En español | No matter how much you love someone, caregiving can feel like a thankless job. In the early days of my husband’s recovery from a traumatic brain injury, I felt like a reverse Cinderella. The day-to-day drudgery was real, but there was no fancy ball, no glass slipper or promise of life in the castle. My Prince was in pain — needy and diminished. It’s the scenario no one imagines when they utter the vow “for better or worse.”
It’s a gift to be able to ease someone’s suffering in small and great ways. But many people who haven’t experienced a tragedy or serious illness have no concrete idea of the best way to approach someone, what to say or what actions are most impactful. This has nothing to do with intention. Everyone wants to get it right and “do something.” But it’s often hard to know what is appropriate, which can make people anxious.
Gleaned from my own experience and the advice of so many others, the following is my list of things to consider — whether you are caring for the caregiver or approaching a friend going through a difficult time.
Make contact — don’t hold back
When something goes wrong in a friend’s life — whether it is a personal health crisis or a critically ill parent — it’s important to acknowledge what is happening. Take your cues from them, and if a personal visit isn’t approporiate, a heartfelt note is nice. When you do see them in person, try to keep your emotions in check. You don’t want to put them in the position of having to use their precious energy to buck you up.
Make them feel ‘normal'
Try not to ask questions that make people recount the ordeal, or relive an experience that they are momentarily trying to escape. Take your lead from them when it comes to conversation. Some people want to discuss every detail and others want to hear news from the outside world that has nothing to do with the challenges of the medical situation.
Don’t overshare or compare
Resist the urge to share stories about similar illnesses or diseases and other people you know. (“Janie’s mom had a heart attack and she is perfectly fine now!”) Sometimes we feel that these are comforting or hopeful, but they can come off wrong-footed or sometimes be frightening. These kinds of comparisons, although perhaps well-meaning, serve only to magnify or minimize the situation.
Resist the urge to be overly motherly
Don’t repeatedly urge the caregiver to eat or sleep. They cannot. They are operating on adrenaline, especially in the early stages. Food is only fuel, sleep is hard to come by.
And don’t try too hard to pry the caregiver away from the bedside for a bite or a walk around the block. They may not feel like leaving their loved one’s side, and that’s just fine.
Check in without obligation
Don’t expect the patient or caregiver to get back to you by phone or text. All of their energy right now is focused on themselves (if they are the patient) or their loved one and other family members. If you feel the need to reach out to them in the midst of the crisis, leave a message that begins with “You don’t need to call/text me back, I just wanted you to know I’m thinking of you.”
Acknowledge the pain
Don’t be afraid to acknowledge the person’s pain, if appropriate. It’s OK to say: “This stinks, but I’m here every step of the way.” The most helpful comments you can make involve letting the patient know they are heard.
Resist the urge to tell the person “you are so strong.” They don’t always feel strong, and they don’t want to have to act strong in front of you or hold back tears so as not to disappoint your expectations or impressions of them.
Food is a practical gift
Everyone needs to eat, and meal prep is just one more thing to do in a day. Food can also be shared with the hospital staff as a “thank you.” Also, consider practical gifts like pajamas, a nice soap, a new toothbrush or slippers. A set of thank-you notes is a practical and helpful gift in the early days of a crisis or medical situation.
Don’t forget the months after
The gift of a meal out of the blue, long after the initial crisis has passed, is one of the nicest things you can do for a friend or loved one. This is the period of time when most caregivers are still dealing with issues and fatigue, and the adrenaline has left. This holds true for flowers, too. One friend sent me a bouquet two months after Bob’s injury, and it brightened up my entire week instead of being something lost in the blur of the adrenaline. The gesture reminded me that people were still thinking of us.
Be sensitive regarding spirituality
Try not to use pat phrases like “God doesn’t give you more than you can handle,” or “Things happen for a reason.” People don’t want to feel like Job or wonder why God chose them for this special hell. Also, keep in mind that while spiritual comfort is always well-intended and can be very comforting for some, it may come off as intrusive or overly personal for others.
Do your homework on how to help
Don’t ask the patient or caregiver to call you if they need anything. That puts the burden of asking on them. Instead, pick something specific: a ride for the kids or a sleepover, a dinner brought to the house (without serving dishes that need to be returned), cutting the lawn or walking the dog. Do your homework on what their needs are in their daily life and make decisions for them on the little things (chicken or fish) as much as possible.
Subscribe to the ‘chit system’
In the midst of our family’s crisis, a wise friend told me to subscribe to the “chit system.” During the time when people are asking how to help, tell everyone they have one chit and that at some point in time, you will ask them for a favor. It could be as simple as bringing over a pizza or running an errand, or as complicated as dropping everything to come to the bedside. This both enables the friends who want to help and also prevents the caregiver from feeling as if they are asking for too many favors.