The benefits of calling yourself a caregiver

By Linda Pellegrini, M.S., G.N.P., and Angelina Coco, D.N.P., AGNP-C

 

Some people don’t assign the word “caregiver” to their role in helping with aging or chronically ill loved ones. Often the change in the relationship goes unnamed and unacknowledged, even as one person has a physical or cognitive decline and needs assistance.

But talking about your role as a caregiver can be essential for maintaining clear understanding and communication between you and your loved one. By acknowledging the changes that are happening and the increased need for support, you can build a more effective relationship and a more mutually positive experience.

It can be an uncomfortable subject to bring up. If circumstances allow, try to have a series of ongoing conversations with your loved one. Hopefully your talks will get easier over time, but many people who have increased care needs have difficulty talking about the changes they’re experiencing and any independence they’ve lost.

Tell health care providers how you help

The benefits of talking openly about caregiving needs—and using the word “caregiver” to refer to yourself—go beyond your personal relationship with your loved one. The term “caregiver” is easily understood by health care providers and helps open up a conversation that can lead to better care and follow-up resources that benefit you and the person you are caring for.

When we ask patients if they have a caregiver or if anyone takes care of them, most answer the same way: “I take care of myself.”

Asking the question differently can help health care providers get the necessary information:

• “Who helps you with shopping?”
• “Does someone stop by to help with laundry or other household chores such as lawn care or bringing out the trash?”
• “Are you able to get rides to the store, religious services, friends’ homes, medical appointments? Who provides them?”

People are less embarrassed if they can say “My daughter does my food shopping for me, so I don’t have to drive” instead of having to say “I can’t take care of myself anymore.”

Ensure your loved one gets needed care

The social isolation brought on by the COVID-19 pandemic made it more difficult for many of us to remain in close contact and provide necessary care and support for our loved ones during that time. That made it even more important to keep the lines of communication open between you and your loved one—and both of your health care providers.

In our years providing care for older adults, we’ve seen firsthand how helpful it is to understand the ways a patient needs assistance and whether they have a caregiver to provide it. Talking about the care you provide can help ensure your loved one continues to get that care, whether you help with it or someone else does.

• If you accompany your loved one to the hospital or medical appointments, describe what you do for your loved one—and what you can’t or don’t know how to do. The health care providers need to understand the level of support and care your loved one needs.
• It’s important for you to know that the Caregiver Advise, Record, Enable (CARE) Act allows patients to name a caregiver to be the main point of contact while they’re in the hospital.
• The CARE Act also requires hospitals to teach the designated caregiver to do any medical tasks that will need to be done at home.


• If your loved one is hospitalized or goes to a medical appointment alone, it’s important that their health care providers understand the level of care currently provided at home and how much additional support is available.
• Some medical providers may ask conversational questions to find out if anyone helps them with care.
• In other cases, the question may be “Do you have a caregiver?” How would your loved one answer?
• If no one asks, would your loved one bring up their need for help?
• Ask your loved one to carry a wallet card with your contact information, so you can be notified of an emergency.


• If you yourself have a sudden medical situation or are otherwise unable to provide care for your loved one, who will step in? Your medical providers need to know who to alert—in the event you’re not able to contact them yourself.
• When you fill out an “in case of emergency” card for your wallet or to store in your phone, make note of a back-up emergency contact person for your loved one.
• Make sure the person is willing and able, both physically and mentally, to be the back-up emergency contact. Check in with the person periodically to confirm ongoing availability and willingness.


• Let your own medical providers know about your caregiving responsibilities. The added physical and emotional stress of being a caregiver can have an impact on your health. Your health care providers may also be able to direct you to additional resources to help you and your loved one to reduce the level of stress on you.

Are you a caregiver?

You can use other words to describe your role, but the word “caregiver” gives your loved one’s health care providers—and yours—an easy way to understand it and ask the right questions. The health care provider may then be able to refer you to support services and resources in your community.

If you help someone with any of the following tasks, you are a caregiver:

• Providing rides to medical appointments, to social activities or to run errands
• Managing medication by setting up pill organizers, filling and picking up prescriptions, administering medications
• Bathing, showering, brushing teeth
• Maintaining skin, nails and hair
• Managing incontinence
• Ensuring nutrition by grocery shopping, preparing meals, encouraging fluid intake
• Maintaining home by keeping house clutter-free and safe, mowing lawn, raking leaves, shoveling snow
• Housekeeping such as doing laundry, washing dishes, picking up mail, collecting and removing trash
• Providing emotional support, companionship and social opportunities
• Managing finances and legal planning

As you talk with your loved one about shifting roles and responsibilities, think of it as a process. You’re negotiating and then renegotiating the rules of the arrangement, while preserving as much of the person’s independence as possible.

Linda Pellegrini is a Gerontological Nurse Practitioner in the Division of Geriatrics at UMass Memorial Medical Center. Angelina Coco is an Adult–Gerontology Nurse Practitioner practicing in Marlborough, Massachusetts. They’re both members of the “Are you a caregiver” Project, which includes faculty, graduate students, health care providers and eldercare advocates from UMass Worcester’s Graduate School of Nursing, UMass Memorial Medical Center’s Division of Geriatrics and Elder Services of Worcester Area. The Project aims to help people self-identify as caregivers and gain better access to resources and services.