Taking On The Role Of Advocate
When I first married my husband, I largely left his medical whatchamahoozits up to him. He made his own appointments, took (or didn’t take) his medications as needed/prescribed, and generally just Handled His Own Business.
And then, a little while down the line, I realized: He’s not really equipped to do that.
It’s not that he’s unable to take care of himself.
It’s more a matter of his needing support.
(We all do, honestly. Especially in medical situations.)
So I started going to appointments with him once in a while. I got clarification on what kinds of things he should/should-not be doing where medicine and diet and physical activity were concerned, and sort of… I dunno… Coached(?) from the sidelines, with little prompts like “Remember, Doctor Hardtopronouncelastname said…” and “Make sure you eat suchandsuch before you…” and whatnot.
And then came our first experience of surgery.
It was an emergency, something completely unexpected. And when, at some ungodly hour of the night, the doctor emerged and told me my husband had made it through the procedure just fine, I stayed at the hospital long enough to see him settled into his room then took myself home to sleep off my catastrophic migraine for the rest of the night (with full intention of returning the next morning).
When I returned the next day, I realized my mistake.
My spouse – whether its out of a misplaced trust-in/fear-of medical authority, or due to his non-argumentative nature (or the drugs; it could definitely be the drugs), or just simply the fact that his response to ‘overwhelmed’ is to freeze – cannot be left alone in a hospital. Because he does not advocate for himself.
By the end of that hospital visit, the damage done to his body by negligence on the part of the nursing staff was irreparable. An ill-placed needle (you don’t put an IV needle on the *inside* of the arm at the bend of the elbow, okay? you just.DON’T) pumping incorrectly-administered fluid destroyed his veins.* (This was discovered – later – by his vascular surgeon when he had vein mapping done prior to starting dialysis. The doctor was LIVID. To say I was right there with him is an understatement.)
But, anyway.
Lesson learned.
Not only is not a good idea to let him go alone to doctor appointments where major medical needs and being discussed and Big Decisions being made, neither is it wise to allow him to be by himself in the hospital.
And so we adjusted.
I’m used to wearing a variety of hats, and am generally comfortable taking on multiple roles. I do it within my familial structure, I do it for my job, and I do it within the boundaries of our marital relationship. So it came fairly naturally for me to change my hat when it came to my husband’s medical care.
Because he needs an advocate.
And really… As I said above: Most people do.
Why Advocacy Is Necessary
When you’re in a stressful medical situation – further exacerbated by exhaustion, confusion, fear, pain, physical and emotional distress, and medications that keep you in a state of not-with-it-ness** – you need an advocate.
*I* need an [medical] advocate. Or I will need one, should the occasion ever arise. And honestly, that scares me. Because my husband – bless him – is not suited to the role. We’ve discussed this, and really… Let’s just say I hope I never end up in the hospital. Because unless my mom*** can come and sit with me 24/7 (which is doubtful, considering the geographical distance and the expense), I’m gonna be on my own where advocacy is concerned.
If necessary, I’ll manage.
But after going through multiple surgeries with my spouse, I recognize the importance of having someone who’s not only *on* your side in hospital situations, but who is able to stay at your side. Because:
- people will bring the wrong food, regardless of dietary preferences and allergies noted on your chart, which can lead to Very Bad Consequences
- nurses will administer medications without thought — as in the laxative that the nurses kept trying to shove down my spouse’s throat regardless of the fact that the doctor’s orders actually said AS NEEDED and that my spouses DID NOT NEED IT
- inaccurate information re: medical history will be forwarded by word-of-mouth at shift hand-offs because reading a chart is apparently too difficult for everyone but the overseeing doctor
- etcetera, ad infinitum
…and someone has to be there to catch – and correct – these kinds of mistakes.
I have made it a point over the past several years, on my husband’s behalf, to do exactly that.
And, as of this posting – not that I want to end on a negative note, but reality is reality – I have nobody in my life who would be capable of doing the same for me.****
Do you?
2020 April A to Z Blogging Challenge: Letter A
*I know there will be people reading this who either {1} are nurses, or {2} think nurses are the bees knees. Perhaps some are. We’ve met a few — a very few — good ones. But we’ve also had some really bad experiences. So please just accept that as my truth and don’t take my frustration personally. (And please don’t get me started on the general unthinkingness of nursing staff. Seriously, don’t.)
**Anyone who has ever been in a hospital for even the briefest of emergency room visits will relate, I’m sure.
***She’s a momma bear, and she’s medically knowledgeable, and ain’t nobody gonna mess with her babies (even if her baby is looking down the barrel of [age] 45). (Which, given my upbringing, is kinda weird actually. But perhaps it’s a matter of “better late than never.”)
