Round 2: The Family

Well, my job is totally consuming, my husband is working full time, we have a daughter living at college and a seventeen year old son that is finishing up his senior year and getting ready to begin college. There are all the end of year activities of his senior year and just trying to keep up with life. Anyone who has gone through the experience of your child graduating high school and going away to college knows the time and stress involved in this. The craziness starts around Feb. when the FAFSA (Federal Financial Aid) needs to be submitted. After that, the decision is made as to what college will get your child.

Around this time my mother started to complain about occasional pain in her upper arm and into her jaw. Knowing these are cardiac symptoms we quickly encouraged her to see her cardiologist. Within a month (in March) she went in for a heart catheterzation. Before she went in, we heard the patient in the next cubical had to stay because she needed to have open heart surgery. I silently bowed my head and said a prayer for her and was thankful that my mom was not in the situation. Within minutes my mother went in for the procedure and within an hour, little did we ever imagine, those words that were spoken to her neighbor were being spoken to her. Yes, my mother was going to stay in the hospital and have open heart surgery within 48 hours. I remember feeling numb and thinking, "No, this is not a good time." Soon I realized that there really is no good time for this. She went to her room and a parade of doctors came through her room and she had more tests than one could imagine. My brother came home to see her and stay with us for the long wait of surgery and beyond. Once again, our family was all together to deal with this crisis together. What a wonderful support system! I had memories of her hospitalization in 2007 when we thought we had lost her(see post dated Feb. 21, 2010). Going in to see her, the sound of the ventilator was very loud and all the tubes, gadgets and IV's were overwhelming, even for a nurse to see. What would be in store for us? Would she be able to breathe on her own again? Well, no time is the right time, but for some reason we manage to make it work because the power of love gives us the ability to do more than we can imagine.
She is now home. Weak and recovering, but around those that love her the most-her family!

Reverent and Irreverent Mother’s Day Prayers, Equally Sincere

Some time ago, when a friend was expecting her first child, I came across a beautiful prayer online. I formatted it with a picture, framed it, and proceeded to make everyone at her baby shower cry. I’ve given it to every pregnant friend ever since. (What I don’t know is who wrote it. If you’ve got any information, please let me know.)

What a perfect thing to post on Mother's Day.

Then last week on Facebook, someone posted Tina Fey’s prayer for her daughter. If you’re not one for irreverence, please click away about half way through this post. If you stick around, and if you have a daughter or a son, you just might find yourself laughing and crying all at the same time.

Happy Mother’s Day from PatientLovingCare.com.

Special Angels

Author unknown

Once upon a time there was a child ready to be born.
So one day he asked God: They tell me you are sending me to earth today
But how am I going to live there being so small and helpless?

Among the many angels, I chose one for you.
She will be waiting for you and will take care of you.

But tell me, here in Heaven I don’t do anything else but sing and smile
And that is enough for me to be happy

Your angel will sing for you and will smile for you every day.
And you will feel your angel’s love and be happy.

How am I going to be able to understand when people talk to me
If I don’t know the language that men talk?

Your angel will tell you the most beautiful and sweet words you will ever hear
And with much patience and care your angel will teach you to speak.

And what am I going to do when I want to talk to you?

Your angel will place your hands together and will teach you how to pray.

I’ve heard that on earth there are bad men. Who will protect me?

Your angel will defend you even if it means risking its life.

But I will always be sad because I will not see you anymore.

Your angel will always talk to you about me and will teach you the way
For you to come to me even though I will always be near you

At that moment there was much peace in Heaven
But voices from earth could already be heard,
And the child, in a hurry, asked softly:
Oh God, if I am about to leave now, please tell me my angel’s name.

Your angel’s name is of no importance.
You will simply call her “Mom.”

Tina Fey’s Prayer for her Daughter

First, Lord: No tattoos. May neither Chinese symbol for truth nor Winnie-the-Pooh holding the FSU logo stain her tender haunches.

May she be Beautiful but not Damaged, for it’s the Damage that draws the creepy soccer coach’s eye, not the Beauty.

When the Crystal Meth is offered, May she remember the parents who cut her grapes in half And stick with Beer.

Guide her, protect her

When crossing the street, stepping onto boats, swimming in the ocean, swimming in pools, walking near pools, standing on the subway platform, crossing 86th Street, stepping off of boats, using mall restrooms, getting on and off escalators, driving on country roads while arguing, leaning on large windows, walking in parking lots, riding Ferris wheels, roller-coasters, log flumes, or anything called “Hell Drop,” “Tower of Torture,” or “The Death Spiral Rock ‘N Zero G Roll featuring Aerosmith,” and standing on any kind of balcony ever, anywhere, at any age.

Lead her away from Acting but not all the way to Finance. Something where she can make her own hours but still feel intellectually fulfilled and get outside sometimes And not have to wear high heels.

What would that be, Lord? Architecture? Midwifery? Golf course design? I’m asking You, because if I knew, I’d be doing it, Youdammit.

May she play the Drums to the fiery rhythm of her Own Heart with the sinewy strength of her Own Arms, so she need Not Lie With Drummers.

Grant her a Rough Patch from twelve to seventeen. Let her draw horses and be interested in Barbies for much too long, For childhood is short – a Tiger Flower blooming Magenta for one day – And adulthood is long and dry-humping in cars will wait.

