Vulnerable!

Vulnerable - Feeling all alone and capable or susceptible of being exposed to a hurt, wound, sad event, etc. (My definition.)

My day was really crazy yesterday. 1 a.m. was when I finally went to bed, after addressing my husband’s pain situation. Back up at 2:30 to give him medication again for pain as it had escalated yet again and he was screaming and banging his hand on the bed edge. At 3:30 a.m., our daughter came upstairs where my room had become to accommodate everyone else.

“Daddy’s pain wake you up?” “Uh huh.” “Alright let’s get you some blankets to sleep on here as you have a cold and can’t be in bed with me.” “Okay! (with sniffles)”

I got up at 7:45 a.m. to let the nurse in, brought her up to date, child woke up, dealt with her and went back to sleep from 10 to 11. Got myself up and going went to an event (I’ll explain below), came home at 4:30, did the nighttime dinner comedy routine, trimmed shrubs and luckily went to bed by 11, though I was up at 1:30 a.m. again for Hubby’s pain.

Why would I tell you what I did yesterday? Let me tell you about the event I was at; it puts the day in complete perspective.

Yesterday afternoon I got the opportunity to go (as a last-minute observer/participant) to a Disaster Simulation Training event. This was put together through Faith Based Churches/Ministries as a way of giving actual “hands on” emergency disaster experience to all the teams who had gotten classes but wanted to apply their knowledge to see what they had learned or needed to learn. Besides the faith-based groups, there were people from ham radio groups, Volunteer Organizations Active in Disaster (VOAD),  health departments, police trainees, the state guard and several others.

I’m bad with numbers but I’d guess there were over 100 people participating in this. I came to be an observer, drawing information and posing questions with respects to the vulnerable populations.

I was placed with one group which had been cross-section with both the experienced and non-experienced. They understood I had no intention of getting in their way. But I got drafted! I was paired with a very nice lady from a church Disaster Ministry. Our group’s scenario was to seek out people see if they need treatment, help them and relay the information to the coordinator.

The hitch: Communications were completely down! (This includes the emergency radios that you’d expect to see!) “M” and I went in search and found a person unconscious next to the door of the building. She had me run back to the team leader let him know what we found and in turn he instructed us to keep her stable, and he’d wait for communications to get the first aid team.

When I returned she asked me if I knew CPR. “From about 20+ years ago. What I know is either out of date or rusty.” She gave me the heart beat count and then she and I rotated performing CPR. A little bit later we were instructed to move the person away from the building and bring them near the team leader.

So the five of us picked up the person and carried them for a little bit. We had to set the person down because another team member couldn’t figure out how to carry them easily. So I took my “caregiving” knowledge from transferring hubby (I’m 4’10″, Hubby is 5’11″) and showed her how to grab a limb without hurting the person or themselves. We picked the person back up and proceeded on to the team leader; then resumed the CPR.

About 20 minutes later of non-stop CPR, the scenario ended and the first aid team arrive though in our case the person we were doing CPR on died.

Everyone participating in the event was then gathered, broken into review groups and three positives and negatives were given for the different scenarios. Outside of the usual comments that you might expect to hear out of a situation, only one stood out.

I took the liberty of asking the group how do they feel good/bad with respects to how their scenarios would have gone had their casualties had disabilities or other challenges. Most mumbled answers that they didn’t there would have been much of a difference. But one person said, “We don’t deal with disabilities in these – that’s for other people.” They continued on.

That last comment hurt. I heard that from earlier years in my EP history and those who say things like that have no desire to help the very vulnerable. I did address this comment to the organizer directly. It turns out they were not happy about this; their child is autistic.

The conversation eventually led to an idea they were trying to put together of involving caregivers. I have been kicking around an idea of certifying caregivers for disaster assistance, etc. I’ll keep you posted.