****Y’know… People who are preggers often have a doula. There should be something like that for everybody.
I’m in healthcare and I’ve seen some of these things. I wholeheartedly agree, people think that in a major medical situation that they can handle it on their own.. you can’t. Drugs get pushed and make you foggy and having someone there to take notes is essential.
Sorry if I sound preachy, but I’ve witnessed horrible things (usually unintentionally).
Yes, exactly!
And even outside of hospital/emergent situations… People get White Coat Syndrome, and quite often don’t understand or don’t remember what was discussed. I was completely shocked when I started going to the doctor with my spouse and realized that What He Thought He Understood about his appointment and What His Doctor Actually Said were two entirely different things. It was at that point that I said, “Okay, from here on out, you’re not doing this on your own.”
I do this with my father all the time. Or one of my sisters is there. He often doesn’t seem to hear what the doctors are saying. And my father is a very smart man with multiple degrees and two doctorates.
We had some very bad experiences with my mother before she passed. In fact those experiences led to her passing. So I know where you are coming from. But there are lots of incredibly good people in the medical field. Errors will happen and having a watchdog with you is never a bad thing. Stay well Mrs. Fever!!
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I know exactly what you mean. There’s just something about medical environments that causes highly intelligent people to suddenly not understand anything.
Your dad is lucky to have that kind of support from his kids.
Everyone needs an advocate at sometime or other. It isn’t easy to navigate healthcare on your own whether or not you’ve had surgery or whatever drug they give you. I’m a nurse and I’ve witnessed some stuff in healthcare that made my blood boil. However I would add that it isn’t always the nurse at fault and I have personally had to advocate for patients rather than bad stuff happen. Sadly listening doesn’t seem to be a skill people working in healthcare learn well!
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Yes, listening – and comprehension! – is so SO important! Especially in healthcare.
Over the last year and 1/2, I had the misfortune to make several visits to the hospital. The severity ranged from kidney stones to neurosurgery in my neck. My wife stayed with me in the hospital as much as she could. It felt very good to have her with me. Unfortunately, she is just not an advocate. When it comes to medical people she doesn’t seem willing to challenge them. Fortunately for me, I am extremely aggressive when it comes to dealing with medical personnel.
After the neurosurgery, I was effectively paralyzed from the neck down. I could use my hands and move my arms to a limited extent. I could also talk. Even under morphine, I was still able to make my needs known. My wife helped by carrying out my requests and dragging personnel into my room as needed. She also accompanies me on my medical visits. She does that because she loves me and knows I need her companionship. Also because she drives me. I developed glaucoma at the same time I needed to neurosurgery. I’ve had three eye surgeries to help with that. Fortunately, they were ambulatory. Again my wife was with me and supportive.
It was the worst year of my life. Even though she isn’t a particularly good advocate, her presence guaranteed things couldn’t get too far out of hand. Also, the medical center and hospital I use is excellent. I’ve been slowly recovering since last March when I have the neurosurgery and my balance has improved as has my ability to move my arms. I’m independent now for the most part. My wife still makes sure everything is right here at home and that I get the eye drops and other medicines I need.
Nothing is more important, I think than a loving partner. I have the best!
That’s so hard!!! All those hospital visits in such a short span of time!
I absolutely agree that the sense of companionship makes a huge difference, regardless whether or not advocacy is involved; I stayed at the hospital(s) full time for both of my husband’s last two surgeries, and I know it was a great comfort to him just to have me there.
I hope he is doing much better now.
Most time it is the small mistakes caused due to negligence that costs us. I’m sorry you had to go through that.
Anyways,
Happy Blogging 🙂
A is for Accomplice
https://thedreamgirlwrites.wordpress.com/2020/04/01/accomplice/
He had a kidney transplant last year in May. Since then – at least once his initial recovery time was over – he has needed very little in the way of medical attention. I still go to his Nephrologist appointments with him when I can, just to help him stay on top of his medications, but that’s all. Our situation is much more “normal” (as in, other people would find it typical) now. 🙂
That’s good to hear!
Take care 🙂
So, so, so true Fev. I’ve been my wife advocate for almost 50 years and seen the best and worst. She has managed her own medication for 60 years and understands the nuances of timing and doses for her condition. I can’t count the number of fights she’s had with nurses trying to get her med right and on time. I try and be there all day and double check every time and have found too many med errors – its scary.
