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.

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.

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 tvguide.com)

Foody Friday: Eating Affordably

Money is bound to be tight for families dealing with a health crisis or chronic illness. So once hospital visiting hours are over for the day or you're coming home from yet another treatment appointment, you're caught in a trap: too exhausted to cook but too broke to eat out yet again.

Whether you like to cook, or view it as a nothing but a necessary chore, now is not the time to skimp on meals. Sure, your stomach is too tied up in knots to enjoy a meal, but neglecting nutrition is one of the worst things you can do when your energy is already sapped by health worries.

I'm a fan of Rachael Ray (yeah, I know... you either love her or you hate her). But even if you're not, you can find many of her famous 30-minute meals for free online. I also like 30 Day Gourmet for meals that freeze well. If you have some downtime to browse, check out the American Dietetic Association page with tips on eating right affordably.

Meanwhile, try this recipe that's one of my favorites from a long-ago issue of Family Fun magazine. What's great about chili is you can leave out anything you don't like and add what you love. This is the quickest chili recipe I've ever seen - it says to simmer for up to two hours, but I've served it after only 20 minutes on the stove. It's great right out of the pot, even better left over, and freezes beautifully.

Chili (from Family Fun Magazine, circa 19??)

2 15-oz. cans kidney beans
1 medium green pepper
2 medium onions
2 or 3 cloves garlic
4 Tbsp. olive oil
1 ½ lbs. ground beef
1 ½ to 2 Tbsp. chili powder
1 ½ tsp. cumin
1 ½ Tbsp. Flour
3 cups chicken or beef broth
1 28-oz. can crushed tomatoes
1 Tbsp. worcestershire sauce
2 Tbsp. steak sauce
½ to 2 cups additional stock, tomato juice or water, if needed.

1.) Brown ground beef. Remove from pan.

2.) Pour 3 Tbsp. olive oil into skillet and add diced peppers and onions. Saute on medium heat for six minutes. Stir in garlic and cook 2 minutes more.

3.) Sprinkle chili powder, cumin and flour over the vegetables and sauté for one minute more, stirring nonstop. Stir in 1 cup broth and cook for one minute.

4.) Put browned meat in stock pot and add contents of skillet, along with crushed tomatoes, Worcestershire and steak sauce. Stir in remaining 2 cups of broth and beans.

5.) Gradually bring chili to low boil, stirring occasionally. Reduce heat slightly and cook chili, covered, at gentle simmer for 1 ½ to 2 hours, stirring occasionally. When done, the chili should be thick, but still somewhat soupy. If it starts to get too thick, add some extra stock, tomato juice or water.

6.) Serve chili in soup bowls, garnished with a dollop of sour cream, a sprinkle of cheese and jalapeno pepper, if desired. Makes 8 or more servings.

Happy Generosity Day

While taking a break from scavenging for the dark chocolate caramels in the truffle box today, I came across a news item from Time Magazine about rebooting Valentine's Day as Generosity Day. I've always loved the idea of random acts of kindness and paying it forward, and this idea for celebrating today's holiday in a seemingly unexpected way reminds me of caregivers and their loved ones who are already so familiar with giving generously each and every day. Creator Sasha Dichter says "...one day of sharing love with everyone, of being generous to everyone, to see how it feels and to practice saying "Yes." Let's make the day about love, action and human connection..."

So however else you may be observing the modern day Feast of St. Valentine, take a moment to think of a simple way to mark Generosity Day as well.

And to you... the caregiver who strengthens human connection every day; the patient, whose love and perseverance inspires all who know you; the doctor or health professional who incorporates the emotional needs and family ties of patients into every consultation you give...

Happy Valentine's Day from patientlovingcare.com.

Everybody Loves a Freebie

Everybody loves a freebie. And there are times in life when you really deserve a freebie. So today we're sharing a list of giveaways for patients undergoing treatment, and we’ll add more as we come across them.

