Tips for friends and family

I've learned a few things on this journey that might just turn out to be helpful tips for those of you who have friends or loved ones in the hospital.  They might seem like little things, some of them, but even the little things matter to those of us on the "inside" sometimes.

Your encouraging cards and notes are totally welcome.  Cards and kid crafts decorated with glitter, not so much.  A person confined to their bed does not enjoy getting their hands and sheets doused with the little sparkles with no way to wash it off.  You wouldn't believe how badly wet wipes fail at removing glitter from your hands, they just spread it around.  Try to choose greeting cards without the stuff if possible.

I debated whether to mention this, but my mother and I know we love each other and I know she'd want to know, even if it did take me forever to get around to saying something about it... Mind your tone.  Most people have a different tone of voice, a soft, reverential, sad tone they use when speaking at funerals or talking in nursing home hallways.  Mom uses hers when she answers the phone at the mortuary where she works.  The first time she called me after my cancer diagnosis, she used it on me.  My reaction was immediate and strong denial in my mind:  no! No way are you using that deathly tone with me, because I am not dying.  Eventually as the shock wore off and her hope was restored she stopped using it, but hopefully people who read this will avoid using it right from the beginning.  More terminally ill patients might feel differently about it, but for me, I wouldn't want to hear that tone even if I actually was dying.  Talk to us like we're still normal people, friends, because that is what we long to be.

The idea of a surprise visit is nice, but most of the time, a courtesy call in advance is probably appreciated.  You never know when we might be having a bed bath or trying to have a bowel movement or how long those things actually take, so to avoid wasting your time waiting and potentially knocking on the door in the middle of an embarrassing situation, go ahead and phone us first.  Besides, that gives us time to comb our hair and check to see if we still have breakfast crumbs on our gown.  They like to hide up under the chin zone where you can't really see them...

Even really good hospital food sucks compared to outside food in most cases.  Don't be afraid to ask what you can bring us for a meal or snack.  We will LOVE you for it.  Even something as simple as a 20oz bottle of our favorite soda can brighten our days.  

If you're wondering what you can do to help, consider stealing an idea from these amazing offers we've had from family and friends:  babysit the kids, fix them an easily reheated meal, hold a non-perishable food drive to stock the family's pantry, collect cash to help cover the family's travel and other incidental expenses like parking and fast food.  If your ill loved one isn't lucky enough to be married to a library employee like me, they might be in desperate need of diversion materials like books, magazines, movies, crossword puzzles, or even a pack of crayons and a coloring book so they have something fun to do when the kids visit.  I'm woefully unconcerned about make-up and fashion, but people who take a little more pride in their personal appearance than I do might enjoy an offer for a homemade manicure or a little hair styling, maybe access to their cosmetics from home or a can of their favorite air freshener.  It can't hurt to ask, and they can always check with their nurse whether a particular item is allowed in their room.

Try to be considerate of what the patient can and cannot reach in their room.  It may be fine to move something off a chair next to the bed to sit while you visit, but you'll want to try your best to remember to put it back before you go, and perhaps even ask if there's anything else they need but can't get on their own.  Invariably I will remember five minutes after my nurse walks out the door that she just set my long-reaching grabber on the other side of the room so she could reposition me in bed and now I can't reach anything.  It might be an hour before someone has time to come back in and hand it to me.  So while you're visiting, it's really helpful if you prompt me to remember the half dozen things I've been mentally listing to ask someone to help me get the next time they come in!

Sometimes we just get emotional.  This can be a bit awkward to observe, and even more awkward for the one doing the crying.  Since it has worked on me, I might suggest trying to gently keep us talking about pleasanter things for a few minutes.  Often a kind staffer has been able to steer me onto a more happy topic so that I could recover my emotions, regain some dignity, and still enjoy a nice conversation, leaving me the ability to save my tears for a more private moment.  If this doesn't work within a few minutes though, it might be time to ask if the patient would like you (if you're willing) to just sit quietly with them while they let out their feelings, or if they would prefer you to give them some alone time and visit again another day.  Whatever choices your comfort level allows you to provide, they will likely appreciate being given the options.

I've found that flowers do as much (or more) to lift the spirits of the staff as they do of the patient.  Arrangements don't have to be large or pricey, in fact smaller ones are easier to find a place for in the room and some of the less expensive ones often live longer than expensive, powerfully-scented roses.  Speaking of scents, remember your loved one lives in a small room, so a little flower fragrance goes a looong way.  If a flower smells strong in the store, you probably don't need more than 1-3 of them, not a dozen.  Staffers also love baked goodies or the occasional bag of candy, it seems.  Maybe patients, too...

Above all, remember that it's always the thought that counts, and your loved one will remember that too.  Don't feel bad if you didn't think of some of these things, and please, feel free to add tips of your own in the comments.  Including tips for how the patient can help their friends and family!  What do you most wish we would communicate to you?