quality time.jpg — Quality Time

Moments That Matter

A few weeks ago, I was standing in the kitchen talking to my husband. “Why does everything have to be so easy?” he asked me, with a heaping tablespoon of sarcasm. At that time our roof was leaking into our kitchen ceiling, our daughter had a month-and-a-half cough we couldn’t seem to kick, we’d just learned our furnace and air conditioning needed to be replaced, the company for which my husband worked had just been bought (surprise!) and we had no idea what that meant for his job prospects, and we had a very strong-willed two-year-old fighting us on every front. I paused and then said what was on my mind (never an issue for me). “Well, I hate to say it, but I think it’s to prepare us for something even harder.”

Fast forward a couple of weeks. I’m sitting in my office, about to go teach a class, and my Mom calls to tell me that my Dad (surprise!) needs a major heart surgery…that afternoon. The next week and a half is a blur. I fly home and sit with my mother in the ICU holding my father’s hand and willing him to get better. Complications pile upon complications. Today, he is still hospitalized but doing better (there are still complications because, hey, that’s life) and the road to recovery, I suspect, will be a long one. But in the meantime, I wanted to share a few tips about navigating a stay in the ICU. Admittedly, it’s a bit off topic for this blog, which is primarily about caring for children. But many of us are not only caring for children, but also aging parents. You, like me, might be in this so-called “sandwich generation,” caring for young children while also helping aging parents. Or you might be a family (or supporting one) who has a medically-fragile child.

helping through the ICU

There is a huge element of making it out of the ICU (with a heartbeat) that is mental. As a parent, child, grandparent, spouse, or friend, there is often little you can do to control the medical aspects of a patient’s care, but you can help them with their head game. Bring photos of loved ones, play music they like, hold their hand, read them books—even if they don’t seem to be “in there” at this stage of their recovery. Above all, try to help them and their caregivers stay positive.

Wash your hands every time your enter the patient’s room and make everyone else do it too.

Be an advocate. If you’ve ever hand the flu or a really bad case of food poisoning, you know that when you feel terrible, it’s pretty hard to do the necessary things to help yourself get better. This is magnified 100 times for someone sick enough to be in the ICU. Even if you have no medical knowledge (which, by the way, is SUPER helpful to have) you can be an advocate for someone who is too ill to do it for her or himself. You can let the nurse know they’re thirsty when the patient him or herself can’t reach the call button. You can turn off the glaring lights, wipe a hot forehead, turn the TV on or off. Simple things like that make a huge difference to someone who is suffering from discomfort and immobility.

You may not be able to bring flowers or food. Many ICU environments have strict limits on what you can and can’t bring in, to limit infection risk. Before you drop $100 on a big bouquet, ask about the rules. Likewise…

You may not be able to stay the night. This one was really hard for us. There was a particularly bad night where we felt like our presence might be necessary for my father’s survival, but we weren’t allowed to stay the night. Again, ask.

There may be times when your nurse is unavailable. If another patient is having an emergency or a family has many questions, your nurse may be temporarily unavailable. Likewise, when nurses change shifts, there is usually about an hour when they are busy getting information on all their patients. This is not the best time to interrupt them for that glass of water.

When a nurse is retrieving medications, do not talk to him or her. Many hospitals actually have a red line painted on the floor around the medication cart, signalling that this is a no-interruption zone. Limiting distractions during this time helps reduce medication errors, which can ultimately impact patients’ survival.

Bring alternate ways for the patient to communicate. A patient might have breathing support that makes it difficult to speak. They may have a sore throat from being intubated. If they’ve had any injury to the brain, their ability to speak may have been damaged. Communication strategies can range from “one finger (or blink) for yes, two for no” to a white board and dry erase marker.

There will be ups and downs…quite a few of them. Patients can have terrible days followed by big improvements, and back again. It’s the nature of the ICU—and of serious illness in general—that there are rapid, often scary changes in status. Remember, it’s a marathon not a sprint. The finish line is often farther away than you think.

This was a really hard one for me: Have compassion. We had healthcare providers who were wonderful and ones who I had to struggle not to slap. Through it all, I tried really hard to be compassionate. Some providers shut themselves off because that’s how they get through their days. Some providers are over-worked, and some, like all of us, are worried about their husband’s job and their broken furnace and their kid’s cough. We are all trying to live our lives, and emergencies don’t actually change that.

Someone still has to buy groceries. If you are supporting a friend or family member with a serious illness, remember that that person’s primary caregiver or caregivers still have to deal with all the same crap we all do in daily life. They run out of toilet paper, the car starts acting up, and someone has to cut the grass. If you don’t know how to help someone going through a major illness or their family, here are some ideas:

Offer to get them gas or buy them a gas card for hospital trips
Visit their family member in the hospital so they can take a break
Do their laundry
Bring a meal
Be their point person and communicate updates to the rest of their family and friends
Go grocery shopping
Offer to help with feeding and/or walking pets
Help with housework or yard work
Offer to perform tasks the ill person typically performed (for adults)
Keep a journal with updates, medical information, etc.—this is both practical and therapeutic
Offer them your spare bedroom if they live far from the hospital

Lastly, I would be remiss if, as a physical therapist, I didn’t mention: Advocate for movement. As soon as a patient is medically stable enough, they should move as much they can tolerate while remaining medically stable. There is sound evidence in support of what’s known as “early mobilization.” Movement can help prevent a host of secondary complications (from skin sores to pneumonia) and it’s amazing for the spirit and mind.

Do you have suggestions for helping people through their ICU experience? Share them in the Comments section below.

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Helping Through the ICU

helping through the ICU