpreted.
She had been through and I would learn this later. So this is all retroactive. Me placing this in the story now. But while she had been under she had heard things, felt things. But her brain had interpreted them as being that she had been on a world journey. She had and this is really bizarre, but she had been on a boat traveling through the world. And her her mission had been to take care of salvation..to find salvation for what she called the disembodied souls.
And it’s ironic because the souls first of all she thought when she was in the hospital, she thought that she was on a boat in Gloucester harbor and we live in Rockport last is right next door. And she she started naming all these local places like halibut Point Park places right by our house. In her dream, that’s where she had been. And all these souls were on the beach. And a lot of the stuff she said seem funny. You know, she she claimed that Peter Frampton had been on her on her boat. She mentioned that the Grateful Dead had given a concert in my backyard. Just just really bizarre things.
And then at one point, she, I don’t mean anything sacrilegious by this, please forgive me. But she actually said to me, “Can you get Jesus?” but I said, “What, Bella?” and she said, “Cabinet behind you. Jesus is there.” but I said, “You’re going to have to tell me more.” And she was such impatience and irritability. She said, “Jesus!”, but eventually what I was able to get out of her was it she believed that there was there was a xerox copy of the infant messiahs area, in a cabinet, behind the inner ICU, and that her enemies from her dream had hidden from her. I had to, I had to prove to her – I opened up these cabinets, and she was astounded that there was nothing in them. Because in her brain, everything was so real.
She thought that the people that came to clean her room was sexually assaulting her at night when they when they were just doing their job that people that were cleaning her same thing. She thought everyone was an enemy that wanted to harm her. Near the end of her ICU stay, I was asked to come in early in the morning because no amount and no amount of benzodiazepine regardless of the type would keep her sedate. The only thing that made her calm when she when she woke was my presence, I would hold her and that would that would keep her calm, so that they could go about their rounds.
And she she could get through her day. And that’s what we did to the point where she she left the ICU and moved on to to rehab where she spent another month. But none of this stopped. The In fact when when she entered rehab her she she she couldn’t add one plus one she couldn’t identify who was in the White House. Her cognitive capacity was was basically the worst I could have imagined. She, at that point, she didn’t know who I was, and she didn’t know where we lived or anything like that.
And her fears really heightened. There are a litany of so many different things that she fabricated and she hallucinated on. And the biggest mistake I made was that when she went into rehab, I thought we were out of the woods. I saw it as as a period where we finally we had reached “You’re a miracle!”- And she was going to recover.
And during the week, she was engaged in physical therapy with the PTs and the different AIDS. And I took it as a time that I could recover. Because I was a mess. The only thing I had done was given myself sleep at night, I hadn’t kept a good diet.I had stopped exercising, I just I might as I said, I had become an automaton. My focus was getting on to the hospital. And that’s all I did every day, I lived on black coffee, Diet Coke. And that’s it.
And when when she finally went to rehab, I wish someone had told me, this is when she really needs you. This is when she’s coming out. And this is when these drugs are going to nail her. This is when she’s gonna be scared to death. And she was, but the problem is, she didn’t have the expression does she did not have the ability to express to me verbally, through through facial gestures, any any type of gesticulation, that she was afraid.
In fact, her actions were comical to the nurses to the aides. And I didn’t know any better. I humored her. And it wasn’t until much later when she was able to verbalize what she truly felt that I realized everything she had gone through. There’s no way that I can overstate how important it is that a caregiver listen, listen, listen to the patient, because they’re going through hell. They are absolutely going through the worst thing they’ve ever been through.
I would I would equate it to my my brother in law is a war veteran. He was a colonel in the Marines. He’s involved with soldiers that had PTSD. And the only thing I can equate this to are what, what people suffer when they come back from war. And they’ve seen things that no human being should have to say. I’ve been involved with closed groups on Facebook, of sepsis and large patients that are going through this. I’ve been doing this for several years now. And I have heard hundreds of people express exactly the same symptoms and fears.
