Friday, March 25, 2011

The Expense of Learning (Part I)

When serious illness hit my child, I was desperate for knowledge. Thank goodness there was a lot of free advice to be had on the internet and (critically important) I had an understanding of how to evaluate the source and credibility of what I was reading. Even still, Googling for information is time-consuming and piecemeal. And there are bonafide experts on every condition imaginable who gladly offer all (or most) of what you need to know is one package… for a price.

The dilemma is knowing when it’s smart to take the offer. When is the knowledge worth the cost? I did a little sleuthing on some current caregiver-related offers and thought I’d share my process for deciding how and when to spend my money.

First, a friend forwarded to me an e-mail advertising the release of a book on caring for a loved one with Alzheimer’s, put out by Johns Hopkins University. Price - $50.

Next, I came across a blog mentioning that the New York Times offers educational courses and an upcoming topic is eldercare. For a cool $90, there’s a two-week online course beginning at the end of this month.

Although I have no affiliation with either Johns Hopkins or the New York Times, I will say I’ve been a fan of Johns Hopkins medical center ever since we took our child there for an enlightening second opinion six years ago. That, along with their venerable reputation, is a point in their favor. Next stop, my favorite search engine to see what it turns up about the Johns Hopkins author. Turns out Dr. Peter Rabins also offers videos aimed at Alzheimer’s caregivers, so kudos for multi-media experience and the chance to see a snippet of him in action. Finally, he turns up on Amazon (with book excerpts and reviews) and at my local public library. Checking out a previous title might be the best indicator of whether that $50 will be well spent for his new book.

The New York Times webpage gave surprisingly little information on the content and format of the class. But, again, one would hope that a distinguished institution which stakes its reputation on providing a high quality product would come through – especially for that price.

Here at Patient Loving Care, we hope to debut a (reasonably priced) e-book in the near future. And we promise it will be well worth your while.

Meantime, our next post will be the Expense of Learning Part II: the nitty gritty of analyzing how and when it’s smart to invest in medical caregiving knowledge.

Sunday, March 13, 2011

Marriage: It's Really Hard

My husband and I recently sat together over a glass of wine and took stock – we’re rounding third and headed for home on the mortgage; we’re proud parents of one successful college student and his younger sisters, all of whom dream big, just like we taught ‘em; we’ve both managed to stay gainfully employed through this Great Recession. Then we chuckled at how we’ve lived a wonderful life together, but one completely different than what we imagined twenty years ago this week when we said “I do.”

Nobody told us “in sickness and in health” doesn’t just apply to the bride and groom – it’s a catch-all phrase for the stress put on a marriage when nursing elderly parents through cancer (and ultimately losing one of them to the disease) and for the enormous drain on family resources caused by a child’s chronic medical condition.

Our son’s health challenges were no small part of our life together gone off script. Thankfully, our marriage survived, strengthened in fact, through the adversity. What doesn’t kill you, as they say, makes you stronger.

And so with hard work and lots of grace, we’ve survived and thrived.

Happy anniversary, honey.

Thursday, March 3, 2011

Needle & Thread

Are you crafty? I have this weird compulsion to sew even though the result is rarely anything that’s publicly wearable. For all my efforts, it never fails that my garment “looks a little home-sewn” as they say on Project Runway.

But that doesn’t stop me from envying those who can work magic with fabric – I just counted up and I have 133 sewing blogs bookmarked! If you find sewing or needlework calming, the internet is a goldmine for advice and projects when you need to take a moment from chaotic daily life for something you really enjoy. And it’s a great resource if you’re looking for projects that can make life easier (or just more fun) for someone undergoing treatment.

A quick online search turns up a number of free online tutorials for chemo caps and preemie blankets. But look a little deeper and you’ll also find instructions to make hospital gowns (who wouldn’t want to trade those dreadful, flimsy hospital-issue gowns for something personalized and snazzy!) and even a knitted wig (ok, this one was a Halloween project, but I told my daughter if I ever find myself in the chemo ward, I’d like her to make me one).

A very special blog I have bookmarked is SewPaula. This one is written by the mother of a disabled child who is expert at adapting patterns to accomodate her daughter's wheelchair along with modifications to access ports and her feeding tube. Paula is a blessing to her children (she sews beautiful clothes for all her kids) and to other sewists looking for directions on adapting garment patterns for special needs.

So don’t fear Heidi Klum’s brutal reality show critiques like those running through my head. Whether you craft for yourself or for others, take heart with a few words of wisdom on what they used to call “womanly arts”…

“A creative mess is better than tidy idleness.”
                                                            ~Author Unknown

“Take your needle, my child, and work at your pattern; it will come out a rose by and by. Life is like that - one stitch at a time taken patiently and the pattern will come out all right like the embroidery.”
                                                                    ~Oliver Wendell Holmes

“Hem your blessings with thankfulness so they don't unravel.”
                                                                                 ~Author Unknown

(photo courtesy