Friday, June 15, 2012

12 Ways To Help a Friend Survive the Hospital

My daughter recently spent about 10 days in the hospital with Recurrent Kawasaki Disease (KD).  This meant a hospital stay for me too, because when a child is living in the hospital, a parent is living in the hospital. 

It was an agonizing 10 days, as any hospital stay is, and I sometimes found myself overwhelmed and swimming in self-pity.  When I would find myself questioning, “why us,”  all I had to do was take a walk through the hallways of the PICU.

A peek into the other rooms would reveal just how fortunate we were.  I saw parents squished together in an uncomfortable bed, trying to get a few desperate winks while their infant lay sedated and intubated.  I saw a mother of a child fighting cancer, who knew the floor better than some of the nurses.  I saw bedsides filled with wilting flowers and cards pining for homecomings long awaited. 

Yes, we were definitely some of the lucky ones.

Having a child in the hospital not only affects where that parent will live, eat, sleep, and brush teeth, but it also affects the way a parent functions, how they think, when they eat, how much exercise they get, whether or not their bills get paid, and their relationship with their other children.  Having a child in the hospital is a life changing event.

Loved ones desperately want to help in any way they can.  The sentence I probably heard more than any other was, “What can I do?” The problem is, a parent’s mind is so overwhelmed with what is going on with their child, it’s extremely hard to come up with a useful answer to that question.

It was only after our nightmare was over that my head became clear enough to say, “THIS! This would have been helpful!”  So I’m here to list 12 ways you can help a parent survive the hospital.

1.  Bring Food

This is probably the most popular request by parents in the hospital.  As surprising as it may sound, eating healthily in the hospital is very hard to do, for both child and parent.  And when you think about it, a hospital stay is a crucial time when both child and parent need the mental and physical stamina that good, nutritious food will provide. 

Now, if the parent requests you bring them Wendy’s, by all means, bring them Wendy’s! (That’s what I asked for after the small medical airplane ride from hell.)  But if a parent is staying in the hospital for a week or more, living on Wendy’s and hospital food just isn’t going to cut it. 

Many hospitals will have a family room, where patients can store food in a refrigerator or freezer and have access to a microwave.  Keep this in mind when shopping for food. 

During our stay, my dear friend brought a veggie plate and salads.  She also brought a resealable bag of organic frozen veggies already in a butter sauce.  It was the BEST thing we could have gotten.  Whenever I wanted, I could have a piping hot bowl of buttery veggies for me or my child. 

Keep in Mind: When bringing food that must be stored or cooked, you may also want to bring along some plastic storage containers.  All that was available to me were small styrofoam bowls -- not the handiest. 

2.  Provide an Opportunity for Music

When we fall out of harmony with ourselves or our world -- when we are nervous, afraid, or unhappy -- our inner sounds become discordant and we don't feel well.  In ancient Greece, medicine was used to keep the body in tune -- in harmonic alignment with nature and the universe.  All forms of sickness, both physical and mental, were considered musical inconsistencies.  Hippocrates, the father of Western medicine, often took his patients to the healing temple of Asclepius.  There, music was used to reestablish the natural harmony of the body.  Compare this to our modern hospitals, where noxious, hazardous sounds are ubiquitous. ~ The Yoga of Sound by Russill Paul

If you still have access to the increasingly archaic boom box, bring one with a small but eclectic selection of cd’s.  Include some classical music, which can be particularly useful during the night.  It is almost impossible to sleep in a hospital, but some soothing classical music can go a long way towards blocking out the beeps, blips, screams, and cries. 

If you have an ipod or MP3 player you can spare for a while, bring it with headphones.  It could give a child that has been tortured (and, yes, in their minds, it IS torture!) a much needed sense of control, privacy, and normalcy.  It can do the same for the parent.

Keep in Mind: Make sure you bring the music THEY would like, not the music YOU would like, if those two things differ. 

3.  Ask if the Pillows are Comfortable

I think it may be some kind of rule that all pillows in hospitals and hotels suck.  I know somebody must like those slippery, airy feather pillows, but those people are nuts.  I spent two sleepless nights futilely rearranging five different pillows in an attempt to sleep in the wackiest recliner I’ve ever seen.  But did I think to ask someone to bring me a decent pillow? No.  Why? Because, as I described above, my brain was in semi-functioning mode.

So ask the parent and child if the pillows are comfortable.  If they live close by, offer to bring in their own pillows.  Familiarity is always a positive in such a sterile, impersonal place.  If they are out of town, bring in some pillows from home or spend the money on a decent new pillow.  Believe me, the 20 or 30 bucks will be much better spent on that than on a big arrangement of flowers or balloons that will most likely be in the way. 

