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A caregiver’s tips on navigating the healthcare system

Part 1 of 2 My father has dodged death more than once. So many times, in fact, that we’ve lost count. He survived a heart attack at age 36, and two open-heart surgeries by the time he was 38. By the time he was in his 50s, he suffered from debilitating, chronic pain as a result of damage to his saphenous nerve from his bypass surgery and underwent a pioneering thoracotomy heart valve repair. In his 60s, he survived a rare epidural abscess that resulted in a four-week hospital stay after his first of many complex spinal surgeries. Now in his mid-70s, he’s facing a daunting trifecta of heart failure, chronic inflammatory demyelinating polyneuropathy (CIDP), and chronic obstructive pulmonary disease (COPD).

Given the above, my family has had more than our fair share of interactions with the US health care system. Our latest (ongoing) encounter, which has included two heart catheterizations and a stent placement at a world-class hospital, has been particularly eye-opening. Since I happen to work in health communication and patient advocacy, I feel compelled to share some key takeaways with patients, their families, and the health care professionals who treat them.

1. Patients need someone – be it a family member or friend – who can advocate for them.

While we’re enormously grateful for the surgeons, doctors, nurses and other health care professionals who have helped my dad survive, the most important member of his health care team is my mom. She has stayed by my dad’s bedside for weeks at a time; caught countless mistakes with his many medications; flagged serious infections before they show up in his bloodwork or x-rays; advocated non-stop for visits with appropriate specialists or hospital minders to watch my dad overnight; and kept track of his vitals, diet, medications, side-effects, and follow-up appointments.

2. Patients (and their advocates) shouldn’t be afraid to speak up, and health care professionals need to listen rather than dismiss their concerns.

I know health care professionals, particularly those who work in a hospital, are busy and overwhelmed. Nonetheless, when someone tells you that their loved one isn’t acting normally, this should be taken seriously. During the latest hospital stay, I believe my dad’s delirium was chalked up to normal old age and/or hospital-induced delirium. My mom was the one who discovered during some late-night research that it was most likely a result of withdrawal from a drug that was removed before my dad’s procedure and hadn’t been started up again. It took us days to get a consult with a psychiatrist who confirmed our assessment. By that time, we had thankfully already implored the Physician’s Assistant to restart the medication. Sure enough, my dad’s mental state improved quickly. In the past, my dad has displayed confusion as the first sign of a systemic infection, which we’ve also had to alert his medical teams to. The bottom line is that you know your loved one best and have to speak up if something about their physical or mental status doesn’t seem right.

3. If you have a loved one who is hospitalized or sick, don’t underestimate the power of online and offline networks.

I have never been more awed by the willingness of both friends and strangers to jump in to help. I have frequently, and somewhat desperately, posted on local Facebook groups asking all sorts of questions. While they can’t give direct medical advice, complete strangers have given me the names of doctors, aides and home nurses, and more than one local doctor has responded to my posts with advice about navigating the health care system and their perspectives on various hospitals. Many have been willing to hop on the phone. Friends who work in health care have offered to get involved and one even made time to see my dad right away, given the urgency of the situation. I know not everyone is in a position to pull this lever, but most everyone can join disease or condition-specific support groups or neighborhood Facebook pages, and ask, ask, ask.

4. If you’re a patient, or supporting someone who is, take notes, do your own research and write down your questions.

Unfortunately, many health care professionals have not necessarily been trained in health literacy best-practices. Fortunately, I’ve been able to act as a translator for my parents when they need it, but my mom takes real-time notes so we can reference the doctor’s terms and instructions later. While I would never suggest using ChatGPT for actual medical advice, if you aren’t familiar with medical jargon, it can be helpful in explaining procedures and terms in plain language. In addition, my family collaborates on keeping a list of questions as they arise, which we print out and bring to appointments so we don’t forget to ask anything in the heat of the moment.

While these tips

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Apparently here in CO we know how to ADHD.

I am on pinterest a lot finding things to do, make, eat, and essentially everything else you have ever heard about that site. I even have my own personal collection of pinterest fails (no they are not on the internet). One of my favorite things that pinterest seems to know about me is the extremely goofy stuff that I can't help but laugh at. Apparently my golden hour for this is bedtime. As anyone who has been diagnosed with ADHD or any other condition and those trying more self care probably know phone usage in bed is a big no no, but hey I haven't spent the majority of my life as a rebel for nothing. As delirium sets in I fall down the meme/dumb video hole frequently. This has gotten me kicked out of bed frequently because I end up laughing so hard that I shake the bed and make my wife nauseous. I have come across a town center in my home state that uses their sign as a letter board that has had me in tears a few times, though it wasn't until a few days ago I saw one that really hit home. After all the years I have spent feeling bad about not completing projects and finally realizing the cause (not the fix yet, but I am still new) I can laugh about it and this sign surely helps! Maybe it's our mountain air that leads to a lack of oxygen that gives us our neuro diversity or maybe like science says it is genetic, but people here in CO have your back!
#ADHD #neurodiverse #funny #Meme

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I miss my best friend #dementiasucks #onlychild #Caretaking #alone #alzheimers

My best friend is my mom. We have been
2 peas in a pod my entire life. In March she had rapid onset vascular dementia with terrible delirium. My dad and are caretakers. Within a matter of 3 weeks I lost her to another reality. We have gotten her out of the delirium, but she has STM loss, horrid anxiety, latent anger and a lack of filter. I can no longer share what is happening with me because I trigger her.

