Hospital Gown + Confidence = Oxymoron

Fifteen years in retail fashion taught me many things.  But the most important thing I learned is that when I feel like I look good, I honestly feel and "do" better.  To this day, if there is an important event - interview, meeting, presentation, date, etc., I will take the time to make sure I have the perfect outfit and all the correct accessories.  Then I only have to worry about what I'm going to say....not about how I look.  Why, you might ask, is this important to share with you???

In my opinion, going into the hospital, for any reason, is a time for making sure all of the confidence chips are stacked in your favor.  The night before my mastectomy, I laid out a cute, but comfortable outfit.  On surgery morning, I showered and got dressed.  Took time to do my hair.  No make-up, but made sure my face was clean and moisturized.  My friend picked me up promptly at 5:00AM with "wow, you look adorable!"  With my confidence boosted, I was ready for surgery!  

At 5:30AM, the pre-op nurses, put a quick and decisive end to my adorable-ness when they handed me a bluish-gray, standard-issue, one-size-fits-none, hospital gown w/unmatched robe, white compression stockings, gray slipper socks with white grippey stuff on the top AND the bottom and an over sized "hat" that most self respecting cafeteria workers would not be caught dead in!  In the span of 30 minutes, I went from confident patient, to just another patient to be operated on, and I was less than thrilled.  Now, before you start in, I can practically recite all the reasons for this change of garments, but does it really have to be that way?????

According to Rachel Zinney, the founder of Dear Johnnies, the answer is a resounding NO!  The tagline "the get better hospital gown", is true!  With a little pre-planning and some cash, I gave myself the gift of dignity and style, in a place where there is precious little of either!!  You can give yourself or someone you love, the gift of a hospital gown that is bright, stylish, improves the color in your cheeks, covers your assets AND meets the needs of your medical caregivers.  A win-win all around! 

It will probably take a little work to convince the nurses, that your hospital gown is not just any gown you brought from home to wear in the hospital - but I promise you, it is absolutely worth the effort!!  The minute I changed into my own gown, I started to feel more like Kathie and not "the patient in room 95W".  These gowns are the genuine article - open in the back as needed, but snap closed and tie in the back to protect your dignity as you walk around the floor, and have shoulder snaps to accommodate IV equipment or nursing.  Size matters....so these gowns come in a couple of sizes, including Plus for several styles.  Once my nurses were satisfied that they would not be inconvenienced, they were quick with the "oooohhhs" and "aaahhhhhs". Sprung from the hospital, I re-gifted my COCO gown to my friend Megan, an ALS patient who is in and out of the hospital....hopefully she will feel just as stylish!

Thank you Rachel for giving us confidence and dignity at a time when we feel especially vulnerable!

Props to Peter Shankman and HARO for sharing the Dear Johnnies link earlier this year!

Rock on Carla Z!

If you've not discovered and/or taken the time to read the blog Carla Muses, you are seriously missing out.  Just my opinion.  Carla Zilbersmith is sassy, smart, and wicked funny.  Oh...and she just happens to have ALS.  I didn't know her bALS (before ALS) - my loss I assure you - but I suspect the disease has only served to sharpen an already razor-sharp perspective on everything...from the world, politics, dating, self care and quite literally, EVERYTHING in between.  She is a gifted writer, gamely sharing her ALS journey in full, out loud, living & breathing, color.  Late to the game, but yes....I am a fan!!

With that in mind, you should not be surprised to hear that she's written an informative and (it wouldn't be Carla's if it wasn't!) irreverant guide to living (with a capital "L") with ALS instead of waiting around to die from it.  While the Vain Girl's Guide to Living with ALS is clearly targeted to women living with the disease, never fear.  With and open heart and an open mind, there is something for everyone.  There are quite a few take-aways for me!!!

Once your laugh muscles are warmed up, the next step is to check out the film "Leave Them Laughing - a Musical Comedy about Dying".  Treat yourself to a full, "Carlaful" experience.

Enjoy!!

ALS patients are not babies...

I've become a fan of Carla Zilbersmith.  Which actually kind of sucks for me because I didn't know her before ALS and would have really liked to.  My loss.  My only consolation is that I am able to read her blog, admire her joie d'vivre and truly appreciate the tremendous effort that goes into each of her narratives. Her recent post, Big Baby on Carla Muses had me laughing AND crying as I recalled some of the caregiver/patient moments I experienced with Bill.  My post today is from the opposite end of the continuum.

