Taking on caregiving for a parent, spouse or family member can be rewarding, but it’s also challenging—especially if you’re unprepared. With the right knowledge, support, and resources, though, you can provide quality care for your loved one while taking care of yourself. In honor of November’s National Family Caregivers Month, here’s a look at the fundamentals of caregiving, including key duties, expert advice and helpful resources.
Caregiver duties and responsibilities
The role of a caregiver varies based on the needs of the person you’re supporting. Caregiver duties often depend on factors like medical needs, cognitive status, and living arrangements, explains Lili Udell Fiore, a lifelong caregiver and the Caregiving Advisor at JubileeTV. “These factors will greatly impact how much care is needed for any individual.”
Daily activities
Most often, caregivers will be there to help significantly with daily activities. What does that entail? “Bathing and grooming, toileting, feeding and mobility are the basics,” says Jennifer Fink, home care expert for the Alzheimer’s Association. “Activities of daily living also include meal prep and management, shopping, transportation, housekeeping, household finances, household maintenance and more.
Medical care responsibilities
Being a carer also involves medical care. Whether you work with an in-house nurse or do it yourself, Fink says care duties include managing medication, monitoring vital signs, taking care of wounds, and dealing with medical equipment. You’ll also communicate and coordinate with healthcare providers, navigate social services, attend doctor’s visits, and advocate for a loved one’s needs.
Emotional and social support
In addition to day-to-day tasks and medical care, those you’re caring for require love and opportunities for social gatherings. “This can include companionship, emotional support, and social interactions,” says Fink.
Starting as a caregiver: first steps
There are several things to consider when taking over as the primary caregiver, but probably the most important is ensuring all their legal, financial, and medical paperwork are in order.
Crucial documents include their power of attorney for healthcare and finance, a living will or advanced directives, a MOST (Medical Orders for Scope of Treatment) form or COLST (Clinical Orders for Life-Sustaining Treatment) or DNR (Do Not Resuscitate) form, and their legal will, explains Fiore. “Locate these legal documents and check for signatures and to be sure they are legally valid for the state your loved one currently lives in.”
Creating a support system
“Even ‘temporary’ caregiving might not be temporary, and most caregivers burn out at some point because of a lack of options and support,” says Fink, which is why she suggests listing out multiple people in case you require backup.
The best way to do this is to make a list of everyday responsibilities and which tasks need to be done on a certain day. Then, list the people you know and write down the task each person may be suited for (they don’t necessarily have to be close to you to help).
Fink says these lists are helpful when someone says something like, ‘I heard about the person you’re caring for. I’m so sorry. Is there anything I can do to help?’ “By tying a task to a person’s strengths, you won’t be asking more than they’re comfortable handling, and they’re likely to be more willing to help in the future,” she says.
How to talk about being a caregiver
Stepping up to be a caregiver is a rewarding yet overwhelming experience, and “regardless of how it happened or played out, you are the one that they (and your family) trust with their care and overall well-being,” says Fiore.
Fiore emphasizes that the information you have, whether personal, financial, or medical, is not to be repeated to anyone unless they legally have power of attorney for finance or healthcare. That doesn’t mean you can’t talk about what you’re going through. She recommends finding a caregiver support group or a therapist who can act as a sounding board.
Talking about your experiences kindly and realistically without sugarcoating them is also key, adds Fink. She was a caregiver for her mom who had Alzheimer’s and when people asked how her mom was doing, she’d respond with: “As well as can be expected for someone with late-stage Alzheimer’s.” Fink notes it’s important to be honest without being absolutely negative if you can.
Self-care for caregivers
No one could call the caregiving role easy, which is why it’s imperative to pay attention to your own needs as well. “You have to acknowledge and believe that your life matters just as much as the person you’re caring for—maybe more so,” says Fink. “You also need to remind yourself every day that if something happens to you, it affects more than just yourself.”
Fiore adds that getting enough sleep every night, eating at least one healthy meal a day, taking your own medication and supplements on schedule and staying hydrated each day is key to being a caregiver. “If any of these things break down and become neglected, you will have a very hard time staying on top of your own life, not to mention your role as a caregiver.”
Since caregiving is typically a full-time job, there are many ways to do good things for yourself even if you only have a limited amount of time.
- Take a quick walk in nature.
- Read a chapter of a book.
- Doodle a quick picture.
- Get movement in every day.
- Practice meditation or deep breathing to de-stress.
- Spend time with a pet.
- Play your favorite song
- Plan a night out with friends or family (make sure you have coverage when you’re away)
- Check in with yourself daily
What else should first-time caregivers know?
Fink’s first suggestion is to get help lined up early and find ways to enjoy the present with someone with severe needs. Caregiving isn’t a solo journey and the more people who you can count on for support, the better. “Take advantage of all the help and support you can cobble together,” says Fink. “Unfortunately, putting all this in place is another nearly full-time job, which is why most people don’t bother, but using a senior care advisor is a good place to start.
It’s also important to not put your life on hold when you become a caregiver. Being in this role does take a lot of time and effort, but you’ll need to return to your life when caring for someone ends. “You also need other things and people in your life besides caregiving,” says Fink. And “be honest about what you can and can’t do,” as it’ll help both you and the person you’re caring for in the long run.