Keep in Mind: Don’t forget clean pillow cases!

4.  Ask if They Need Any Specific Toiletries

It’s the stuff we use everyday, numerous times a day, yet it is some of the first forgotten.  It’s also the stuff sometimes missed the very most.  Most hospitals will usually provide small forgotten things like a toothbrush or cotton swabs, but there’s something to having the specific brands or items you are used to.  When you’re stuck in a foreign environment, the small comforts of home - like your own toothpaste or conditioner - can bring small moments of joy and strength. 

Keep in Mind: There is usually no where to store toiletries in hospital bathrooms, and that’s considering you’re lucky enough to have a private loo in your room.  One of those cheap, hanging baskets that college kids use in dorms could come in very handy!

5.  Offer to Wash the Clothes

Laundry is really the last thing that should be on a parent’s mind, yet clean clothes should definitely be on a parent’s body.  Everyone feels better when they are clean and fresh.  Sometimes there will be facilities in the hospital where you can do laundry, but even then it is so hard for the parent to get away to do it.  And many times, no facilities are provided for patients. 

It’s also a pretty sure bet that the half-brain-numbed parents didn’t do a spectacular job of packing.  The first time we were admitted, my husband packed me four pairs of shoes and no socks.  The second time, I packed myself four pairs of lounge pants and one shirt. 

Children can often go through quite a bit of clothing as well.  They may be in a gown, but my daughter often preferred a shirt of her own.  Because she was constantly eating and drinking in bed, she would understandably spill quite a bit. 

Something else I never would have thought about until it happened to me was how many pairs of underwear she would go through, because she kept wetting the bed.  This was understandable as well -- she was extremely sick, weak, exhausted, sleeping on and off, and her poor little body was constantly being pumped full of fluids.  I swear, the pee just kind of burst out of her.  So there also might be a lot of underwear to wash, considering parents probably don’t think to bring every pair they own.  I surely didn’t. 

Keep in Mind: This one definitely depends on your comfort level with your loved one.  I wouldn’t be comfortable with just anybody washing my dirty skivvies.  But my wonderful aunt who came to the hospital to help out? Heck yeah, woman, wash those clothes all you want!

6.  Be the Best PA (Parent’s Assistant) Ever

Many, many silently pressing issues can fall through the cracks while you sit by your child’s bedside for days, waiting for a diagnosis, a treatment, or the sight of a doctor.  In that hospital room, time seems to stand still; but outside those walls, life keeps a-movin’.  There are bills that need to be paid, dentists appointments to cancel, schools to update, and a million other things a normal mom can get done no problem.  But hospital mom, she could use some help with this stuff.

You can casually bring up some of these mundane things to gently remind a parent of their ‘real-life’ obligations.  Or you can whip out your laptop or cellphone and take charge.  Like the previous example, this really depends on your relationship with the person staying in the hospital.  Personally, I hate talking on the phone, so someone to help with phone calls would be a dream.

Keep in Mind: A parent may also need some gentle reminders with things like taking a shower and brushing their teeth.  It’s amazing how you can forget to take care of yourself when you are so overwhelmed with taking care of your sick baby.

7.  I Deem You, List-Maker

This is an additional task of your new PA job.  If parents aren’t remembering the mundane things they do everyday, you can be sure it’s going to be hard to remember the information being told to them in the moment or the thoughts and questions that randomly run through their scattered brains.  Nobody can think on no sleep.

Lists are a hospital-bound parent’s best friend.  Go out and buy a new and simple notebook.  You can probably find one in the gift shop.  Make it a vibrant color, which will be easier to spot in a messy, lived-in hospital room.  Also get a pen that you can somehow attach to the notebook, otherwise it WILL get lost. 

Start headers for some helpful lists; each list gets its own page.  Here are a few good ones:

  • ~ Names and specialties of every doctor/health care provider that comes into the room.
  • ~ Questions for health care providers.
  • ~ New symptoms your child exhibits when a health care provider is not in the room.
  • ~ Information given by health care providers.
  • ~ People the parents may want to send thank-you cards to afterwards.

Keep in Mind: It’s also a great idea to always ask for a business card of all the health care providers that treat the child.  Even knowing their name and specialty, it may also be helpful to have contact information later on.  These can be taped to the back of the notebook.

8.  Be the Errand Runner

You want to know what sucks? Being in a strange, new city, finally getting a break from the hospital, going out to your car to get away for an hour, and realizing you have an empty tank and absolutely no idea where the nearest gas station is. 

Whether or not the hospital is where the family actually lives, running some mundane errands can really help out.  Offer to gas up the car or get cash out of an ATM (for those midnight vending machine runs).  I never seem to have cash when I need it.  If the parents are in a foreign city, help them map out routes for where they need to go. 