I learned volumes that afternoon. Here are my questions I came up with for me personally:

    • Why aren’t caregivers given the ability/encouraged to go through a basic first aid/CPR course for their carees? What if my husband or daughter needed those skills and I had no help?
    • What would happen in a disaster if something happened to me? Could my husband address all the details that he and I keep for him? Would my husband and daughter be separated simply because of his medical challenges?
    • How would I handle things like CPR, etc if my husband ran out of his pain controlling meds? (Some of his meds keep his nervous system anesthetized so that limbs don’t spasm.)
    • What if my husband had a service/seizure dog? Would they be separated due to lack of education?
    • How much could I do for my husband medically if he needed access to medical services and I had no help for 30 minutes?

Beside those questions, I had also wondered about how they would help those with different vulnerabilities and overall the answers were: Speak softly, light touch, assume either epilepsy or on drugs, always remove the person from their wheelchair and never allow anyone behind them. I think more answers need to be added.

It took me a bit to realize it, but I had reason to give myself pats on the shoulder: I remembered my CPR and was able to help a person even if my knowledge was 20+ years old; I was able to show a person how to hold another person’s arm when moving them; and I was able to bring an awareness of the vulnerable needs population into the afternoon.

I would sum up my participation in the Disaster Simulation by saying this: I am very glad I went and not just observed but participated too. I learned volumes. Until yesterday I thought I had a pretty good understanding of my family’s (and the communities I advocate for) vulnerabilities should a disaster occur; participating in this disaster simulation simply amplified by magnitudes how vulnerable my family is and that of anyone with high-end medical needs. It is a very scary realization. I now understand why I do what I do in the EP arena.

…..

As a caregiver (I don’t title myself this too often), I clearly understand that there may be a day, that despite all my education, I may not be able to help my husband due to circumstances. But it is my responsibility to become educated so at least I can say, “I tried.” Between knowing you all, your stories and what I do, I am promising to YOU here and now, I am going to try to raise the issue of caregivers and the role they can play in disasters. We are, after all, the hidden “first responders,” the “Disrupter Superheros” with experience.

I remember the day of my husband’s accident and that I was supposed to feel vulnerable between his condition and that of my being pregnant. I remember all the medical personnel who refused to acknowledge my husband’s (then undiagnosed) life threatening spinal disorders and feeling vulnerable in those moments. But none of that can compare to how vulnerable I felt at the end of yesterday afternoon, when I realized that there really is very little disaster training that incorporates (in real world time), members of the vulnerable communities.

I think I can trim shrubs, and be up at all hours of the night. Those are things I can control and not feel exposed or make me capable of being in situations I can’t control.

My slogan of Educate and Advocate has now taken on an even deeper meaning for me.

The Roaring Mouse

(PS This is my review that I’ll also be submitting to my counterparts in EP.)

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Avatar of Roaring Mouse

About Roaring Mouse

I am a G-d speed caregiver for a spouse who had a spinal cord injury, syringomyelia, autonomic dysreflexia, TBI x 2 (Tramatic Brain Injury), complex regional pain syndrome and two shunts.  I've been with Caregiving.com for over two years now and have actively participated in the Caregifter Essay program. As an Emergency Management Disability Liaison for a nationwide disability disaster response non-profit, I work to engage both disaster responding and the disability communities to network and collaborate on disaster planning while educating and advocate both on the importance of the topic.  In my spare time I volunteer at a local spinal cord rehab therapy center gifting both the clients and the caregivers with resources and silly jokes so they leave with a smile.

7 thoughts on “Vulnerable!

  1. Avatar of TrishTrish

    RM, Wow, I can hardly keep up with all of your energy! You’re amazing — even on little sleep. :-) I appreciate all the information and what you’re doing. All I have to say in response to the person who said, “We don’t deal with disabilities in these – that’s for other people” — what other people does she/he have in mind? That type of thinking (letting someone else deal with it), both infuriates me and boggles my mind.

    All of us are those “other people.” We all have to take responsibility for helping those in need whether in an emergency situation or day to day.

    Thanks for doing what you’re doing, RM.