Some of them are so much suicidal. They don’t want to live. They they they they question about when they’re going to return to the normal state. And the truth is that they’re probably in their normal state. The key for Bella was to accept that where she is now is her normal state. And there’s a whole nother part of the post-ICU, post-ARDS, post-rehab phase. There’s a big discussion is learning how to accept that you lived that you’re a survivor, and to enjoy life with with how, how you exited this crisis. I’ve rambled and I’m going to stop right there.
Kali Dayton
For Bella, how long was her rehab journey? Like? How long did it take for her to walk again? And how long until she could communicate? When could she tell you one plus one and who the President was- how long did that take?
Mike Maranhas
From from a cognitive standpoint, um, she came… She entered rehab, April 15 and came home a month later. So it was mid May. And she was stunned because she wanted to know where the snow was. When she when she entered the hospital. There was it was a it was a season up here. We had a lot of snow and everything. You know, obviously everything was white, and now we had flowers blooming, and she’s a garden.
So she was she was so confused. And she didn’t comprehend what had happened for the last three months. And I tried to explain to her when she was in rehab, I took her out one day to the garden. The first time I took she she had been out of the hospital since entering it into growing a wheelchair and I tried to explain what had happened. And she was thoroughly confused. She tried to absorb but I know shooting, grasp everything. But it startled her.
She lost three months of her life. I would say, near near the end of her rehab period, she could definitely calculate one plus one, probably single digits. She was she was starting to read. But she was slow, slower than the average patient. And that was a real concern.
The people that if I remember correctly, the people that assess the cognitive skills are called the occupational therapists, the three different types of therapists are ones occupational, and they’re the ones that assess your ability to do things, etc. Bella actually got really angry, because she felt that her therapists – when she was correcting her reading comprehension of basic paragraphs that you would take out of a probably eighth grade reading level, you know, magazine, whatever, was incorrect.
She asked me to come to one of the meetings because she didn’t believe her therapist. I realized that the therapist was was right, Bella was wrong. And I mean, we’re talking about my wife, who was highly cerebral. She was the head of a business systems consulting division in major mutual funds bank, I mean, all she did was write, analyze, logic was the focus of her life.
And now, she had the inability to comprehend eighth grade, eighth grade writing. So, um, this was major. So I answered that question on the cognitive. And that had a major impact on her. She, she definitely did incur some cognitive damage, because she knows that she, she just can’t do the work, the intellectual work that she did before. She’s tried, she’s taking tests, she went back to work, but not she can’t. She can’t function at the level that she was before.
And these are, these are all things I’m telling you this in a short period of time, but this, it took, it took years for us to reach the level that we could accept: this is the new norm. And this wasn’t anything that I was proactive about, or like I knew what to do, all just by default, because I didn’t know anything. And I was a husband, I listened. I listened attentively, I listened to everything. I was highly observant, of, of changes, nuances, variations in her. And I would ask a lot of questions and answer her questions in that, in that dialogue, going back and forth, helped us to breach a lot of the issues that she was facing as she went through this period.
She,at one point said to me… I’m a writer, and I have been writing a novel. I have been writing a novel when Bella came down with ARDS. And of course, I just put that aside when when she when she came out of rehab, and I went back to writing and doing the things I’ve been doing earlier. She asked me, she said, “Can you write about what happened to me because I want to understand it.” Then, and this because she didn’t want to read the medical journal.
So I decided that I would write a memoir, I couldn’t do this for a while I didn’t want to face it. I did not want to relive going everything that I had just gone through. So it took some time for me to start. But I did write a novel, excuse me a memoir. And Bella after two years did eventually go through her medical records. And finally phase what had happened to her. And that that was a huge step in accepting what had happened to her so that she could accept that.
And the it’s these emotional issues that at that point in a rehabilitation that became paramount, that that’s that that more important or more strategic to her. Her progressing than the physical ones. She had already reached the point where we knew what her physical limitations were. What was more important now was dealing with the phobias and the fears.
