1. Holidays celebrated in the hospital aren’t the worst things.
Sure we hate hospitals the same as everybody else. But when a loved one is admitted for a few days, it can feel like a mini-vacation for the family caregiver. Someone else ― someone who actually knows what they are doing ― is taking care of our patient. We can luxuriate in an evening out with a friend, cook a meal that isn’t salt-free and don’t have to argue with anyone over taking their pills. If our patients have an accident in the middle of the night and need to be changed, we don’t have to be the ones getting up to do it. Hospital stays can be a break for family caregivers. We worry, but there is also an undeniable sense of relief.
When our patients are in the hospital, we are freed from our omnipresent burden of responsibility. Other people get to decide things for awhile.
While a hospitalization over the holidays is not a week in Hawaii, for a stressed-out caregiver, it’s pretty damn close.
2. The only gifts we want are the gifts of your time.
The one thing most caregivers really want is a break from caregiving. They want someone to spring them for an evening and let them go out to a movie. No, of course the replacement caregiver won’t know the subtleties of our patients the way we do. They won’t know that Mike, with Alzheimer’s, isn’t really grinning sheepishly at them. He’s telling them he’s having a bowel movement in his diaper. They won’t understand when mom sundowns ― as the sun sets she becomes more agitated and confused and even become violent. They may not even understand why something out of place sets dad off. He wants water after his meal, not with it, and only in the green cup, not the blue one.
But do this for us anyway. Walk a mile in our shoes for a few hours. And while you are walking, try not to call us unless there is a real emergency.
3. Invite us even if we need to show up stag.
Noah filed his ark two-by-two and ever since, coupledom has been the modus operandi for social events. Can we please just screw that already? Invite those of us who may still be married but have spouses who have vacated the relationship. We still need companionship, conversation, someone’s jokes to laugh at.
The holidays are a time of parties. Don’t leave caregivers off the guest list just because our situation seems grim and depresses you. It depresses us too, but we’d still like the chance to go out and have some fun. How about you just don’t ask us how the stroke recovery is going and we won’t volunteer how often he falls down?
4. We don’t always want to deliver a play-by-play for every new medical hiccup.
People frequently ask me how my husband is doing. Depending on where we are, I sometimes choose not to answer. If I’ve managed to steal away to watch my son’s soccer game, I will thank you for asking and divert my eyes back to the field. If I’m in the grocery line and need to get home, you can have my attention for as long as it takes to bag my order. If I’m at a school function watching my kid get an award, I won’t tolerate you asking me about his dad in front of him on his special night.
Most caregivers learn pretty quickly how to compartmentalize their lives. Your need to know will never trump my need to take a break from thinking about my patient.
Many caregivers I know use websites like Caring Bridge, where they post an update in one place that everyone can see and where concerned friends and relatives can leave messages.
I have a texting group of my closest friends. When I have news to report, I post it there.
5. Few people know the right thing to say.
You are not alone in your stumbling. Death and dying are unpleasant topics. Just don’t make it the caregiver’s job to make you feel comfortable. “Give him my best,” is fine. And if you offer help, for the love of all things holy, please mean it. Make your offer specific. “Do you want me to drive your son to the school bus next week?” I take real exception to those who make broad offers and then recite their oh-so busy schedule to me ― making it clear that they don’t really expect me to take them up on their offer.
By all means, offer; but you damn well better mean it.