The worst was mid 90’s under one of the best neurology professors in Australia. Using new technology (primitive by today’s standards) he determined that her condition was psychosomatic, took her off all her meds in just 7 days, including significant doses of benzo tranquilizers, and shipped her off to the psych ward. Well to cut it short, after 12 months of benzo withdrawal (hallucinations, etc), 3 hospitalizations when status, accused of drug overdose (after all, ‘God’ had spoken), stomach pumped, finally one brave psych registrar finally observed her convulsions and said “No way is this psych. Send her back to neurology”. A new EEG confirmed her original diagnosis and original meds restored. In the OP consultation with that b***** that did this, it was all I could do to restrain myself from punching his lights out.
We can advocate only so much. In serious complicated conditions, we just have to trust the ‘white coat’.
Sorry, sometimes I just have to get things off my chest.
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Oh, I’m so sorry! I can only imagine how awful that must have been — for her, obviously, but for you as well, not being able to stop the madness.
I totally understand the bit about fighting with nurses too. I try to stay calm and use reason, but when they are unreasonable (or power-trip-y), I’m a boxer in the ring and lemme tellya: she’s going down!
[Insert growly noise, here.]
I am insanely scared of doctors and the healthcare system because of all the mistakes that have been throughout my life, both when it comes to mental and physical health. Because of my trauma, I am scared of people in authority and power positions anyway. So i fake compliance even if I don’t agree with them, and do my own research and make decisions based on that. I am a very bad advocate for myself, I don’t fight either, I freeze or dissociate and just let things happen, especially in overwhelming situations. it is sad really because I don’t expect doctors or nurses to help, I expect that they will only make things worse. That has led to that I avoid all contact with health professionals unless it is sort of a life/death situation or I need a new prescription. I don’t even leave blood samples anymore, because nurses don’t listen when I tell them I am difficult to take blood from, and which veins usually work. It is a sad reality for me.
Back in the day, my ex husband always followed me to the doctors. And boy did he yell at them when they messed up. I felt safe knowing he is around, because he questioned, he stood up for me, and he dragged me to the right places. I didn’t always get the best professional care, but at least he advocated for me. My current partner is kind of unable to do that. He is softer, and while he is hovering over me when we are at doctor’s appointments (because he is scared I could get triggered), he doesn’t necessarily question things. He believes that doctor and nurses know what they are doing. I think that is experience based though. He is a healthy person who never needed emergency help, and I am someone who has been through some serious shit healthwise, emergency surgeries and long stays at hospitals included.
I think it would be really good if there were trained patient advocates that would take care of patients who don’t have anyone to go with them to appointments and such. Or people like me, with trauma, who don’t trust doctors at all, and when they are in the presence of one, they are scared to death that they are going to make things worse.
Such an important post!
I absolutely agree — having trained advocates in healthcare, who work on behalf of the patient (and not the system!) is a much-needed position. In theory, hospital-based social workers could take on that role. But I’ve not yet run across one who would be even remotely qualified.
I don’t work in the field of healthcare, but my job takes me into healthcare settings, and even though it’s not always “my job” to be and Advocate, I quite often take on that role on behalf of my clients because I can’t just stand by and let things happen. I get criticized for it sometimes, but I don’t mind; I work with marginalized populations and feel it’s essential to provide support in that way. Especially when nobody else can/will do so.
I totally ‘get’ your coping mechanism where medical professionals are concerned. I also ‘get’ your husband’s “the doctors know what they’re doing” compliance/acceptance. Part of that is cultural/social mores, I think. Another part of it – and I see this with my spouse and his *nodnodnod* responses – is age. Not in an “oldness” way, but in the fact that he was raised in such a different time. Doctors were not to be questioned back then. They still made mistakes – terrible ones – but patients were expected to do as they were told. The idea of being an equal partner in one’s own healthcare is a fairly new concept.
Having someone to help through such trauma is so necessary. My husband is one of the most capable people I know, but when he had to go to the A&E he was in so much pain he couldn’t deal with it by himself. And we had so many issues when my Nana was in hospital. This was an 80+ woman with bad hips so she couldn’t get up on her own and arthritis in her fingers and they would leave her food at the end of the bed and wonder why she didn’t eat it. However, when my dad was in hospital with cancer, the staff couldn’t have been more wonderful. Two different hospitals, two entirely different experiences.
Best wishes to you and yours.
Tasha 💖
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Oh I completely understand — and as with your Nana, the answers are sometimes so OBVIOUS.
Good gawd… where were you when I needed you. The same thing happened to me last summer… IV on the inside of my elbow… which left a huge bruise to match the other three bruises from the previous IV sites. I needed an advocate. I guess I did already, I survived. But post brings up some excellent points.
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Oh, I’m so sorry! Sometimes the most supposedly-helpful things (IVs, medications) can do so much damage. I would absolutely have advocated for you if I’d been there!
Thank you.. just knowing that is comforting.
