Caregiving Help: How to make it work for you

Sunday night a group of family caregivers came together online to discuss a topic that can make a demonstrable difference in a caregiver’s quality of life: Help. How to know if you need it. How to determine where it would be most useful. How to find it.  For many of the participants, simply admitting that they needed help was a huge hurdle, fostering feelings of inadequacy and guilt. Yet those who have leapt the barrier agree that help is invaluable.

Now, help comes in many flavors, from the friend who listens to your problems to the paid caregivers who enable you to lead a bit of your own life (even if the active translation of leading your own life is simply a decent night’s sleep.) Focusing for the moment on professional help, here is the collected wisdom of the group.

Finding Professional Help

Without question, the hardest part of getting professional help is finding just the right person. This is not so different from finding good child care; you need someone with the right skill set, the right availability, impeccable reliability—and, perhaps most importantly, someone whom the care recipient can connect with. So where do you find these paragons of perfection? Build a network and use it:

  • Tell everyone you know—friends, neighbors, colleagues, fellow parishioner and the guy at the service station down the street—what you are looking for.
  • Use more than one agency or referral network.
  • Ask industry insiders for tips and referrals. Nurses and aides know the truth about which local agencies, adult day cares and homes are good.
  • Ask current caregivers for referrals of colleagues with whom you can build a care team.
  • Don’t be shy about declining someone who just doesn’t seem right. 

Getting started on a good foot

Of course, like any relationship, a good start sets the tone for the rest of the time you are together. It’s worth putting in a little advance work to get it right. For instance:

  • Be strategic. Assuming you can’t just assemble a 24-hour-a-day/7-day-a-week staff, what do you really need help with? Is it a few hours in the afternoon so you can run an errand? Someone to parse the healthcare systems for you, so you are sure you are making the best caregiving decisions? Nighttime caretaking so you can get some sleep? Or maybe you need help with other aspects of your life (like cooking and cleaning), freeing you to provide the care for your loved one. Before you look for help, know what help you want.
  • Be prepared. Compile a written description of the daily routine. Include medications, meal times, activities, and chores. Have the list of emergency contacts and any pertinent paperwork where it is easily accessible. Of course, this is a good idea for you, too.
  • Be safe. Even the most skilled professional doesn’t know your loved one the way you do. And they certainly don't know about the door that sticks or the ferocious dog down the street or any other peculiarities of your living situation.  So along with the detailed list of meds and other care instructions, make a corresponding list of personal and household specifics—the musts and the must nots.
  • Be clear. If this person is working in your home, they are, in many ways, going to become an extension of your household…and little things can drive you crazy. It’s a lot easier to set ground rules from the start than either to constantly reprimand them (certain to end badly) or to swallow your irritation. Do you care if they watch your TV? Is your refrigerator their refrigerator? Is your great-grandmother’s chair off limits? Better speak up now.

Final thoughts

In Sunday night’s chat, several participants echoed their greatest fear—that the help wouldn’t be good enough. And the wisdom of the crowd responded: Will they be as good as you? No. Will they be good enough? Yes. And you have to let go a bit for your own sanity. As one person noted, “It gets easier as I accept that caregiving is my new role—and caregiving is a team sport.”