Comfort in Crisis

Looking around at the medical status of people around me I can’t help but notice how isolated we become in moments of crisis.

A new diagnosis, an emergent illness, the drudgery of chronic illness all lend themselves to a unique type of isolation for both the ill and the healthy caregivers around them.

I don’t know what we do about this.

A free ebook from that I helped write

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 for support and care.

Link Love and Commentary

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.



Caregiving and making things

I talked with Denise today on her web radio show (the link goes to the podcast file).  I am also volunteering with her in a couple of capacities and I’m going to get a chance to do some writing for her.

Who is she?  She is from and and she does a lot of work with people who are caregiving and when that process ends she helps them transition out of their caregiving role.  She is also charming and interesting and I am having a blast getting to know her.

For people who are just entering a caregiving situation it is important to start to build your community because there are days when you love your caree but don’t like them much.  Their are days when people will give you a pitying look and tell you that you are a saint when what you want is a shower and to listen to your own music really really really loud.

I find the work she is doing, and the dedication with which she works at it very inspiring.  Go check it out, and sign up if what you need is a little support as you become a caregiver.


Important Questions

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.