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I think most are in agreement that the patient should have an advocate for them. When I had my motorcycle accident back in 2004, my beloved was there for me (thank goodness) The medical staff never cleaned my face from the mud, grass or tended to the scratches on my face. He demanded a towel so he could wash my face. I told him I was fine, but I wasn’t. He listened to me instead of going with his instinct. Being doped up I told him I wanted to go home and not stay in the hospital. Huge mistake.
He kept telling me I should stay at least overnight but I kept persisting to go home. We were in another town, too far to drive blah blah.
After my injuries became worse and he was more upset with himself he told me from now he will not listen to me if it goes against his gut and medical advice and he told me to do the same for him.
We learned a hard lesson at that time. Hopefully, we won’t experience anything like that again.
Reading your post my mind floated off to those poor souls who have no family or back when partners were not recognized as family and had no legal standing. Having to stand by and be helplessly watching their loved one suffer perhaps suffering alone. Very sad to think about.
Thanks for sharing.
And good luck on the rest of the challenge
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Yes, that fine line between following what the patient says (while under traumatic-thinking or under the influence of medications) and following medical recommendations can be a fine line to walk. My husband tends to default to “I’m fine” and “No, I’m not on pain” even when the opposite is true, so I tend to mediate those conversations (and/or just state flat out, “Give him some pain reliever please” ).
The overlooking of the human aspect is something that frustrates me. When my husband had surgery last year in February, it never occurred to anyone to clean him up afterward. I’m the one who washed his chest, neck, and face the next day to get the blue marker and iodine stains off his skin. (Weirdly, I am super vigilant and sometimes maternal like that when we are IN the hospital, but once we get home I am the world’s worst nurse!)
I am right there with you, we all need an advocate, especially in a medical situation. I was my mom’s when she was in hospital, and I can’t tell you how many times they brought her paracetamol despite me telling them EVERY time that she’s allergic to it. It took me using strong language before they finally put it in the computer and stopped giving it to her. As for my husband, I am always with him when he goes to an appointment, as a second pair of ears to listen, but also to remind him of things he needs to say, or I just say it myself. And also when I have questions, because my husband is one of little words and if asked, will not tell me the ‘full story’. Whenever I get sick, I will have three advocates at my bed, I am sure – my three children. Each one of them, even my autistic son – will most definitely be there with me, to help, to listen, to support, to advocate 🙂
Rebel xox
Yes — asking questions for yourself, I totally get that. And my spouse is tight-lipped too. So besides the fact that he misses a lot when he talks to the doctor, he never gives me the full story when he goes on his own.
I hope, like you say, that should you ever need a health advocate that you’ll have one (or three) in your children. 🙂
I’ve just brought my husband home from hospital after a mini stroke and carotid artery operation. The operation went well but I wasn’t allowed to visit while he was in ICU because of the Carona Virus. He was only back to the ward a short while and I was able to bring him home. The hospital was gearing up for the virus. The first patients with it were admitted at the same time my husband left. Training sessions were underway and nursing staff were understandably preoccupied. Now we are in isolation and he is recovering slowly – two steps forward, one step back. Being able to stay with your partner in hospital has changed with the advent of COVID-19 and who knows when things will return to norma;.
Things have changed due to the current situation, that’s true; I am fortunate that my husband’s surgeries took place during a time when it was okay for me to stay with him.
I hope your husband’s recovery at home continues to go well, and that you are both staying healthy at home.
I’ve been this person for a lot of hospitalizations for my husband. I’m at the point now where I respond to “I have to go to the hospital” with a sigh while grabbing a tote bag and throwing in electronic devices, chargers, a surge protector/extension cord, and earplugs. I try to be there for the long haul. I’m a veterinarian so I’m used to doctor-think. Nothing is more frustrating than getting news secondhand through a non-doctor person.
I like that term — “doctor-think” 🙂
And yes, I know exactly what you mean about getting secondhand news!
Well explained. I am a nurse but that doesn’t keep me from agreeing with you. I always welcomed it when watchful, well behaved family members were in attendance, because I was nearly always given more to do than I could accomplish in a shift. It’s because I’m a nurse that I know not to leave any of “my people” by themselves in the hospital.
I’m so glad you say that!
I mean absolutely no disrespect to the nursing profession; it’s stressful and exhausting and most of the nurses I’ve met are overworked already yet are expected to work faster/more. Their shifts are frenzied and their patients in hospital situations are often transient enough that they only see them a few times during a single 12-hr shift and then never again. I get it.
But I also ‘get’ that tiredness and stress are two factors that lead to mistakes, no matter what profession you’re in. And I want to save my spouse from (any more of) those kinds of mistakes. 🙂
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