how to support a family navigating a long-term hospitalization and illness

Every once in a while I like to repost this list of ways to support a family who is navigating a long-term hospitalization.  Now is as good a time as any.
 

reposted from 2007

You'll note that most of these are things that help the injured person's family, not the injured person. Go love on the loved ones.

While they are in the first few days:

Cards. We collectively -- and I individually -- received piles of cards from people - often from people that were just in the circle of our circle. Every single card was a blessing. In a way, it is just saying "Hey, this IS a big deal and even those of us way out here in acquaintance-land can see that it is a big deal." Of course no one says that out-right -- they all say the same thing, really -- but the meta-message is that they noticed that our world had just crashed.

Care Package for the family members who are sitting vigil. We received these and they were SUPER appreciated:

Go love on the loved ones.

• slip-on woollie slippers for those sitting at bedside. Hospital floors are cold.
• notepads and pens - encourage the family to establish a medical log-book. Why? See the medical log-book post.
• a pretty blank journal that visitors can sign in and leave love notes for savoring later
• chapstick
• hand lotion - lavender is clean smelling and has a bit of a perking-up effect, as does lemon
• healthful snacks with shelf-life or small portions of protein snacks that have no shelf-life. A bit of cheese with a handful of good crackers in a pretty napkin - wonderful. A small cup of hot brothy easy-to-sip soup.
• boxed juices
• a little lavender sachet
• a mini-manicure kit (we were amazed at how often we reached for this)
• a long bit of string or ribbon and a box of paper clips for a greeting card garland - much wiser than tape if they expect to be discharged or transfered very soon.
• prayer shawls for drafts (for the patient or the watcher)
• postage stamps and note-cards
• SOFT tissues
• if you are making up a care package, avoid baskets that -- though cute -- take up a great deal of counter-space.

If you have ideas to add to this list, let me know in the comments.


If the injured person is going to be there for awhile, or at a nursing home:

• scotch tape for posting family pictures on the walls
• reading material - My Mom said that she really appreciated these: Christian Science Monitor "they always have an article about something pleasant"; Peace Like a River - "books where people overcome hard things and give encouragement that maybe someway my world will be okay too."; The Week: all you need to know about everything that matters.
• I remember glancing through Reader's Digest& National Geographic, things that you can look at and read and forget that you read over and over again.
• a little ice-chest for keeping snacks
• snacks: little cheese, whole-grain biscuits, fruit, juices
• more notecards and postage stamps and nice pens
  

When you phone or visit:
Most importantly, DON'T ask the family of the injured person to make you feel better. I can't tell you how many times I found myself trying to comfort others. They didn't intend that, but it went that way anyway, like this:

Other: Oh I can't tell you how badly we feel.
Me: Thanks. It's pretty scary.
Other: I can't image how awful this if for you all. Your poor mother.
Me: Mom's holding up pretty well, considering. . .
Other: Oh but if it were me, I'd just . . .
Me: No, you'd be stronger than you think; you have to be.
Other: Well, it's sounds so awful, I just feel terrible. I cried all night for you all.
Me: We'll be okay. It will all be okay.
Other: Such a terrible accident . . .
Me: I'm sorry, I have to go now.

They didn't intend it at all, but we ended up talking about THEM! When my Dad is in ICU/life-flight/ward 7/nursing home/rehab, I don't care how they feel. I do care very much what they can do to help.

Better:

Other: What a hard time for your family. How can I help?
Me: Go pick up the family dogs and make sure they are safe and fed.
or
Me: Drop by the house and make sure the mail is picked up and there is ready-to-eat food in the fridge, that the kitchen garbage is empty and the garbage can gets to the street on the right day.
or

In other words, express your care and then keep your conversation to practical aid, and not about how badly you feel, because, no matter how badly you feel, they feel worse. Which brings us to the topic of encouragement and support.

If the person you are interacting with is actually taking a much bleaker view of things than the medical situation warrants, then indeed offer encouragement. But if the situation is rather bleak, as ours was, please offer support. Here is an excerpt from my thoughts on encouragement vs support that I shared about 5 months post-injury.

[ . . . ] It is the difference between offering encouragement versus offering support. Encouragement says, 'have hope that things will get better'. Support says, 'wow, this sounds really tough.'

The underlying theme of encouragement is, 'it had better get better, because as is, it sounds pretty hard,' but encouragement doesn't go to the hard place with you. It just tries to rush you past it and onto better days. If your situation is not going to resolve quickly, the rushing appears to be for the other's benefit (not having invest anything into sharing empathy). It is certainly not to the benefit of whomever is struggling.