For the record, we did not have babies, we had a three year stint as legal guardians for three 16 - 19 year olds.  My skills were just as limited and impatient as Carla described, so you can only imagine the conversations between the two control freaks living in our house!  To Carla's point, it is painfully frustrating (even without factoring in the potential humiliation) to be an adult who is no longer capable of operating independently.  It is all too easy to treat an ALS patient or an elderly relative as if they are a small child, even when we are fully conscious of the fact that they have learned full well how to dress, bathe, drive, and more.  Please repeat after me:

It is not ok to treat an ALS patient like a baby, not even when or if they are acting like one.  ~William Neil Lichtig

Each and every day some bit of independence is stolen from these loved ones, and deposited into the hands of a well intentioned caregiver.  And it happens of necessity, not because you and the patient came to some sort of mutually agreed to arrangement! 

Take a minute to reflect on what it might be like if the circumstances were reversed.  Would you be a "good" patient?  Would you trust and allow your spouse, child, parent to be your caregiver?  How would you negotiate the boundaries and know when to speak up or shut up? 

Think about it.  When you are rushed, it is much easier and certainly more efficient to put the shoes and socks onto a pokey toddler who is learning to dress on their own.  However, we cheat them of the opportunity to learn independence. It's natural to yell "hurry up" when someone is dawdling. After all, there are place to go and people to see and we're on a schedule.  In the same way, it's easier and much faster to do everything for the ALS patient you are caring for, ultimately shortening the dwindling thread of their independence and cheating you of some much needed respite!  I am not for one minute suggesting that you allow anyone, child or adult, do anything that is dangerous or will result in serious injury.  But I am suggesting that it is in your best interest to slow down and work to encourage/retain independence for as long as possible. 

I consider myself pretty fortunate that Bill was able to adjust quickly to his circumstances and remind me ever so gently (...not!) of what he was still capable of doing.  He could no longer manage the wash, but he could handle the dryer.  He couldn't carry groceries with his hands/arms, but if I could hang the bags onto the handles of his wheelchair or the boxes of soda onto his lap tray, he could zoom up the ramp into the house while I secured the van and he would keep me entertained as I put things away.  He could still carry his share of the load, and sometimes all of it!  

I learned to make myself scarce but stay within earshot so that I could protect myself from the heartache of watching my husband struggle to button his shirt, brush his teeth, walk any distance or any one of a hundred other little tasks.  I learned to tell him he had to do the best he could while I took care of something else.  And I learned to ASK him first, to see if he really needed my help to complete a task.  We learned to build more and more time into the schedule to accomodate his needs and capabilities.  And just as the world doesn't stop spinning when the kid goes out in mis-matched socks because everyone was rushed, it didn't stop when it took us an hour and a half to complete the grocery shopping instead of  45 minutes!

Caregiving is a full-time gig.  It's demanding and generally exhausting work.  Change is not easy. Work together and do not willingly make this job any tougher, any sooner, than you have to.  It would be great to hear how you manage this delicate dance.

SHARE THE CARE: Offering help

Some time ago, I wrote a post entitled Ask for help / receive offers for help graciously. In it I wrote, "We are just not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!"

I had a conversation about a week ago with someone who agreed with my sentiment but shared a slightly different perspective. She said "I would love to have some help! I want help, I know I need help, but with everything I'm trying to cope with, I can't always articulate what I need. The truth for me is that when you ask me "what can I do to help you?", the offer is so vague, my brain goes into overload and I just can't answer!" Hmmmmm. We finished our conversation and went our separate ways.

A bit later in the day, I walked into a card store and was immediately greeted with "May I help you?", and the "how can I help" conversation came rushing back...in a flood. I've had extensive sales training over the years, and the #1 taboo in sales is to greet a customer with "may I help you?" It's too overwhelming and immediately invites the customer to put up his/her defenses. (All together now..."no thanks, I'm just looking!") In that instant, I understood what my companion was trying to say about offers of help.

The same way I've taught my team members over the years to greet customers with ANYTHING but "that sentence" (I've actually levied fines to retrain my forgetful team members!!!), I thought it would be helpful to share some specific alternatives to "How can I help?". This is a "starter set" to consider. Just remember the goal....narrow down the options for the patient/caregiver - so that you are much more likely to get a positive, definitive answer and everyone wins!

