A middle-aged woman approached me after a caregiver conference several years ago with a common question. “It upsets me to see my best friend wearing herself out while caring for her husband for dementia,” she said. “What should I do to help her?”
I gave her a glib answer that I now regret. “Just show up,” I said. “Bring a casserole. Maybe coffee and doughnuts.” But in the time that has passed, I’ve heard several family caregivers complain about those unasked-for casseroles from uninvited helpers. “I’ve received so many that I can’t fit any more in my freezer!” exclaimed one.
And during the caregiving I did for my own family members in recent years, I learned that not all “help” is actually helpful — at least not for the stressed caregivers. Sometimes well-intentioned people offered me what they thought I needed — advice or phone numbers for additional services, or boxes of fancy cookies, for example — without really asking me first if that was what I wanted. It left me in the position of having to graciously accept their “help” so they could feel comforted that they were trying to be considerate. In essence, I wound up accommodating them rather than vice versa.
Logistical, financial and especially emotional support are vital to bolstering caregivers who are struggling with extended caregiving. But in order to make a genuine difference, these efforts need to be carefully tailored to the particular caregiver’s circumstances, personality and preferences. That requires prospective helpers to inquire sensitively about caregivers’ needs and to respond flexibly to their wants. It may also mean that helpers commit themselves to handling onerous tasks they wouldn’t have necessarily volunteered to take on — exactly the daily predicament in which most caregivers find themselves. Here are some ideas for providing comfort that’s actually soothing and assistance that’s truly helpful.
Get past “fine.” Too many caregivers answer questions about their well-being with a shrug of the shoulders and a quick “fine.” Even if they are floundering, it is easier to briefly fib than try to explain all they are going through. Most friends will then simply accept that response because they don’t want to pry, but such a perfunctory exchange doesn’t provide the emotional support that caregivers generally need. Instead, you should normalize that caregiving is hard and then offer an invitation for in-depth conversation: “I know other people who have had a difficult time with caregiving. Please let me know if you would ever like to meet or talk on the phone about what this is like for you.” Many caregivers won’t respond to such an invitation at first, and it may have to be periodically renewed. But when they are finally ready to talk, they will know you are willing to hear and support them.
Listen more, advise less. The 1992 classic pop-psych book Men Are From Mars, Women Are From Venus posited that men are problem-solvers and quick to dispense advice, while women are connectors and apt to listen more. But when it comes to helping distressed and weary caregivers, all of us are prone to pushing tips, inspiring stories and resources that we’re sure will lighten their load. For caregivers who seek such advice, this can be helpful. For caregivers who don’t, it is often experienced as an intrusion or, worse, outright criticism of their own caregiving methods. To offer emotional support that’s comforting, just be present and listen. Caregivers will pick your brain if they need direction. Mostly, they will want you to be with them as a trusted witness and confidante.
Time is the greatest gift. Many caregivers have told me that caregiving locks them into whirlwind daily routines of attending to others’ needs. Above all else, they miss time for themselves — to go to the salon or bank, read a book, clean the house or catch up on sleep. The greatest comfort you may offer is the gift of time. Offer to sit with care receivers while caregivers take a break. Pick up supplies for caregivers so they can stay home and relax. Try to make yourself available to listen as often as they need to vent.
Consider accepting all assignments. For some caregivers, hands-on help is the greatest need. They may have ideas for specific tasks you could take on — notions very different from your own. If at all possible, defer to them. Allow them to define what help would be helpful to them. They will be comforted to know that you are trying hard to be responsive. You will be comforted to know that the difference you make is real.