When a new diagnosis enters a family it is tough to know what to do.
Denise, G-J, and I have put together an ebook with some helpful essays, hints, and documents to help caregivers and carees get their feet under them.
Curious about it?
Denise says – The cure for the fear of mortality is to make the most of the moments. Live for today. Tomorrow, you’ll be so glad you did.
G-J says – A new diagnosis can me an lot of appointments, especially in the beginning. Prepare at least a day in advance for any scheduled medical visits. It helps to have a bag designated as the one you take to appointments so you don’t have to think about what to use each time. This list will help you pull together all the items you will need.
I said – Hospitals have a variation of most of most things that a town has. They also have their own personalities and social norms. As a guest in a hospital it can be a little like getting dropped in a slightly foreign country. You recognize all of it, but it doesn’t feel natural to move around in. So here are some questions to ask that will help get you oriented when you are in a new hospital.
And then we keep saying other stuff. Checkout caregiving.com for support and care.
I have been keeping a few articles open in tabs all week because I wanted to bring them together…
#1 – AARP talking about how (and what) to organize as a caregiver. Excellent group of things and I cannot imagine what I would add.
#2 Turning web words into audio files. Nick is talking specifically about journal articles but I don’t think the web reader would be that picky. Great resource for people who want to stay connected to news and hobbies but can no longer comfortably read or sit at a computer.
#3 Shared Medical Appointments. Build community, get questions answered, hear both clinical and layperson suggestions for adaptation – what more could you want? Of course, then the other people in the room know you have a specific condition but that isn’t all bad.
#4 Self-Management. A logical step in healthcare as folks become more interested in maintaining their own health. Sad that it still seems like a mystery and a clinical inconvenience for some folks but it is just what happens as patients get educated and empowered.
Now, truth time, wordpress ate this once and I really hope it doesn’t gobble it up again because as much as I love these links my generally soapbox commentary just keeps getting smaller every time.
That sounds like I’m out sick – but I’m not.
The article “When You Swallow A Grenade” looks at the microbe impact of taking antibiotics. It talks primarily about about it in a broad, layman’s way – just as they should. Carl Zimmer does a great storytellers job of talking about what happens to a persons entire body chemistry when they are on antibiotics. (Ladies, you know what we’re talking about here, right???)
It leads me to a minor confession – I am selectively dishonest about taking antibiotics that have been prescribed for me.
IF I am prescribed antibiotics and in the conversation with the MD/PA/NP it appears to be an actual *infection* of some sort, I will take them – as prescribed – every last one of them. I generally add a probiotic / yogurt / kefir but not in immediately adjacent to the antibiotic.
IF the doctor mumbles something about a virus, or worse, appears to walk in the door with a prescription in mind — theeeeeeeen, I’m much less likely to get the prescription filled. I am perfectly comfortable with feeling like crud while my body works it out on it’s own.
The other confession – I practice poor communication because I do not turn down the prescription.
I do not engage my MD/PA/NP by saying that I’m not planning on taking it, in doing so I don’t give them the chance to tell me that it is important, or that it is fine, or any of that other stuff that they might want to say. I never open that door.
It isn’t completely my job, obviously, I wish MD/PA/NP felt more comfortable telling patients to rest and take care of themselves in a way that doesn’t involve antibiotics – but they aren’t. I believe in patient engagement and a patient being a partner in their care … I suppose that next time it means I’ll need to own my choices and let them know when I’m not going to fill a prescription. I want to open that door.
Ok, this was a nearly perfect article.
It highlights the questions that patients often don’t ask. They are fantastic questions and will absolutely bring a patient closer into an engaged state with their doctor.
My favorite (ok, that isn’t fair – it is like picking a favorite child) … but a great one –
6. How will I know my treatment is working?
Lovely, simple, important. Such a tough question for some things (high blood pressure, etc…) but still – giving patients a clear sense of how it will FEEL when they do what they are being asked to do and giving them a chance to contemplate that in their life before they walk out the door.
Imagine being a doctor and talking about taking a diuretic having a conversation about the ways they will feel better but also talking about the urgency issues. Then maybe hearing the patient think out loud about when they would take the pill (right before the commuter train? at bedtime?) and being able to suggest what other patients have tried.
I really enjoyed what I read, and I’m passing it on to the caregivers I know.
I wish I had known “medical historian” was a thing a long time ago because it is AWESOME.
Lindsey Fitzharris at The Chirurgeon’s Apprentice is showing off some great medical history stuff and she is getting ready to launch a Kickstarter campaign for show development.
Part of the fascination with medical history, for me, is the false sense that we have made a lot of progress from the leech days. I don’t think we really have, and in so many ways we are too quickly using up what progress we have made.
I can imagine in 200 years talking about a Golden Age of Antibiotics when we had plenty of variety and they generally worked for what we needed them for. I don’t think that will be forever true. I think history will show us being too self-absorbed and ignorant, to wasteful of our options for treating infectious illness.
I hope that someone is figuring out what we will do instead.
Anyhow, medical history is neat, Lindsey’s blog is a lot of fun, and a little bit creepy – which is just what you want in a medical history blog.
I am working on a new theory.
I propose that, lacking immediate mortal threat, there is a discomfort with medical developments that happen after a person reaches adulthood.
My father’s youth pre-dates antibiotics. He was raised at a time where doctor and G-d were nearly synonymous, and when his doctor tells him to do something he does. With one exception – pills for chronic diseases. He just doesn’t seem to put any stock into taking a tiny pill to manage something that doesn’t create a negative sensation in his body. Pills are something to be taken briefly to fix the thing that sent you to the doctor in the first place … just like when he was a young man.
Being an American woman, there have been long chunks of time in my life where I took daily medications, I could understand their importance and assumed the lack of symptoms were proof of effectiveness. If someone told me to take a pill to not have a stroke, I’d do it.
It took me a LONG time to come around on the flu shot. I got my son the chicken pox shot even though I think it is dumb. I expect by the time he is old enough the HPV vaccination will be mandatory for boys as well. This isn’t about debunked theories, this is about the newness of the vaccinations. The fact that the chicken pox is boring and uncomfortable but not life threatening for most of us. The fact that the flu shot isn’t well developed enough yet to be effective enough to save people the worry about getting sick.
It is because it didn’t exist when I was a young adult … so I am distrustful of it.
So is it just a thing with me and my family, or is it true for you as well?