The photos in this post are of just a few of the many angels who inspired this post and came to my rescue....more than once!

• I make a mean tuna cassarole and my family raves about my spaghetti. Which does your family prefer? (Obviously, insert your personal specialties!!!)


• I am free to run the "kid shuttle" on Monday or Thursday. Which would be better for you?


• I have an hour on Saturday to pull weeds or mow the lawn. Which chore would you like to delegate?


• I can help you with household chores for about an hour - you know change beds, fold laundry, etc. How about Tuesday evening around 7 or Wednesday after 3?


• I can take the kids Friday or Saturday night for a sleepover, which works best for you?

You get the idea! PLEASE add to this list by posting your suggestions! Another alternative: Don't ask - just DO!

Most of these suggestions require little or no planning and best of all, you can do them whenever YOU have the time, energy and inclination! Please keep your friend's temperment and your relationship in mind!! A word of caution...in the interest of fair disclosure: following any of these next suggestions is potentially risky! However, I am reasonably certain that even the most die-hard indivualists would appreciate it if you were to:

• Take your kids, a couple of rakes and some big trash bags and just rake the leaves in your friend's yard. or...Trim the hedges. or....Mow the lawn. or...Deadhead/fertilize the roses. Other???


• Shovel the driveway


• Safely, with a buddy, clear the gutters. or...Wash the outside windows. or...Wash a car left in the driveway.

Your imagination is the only limit to builiding your Mitzvah list. Let me know how it goes!

Ask for help / receive offers for help graciously.

We are not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!

Now is the time to turn to friends and family – you have to let them in - to share the load. If you can figure this out, the road will be a lot less bumpy and considerably more meaningful for you and your circle of loved ones.

I personally believe it is particularly critical while your PALS is still mobile to get people to take him/her out, for a period of time so that your PALS is safe and entertained. They get a change of scenery, you get some time to yourself, even if it's to take care of chores and (bonus!) you have something different to talk about besides ALS! This will get harder as your PALS loses mobility, but it's not impossible. You may have to do some negotiating as the disease advances. It helps to have friends who have been caregivers!

I always had a backpack stocked (think diaper bag!) and several friends learned how to feed and water him so that he could remain independent and interesting. Bill was really great about going out for up to 3 hours, which was about the maximum capacity of his bladder. He didn't want anyone to help him transfer in the bathroom but me. Again...I totally realize now how fortunate I was that he was willing to let people be that intimate with him!

Here are some less intimate options for when someone says “I want to help, what can I do?”

• Ask them to cook a meal and make enough for left-overs.
• Have them talk to you as they unload your dishwasher so that you can sit still for 5 minutes and watch them do it.
• Have them arrange for a neighborhood rotation to rake leaves, mow the lawn, trim the roses, etc. Have your PALS supervise the effort.
• Help you (organize a weekly blitz to) change the beds, vacuum, mop, clean the toilets, etc.
• Hand them a shopping list (be specific about brands you prefer!) and your debit card and ask them to go to the grocery store. Even better, take your PALS with them so he/she can help with brand decisions! If your PALS is not in a motorized wheelchair, they can use the motorized carts in the store. They don't have to hurry!!!! Use the time to get a shower, meditate or read.
• Sit still in a chair, on your hands if necessary, and coach them on where things go in the pantry when they get back with the groceries.
  Hand them your bag of dry cleaning and ask them to take care of it the next time they run their errands.
• Ask them to pick up a box of haircolor and a bottle of wine. Set your PALS up with a 90 minute movie and ask them to help you color your hair!
• If you go to the grocery store, and the courtesy clerk asks "would you like help", the only answer is "yes please"!!!!
• Ask the kids in the neighborhood to help decorate your porch for the holidays. It may not be perfect, but it will get done, they'll have a ball and who knows...you might like it better. I often had Bill "supervise" these projects. The kids loved it!
• Consider doing you holiday shopping online and then having friends help you wrap everything. Again...send your PALS shopping with friends and a list.
  

There are millions of little opportunities! Be creative and allow your friends the ultimate gift of helping you. You aren't a burden! Please consider this...you would be sorely offended if you offered help and they turned you down, if the circumstances were reversed.