I am an only child, and my dad and have a troubled relationship when it comes to communication and life. He doesn’t listen or talk to me and he said “he was sorry I was alone, but he doesn’t want to talk.”

I would give anything to have her back laughing, and reacting like she used to. I just miss her sooo much.

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...held by helium.

…held by helium.

revive my soul.

a refining work continues its need to take place.

there’s no hiding that fact.

there’s impurities galore that keep rising to the surface,

in the ebbs and flows of life’s furnace.

Your promises are a trustworthy pact,

despite the circumstances that I daily face.

make me whole.

sparkle my eyes.

pure silver dripping in the tears I shed,

my requests rise to You.

the light of days and nights and scars

penetrates the hopelessness of prison bars.

no matter what I say or do,

I need to trust You rather than my head.

truth be wise.

hands that move,

rise up skyward as if held by helium,

searching beyond earth for reward.

You alone are my inheritance.

help me hold You in complete reverence.

taking roads least explored,

grace that covers the depths of my delirium.

find my groove.

lift me up.

unfailing love is the ultimate blessing.

come to my rescue.

I need to sing because You are good.

give me the courage to act. understood?

my body is Your venue.

woo me with Your righteous caressing.

fill my cup.

© Mark Bryant. May 7th, 2021.

[Psalms 12-17, 19-21]

#MightyPoets

#overcome

#light

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The importance we give to #MentalHealth

Why didn't I help him earlier? What do his mental disorders mean? Why didn't I realize that he was having a hard time?

I asked myself these and many other questions related to mental health, after a very close friend in a dance class threatened to kill and cut his teacher with a knife. When this happened I felt in a state of shock, I could not react and I had pain and anguish in my chest. Then I began to reflect a lot about my friend's behavior patterns and I understood that I always downplayed possible attitudes that spoke of his behavior and consequently of his mental health. I think that we must be aware that a person may be affected by some disorder or mental illness and not know it. I concluded that I could have done something and helped my friend with a little more information on the subject. What happened to him could have been avoided if he had received the help he needed to treat his mental disorders in time.

Most mental illnesses do not get better on their own, and without treatment they can get worse.

Some examples of the signs and symptoms of mental disorders include the following:

Feelings of sadness or discouragement

Confused thoughts or reduced ability to concentrate

Excessive worries or fears or intense feelings of guilt

Ups and downs and radical mood swings

Withdrawal from friendships and activities

Significant tiredness, low energy, and sleep problems

Disconnection from reality (delirium), paranoia, or hallucinations

Inability to cope with the problems or stress of daily life

Problems understanding and relating to situations and people

Problems with alcohol or drug use

Major changes in eating habits

Changes in sexual desire

Excess anger, hostility, or violence

Suicidal thought

Buenos Aires province:

Mental health: 0800 222 5462

Information supplied by the representatives of the Federal Council on Disability.

Bibliography: Mayo Clinic Family Health Book 5th Edition

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Dealing with a Depressive Relapse: My Story

As someone who has suffered with depression for years, I know firsthand the struggles it comes with. It is such a complicated illness that is hard for others to understand unless they are dealing with it too. I do not wish it upon anyone, but I do wish that people understood the complexity of it and difficulties of having it. I first got treatment for it in 2017, after secretly dealing with it for years and finally opened up in late 2016 about it. Yet, it became difficult looking for help and so it took a toll. I handled my depression through self-harm (which I do not condone) and found it as a relief but a brief one. Then it was back to my head all over again.

After several months of therapy, I felt like I could manage life better… or at least numb it. I never really focused on my mental health during my sessions because I was so worried about getting over and out with therapy. I was seeking help yet escaping it too. I was able to manage myself for 3 more years until early 2020. Being at home more often and less at college for my second semester of my first year started taking a toll on me. I felt loneliness, anger, sadness, etc. All because my problems started coming back and becoming greater. I realized then that I was going to deal with a tough battle for a second time. It started with losing sleep slowly but surely, feeling complete lack of energy and motivation, low appetite, etc. My emotional issue was creating physical ones. I became an insomniac by May and by July I was a compete wreck. This caused my dad to admit me to the hospital, and be observed for two and a half days. My first day while in the ER I suffered from delirium and started rambling and panicking. I was nonstop apologizing to my dad about everything and repeatedly asking for a hug.

After my two and a half days in observation, I was then taken to the psych ward and admitted for a week. My experience there was not the best, but I did meet some great people who had other stories and the staff were kind to me. The entire experience showed my family the toll depression took on me and how hard it is dealing with it. It taught me to open more and do not brush off my issues because they are in fact valid and may become a greater problem later on. Suffering from a depressive relapse was horrible and still is but I am growing as a person and learning ore about myself from it. That I am strong, intelligent, worthy, and more. And so are you.

I want to thank the entire staff at Jacobi Medical Center for their extreme care while I was there on my road to recovery.

Thank you.

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DATURAS

Don’t worry. I didn’t touch it. It’s highly poisonous. It goes by many other names - thornapples, jimsonweeds, devil's trumpets, moonflower, devil's weed, hell's bells...
Datura plants have been most often associated with witchcraft and sorcery, or similar practices in many cultures.
When taken internally, it can cause respiratory depression, arrhythmias, fever, delirium, hallucinations, psychosis, and even death.
It’s pretty to look at though, isn’t it?
Devil in disguise. Stay safe.
#CPTSD
#obsessivecompulsivedisorder
#Depression
#childhoodtraumasurvivor #childhoodabusesurvivor #incestsurvivor
#anxiety
#rapesurvivors #suicidesurvivors
#selfharm
#mentalhealth

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