O Lord, break the Internet forever, That she may be spared the misspelled invective of her peers And the online marketing campaign for Rape Hostel V: Girls Just Wanna Get Stabbed.

And when she one day turns on me and calls me a Bitch in front of Hollister, Give me the strength, Lord, to yank her directly into a cab in front of her friends, For I will not have that Shit. I will not have it.

And should she choose to be a Mother one day, be my eyes, Lord, that I may see her, lying on a blanket on the floor at 4:50 A.M., all-at-once exhausted, bored, and in love with the little creature whose poop is leaking up its back.

“My mother did this for me once,” she will realize as she cleans feces off her baby’s neck. “My mother did this for me.” And the delayed gratitude will wash over her as it does each generation and she will make a Mental Note to call me. And she will forget. But I’ll know, because I peeped it with Your God eyes.

Amen.

(Photo: flavorwire.com & American Express)

The Pleasure of Your Company Is Requested...

A fellow blogger, Carolyn, recently wondered aloud why so many people visit her blog, yet so few comment.

“…to me visiting a person's blog is like visiting their home. You always acknowledge the person for allowing you into their home and you should thank them for taking the time to host you. If you are really into the social do's and don'ts, you even try to bring a small gift to show your gratitude or appreciation for them hosting you. That's what comments are like to me...my way of saying thanks for taking the time to share your "whatever" with me.”

In response, this self-described “comment ho” got 118 comments! (If you're not familiar with the term, ask the youngest blogger you know - privately ;) )

I will admit I love to lurk blogs, and rarely comment. Since becoming a blogger, though, I've come to understand how commenting makes the world a better place, and I’m starting to do it more often.

So here’s a challenge for you – don’t be shy! We’d love to know if you’ve used the free Patient Loving Care doctor’s memo. How did it go? Did it improve your care? Did anyone on your health care team comment on it? (FYI, our blog is moderated and posts appear after a quick approval period.) If you’re not comfortable publicly commenting, please send us an e-mail.

We’ve also cooked up a great incentive for taking the time to introduce yourself to us. We are in the final stages of producing an extended version of the PLC Doctor’s Memo – it’s an e-book outlining in detail how to research, evaluate and choose a new doctor. If you’d like to be one of the first to have a copy by becoming part of our review team, please let us know. We are looking for folks who will respond to a few survey questions with detailed, constructive answers to make the book as user-friendly and useful as possible before we publicly launch the final product. We’ll be ready to provide more details soon, but please let us know if you’d like to be put on the list for a test-drive!

Expense of Learning- Part II

In the last post, I gave a quick tutorial on the process I use to decide whether it’s wise to part with my money when it comes to healthcare advice for sale. Now it’s time to dig into the details. Whether it’s a book, a classroom or online course, a members-only website, or a coach or counselor you’re considering hiring, there’s a lot you can do that amounts to a literary background check. It’s not hard to do a little good research, and you’ll soon know whether the knowledge is worth the cost.

When you’re researching a particular offer, jot down some notes and keep a running tally of your thoughts. Use the evaluation suggestions below as a guide.

1.) NAYY (It’s Not a Horse Laugh)
If you come across the offer on a blog, the site must disclose if its owners benefit financially by recommending the product (often indicated by the words “compensated affiliate”) or if it’s an unbiased referral by someone who gains nothing by promoting the resource (sometimes indicated by the playful non-legalese disclaimer “NAYY” which means “no affiliation, yadda yadda.”) Both scenarios have their advantages – a compensated affiliate may believe in a product strongly enough to put its reputation on the line, while an unbiased referral may be more likely to point out drawbacks of a product.
Things to Note: Will the person doing the recommending make money if you buy?

2.) Reputation – Who’s Recommending?
Do a search on the blog author or organization recommending the item and evaluate what comes up. Is he referenced in established publications or websites? Or do only obscure, less-than-polished sites pop up? (An investment in a well-designed, professional webpage is a one indication of someone who cares about professional reputation)
Things to Note: Does the recommender appear to care as much about maintaining a professional reputation as closing the sale?

3.) Reputation- What’s Recommended?
Find out all you can about the author or creator of the product you’d like to buy. Check with your library and do a look-up on Amazon to see the depth and extent of the author (or instructor’s) experience. Amazon includes professional reviews (they’re first – above the customer reviews) which can provide detailed and thoughtful summaries of what you’ll be buying. I’d recommend scanning customer reviews for general themes of likes or dislikes, but remember that anyone can post a customer review without demonstrating much knowledge the product.
Things to Note: Jot down the most detailed product elements that are critiqued to get an idea if it will have a lot or a little information about specific topics that interest you.

4.) Your Gut Reaction
There’s a lot to be said for intuition. If you’re reading a website, explore it with a critical eye and pay attention to the “huh?!?” factor. If the content or even  the look of the site makes you question the motives of the seller, it’s a red flag. (Nothing’s too silly – believe it or not, too many exclamation points drives me nuts – whoever does that can’t be trusted!!!!!) ;)

If it’s a friend making the recommendation, think about all the traits you share – and don’t share – and your differing styles when it comes to handling healthcare issues. If your gut reaction is “if she likes it, then I’ll like it” then by all means go ahead and explore further. If not, well, proceed with caution.

When you’re done jotting notes, tally up the pros and cons. You should have a much clearer picture of whether you’re getting a good buy, or better off saving up for something else.

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)