    I hope you get some sleep tonight. Big hugs!

    Reply
    • Avatar of Roaring MouseRoaring Mouse Post author

      Trish,

      Energy?? I think it’s just insanity!! That and the occasional chocolate chip or two!!

      I love this statement that you wrote: “All of us are those “other people.” We all have to take responsibility for helping those in need whether in an emergency situation or day to day.” This is the statement that I and others in the vulnerable communities that we work with are trying to get across. But that statement is one I’ve heard before and I’ve heard worse. Some of it has to do with the local culture, some indifference and some just straight out lack of education. In any case, at the end of the day for all of us our blood is red. But thank you for your insight…if you don’t mind I’m going to carry that with me too!

      I did get a bit of better sleep…thanks! – RM

      Reply
  2. Bonnie

    Hi,
    I thought I would respond as I am a Certified Casualty Simulator for mock disasters here in Canada. Here the person who decides the condition and injuiries is based on whomever is leading the Casualty Simulation. I have had that role in the past, and have incorporated disablities as we see in the real world as well as those that come from severe brain or spinal injury. I have also had my “victims” (as we like to call them) make up some stuff along the way – like one gentlemen,upon noticing the first aid team didn’t have gloves on, and I had given him a severed artery injury, whispered to his recuer “I am HIV positive” – believe me that ambulance attendant will never forget his gloves again!
    It is what mock disasters are for – to learn all types of senarios! You push for them to do more! Maybe they should be rescueing people from a nursing home – or hospital! We’ve done that too, at a hosipital, then you can incorporate all types of disabilities both mental and physical!
    Everyone needs to learn that could be attending someone that is not the “average” Joe, because even if before the disaster they were, they may not be after!
    You go – get them to see – we see it here – they need to see it there!

    Reply
    • Avatar of Roaring MouseRoaring Mouse Post author

      Dear Bonnie,

      Welcome to the site! I’m glad you made the visit. Initially from Michigan, I can remember visiting Canada all the time as a kid and to this day we still have a few relatives up there. I hope things are warming up there!

      Yes, I’ve never heard of a Certified Casualty Simulator. Is there a site I can visit for more info…that I might pass on?

      Down here …at least with my tiny bit of knowledge, the vulnerable communities generally are not as commonly included as those not from that community. There is now a strong movement to break down that barrier and not sort out people in a disaster that comes from a friend of mine who recently entered into FEMA. The terminology is inclusiveness. For me…I just wriggle my way in and then ask a “TON” of questions. But it’s been good because then I can adjust what I need to say to them based on their perceptions. Or I can take that info and hand it on to others who are interested and are looking for areas to change.

      Thank you for your encouragement. It means alot!

      The Roaring Mouse

      Reply
  3. Avatar of DeniseDenise

    Hi RM–This is terrific. Your insights at the end–how important it is to educate yourself, to be aware, to try–is what minimizes regrets. We can live with knowing we tried our best. We can’t live with the regret of knowing that fear kept us from doing our best. You teach us how to face the fear vulnerability causes and create action plans (educate and advocate) to overcome. I love the Disruptor SuperHero!

    Reply
    • Avatar of Roaring MouseRoaring Mouse Post author

      Denise,

      Thank you! Being a fighter comes from some of the experiences I’ve had with hubby. One was so bad his primary was endorsing my moving my husband out of an LTAC – against medical authorization (AMA). I’ve had to learn this…sink or swim to survive.

      Disrupter Superhero! I see a figure wearing a T-Shirt with a cape. The t-shirt has Disrupt on it just like you did on the site with the caregiving logo underneath….kinda like a suggested smiley face. Oh yes…they have really strong muscles too!!!

      - RM

      Reply
  4. Avatar of ejourneysejourneys

    Wow, RM! Thank you for your untiring advocacy, especially in the face of that staff member who blew you off. I like your brand of insanity. :-) I hope you and Hubby can get a good night’s rest.

    Reply

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