Look Good Feel Better
Look Good Feel Better is perhaps the most familiar service donation program for patients - you’ll see it promoted periodically in fashion magazines. Since 1989, this program offers makeovers to women undergoing treatment for any type of cancer. The organization connects patients with volunteer aestheticians who teach them beauty techniques to help manage the appearance-related side effects of cancer. What we didn’t know is the group also offers an informational website for men undergoing treatment and runs a website plus hospital-based group programs in 18 cities for teens of both genders who must deal with the appearance, health and social side effects of cancer treatment.

Cleaning for a Reason
This foundation coordinates with professional residential maid services to offer general cleaning to cancer patients once a month for four months as a way of giving back to their community. Because they are a small operation, the Texas-based Cleaning for a Reason accepts a maximum of 50 applications each day, beginning at noon Central Time, Monday through Friday. Although the organization is represented in all 50 states and Canada, cleaning services are available in limited geographic areas. The group recommends clicking on their interactive map before applying to be sure there is a participating cleaning service in your area.

Stowe Hope
In the highly competitive travel and tourism business, this idea is genius: plan a wellness conference after ski season in Stowe, Vermont, and offer free hotel rooms to cancer patients. This year’s Stowe Hope event is April 29 to May 1, with registration opening March 1. Billed as retreat and outreach experience, it promises education, enlightenment and fun. The weekend is filled with doctor-led seminars, hands-on workshops and other opportunities addressing physical, emotional, spiritual and financial aspects of this broad disease. The area’s lodging association members donate hundreds of rooms each year to new attendees and their loved ones, according to the organization’s website.

Corporate Angel Network
Far fewer people may need a free plane ride to access medical treatment than say, need their kitchen floor mopped (see Cleaning for a Reason, above). But for those who do, this program could be the difference between medical progress and the status quo. The Corporate Angel Network offers empty seats on corporate jets to cancer patients and companions. Patients must be ambulatory and not in need of medical support while traveling. Eligibility is not based on financial need, and patients may travel as often as necessary. Patients must e-mail or call toll-free within three weeks of their appointment at a recognized cancer treatment center, and have back-up plans with a travel agent or airline, as Corporate Angel Network cannot guarantee a flight will be available to match your traveling requirements.

Free Communication Tools… Priceless
And of course there’s this: the Patient Loving Care Doctor’s Memo. We think you can’t put a value on having an effective conversation with your doctor, so patientlovingcare.com offers a free downloadable guide that can be typed in, saved on your computer, printed out and used again and again. The PLC Doctor’s Memo download package will walk you through how to collect your thoughts, jot them down in a clear format and present them to the doctor in a way that will lead to meaningful conversation so you can both understand your condition and find solutions to problems you're encountering.

Do you deserve a freebie? You bet.

Find Your Lifeline, Sailor - It's Out There

It’s been months – probably way over a year – since I’ve logged into the online parent support group that was my lifeline through the worst of my child’s health crisis. During those times, it was a godsend (and an inspiration for beginning this blog).

After really bad days, when my child was finally sleeping peacefully, I would scroll through posts. Drained emotionally, it was somehow comforting to read about other people working through their own daily struggles.

I felt very alone during those years, when friends and neighbors couldn’t fully understand why we could never commit to socializing until we saw how our child felt that day – and even then would likely cancel at the last minute when things took a turn for the worse. At least online, someone else was also home at the computer, having rushed out in the middle of the school play, or abruptly left the ballgame, because of a sick child.

I also felt vindicated to see other parents searching for demanding improved quality of life for their child, over and above simply counteracting the physical symptoms of the illness. That issue alone made the parent message board indispensible. It filled a knowledge gap that our healthcare team didn’t seem to be able to address.

Having help is critical during a health crisis or chronic illness. But even the support of family and friends to cook meals, take a turn sitting with the patient, to lend a shoulder to cry on, doesn’t bring the same comfort as sharing thoughts with someone living the same bad dream. Sharing the experience– even with a stranger online – makes getting through each day (or even each hour) that much easier to accomplish.

Whatever condition is disrupting your life, do a search for online support. It’s there 24/7 and will open your world to all kinds of possibilities for managing, coping, and healing. Most likely the best place to start is the national non-profit dedicated to your circumstances (and every medical condition has one). Click here for a list – and feel free to drop a line to add any we may have missed.