Another way of looking at is is that people who give empathy are joining me where I am: sad, grieving, fearful. People offering encouragement are asking me to join them where they are: hopeful, optimistic, un-burdened. I think on whole, we have handled Dad's injury as positively as possible, but this doesn't mean I don't grieve. And when I am grieving (approximately every day that has a y in it), I don't want to be pushed back to the happy-place. I need to be supported in the sad place.

So, I have learned that I far prefer empathy over encouragement. How about you?

How then can you provide support?

• Ask if the on-duty vigil sitter would like a little break. Would they like you to stay? or to accompany them on a little walk? Try to get them outside for a bit of air.
• Ask for a chore or errand. Accidents happen in the middle of to-do lists at home. If you can step in and take over one of the dangling tasks you can give a little relief. We were out of goat hay and needed a bale picked up. Ask if you can drop off the library books, pick up stuff, drop-off or eggs & bread, take the garbage out, and so forth.
• Ask "how may we pray" and then ask "would you like to pray now, or shall I take these requests with me". Sometimes we needed prayer right that minute, sometimes we needed to know that we would be lifted up later. Sometimes both.
• Ask "Would you like to tell how this happened? or are you sick of it for today?" On some days Dad wanted to tell all the gory details, someday he dreaded it.
• Ask the family members, "How are you doing?" Be prepared for them to either look glibly resilient or to sob on your shoulder, or both, simultaneously. They don't know how they are doing, they've never done this before.
• If the family has small children or grandchildren, take them off their mom's hands for a few minutes. People came to see Dad and ended up touring the nursing home with my kids so that I could serve Dad. They will never know how much we appreciated them.
• Recognize that the nursing staff does not meet all the patient's needs, just all the medical needs. The family does the rest and they are busy and tired. Help them. Dad was very very high-maintenance, though I bet he does not remember this.
  

When the family returns home (with or without their patient)

Cards. again. It's a new stage and they need to know you are with them.

LotsaHelpingHands ~ a terrific free and easy-to-use website for coordinating helpers when we got to that stage. This website acts as a hub for listing and filling needs and saves everyone from tiresome phonecalls. (edited to add this link to a great post on LotsaHelpingHands.)

Here is a short list of really useful ways to bless them:

• Mow their lawn.
• Load them up with paper plates, napkins, and glasses.
• Meals, obviously. And for A LOT longer than you think. Meals that can be a lunch or a dinner are especially thoughtful. Here is a link to two recipes that were brought to our home. Deliver meals in containers that are clearly labeled ("OK to toss or give to Goodwill"). The family you are supporting does not need to be burdened with casserole dish tracking.
  
• Fill up their pantry with healthful beverages - if they are in shock, thirst returns before appetite, help them quench their thirst with nutritious beverage.
• As you move though your day of errands and chores, ask yourself who is doing that for your injured family. Seasonal changes are especially problematic if the man of the house is flat on his back. Storm windows? Snow tires? Anti-freeze? Do they have school-age kids that need to get school supplies? Do they have little kids who need their stockings stuffed?
  

When they do get to take their partially recovered person home:

• don't stop visiting. When the injured person is out-of-it, you visited to show love and support the family. Now that the patient is halfway recovered he or she is well enough to be bored and ill enough to be house-bound. Bring the world to them. Visit in person, even if it just 20 minutes on your way home from work. My Dad is 20 months post-injury and though not house-bound, is not exactly traipsing about either. He is very blessed by a handful of friends that visit regularly; he looks forward to it all week.
• give the #1 care-giver a break. If she or he won't tell you what they need, call their kids and find out. While the injured person was hospitalized, the care-giver had a bit of time-off, going home to rest or feign normality. Now that the patient is home, the already-weary care-giver is now a full-time nursemaid. Ramp up your support of this tired person.
  
• take meals over long after everyone else has stopped.
• pull weeds, mow. They are all at risk for getting depressed right about now. Help their environment look lovely.
• do some stealth cleaning. Over for a visit? grab a broom, sweep a walk, deadhead a potted plant, slyly toss out the rotten food in the fridge, wipe down a counter, shine the sink. Life is overwhelmingly tiresome for them right now. Every little help is a blessing.
  

That is my gleaned wisdom from a been-there done-that perspective. What have I missed? What should I add?

Also, if this post was useful to you, please let me know. There is something healing about enduring hardships and getting to help others thereby.