It’s been 12 years, and she still suffers nightmares. She has to take drugs to fall asleep. She has tremendous insomnia can never fall asleep every night is a major deal falling asleep. And that never happened to her before. She developed restless leg syndrome, which is neurological. She developed pain throughout her all nervous system, all the joints that is very similar to rheumatoid arthritis. There were a lot of there were a lot of reasons residual vestibular effects that she deals with right now. Her body can’t go any further. And where she needed only about five or six hours sleep a night before she had ARVs. Now she needs 12 or more. If she doesn’t get that she’s she’s she doesn’t function as well.
Kali Dayton
And how is this all affected? You? How long did it take to go back to work afterward? And do you feel like you have any residual PTSD from this?
Mike Maranhas
I went back to work at the time she came down with ARDS. My life I had to do career as a business systems consultant in financial services. And on the side, as I mentioned, I wrote it was it was probably six months after Bella came out of the hospital, out of rehab, and then of course after I should mention it when she she was she had inpatient rehab for one month and then she had outpatient rehab for three months.
And I would drive her to that until she was able to drive on her own I would say was about six months before I took a job. PTSD, I react I find myself reacting to any any movement that that seems irregular. She may trip you know she she’s she’s lost the ability to function, though just physically the way she has her dexterity. Um, I react to whenever I perceive that she may be coming down with tavhvardia. I can sense sometimes when she seems foggy, and I suspect that she’s suffering some cognitive deficit.
I know it’s affected me. And it’s probably made me it’s probably made me more nervous or attentive in that respect. But it’s also it also is I think, I think it’s made me just look at death. The way I feel death should be looked at this study with the with the brain aneurysm and was just, I think, compounded with ARDS.
I mean, a lot of people whenever I mentioned what happened to Bella, they don’t want to talk about it. All they didn’t they don’t want anyone to hit the detail. So I’ve learned not to just say she’s she got sick. But from my perspective, you know, death and sickness is a part of life. And we I think we have healthy conversations about about death. And so I guess from that spiritual, emotional cerebral standpoint, our life has changed and we don’t take anything for granted.
I do know that I will never ever leave separate from her. If we’ve had an argument, I will I will never miss a night kissing her goodnight. Because you never know. Life is sweeter. Life my relationship with her is far sweeter. Simply because I know how precious she is this something is this something I can’t quite express with words, perhaps because of the anxiety of doing this interview.
Maybe I’ll know later but is this is some thing transcendent about the relationship I have with her because of what we’ve been through. That makes us far closer than I ever thought I could be to another human being. And that’s a good thing. And so, in a lot of ways, we look at the good things. And that’s what we try to help other survivors do. And there are people that have lost limbs, can’t get out of bed, just horrendous things due to sepsis. And or people that have that have lost family members. And acceptance is really the only thing there’s nothing else you can do. You can’t go back and change. It’s something that happened.
And that acceptance is a huge deal. It is a huge change is a huge improvement in both of our lives. Because I believe that’s the way God wanted us to be, was to accept our search circumstances to the best of our ability, and to rely on him for for guidance. You know, a guy once told, administer once told me that, but we call the flashlight method we can’t see into the future. All all we can do is like we’re walking in the dark. And all we can see is what the flashlight shows the cone of light, four or five feet ahead of us. It’s all we can do so we can trust to that point. But we don’t know what’s ahead. And I found that’s how I live my life. I am only showing a little bit. And Bella is only showing a little bit and we have to trust and accept and go forward. And it reduces anxiety overall, certainly from the way I think I live my life before. Not entirely. I’m human. But I find that’s been the major change in my life. And I think Bella would probably corroborate well you.
Kali Dayton
You guys have an incredible story and thank you for sharing that wonderful insight into the caregivers perspective. Bella is lucky and blessed to have such an attentive spouse and when it’s hung in with her thick and thin. I appreciate your willingness to share this with us.
Transcribed by https://otter.ai
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