Late one night, the only thing that was going to make my daughter happy was a slice of cheese pizza from Dion's.  I was so tired, I didn’t know if I could find my car, let alone a restaurant I had never been to before.  My wonderful friend wrote out step by step instructions on how to get there, how to get from there back to the hospital, and how to get back to her house again.  She even knew me well enough to keep me off the freeway, something google maps wouldn’t do. 

Keep in Mind: Don’t write down their pin number! Haha.

9.  Help with the Constant Updating

There is not a person in the world who can stand the thought of a sick child, so when it’s your child, it’s no surprise when everyone from your neighbor to your 4th grade teacher starts calling and requesting updates. 

Modern inventions like cellphones, texting, and social media sites like Facebook can certainly make updating loved ones easier.  But it can still be a tiring and tedious task on an already overwrought parent. 

Offer to take over some of these duties.  Mostly likely, depending on how close you are to the parent, you are going to know a lot of the people, so updating would be easy.  For a more indirect approach, many hospitals now have special websites to help make staying in touch easier. 

CarePages.com is the site utilized by our hospital.  Once you set up an account, you have a place where you can post updates and pictures, receive messages of love and support from friends and family, and even connect with other people in a similar situation. 

Keep in Mind: Make sure you understand just how much the parents want others to know; privacy of the family is key.

10.  Help with Research

Personally, I’m a research junky.  I want to know as much about a subject as I possibly can, especially one that involves the health of my child.  But when I haven’t slept in a week and I can’t read for five minutes before my daughter asks for a drink of water or a leg rub, there isn’t much chance of me accomplishing anything coherent. 

It is imperative that parents remain informed, so help by doing the leg work.  Sort out the informative articles from the junk, send links to the parent’s email so they don’t have to search for it, or print out hard copies for them to physically hold in their hand. 

Keep in Mind:  Make sure you are getting your information from trusted sources.  The last thing a terrified parent needs is to receive wrong or harmful information. 

11.  Get Your Craft On

Many of the examples I have discussed may be a bit too aggressive for some personality types.  Though their desire to help is no less sincere, they may not be able to physically be there for many different reasons.  Some loved ones may want a more indirect way to provide support.  If you are at all crafty, here are some simple and inexpensive ideas that could make a horrible hospital experience a little easier for both child and parent.

None of these crafts were designed specifically for this purpose, but they could be invaluable in a hospital environment.  They can be used as distraction during painful and scary procedures.  They can fill the time spent waiting for consults.  They could simply be a source of comfort when the scary doctor comes in to do the 15th exam of the day.

Calm-Me-Jars

Also referred to as mind-jars, these are typically used as a tantrum soother.  It’s simply a bottle filled with water, glitter glue, and glitter.  When you shake the bottle up, the glitter performs a mesmerizing dance before slowly settling to the bottom.  I made some myself and wrote about it here.  I also link to a variety of other calm-me-jars in that post.

I-Spy Bags

An I-spy bag is a small bag with a transparent window that is filled with rice and a bunch of small objects or toys.  The object of the game is for the child to find all the objects hidden in the rice.  The simplest I-spy bag I have seen uses a pencil holder and requires no sewing.  You can find the tutorial here.

Do-it-Yourself Stress Ball

Most people have heard of those little balls filled with some sort of pliable material that you can squeeze and mold in your hand.  Here is a great tutorial for making them yourself using Playdoh and balloons.  You can also dress them up with silly faces and hair to make them even more kid friendly. 

Keep in Mind: You can find examples of these and many other craft ideas on my Pinterest boards.

12.  Just Be There

When all else fails, just sit down, and be there.  Be the shoulder to cry on.  Be the bitch to the crappy nurse.  Be the target of a much needed vent.  Be there while the parent runs to the bathroom.  Just be there. 

And even if you can’t be there, you can still be there.  Send a prayer or positive thought.  Light a candle or send a card.  I have loved ones scattered all over America, and even though I couldn’t see them, or hear them, or feel them, I could still sense their love from miles and miles away.  I could feel the positive energy they sent to me.  Who knows, it may have been that extra ounce of energy I needed to make it through one of the scariest ordeals of my life.

Keep in Mind: If you have one of those totally together, organized, calm friends who assures you over and over again that they don't need any help? Don't believe them. 





2 comments:

  1. Oh Leah...I so wish I was closer, I would have been the person to do all of this. This is such an excellent post!! I've been in the hospital with one of my twins, 4 days...I get it. I was lucky, my mom was there to help me while my husband was a work.

    I hope you never have to do this again, hon. ♥

    ReplyDelete
    Replies
    1. Thank you, Lori! You did an excellent job at #12. <3

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